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AM I CRAZY? Newly-diagnosed Stage IIIc needs advice for next steps

Forums General Melanoma Community AM I CRAZY? Newly-diagnosed Stage IIIc needs advice for next steps

  • Post
    goldfidler
    Participant

      42-year old male. Stage IIIC, pT4b, pN2b, Mx.

      Otherwise healthy and energetic.  No symptons or signs of illness. 

       

      Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot.  After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

      42-year old male. Stage IIIC, pT4b, pN2b, Mx.

      Otherwise healthy and energetic.  No symptons or signs of illness. 

       

      Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot.  After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

      11 days ago, I received a Transmetatarsal amputation (TMA) on my right foot.  At the same time, I received a Sentinel Node Biopsy (SNB) on my right groin.  I just learned that 3 of 5 nodes were positive. 

      Yesterday, the doctor recommended that I get a groin dissection on my right thigh.  Once this is completed, then he would recommend me for a trial study, probably interferon.  

      HERE IS MY QUESTION

      I would like to hear from others with melanoma who have had positive SNBs.  Does everyone simply then progress to having the groin dissection?  I am crazy to not get the groin dissection?  I am crazy to not want to move forward with the trial with interferon?  What other options are out there?

      It has literally been less than 24 hours for me to process this information so I am still in that manic decision state.  I am scheduled for the groin dissection on Sept 11th but am seriously considering not having this operation.  My foot is still healing from the TMA.  My inner thigh is still healing from the SNB.  Other than these surgeries, I have high energy levels and zero symptons of sickness.  From what I have read and been told, the groin dissection does not necessarily guarantee anything, other than lymphoedema and a longer physical recovery.  And I don't have to explain interferon to this group. 

      I would truly appreciate any and all comments about your thoughts on my situation. 

      Thank you very much,

      Matt

    Viewing 45 reply threads
    • Replies
        JC
        Participant

          this conversation thread might help shed some light on the thought process

           

          http://forum.melanomainternational.org/mif/viewtopic.php?f=64&t=34535

           

          JC
          Participant

            this conversation thread might help shed some light on the thought process

             

            http://forum.melanomainternational.org/mif/viewtopic.php?f=64&t=34535

             

              Cindy VT
              Participant

                To take interferon for your family is really crazy.  I was given high dose for 4 or 5 days I can't remember becasue it messed with my brain.  And I think it is the problem for most of my immune issues I have now after I took it.  I'm Stage IIIB.  and I'm 29 years out.  My recurrence was in 2006.  After the interferon disaster I did nothing, except some herbal detox and organic diet.  I'm still here.

                Cindy VT
                Participant

                  To take interferon for your family is really crazy.  I was given high dose for 4 or 5 days I can't remember becasue it messed with my brain.  And I think it is the problem for most of my immune issues I have now after I took it.  I'm Stage IIIB.  and I'm 29 years out.  My recurrence was in 2006.  After the interferon disaster I did nothing, except some herbal detox and organic diet.  I'm still here.

                  Cindy VT
                  Participant

                    To take interferon for your family is really crazy.  I was given high dose for 4 or 5 days I can't remember becasue it messed with my brain.  And I think it is the problem for most of my immune issues I have now after I took it.  I'm Stage IIIB.  and I'm 29 years out.  My recurrence was in 2006.  After the interferon disaster I did nothing, except some herbal detox and organic diet.  I'm still here.

                  JC
                  Participant

                    this conversation thread might help shed some light on the thought process

                     

                    http://forum.melanomainternational.org/mif/viewtopic.php?f=64&t=34535

                     

                    goldfidler
                    Participant

                      thank you for sharing this link.  I reposted my info on the other site, in order to keep the similar conversation in one place. 

                      I appreciate you taking the time to send this link to me. 

                      Good luck to you!

                      POW
                      Participant

                        If you are considered "high risk" for recurrence, you should probably have the CLND. If you are "low risk", a CLND might not be necessary. Most people are in between so it's a tough call.

                        If I were you, I would get a second opinion at a major melanoma specialty center. It used to be that CLND was all they could do for people with Stage III melanoma, but recently some clilnical trials have started for Stage III (as you know) so that might be a viable option. So I suggest that you get a second opinion at a melanoma specialty center before making your decision.

                        In the meanwhile, it would help us to help you if we knew more about your original pathology report. Could you tell us what was the Brelow depth, the level of invasion and the mitotic index of our original lesion? And how big were the melanoma tumors in your lymph nodes? Less than 0.1 mm or larger? 

                         

                        POW
                        Participant

                          If you are considered "high risk" for recurrence, you should probably have the CLND. If you are "low risk", a CLND might not be necessary. Most people are in between so it's a tough call.

                          If I were you, I would get a second opinion at a major melanoma specialty center. It used to be that CLND was all they could do for people with Stage III melanoma, but recently some clilnical trials have started for Stage III (as you know) so that might be a viable option. So I suggest that you get a second opinion at a melanoma specialty center before making your decision.

                          In the meanwhile, it would help us to help you if we knew more about your original pathology report. Could you tell us what was the Brelow depth, the level of invasion and the mitotic index of our original lesion? And how big were the melanoma tumors in your lymph nodes? Less than 0.1 mm or larger? 

                           

                          POW
                          Participant

                            If you are considered "high risk" for recurrence, you should probably have the CLND. If you are "low risk", a CLND might not be necessary. Most people are in between so it's a tough call.

                            If I were you, I would get a second opinion at a major melanoma specialty center. It used to be that CLND was all they could do for people with Stage III melanoma, but recently some clilnical trials have started for Stage III (as you know) so that might be a viable option. So I suggest that you get a second opinion at a melanoma specialty center before making your decision.

                            In the meanwhile, it would help us to help you if we knew more about your original pathology report. Could you tell us what was the Brelow depth, the level of invasion and the mitotic index of our original lesion? And how big were the melanoma tumors in your lymph nodes? Less than 0.1 mm or larger? 

                             

                            sbrooks90
                            Participant

                              Hey Matt,

                              This is pretty similar to my case except that I am 23 and had the melanoma on my right leg instead of foot. I had 1 node positive from the SLNB and there was not much spread in that lymph node. So my Melanoma Surgeon recommended that I have the Groin Node Dissection and I accepted. (I believe this is the best precaution to get the disease out of my system at this point). My surgery too is scheduled for….. you guessed it 9/11 LOL. 

                              I personally would recommend this as you and I both do not know how much more disease we have in our Lymph Nodes. Anyway ultimately the decision is yours and I wish you the best of luck with whatever you do.

                              As for the interferon treatment…. I have yet to come to a conclusion about that one. Lots of mixed reviews with it.

                              Samuel

                              sbrooks90
                              Participant

                                Hey Matt,

                                This is pretty similar to my case except that I am 23 and had the melanoma on my right leg instead of foot. I had 1 node positive from the SLNB and there was not much spread in that lymph node. So my Melanoma Surgeon recommended that I have the Groin Node Dissection and I accepted. (I believe this is the best precaution to get the disease out of my system at this point). My surgery too is scheduled for….. you guessed it 9/11 LOL. 

                                I personally would recommend this as you and I both do not know how much more disease we have in our Lymph Nodes. Anyway ultimately the decision is yours and I wish you the best of luck with whatever you do.

                                As for the interferon treatment…. I have yet to come to a conclusion about that one. Lots of mixed reviews with it.

                                Samuel

                                sbrooks90
                                Participant

                                  Hey Matt,

                                  This is pretty similar to my case except that I am 23 and had the melanoma on my right leg instead of foot. I had 1 node positive from the SLNB and there was not much spread in that lymph node. So my Melanoma Surgeon recommended that I have the Groin Node Dissection and I accepted. (I believe this is the best precaution to get the disease out of my system at this point). My surgery too is scheduled for….. you guessed it 9/11 LOL. 

                                  I personally would recommend this as you and I both do not know how much more disease we have in our Lymph Nodes. Anyway ultimately the decision is yours and I wish you the best of luck with whatever you do.

                                  As for the interferon treatment…. I have yet to come to a conclusion about that one. Lots of mixed reviews with it.

                                  Samuel

                                  goldfidler
                                  Participant

                                    Hi POW…

                                    Thank you for your response. 

                                    I think it is safe to say that I am in the high risk group so there is no "in-between" with me.  I recognize that this diagnosis does not hold a long future for me.  My biggest concern now is the quality and duration of life now versus having repeated surgeries for that hope of the 1% success rate. 

                                    I am using the Cancer Center at St Lukes in Bethlehem, PA.  Dr. Agarwala is supposedly a world-renowned specialist in melanoma. 

                                    On the original lesion/tumor on my foot, the maximum thickness exceeded 4mm and mitotic index was 8 mm2.  The two largest tumor deposits were 3.5mm and 3.5mm. 

                                    I hope this helps…

                                    goldfidler
                                    Participant

                                      Sorry to hear about your situation and I appreciate your response.  

                                      I am dealing with the situation of 3 of 5 nodes, with 3.5mm and 6.5mm in two of the nodes.  I guess this puts me in that "high-risk" category.  I guess my concern is that because I am already at "high-risk" and the primary tumor in my foot was undiagnosed for at least 24 months, I am concerned that this groin dissection will simply be the next surgery in a long list of future surgeries which will not prevent future cancer from appearing. 

                                      You are younger than I am have many, many years ahead of you.  I wish you well in your surgery and will keep the board posted as to my next steps. 

                                      Thanks again and good luck to you.

                                      MaryD
                                      Participant

                                        Hi Matt,

                                        As a stage IV survivor (diagnosed 12 years ago and currently free of disease going on 5 years), I would highly advise you get the groin dissection.    Unfortunately melanoma is not a disease you can trust nor is it predictable so the more proactive the better – just my opinion and experience.

                                        I checked out the clinical trials at St. Lukes and see that they have the Interfereon versus Yervoy trial:

                                        ECOG
                                        1609

                                        A Phase III Randomized Study of Adjuvant Ipilimimab Anti-CTLA4 Therapy vs. High-Dose Interferon Alpha-2b for Resected High Risk Melanoma

                                         

                                        This would be another option for you and you would be randomized into either the interfron or Yervoy group – something to think about discussing with your doctor.   Every patient makes different choices, but you can fight this disease and as you can see from this board, many of us are doing just that.

                                        Lots to think about, I know, and I wish you the best with your decision.

                                        Mary

                                        MaryD
                                        Participant

                                          Hi Matt,

                                          As a stage IV survivor (diagnosed 12 years ago and currently free of disease going on 5 years), I would highly advise you get the groin dissection.    Unfortunately melanoma is not a disease you can trust nor is it predictable so the more proactive the better – just my opinion and experience.

                                          I checked out the clinical trials at St. Lukes and see that they have the Interfereon versus Yervoy trial:

                                          ECOG
                                          1609

                                          A Phase III Randomized Study of Adjuvant Ipilimimab Anti-CTLA4 Therapy vs. High-Dose Interferon Alpha-2b for Resected High Risk Melanoma

                                           

                                          This would be another option for you and you would be randomized into either the interfron or Yervoy group – something to think about discussing with your doctor.   Every patient makes different choices, but you can fight this disease and as you can see from this board, many of us are doing just that.

                                          Lots to think about, I know, and I wish you the best with your decision.

                                          Mary

                                          MaryD
                                          Participant

                                            Hi Matt,

                                            As a stage IV survivor (diagnosed 12 years ago and currently free of disease going on 5 years), I would highly advise you get the groin dissection.    Unfortunately melanoma is not a disease you can trust nor is it predictable so the more proactive the better – just my opinion and experience.

                                            I checked out the clinical trials at St. Lukes and see that they have the Interfereon versus Yervoy trial:

                                            ECOG
                                            1609

                                            A Phase III Randomized Study of Adjuvant Ipilimimab Anti-CTLA4 Therapy vs. High-Dose Interferon Alpha-2b for Resected High Risk Melanoma

                                             

                                            This would be another option for you and you would be randomized into either the interfron or Yervoy group – something to think about discussing with your doctor.   Every patient makes different choices, but you can fight this disease and as you can see from this board, many of us are doing just that.

                                            Lots to think about, I know, and I wish you the best with your decision.

                                            Mary

                                            Phil S
                                            Participant
                                              Matt, You have to FIGHT melanoma with every tool you have, I too would do the groin surgery, and any other surgery you can do in the future to combat this disease. Battling melanoma is NOT a one round fight, you hope it’s a long, hard, bitter war until the end, and that you get years of GOOD times mixed in between rounds. My husband has had his original surgery, one year of interferon, lung surgery, brain surgery, WBR, six round of inpatient biochemo, and the TIL trial in his less than four year fight. But, he has also gotten our kids thru three more school years, seen both their First Communions, taken a Disney cruise, been on several other wonderful vacation trips, seen their gym and TKD competitions, and tugged them into bed regularly. He has made a zillion wonderful memories, and if and when, we have to fight again, we WILL.
                                              Every decision with melanoma is an individual one, so ultimately you have to make the call, but just know that it can be fought around living life. The very, very best to you, we all know it’s scary! But, melanoma treatment is changing and improving all the time. God Bless, Valerie (Phil’s wife)
                                              JerryfromFauq
                                              Participant

                                                Exercises for lymph system

                                                There is no heart to pump the lymph fluid thru the body.  Movement of our muscles is what pumps the fluid up to where the lymph system joins the blood system.

                                                Has the removed tumor material been checked for oncoprotein over expression or DNA mutations?  Tumors on the feet may be acral lentigamous melanoma which is likely to have c-kit mutations.  If  one has c-kit mutations there are several targeted chemos that may be effective. I've been stable on one for the past four years Been Stage IV melanoma since 2007. 

                                                What did the PET/CT show for the groin outside of that you had damaged tissue from the SNB? Might would be more interested in what the CT portion shows than the PET.

                                                After 3 !/2 years of misdiagnosis by my PCP, I had substantial groin spread to the inguinal and iliac groin nodes inside and outside the omentum.  After a 7 hour operation one side of my abdomen is 2  inches narrower than the other.  In less than a month after my major groin operation x-rays/CT's showed that I now had visible tumors appearing in my lungs.  With the long term side effects of the interferon treatment I was going to refuse it when found I was really stage IV.  I then went directly to IL-2, which stopped the tumors in my liver and stabilized my innumerable lung tumors for 20 months.  Gleevec has held my melanoma essentially stable now for 4 1/2 years.  I have had no problem with the possible lymphedema.

                                                Are they talking a complete lumpectomy or partial?  There are studies going on to investigate if partials, rather than complete will still contain spread equally while causing less lymphedema.  The partial makes the most sense to me.

                                                 

                                                Are your thought crazy?  No, they are normal.  Watch and wait has historically ben the standard Stage III treatment if one either did not want or could not tolerate the year long interferon with its side effects and low success rate.  The younger     one is, the better one seems to tolerate the side effects.

                                                JerryfromFauq
                                                Participant

                                                  Exercises for lymph system

                                                  There is no heart to pump the lymph fluid thru the body.  Movement of our muscles is what pumps the fluid up to where the lymph system joins the blood system.

                                                  Has the removed tumor material been checked for oncoprotein over expression or DNA mutations?  Tumors on the feet may be acral lentigamous melanoma which is likely to have c-kit mutations.  If  one has c-kit mutations there are several targeted chemos that may be effective. I've been stable on one for the past four years Been Stage IV melanoma since 2007. 

                                                  What did the PET/CT show for the groin outside of that you had damaged tissue from the SNB? Might would be more interested in what the CT portion shows than the PET.

                                                  After 3 !/2 years of misdiagnosis by my PCP, I had substantial groin spread to the inguinal and iliac groin nodes inside and outside the omentum.  After a 7 hour operation one side of my abdomen is 2  inches narrower than the other.  In less than a month after my major groin operation x-rays/CT's showed that I now had visible tumors appearing in my lungs.  With the long term side effects of the interferon treatment I was going to refuse it when found I was really stage IV.  I then went directly to IL-2, which stopped the tumors in my liver and stabilized my innumerable lung tumors for 20 months.  Gleevec has held my melanoma essentially stable now for 4 1/2 years.  I have had no problem with the possible lymphedema.

                                                  Are they talking a complete lumpectomy or partial?  There are studies going on to investigate if partials, rather than complete will still contain spread equally while causing less lymphedema.  The partial makes the most sense to me.

                                                   

                                                  Are your thought crazy?  No, they are normal.  Watch and wait has historically ben the standard Stage III treatment if one either did not want or could not tolerate the year long interferon with its side effects and low success rate.  The younger     one is, the better one seems to tolerate the side effects.

                                                  JerryfromFauq
                                                  Participant

                                                    Exercises for lymph system

                                                    There is no heart to pump the lymph fluid thru the body.  Movement of our muscles is what pumps the fluid up to where the lymph system joins the blood system.

                                                    Has the removed tumor material been checked for oncoprotein over expression or DNA mutations?  Tumors on the feet may be acral lentigamous melanoma which is likely to have c-kit mutations.  If  one has c-kit mutations there are several targeted chemos that may be effective. I've been stable on one for the past four years Been Stage IV melanoma since 2007. 

                                                    What did the PET/CT show for the groin outside of that you had damaged tissue from the SNB? Might would be more interested in what the CT portion shows than the PET.

                                                    After 3 !/2 years of misdiagnosis by my PCP, I had substantial groin spread to the inguinal and iliac groin nodes inside and outside the omentum.  After a 7 hour operation one side of my abdomen is 2  inches narrower than the other.  In less than a month after my major groin operation x-rays/CT's showed that I now had visible tumors appearing in my lungs.  With the long term side effects of the interferon treatment I was going to refuse it when found I was really stage IV.  I then went directly to IL-2, which stopped the tumors in my liver and stabilized my innumerable lung tumors for 20 months.  Gleevec has held my melanoma essentially stable now for 4 1/2 years.  I have had no problem with the possible lymphedema.

                                                    Are they talking a complete lumpectomy or partial?  There are studies going on to investigate if partials, rather than complete will still contain spread equally while causing less lymphedema.  The partial makes the most sense to me.

                                                     

                                                    Are your thought crazy?  No, they are normal.  Watch and wait has historically ben the standard Stage III treatment if one either did not want or could not tolerate the year long interferon with its side effects and low success rate.  The younger     one is, the better one seems to tolerate the side effects.

                                                    goldfidler
                                                    Participant

                                                      You and your husband are so strong.  You are both true warriors.  I just don't know if I have this fight in me.  Maybe I am just too confused or overwhelmed right now.  it was literally 24 hours ago that I received the news about the positive SNB.  I am just trying to get my arms around it. 

                                                      I truly appreciate your message.  Your strength and courage give strength and courage to others. 

                                                      Thank you…

                                                      BrianP
                                                      Participant

                                                        Hey Matt,

                                                        Sorry you are having to go through this.  That's great that you are being seen at a cancer center by a melanoma specialist.

                                                        I assume you are NED (No Evidence of Disease) with or without the groin disection.  That's the good news but unfortunately it makes your treatment options tougher.  I think the interferon vs. IPI trial is a pretty good option if you get the IPI arm.  If you get the interferon arm then maybe not so much.  I'm not up to speed on the trials for Stage III NED patients but if I were you I would do my own research on clinicaltrials.gov.  There are some vaccine options out there for Stage IV NED but I'm not sure about stage IIIers.  My experience has been that even melanoma specialist at cancer centers aren't always familar with what trials are going on at other places.  The melanoma foundation also offers a service free of charge where they will help you research trials based on your conditions. 

                                                        Best of luck to you,

                                                        Brian

                                                        BrianP
                                                        Participant

                                                          Hey Matt,

                                                          Sorry you are having to go through this.  That's great that you are being seen at a cancer center by a melanoma specialist.

                                                          I assume you are NED (No Evidence of Disease) with or without the groin disection.  That's the good news but unfortunately it makes your treatment options tougher.  I think the interferon vs. IPI trial is a pretty good option if you get the IPI arm.  If you get the interferon arm then maybe not so much.  I'm not up to speed on the trials for Stage III NED patients but if I were you I would do my own research on clinicaltrials.gov.  There are some vaccine options out there for Stage IV NED but I'm not sure about stage IIIers.  My experience has been that even melanoma specialist at cancer centers aren't always familar with what trials are going on at other places.  The melanoma foundation also offers a service free of charge where they will help you research trials based on your conditions. 

                                                          Best of luck to you,

                                                          Brian

                                                          BrianP
                                                          Participant

                                                            Hey Matt,

                                                            Sorry you are having to go through this.  That's great that you are being seen at a cancer center by a melanoma specialist.

                                                            I assume you are NED (No Evidence of Disease) with or without the groin disection.  That's the good news but unfortunately it makes your treatment options tougher.  I think the interferon vs. IPI trial is a pretty good option if you get the IPI arm.  If you get the interferon arm then maybe not so much.  I'm not up to speed on the trials for Stage III NED patients but if I were you I would do my own research on clinicaltrials.gov.  There are some vaccine options out there for Stage IV NED but I'm not sure about stage IIIers.  My experience has been that even melanoma specialist at cancer centers aren't always familar with what trials are going on at other places.  The melanoma foundation also offers a service free of charge where they will help you research trials based on your conditions. 

                                                            Best of luck to you,

                                                            Brian

                                                            sharebear
                                                            Participant

                                                              I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                              sharebear
                                                              Participant

                                                                I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                                goldfidler
                                                                Participant

                                                                  Thank you so much, Mary.  Your input and experience is very appreciated.  I am just trying to figure all of this out.  it has literally been 24 hours since I was informed about the positive SNB.  I just need to process it all.  Thank you again1

                                                                  goldfidler
                                                                  Participant

                                                                    Shera…

                                                                    Thank you so much for sharing your story.  What an adventure this has been for you and your family.  It gives me hope to hear about your situation.  It makes me challenge my thoughts and try to summon the courage to make the difficult decisions.  After reading some of these stories, I actually feel weak.  There are some many soldiers here, fighting the fight, day in and day out.  And I am whining about a little groin surgery.  I am sure there are many others who would be happy to trade places with me. 

                                                                    Thank you again for your words.  They truly mean a lot to me.  Thank you!

                                                                    goldfidler
                                                                    Participant

                                                                      Hi Brian….

                                                                      Thank you for the guidance.  As you can imagine, the last 24 hours have been a whirlwind for me.  I am digesting so much information and even getting better with all of the acronyms (SNB, TMA, NED).  I am definitely going to research clinical trials but that is still some time away for me. 

                                                                      As you mention, right now I am 100% NED.  If my foot would not have hurt, I would have never gone to the hospital.  That day seems like 8 weeks and 20 lifetimes ago.  My next decision is whether to proceed with the groin dissection or not.  Given how I feel, there might be 1-2 nodes with something in them but have not fully developed yet.  It seems that my best bet is to remove them now while I actually am healthy.  My primary concerns with that operation are recovery time and lymphedema.  It almost seems so petty to write it but I want to be active again.  I want to move around and at least be able to take a walk.  The idea of more surgery, more bed rest, more recovery time, etc. is just overpowering me right now.  And since the TMA and SNB, I have already experienced some leg swelling and fluid retention.  From what I can see, the groin dissection is going to be even more invasive, with an even longer recovery, and even higher probability of lymphedema. 

                                                                      It is just so much to process in 24 hours.  Maybe I need to just watch some re-runs for a day and think more about it later.  My groin dissection is scheduled for Sept 11th.  I have some more time to think about it. 

                                                                      Thank you again.  I truly mean it.  Everyone on this discussion forum has been so helpful and genuine.  It has been a wonderful thing to find this group to share my thoughts and concerns.  And to hear from people who have really been through it, not just from a doctor who studied it.  It is a much different set a fellings when you are on the other end of the scalpal. 

                                                                      I wish you the best in your efforts.  May we all end up on the good side of this…..

                                                                      Matt

                                                                      Phil S
                                                                      Participant
                                                                        Matt, I just want you to know that my husband and I were in complete and utter shock and disbelief when he was first diagnosed and treated. It took us both several months to come to terms with the reality that our lives would have to revolve around cancer forever. That our children would know more about cancer, radiation, surgeries, and chemo than any child should ever know. We thought, felt, and acted just like you are doing right now. We were scared, confused, upset, sad, and tired. So, my best advice, Give yourself time to absorb everything, people are not instantly resilient, strong, or courgeous! They become those things after the challenges are presented to them and they face them one at a time. You can FIGHT this disease, and we are here to support you. Keep us posted, Valerie (Phil’s wife)
                                                                        Cindy VT
                                                                        Participant

                                                                          I'm living 29 years with this disease.  I'm Stage III B.  I had two surgery's for the tumor and lymph glands but that was in 2006 and then I did 1 week of high dose interferon.  I wouldn't recommend it, but everyone else does.  I stopped all other treatment except for herbal detox, and organic diet.  I have h ad many set backs but my body still seems to fight it .

                                                                          My first experience with the disease was in 1984. 

                                                                          Good luck with whatever you do.  Best Wishes.

                                                                          Cindy VT
                                                                          Participant

                                                                            I'm living 29 years with this disease.  I'm Stage III B.  I had two surgery's for the tumor and lymph glands but that was in 2006 and then I did 1 week of high dose interferon.  I wouldn't recommend it, but everyone else does.  I stopped all other treatment except for herbal detox, and organic diet.  I have h ad many set backs but my body still seems to fight it .

                                                                            My first experience with the disease was in 1984. 

                                                                            Good luck with whatever you do.  Best Wishes.

                                                                            Cindy VT
                                                                            Participant

                                                                              I'm living 29 years with this disease.  I'm Stage III B.  I had two surgery's for the tumor and lymph glands but that was in 2006 and then I did 1 week of high dose interferon.  I wouldn't recommend it, but everyone else does.  I stopped all other treatment except for herbal detox, and organic diet.  I have h ad many set backs but my body still seems to fight it .

                                                                              My first experience with the disease was in 1984. 

                                                                              Good luck with whatever you do.  Best Wishes.

                                                                              johnbil
                                                                              Participant

                                                                                Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

                                                                                Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

                                                                                Just my experiences/opinions.

                                                                                Cheers!

                                                                                John

                                                                                johnbil
                                                                                Participant

                                                                                  Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

                                                                                  Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

                                                                                  Just my experiences/opinions.

                                                                                  Cheers!

                                                                                  John

                                                                                  johnbil
                                                                                  Participant

                                                                                    Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

                                                                                    Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

                                                                                    Just my experiences/opinions.

                                                                                    Cheers!

                                                                                    John

                                                                                    Cynthia C
                                                                                    Participant

                                                                                      Hi Matt,

                                                                                      My name is Cynthia. T3bN2aM0(x). This sentence "I recognize that this diagnosis does not hold a long future for me." in one of your posts hit me like a ton of bricks. Those were my words 12 YEARS ago. I had foolishly let this lesion thing on my leg grow, change, and bleed for a year before I got it looked at. The surgeon did a complete lymph node dissection at the time of the sentinel node biopsy and wide excision. The frozen section showed melanoma in two of three nodes so he just took them all. Interferon was the only treatment offered to me. I lasted for 8 doses and have had no other treatment. Do I have lymphedema? Yes. Was it worth it? Yes. I would get the groin dissection. My advice would be to take it easy (easier than you want to) after the surgery as you slowly come back to your prior physical shape. Get a custom measured full length stocking to wear as soon as possible. I wish I had. Yes there is a chance there will be more surgeries in your future but as you can see there are alot of beautiful, vibrant people living a great life with Stage IV. There is also a chance it won't go any further. I will keep you in my thoughts and prayers. Please keep us posted.

                                                                                      Cynthia C
                                                                                      Participant

                                                                                        Hi Matt,

                                                                                        My name is Cynthia. T3bN2aM0(x). This sentence "I recognize that this diagnosis does not hold a long future for me." in one of your posts hit me like a ton of bricks. Those were my words 12 YEARS ago. I had foolishly let this lesion thing on my leg grow, change, and bleed for a year before I got it looked at. The surgeon did a complete lymph node dissection at the time of the sentinel node biopsy and wide excision. The frozen section showed melanoma in two of three nodes so he just took them all. Interferon was the only treatment offered to me. I lasted for 8 doses and have had no other treatment. Do I have lymphedema? Yes. Was it worth it? Yes. I would get the groin dissection. My advice would be to take it easy (easier than you want to) after the surgery as you slowly come back to your prior physical shape. Get a custom measured full length stocking to wear as soon as possible. I wish I had. Yes there is a chance there will be more surgeries in your future but as you can see there are alot of beautiful, vibrant people living a great life with Stage IV. There is also a chance it won't go any further. I will keep you in my thoughts and prayers. Please keep us posted.

                                                                                        Cynthia C
                                                                                        Participant

                                                                                          Hi Matt,

                                                                                          My name is Cynthia. T3bN2aM0(x). This sentence "I recognize that this diagnosis does not hold a long future for me." in one of your posts hit me like a ton of bricks. Those were my words 12 YEARS ago. I had foolishly let this lesion thing on my leg grow, change, and bleed for a year before I got it looked at. The surgeon did a complete lymph node dissection at the time of the sentinel node biopsy and wide excision. The frozen section showed melanoma in two of three nodes so he just took them all. Interferon was the only treatment offered to me. I lasted for 8 doses and have had no other treatment. Do I have lymphedema? Yes. Was it worth it? Yes. I would get the groin dissection. My advice would be to take it easy (easier than you want to) after the surgery as you slowly come back to your prior physical shape. Get a custom measured full length stocking to wear as soon as possible. I wish I had. Yes there is a chance there will be more surgeries in your future but as you can see there are alot of beautiful, vibrant people living a great life with Stage IV. There is also a chance it won't go any further. I will keep you in my thoughts and prayers. Please keep us posted.

                                                                                          Roxy1453
                                                                                          Participant
                                                                                            Hi Matt. I totally understand how you’re feeling right now! I found out Tues that mine is back and I’m trying to decide how to handle this.

                                                                                            I have been going through this since 2006. What I do know is that a positive attitude goes a long way! I also have a lot of people praying for me! It makes a difference!

                                                                                            I am in the middle of my own little pity party and I hope to soon get back “on the horse” and keep fighting!

                                                                                            You can do this, it won’t be easy!

                                                                                            Praying for you!

                                                                                            Nancy

                                                                                            Roxy1453
                                                                                            Participant
                                                                                              Hi Matt. I totally understand how you’re feeling right now! I found out Tues that mine is back and I’m trying to decide how to handle this.

                                                                                              I have been going through this since 2006. What I do know is that a positive attitude goes a long way! I also have a lot of people praying for me! It makes a difference!

                                                                                              I am in the middle of my own little pity party and I hope to soon get back “on the horse” and keep fighting!

                                                                                              You can do this, it won’t be easy!

                                                                                              Praying for you!

                                                                                              Nancy

                                                                                              Roxy1453
                                                                                              Participant
                                                                                                Hi Matt. I totally understand how you’re feeling right now! I found out Tues that mine is back and I’m trying to decide how to handle this.

                                                                                                I have been going through this since 2006. What I do know is that a positive attitude goes a long way! I also have a lot of people praying for me! It makes a difference!

                                                                                                I am in the middle of my own little pity party and I hope to soon get back “on the horse” and keep fighting!

                                                                                                You can do this, it won’t be easy!

                                                                                                Praying for you!

                                                                                                Nancy

                                                                                                Maureen038
                                                                                                Participant

                                                                                                  My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                  Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                  Maureen038
                                                                                                  Participant

                                                                                                    My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                    Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                    Phyllis in IA
                                                                                                    Participant

                                                                                                      Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

                                                                                                      Phyllis 

                                                                                                      Phyllis in IA
                                                                                                      Participant

                                                                                                        Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

                                                                                                        Phyllis 

                                                                                                        Phyllis in IA
                                                                                                        Participant

                                                                                                          Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

                                                                                                          Phyllis 

                                                                                                          goldfidler
                                                                                                          Participant

                                                                                                            thank you for sharing this link.  I reposted my info on the other site, in order to keep the similar conversation in one place. 

                                                                                                            I appreciate you taking the time to send this link to me. 

                                                                                                            Good luck to you!

                                                                                                            goldfidler
                                                                                                            Participant

                                                                                                              thank you for sharing this link.  I reposted my info on the other site, in order to keep the similar conversation in one place. 

                                                                                                              I appreciate you taking the time to send this link to me. 

                                                                                                              Good luck to you!

                                                                                                              goldfidler
                                                                                                              Participant

                                                                                                                Hi POW…

                                                                                                                Thank you for your response. 

                                                                                                                I think it is safe to say that I am in the high risk group so there is no "in-between" with me.  I recognize that this diagnosis does not hold a long future for me.  My biggest concern now is the quality and duration of life now versus having repeated surgeries for that hope of the 1% success rate. 

                                                                                                                I am using the Cancer Center at St Lukes in Bethlehem, PA.  Dr. Agarwala is supposedly a world-renowned specialist in melanoma. 

                                                                                                                On the original lesion/tumor on my foot, the maximum thickness exceeded 4mm and mitotic index was 8 mm2.  The two largest tumor deposits were 3.5mm and 3.5mm. 

                                                                                                                I hope this helps…

                                                                                                                goldfidler
                                                                                                                Participant

                                                                                                                  Hi POW…

                                                                                                                  Thank you for your response. 

                                                                                                                  I think it is safe to say that I am in the high risk group so there is no "in-between" with me.  I recognize that this diagnosis does not hold a long future for me.  My biggest concern now is the quality and duration of life now versus having repeated surgeries for that hope of the 1% success rate. 

                                                                                                                  I am using the Cancer Center at St Lukes in Bethlehem, PA.  Dr. Agarwala is supposedly a world-renowned specialist in melanoma. 

                                                                                                                  On the original lesion/tumor on my foot, the maximum thickness exceeded 4mm and mitotic index was 8 mm2.  The two largest tumor deposits were 3.5mm and 3.5mm. 

                                                                                                                  I hope this helps…

                                                                                                                  goldfidler
                                                                                                                  Participant

                                                                                                                    Sorry to hear about your situation and I appreciate your response.  

                                                                                                                    I am dealing with the situation of 3 of 5 nodes, with 3.5mm and 6.5mm in two of the nodes.  I guess this puts me in that "high-risk" category.  I guess my concern is that because I am already at "high-risk" and the primary tumor in my foot was undiagnosed for at least 24 months, I am concerned that this groin dissection will simply be the next surgery in a long list of future surgeries which will not prevent future cancer from appearing. 

                                                                                                                    You are younger than I am have many, many years ahead of you.  I wish you well in your surgery and will keep the board posted as to my next steps. 

                                                                                                                    Thanks again and good luck to you.

                                                                                                                    goldfidler
                                                                                                                    Participant

                                                                                                                      Sorry to hear about your situation and I appreciate your response.  

                                                                                                                      I am dealing with the situation of 3 of 5 nodes, with 3.5mm and 6.5mm in two of the nodes.  I guess this puts me in that "high-risk" category.  I guess my concern is that because I am already at "high-risk" and the primary tumor in my foot was undiagnosed for at least 24 months, I am concerned that this groin dissection will simply be the next surgery in a long list of future surgeries which will not prevent future cancer from appearing. 

                                                                                                                      You are younger than I am have many, many years ahead of you.  I wish you well in your surgery and will keep the board posted as to my next steps. 

                                                                                                                      Thanks again and good luck to you.

                                                                                                                      Phil S
                                                                                                                      Participant
                                                                                                                        Matt, You have to FIGHT melanoma with every tool you have, I too would do the groin surgery, and any other surgery you can do in the future to combat this disease. Battling melanoma is NOT a one round fight, you hope it’s a long, hard, bitter war until the end, and that you get years of GOOD times mixed in between rounds. My husband has had his original surgery, one year of interferon, lung surgery, brain surgery, WBR, six round of inpatient biochemo, and the TIL trial in his less than four year fight. But, he has also gotten our kids thru three more school years, seen both their First Communions, taken a Disney cruise, been on several other wonderful vacation trips, seen their gym and TKD competitions, and tugged them into bed regularly. He has made a zillion wonderful memories, and if and when, we have to fight again, we WILL.
                                                                                                                        Every decision with melanoma is an individual one, so ultimately you have to make the call, but just know that it can be fought around living life. The very, very best to you, we all know it’s scary! But, melanoma treatment is changing and improving all the time. God Bless, Valerie (Phil’s wife)
                                                                                                                        Phil S
                                                                                                                        Participant
                                                                                                                          Matt, You have to FIGHT melanoma with every tool you have, I too would do the groin surgery, and any other surgery you can do in the future to combat this disease. Battling melanoma is NOT a one round fight, you hope it’s a long, hard, bitter war until the end, and that you get years of GOOD times mixed in between rounds. My husband has had his original surgery, one year of interferon, lung surgery, brain surgery, WBR, six round of inpatient biochemo, and the TIL trial in his less than four year fight. But, he has also gotten our kids thru three more school years, seen both their First Communions, taken a Disney cruise, been on several other wonderful vacation trips, seen their gym and TKD competitions, and tugged them into bed regularly. He has made a zillion wonderful memories, and if and when, we have to fight again, we WILL.
                                                                                                                          Every decision with melanoma is an individual one, so ultimately you have to make the call, but just know that it can be fought around living life. The very, very best to you, we all know it’s scary! But, melanoma treatment is changing and improving all the time. God Bless, Valerie (Phil’s wife)
                                                                                                                          goldfidler
                                                                                                                          Participant

                                                                                                                            You and your husband are so strong.  You are both true warriors.  I just don't know if I have this fight in me.  Maybe I am just too confused or overwhelmed right now.  it was literally 24 hours ago that I received the news about the positive SNB.  I am just trying to get my arms around it. 

                                                                                                                            I truly appreciate your message.  Your strength and courage give strength and courage to others. 

                                                                                                                            Thank you…

                                                                                                                            goldfidler
                                                                                                                            Participant

                                                                                                                              You and your husband are so strong.  You are both true warriors.  I just don't know if I have this fight in me.  Maybe I am just too confused or overwhelmed right now.  it was literally 24 hours ago that I received the news about the positive SNB.  I am just trying to get my arms around it. 

                                                                                                                              I truly appreciate your message.  Your strength and courage give strength and courage to others. 

                                                                                                                              Thank you…

                                                                                                                              sharebear
                                                                                                                              Participant

                                                                                                                                I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                                                                                                sharebear
                                                                                                                                Participant

                                                                                                                                  I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                                                                                                  sharebear
                                                                                                                                  Participant

                                                                                                                                    I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                                                                                                    sharebear
                                                                                                                                    Participant

                                                                                                                                      I have been following this board daily for 2 years and have never posted.  I didn't want to jinx myself (I know it is silly).  Here is my brief story.  My husband was 37 years old and diagnosed as Stage 1(a) in 2008 (would have been Stage 1(b) by 2009 standards). His SLN biopsy was negative.  He had a mole that was approximately 1mm.  In 2011, he felt more fatigued than usual but not out of the ordinary since he was a neurosurgeon resident and worked long hours.  He felt a hard lump size of a walnut left upper leg. It was fixed, not painful, nor decreasing in size.  He had it checked out and was diagnosed with at least stage 3(b) because it was a palable node.  He had a superficial groin disection (18 nodes in total).  There were 2 nodes positive one was small 6mm and the other was 3 cm (large).  We were nervous about lymphadema because he as on his feet all day, but we wanted to fight at all costs (3 small children, actually the 3rd child was born the same week he was getting a disection and they rolled him down a floor to see me and his boy).  We then enrolled in a clinical trial (it was not an easy decision, but we didn't want interferon and treatment choice was limited for Stage III).  We went to Sloan, Angeles Clinic, Georgetown, Pacific Oncology, and Washing Hospital Center for opinions. I also lookd into NIH, Boston, Pitt. (too many to recall).  I learned that there was no right answer–everyone had a different opinion (very frusturating for a cancer patient in the state of shock). We ultimately decided to be aggressive opted out of interferon and the Mage vacinne trail and went for chemotherapy (carboplatin, Abraxane, tamoxifen).  There is a scientific hypothesis as to why this works but I won't get into the details because what works for  one person may not for another.  The physician we chose was Dr. Ed McClay.  My husband is still no evidence of disease 2.5 years later.  There were 20 people in this trial (small sample size), but only 2 people had a recurrance to date.  Lymphadema is not issue and chemo was not bad at all in fact my husband traveled to places he wanted to see during his chemo treatment (except for 2 days after the infusions/he slept).  The infusion were once a month for  4 months.  I guess what I am saying is that for us our fears were much worse then the reality of surgery and chemo and if felt good to get the cancer out of his body.  He currently is a practicing surgeon on his feet for 9 and 12 hour surgeries–he doesn't get much swelling and he doesn't wear a stocking.  We have no regrets beause we gave it our all.  I hope this info helps.   Shera

                                                                                                                                      goldfidler
                                                                                                                                      Participant

                                                                                                                                        Thank you so much, Mary.  Your input and experience is very appreciated.  I am just trying to figure all of this out.  it has literally been 24 hours since I was informed about the positive SNB.  I just need to process it all.  Thank you again1

                                                                                                                                        goldfidler
                                                                                                                                        Participant

                                                                                                                                          Thank you so much, Mary.  Your input and experience is very appreciated.  I am just trying to figure all of this out.  it has literally been 24 hours since I was informed about the positive SNB.  I just need to process it all.  Thank you again1

                                                                                                                                          goldfidler
                                                                                                                                          Participant

                                                                                                                                            Shera…

                                                                                                                                            Thank you so much for sharing your story.  What an adventure this has been for you and your family.  It gives me hope to hear about your situation.  It makes me challenge my thoughts and try to summon the courage to make the difficult decisions.  After reading some of these stories, I actually feel weak.  There are some many soldiers here, fighting the fight, day in and day out.  And I am whining about a little groin surgery.  I am sure there are many others who would be happy to trade places with me. 

                                                                                                                                            Thank you again for your words.  They truly mean a lot to me.  Thank you!

                                                                                                                                            goldfidler
                                                                                                                                            Participant

                                                                                                                                              Shera…

                                                                                                                                              Thank you so much for sharing your story.  What an adventure this has been for you and your family.  It gives me hope to hear about your situation.  It makes me challenge my thoughts and try to summon the courage to make the difficult decisions.  After reading some of these stories, I actually feel weak.  There are some many soldiers here, fighting the fight, day in and day out.  And I am whining about a little groin surgery.  I am sure there are many others who would be happy to trade places with me. 

                                                                                                                                              Thank you again for your words.  They truly mean a lot to me.  Thank you!

                                                                                                                                              goldfidler
                                                                                                                                              Participant

                                                                                                                                                Hi Shera…

                                                                                                                                                As per my other post, I took the weekend off, so to speak, and tried my best to not think about my situation.  I made every attempt to distract myself with other activities.  However, I wanted to thank you again for your reply to my message.  I must admit that your story really hit me where I needed it.  I even shared your story with my wife.  I told her how I felt like a real wimp while reading your history.  And I think it gave me the push I needed to get tough and fight. 

                                                                                                                                                I have decided I am going to move forward with the groin dissection.  The advice in this group has been priceless.  I am going to push for the compression sleeve and the massage therapy to minimize the occurrence and effects of the lymphedema.  I will make the decisions on clinical trials later.  One step (and decision) at a time. 

                                                                                                                                                I just want you to be sure that you know that your efforts to take the time to write to me have helped me.  I guess I do like so many others here, and fight. 

                                                                                                                                                Thank you so much!

                                                                                                                                                Matt

                                                                                                                                                goldfidler
                                                                                                                                                Participant

                                                                                                                                                  Hi Shera…

                                                                                                                                                  As per my other post, I took the weekend off, so to speak, and tried my best to not think about my situation.  I made every attempt to distract myself with other activities.  However, I wanted to thank you again for your reply to my message.  I must admit that your story really hit me where I needed it.  I even shared your story with my wife.  I told her how I felt like a real wimp while reading your history.  And I think it gave me the push I needed to get tough and fight. 

                                                                                                                                                  I have decided I am going to move forward with the groin dissection.  The advice in this group has been priceless.  I am going to push for the compression sleeve and the massage therapy to minimize the occurrence and effects of the lymphedema.  I will make the decisions on clinical trials later.  One step (and decision) at a time. 

                                                                                                                                                  I just want you to be sure that you know that your efforts to take the time to write to me have helped me.  I guess I do like so many others here, and fight. 

                                                                                                                                                  Thank you so much!

                                                                                                                                                  Matt

                                                                                                                                                  goldfidler
                                                                                                                                                  Participant

                                                                                                                                                    Hi Shera…

                                                                                                                                                    As per my other post, I took the weekend off, so to speak, and tried my best to not think about my situation.  I made every attempt to distract myself with other activities.  However, I wanted to thank you again for your reply to my message.  I must admit that your story really hit me where I needed it.  I even shared your story with my wife.  I told her how I felt like a real wimp while reading your history.  And I think it gave me the push I needed to get tough and fight. 

                                                                                                                                                    I have decided I am going to move forward with the groin dissection.  The advice in this group has been priceless.  I am going to push for the compression sleeve and the massage therapy to minimize the occurrence and effects of the lymphedema.  I will make the decisions on clinical trials later.  One step (and decision) at a time. 

                                                                                                                                                    I just want you to be sure that you know that your efforts to take the time to write to me have helped me.  I guess I do like so many others here, and fight. 

                                                                                                                                                    Thank you so much!

                                                                                                                                                    Matt

                                                                                                                                                    goldfidler
                                                                                                                                                    Participant

                                                                                                                                                      Hi Brian….

                                                                                                                                                      Thank you for the guidance.  As you can imagine, the last 24 hours have been a whirlwind for me.  I am digesting so much information and even getting better with all of the acronyms (SNB, TMA, NED).  I am definitely going to research clinical trials but that is still some time away for me. 

                                                                                                                                                      As you mention, right now I am 100% NED.  If my foot would not have hurt, I would have never gone to the hospital.  That day seems like 8 weeks and 20 lifetimes ago.  My next decision is whether to proceed with the groin dissection or not.  Given how I feel, there might be 1-2 nodes with something in them but have not fully developed yet.  It seems that my best bet is to remove them now while I actually am healthy.  My primary concerns with that operation are recovery time and lymphedema.  It almost seems so petty to write it but I want to be active again.  I want to move around and at least be able to take a walk.  The idea of more surgery, more bed rest, more recovery time, etc. is just overpowering me right now.  And since the TMA and SNB, I have already experienced some leg swelling and fluid retention.  From what I can see, the groin dissection is going to be even more invasive, with an even longer recovery, and even higher probability of lymphedema. 

                                                                                                                                                      It is just so much to process in 24 hours.  Maybe I need to just watch some re-runs for a day and think more about it later.  My groin dissection is scheduled for Sept 11th.  I have some more time to think about it. 

                                                                                                                                                      Thank you again.  I truly mean it.  Everyone on this discussion forum has been so helpful and genuine.  It has been a wonderful thing to find this group to share my thoughts and concerns.  And to hear from people who have really been through it, not just from a doctor who studied it.  It is a much different set a fellings when you are on the other end of the scalpal. 

                                                                                                                                                      I wish you the best in your efforts.  May we all end up on the good side of this…..

                                                                                                                                                      Matt

                                                                                                                                                      goldfidler
                                                                                                                                                      Participant

                                                                                                                                                        Hi Brian….

                                                                                                                                                        Thank you for the guidance.  As you can imagine, the last 24 hours have been a whirlwind for me.  I am digesting so much information and even getting better with all of the acronyms (SNB, TMA, NED).  I am definitely going to research clinical trials but that is still some time away for me. 

                                                                                                                                                        As you mention, right now I am 100% NED.  If my foot would not have hurt, I would have never gone to the hospital.  That day seems like 8 weeks and 20 lifetimes ago.  My next decision is whether to proceed with the groin dissection or not.  Given how I feel, there might be 1-2 nodes with something in them but have not fully developed yet.  It seems that my best bet is to remove them now while I actually am healthy.  My primary concerns with that operation are recovery time and lymphedema.  It almost seems so petty to write it but I want to be active again.  I want to move around and at least be able to take a walk.  The idea of more surgery, more bed rest, more recovery time, etc. is just overpowering me right now.  And since the TMA and SNB, I have already experienced some leg swelling and fluid retention.  From what I can see, the groin dissection is going to be even more invasive, with an even longer recovery, and even higher probability of lymphedema. 

                                                                                                                                                        It is just so much to process in 24 hours.  Maybe I need to just watch some re-runs for a day and think more about it later.  My groin dissection is scheduled for Sept 11th.  I have some more time to think about it. 

                                                                                                                                                        Thank you again.  I truly mean it.  Everyone on this discussion forum has been so helpful and genuine.  It has been a wonderful thing to find this group to share my thoughts and concerns.  And to hear from people who have really been through it, not just from a doctor who studied it.  It is a much different set a fellings when you are on the other end of the scalpal. 

                                                                                                                                                        I wish you the best in your efforts.  May we all end up on the good side of this…..

                                                                                                                                                        Matt

                                                                                                                                                        Phil S
                                                                                                                                                        Participant
                                                                                                                                                          Matt, I just want you to know that my husband and I were in complete and utter shock and disbelief when he was first diagnosed and treated. It took us both several months to come to terms with the reality that our lives would have to revolve around cancer forever. That our children would know more about cancer, radiation, surgeries, and chemo than any child should ever know. We thought, felt, and acted just like you are doing right now. We were scared, confused, upset, sad, and tired. So, my best advice, Give yourself time to absorb everything, people are not instantly resilient, strong, or courgeous! They become those things after the challenges are presented to them and they face them one at a time. You can FIGHT this disease, and we are here to support you. Keep us posted, Valerie (Phil’s wife)
                                                                                                                                                          Phil S
                                                                                                                                                          Participant
                                                                                                                                                            Matt, I just want you to know that my husband and I were in complete and utter shock and disbelief when he was first diagnosed and treated. It took us both several months to come to terms with the reality that our lives would have to revolve around cancer forever. That our children would know more about cancer, radiation, surgeries, and chemo than any child should ever know. We thought, felt, and acted just like you are doing right now. We were scared, confused, upset, sad, and tired. So, my best advice, Give yourself time to absorb everything, people are not instantly resilient, strong, or courgeous! They become those things after the challenges are presented to them and they face them one at a time. You can FIGHT this disease, and we are here to support you. Keep us posted, Valerie (Phil’s wife)
                                                                                                                                                            Maureen038
                                                                                                                                                            Participant

                                                                                                                                                              My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                                                                              Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                                                                              Maureen038
                                                                                                                                                              Participant

                                                                                                                                                                My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                                                                                Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                                                                                Maureen038
                                                                                                                                                                Participant

                                                                                                                                                                  My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                                                                                  Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                                                                                  Maureen038
                                                                                                                                                                  Participant

                                                                                                                                                                    My husband has stage 4 acral lentiginous melanoma.It started on his left toe. It sounds like you have the same type of melanoma. He was stage 3B spring of 2012 and he did have the surgery. He has no regrets with the lymph node dissection. It took awhile for the wound to heal because he was on high dose interferon. Also, make sure you get a compression sock and exercise is very important. We wanted the IPI, but he wasnt selected for it. He also had a high risk of reoccurrence so we felt it was very important to be aggressive. My husband just completed the adoptive cell transfer trial at NIH because of lung mets. if you have any questions, please feel free to write at [email protected]. Melanoma is a tricky disease, but there are many new trials that are showing much progress. Make sure you get more than one opinion from melanoma specialists.Be vigilant,but also be positive. You can do it!

                                                                                                                                                                    Here is an article that may help you:http://www.wjso.com/content/pdf/1477-7819-11-36.pdf

                                                                                                                                                                    goldfidler
                                                                                                                                                                    Participant

                                                                                                                                                                      Hi Cindy…

                                                                                                                                                                      Thank you for your response.  It gives me hope that your first occurrence was so long ago. 

                                                                                                                                                                      I have decided to have the groin biopsy.  I have started to educate myself on smart foods to help fight the disease.  I have not decided on the interferon or not.  It seems to be a mixed review from the group.  I am just taking one step at a time right now.  I can make that decision in a couple weeks. 

                                                                                                                                                                      I appreciate you taking the time to share. 

                                                                                                                                                                      Matt

                                                                                                                                                                      goldfidler
                                                                                                                                                                      Participant

                                                                                                                                                                        Hi Cindy…

                                                                                                                                                                        Thank you for your response.  It gives me hope that your first occurrence was so long ago. 

                                                                                                                                                                        I have decided to have the groin biopsy.  I have started to educate myself on smart foods to help fight the disease.  I have not decided on the interferon or not.  It seems to be a mixed review from the group.  I am just taking one step at a time right now.  I can make that decision in a couple weeks. 

                                                                                                                                                                        I appreciate you taking the time to share. 

                                                                                                                                                                        Matt

                                                                                                                                                                        goldfidler
                                                                                                                                                                        Participant

                                                                                                                                                                          Hi Cindy…

                                                                                                                                                                          Thank you for your response.  It gives me hope that your first occurrence was so long ago. 

                                                                                                                                                                          I have decided to have the groin biopsy.  I have started to educate myself on smart foods to help fight the disease.  I have not decided on the interferon or not.  It seems to be a mixed review from the group.  I am just taking one step at a time right now.  I can make that decision in a couple weeks. 

                                                                                                                                                                          I appreciate you taking the time to share. 

                                                                                                                                                                          Matt

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                                                                                                                                                                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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