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

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

 

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

 

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

 

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

 

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

 

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

 

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? 

 

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? 

 

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? 

 

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

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

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

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

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

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

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)

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.

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.

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.

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

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

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

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

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

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)

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.

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.

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.

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

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

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

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.

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.

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.

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

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

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

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

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

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 

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 

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 

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)

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)

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

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

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

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

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)

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)

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

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

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

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