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Bad news yesterday, Stage IIIa, now what???

Forums General Melanoma Community Bad news yesterday, Stage IIIa, now what???

  • Post
    davekarrie
    Participant

      I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful.

      I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

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    • Replies
        lhaley
        Participant

          Dave,

          I'm sorry about the roller coaster.  I was told I had bladder cancer that was early stage and found out a week later that it was melanoma. So I totally understand the ride…..

          Yes, although I'm not a Doctor (you need to remember that for all advice given on the board) usually for preliminary staging they do a PET Scan.  I believe that LDH levels are not done, if they are it would be for a baseline. I am stage IV and my mel specialist does not do blood work. I think that they are done when it is in major organs only to see if that organ is having problems – ex. liver.  Each cancer center has a different protocal.

          Congratulations on the up and coming baby. We have another member on the board that happened to also. His name is Mark and he lives in Canada – I haven't seen him post lately but last I heard his baby had been born and he was doing well.    It does complicate your life though, think of it as a blessing to help you through this.

          I went straight from stage 1A to IV so I really don't have advice on treatments, just wanted to let you know that you aren't alone out there.  If your PET is clear then you will be NED. That brings up issues with treatments (although it's a great place to be!!). Interfuron will be offered. Trials that will be offered will probably have a placebo arm.  You need to think carefully about that.  Have them test your hla to see if you are eligible the vacine trials. You also might be offered radiation.

          Gather your mental strength and wait for the results of the PET before any decisions are made, they also might not discuss options until the other nodes are taken.

          Linda

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          lhaley
          Participant

            Dave,

            I'm sorry about the roller coaster.  I was told I had bladder cancer that was early stage and found out a week later that it was melanoma. So I totally understand the ride…..

            Yes, although I'm not a Doctor (you need to remember that for all advice given on the board) usually for preliminary staging they do a PET Scan.  I believe that LDH levels are not done, if they are it would be for a baseline. I am stage IV and my mel specialist does not do blood work. I think that they are done when it is in major organs only to see if that organ is having problems – ex. liver.  Each cancer center has a different protocal.

            Congratulations on the up and coming baby. We have another member on the board that happened to also. His name is Mark and he lives in Canada – I haven't seen him post lately but last I heard his baby had been born and he was doing well.    It does complicate your life though, think of it as a blessing to help you through this.

            I went straight from stage 1A to IV so I really don't have advice on treatments, just wanted to let you know that you aren't alone out there.  If your PET is clear then you will be NED. That brings up issues with treatments (although it's a great place to be!!). Interfuron will be offered. Trials that will be offered will probably have a placebo arm.  You need to think carefully about that.  Have them test your hla to see if you are eligible the vacine trials. You also might be offered radiation.

            Gather your mental strength and wait for the results of the PET before any decisions are made, they also might not discuss options until the other nodes are taken.

            Linda

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              davekarrie
              Participant

                Thanks Linda, they haven't talked about the PET scans so not sure about when they want to do this. Sounds like they want to get the rest of the lymph nodes out on the left side first then have me talk to oncologist about further treatment. They found it in 1 of 3 sentinels on the left side but right side was clear. the original mel was in my center chest/sternum area, so hopefully with the lymph node removal we will have gotten it all, lets hope.  I feel fine otherwise and they did do a lung xray that looked fine, so that is good. Just get so paranoid about everything and knowing how serious this is can be scary. this message board is great and good to talk to all you fine folks out there. thanks for the advice! Dave

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                davekarrie
                Participant

                  Thanks Linda, they haven't talked about the PET scans so not sure about when they want to do this. Sounds like they want to get the rest of the lymph nodes out on the left side first then have me talk to oncologist about further treatment. They found it in 1 of 3 sentinels on the left side but right side was clear. the original mel was in my center chest/sternum area, so hopefully with the lymph node removal we will have gotten it all, lets hope.  I feel fine otherwise and they did do a lung xray that looked fine, so that is good. Just get so paranoid about everything and knowing how serious this is can be scary. this message board is great and good to talk to all you fine folks out there. thanks for the advice! Dave

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                ChristineL
                Participant

                  Hi Dave,

                  I'm so sorry that the news has changed.  You have a great attitude which will get you far!  As for tests, my docs ordered LDH levels, PET scan, and MRI (mostly for baselines, I think) after finding my one positive node and before my lymphadenectomy.  There are a few trials out there for this Stage, and at this step the first one I am thinking of is a comparison of lymphadenectomy vs. watch-and-wait.  I think a lot of people just have the surgery done to play it safe, but it's good to know ALL of your options.   After surgery, assuming they don't find anything, then there's the option of interferon (regular or the less-often used pegylated), and perhaps an ipi trial (ipi vs. placebo).   As you know, the waiting is the hardest part, but arming yourself with information is what I've found help me. 

                  Take care, and let us know what goes on with you.

                  Best,

                  ChristineL

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                  ChristineL
                  Participant

                    Hi Dave,

                    I'm so sorry that the news has changed.  You have a great attitude which will get you far!  As for tests, my docs ordered LDH levels, PET scan, and MRI (mostly for baselines, I think) after finding my one positive node and before my lymphadenectomy.  There are a few trials out there for this Stage, and at this step the first one I am thinking of is a comparison of lymphadenectomy vs. watch-and-wait.  I think a lot of people just have the surgery done to play it safe, but it's good to know ALL of your options.   After surgery, assuming they don't find anything, then there's the option of interferon (regular or the less-often used pegylated), and perhaps an ipi trial (ipi vs. placebo).   As you know, the waiting is the hardest part, but arming yourself with information is what I've found help me. 

                    Take care, and let us know what goes on with you.

                    Best,

                    ChristineL

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                      davekarrie
                      Participant

                        Thanks Christine, I am actually more worried about my family than myself, it kills me to have them all worried sick about me.  I feel fine other than my pain from surgery, so that is a good thing and I know I will beat this as we all will!!!  Thanks again and everyone stay positive, we will all beat this!!!

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                        davekarrie
                        Participant

                          Thanks Christine, I am actually more worried about my family than myself, it kills me to have them all worried sick about me.  I feel fine other than my pain from surgery, so that is a good thing and I know I will beat this as we all will!!!  Thanks again and everyone stay positive, we will all beat this!!!

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                        washoegal
                        Participant

                          You're situation sounds similar to mine.  Lymph nodes "looked" fine when they removed them but oops….microscopic amounts of Mel in two nodes.  I had all the lymph nodes removed from under my right arm.  Not a horrible surgery, like everyone I hated the drain tube!  But I was up and about pretty well, except for the stupid drain.

                          I had blood work, CT and Chest X'ray doneprior to surgery .  I had a PET/CT done 6 months later.  Now regarding future treatment, many people will tell you stage 3 is a weird place to be, not many clinical trials but yet we're at a fairly dangerous spot.  All I was offered was Interferon or "Wait and Watch".  I did a lot of research on Interferon, don't feel like you need to make a decision that day, take a couple of weeks.  I chose wait and watch, it is a personal decision. 

                          The only regret I have about not trying interferon is now that I know a little more I understand that to qualify for most all trials I must have tried one other protocol and failed before entering the study.  Good news is at this point I am 8 months NED so it doesn't matter (at least so far).

                          Good Luck,

                          Mary

                          Stage 3a

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                          washoegal
                          Participant

                            You're situation sounds similar to mine.  Lymph nodes "looked" fine when they removed them but oops….microscopic amounts of Mel in two nodes.  I had all the lymph nodes removed from under my right arm.  Not a horrible surgery, like everyone I hated the drain tube!  But I was up and about pretty well, except for the stupid drain.

                            I had blood work, CT and Chest X'ray doneprior to surgery .  I had a PET/CT done 6 months later.  Now regarding future treatment, many people will tell you stage 3 is a weird place to be, not many clinical trials but yet we're at a fairly dangerous spot.  All I was offered was Interferon or "Wait and Watch".  I did a lot of research on Interferon, don't feel like you need to make a decision that day, take a couple of weeks.  I chose wait and watch, it is a personal decision. 

                            The only regret I have about not trying interferon is now that I know a little more I understand that to qualify for most all trials I must have tried one other protocol and failed before entering the study.  Good news is at this point I am 8 months NED so it doesn't matter (at least so far).

                            Good Luck,

                            Mary

                            Stage 3a

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                            EmilyandMike
                            Participant

                              Dave – my heart goes out to you right now – especially after they told you the results were negative yesterday.  When it rains it pours and I hope things will calm down for you soon.  I can tell you that it does get easier to deal with and that sadly melanoma hits both the young and old regardless.  We got that same news over year ago the week after my husband turned 41 – they found one or two melanoma cells in one node (his breslow was 1.3 with low mitosis).  It took pathology a while to determine that they were in fact cancerous cells in his node and we waited many torturous days for the news.  I am not sure if you are getting a second opinion because sometimes pathology isnt cut and dry.  After my husband got the news, he was scheduled for the complete axilla lymph node dissection but before that they did PET/CT scans, and I am sure they will do the same for you.  You wont really know your true stage until you get scans and if those are clear, after they take out the rest of the nodes.  The majority of people usually don't find additional cancer after the CLND – I think around 8-10% of people have additional positive nodes.   As others have said, the worst part of the CLND is the drainage tube which we affectionately called the "dingleberry".  You will celebrate when that is removed after a couple of weeks!  If you remain Stage 3a, there arent a lot of options except observation (what we chose), interferon, and  maybe one or two clinical trials.  The adjuvant therapy clinical trials usually require you to start 8-12 weeks after surgery and no later – so start searching clinicaltrials.gov now if you want to go that route.  I know the Ipilumamab adjuvant trial is double blind and will only take Stage 3a with a certain amount of cancer cells.  My husband didnt qualify due to only having a few cells.  Hopefully there will be more options for Stage 3a in the near future but right now its kind of in limbo.  Feel free to ping me with questions and you can see my husband's story here with a scary pic and all: http://emandmichael.wordpress.com/melanoma-information/

                              All my best to you

                              Emily, wife of Mike – stage 3a

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                              EmilyandMike
                              Participant

                                Dave – my heart goes out to you right now – especially after they told you the results were negative yesterday.  When it rains it pours and I hope things will calm down for you soon.  I can tell you that it does get easier to deal with and that sadly melanoma hits both the young and old regardless.  We got that same news over year ago the week after my husband turned 41 – they found one or two melanoma cells in one node (his breslow was 1.3 with low mitosis).  It took pathology a while to determine that they were in fact cancerous cells in his node and we waited many torturous days for the news.  I am not sure if you are getting a second opinion because sometimes pathology isnt cut and dry.  After my husband got the news, he was scheduled for the complete axilla lymph node dissection but before that they did PET/CT scans, and I am sure they will do the same for you.  You wont really know your true stage until you get scans and if those are clear, after they take out the rest of the nodes.  The majority of people usually don't find additional cancer after the CLND – I think around 8-10% of people have additional positive nodes.   As others have said, the worst part of the CLND is the drainage tube which we affectionately called the "dingleberry".  You will celebrate when that is removed after a couple of weeks!  If you remain Stage 3a, there arent a lot of options except observation (what we chose), interferon, and  maybe one or two clinical trials.  The adjuvant therapy clinical trials usually require you to start 8-12 weeks after surgery and no later – so start searching clinicaltrials.gov now if you want to go that route.  I know the Ipilumamab adjuvant trial is double blind and will only take Stage 3a with a certain amount of cancer cells.  My husband didnt qualify due to only having a few cells.  Hopefully there will be more options for Stage 3a in the near future but right now its kind of in limbo.  Feel free to ping me with questions and you can see my husband's story here with a scary pic and all: http://emandmichael.wordpress.com/melanoma-information/

                                All my best to you

                                Emily, wife of Mike – stage 3a

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                                  davekarrie
                                  Participant

                                    Thanks for the info and insight.  They want to do PET scans when I go back probably next week for the lymph dissection.  I am healing well from the WLE/SLNB but burning on my right underarm. Since the tumor was in the center of my chest it drained to sentinels on my left and right underarm.  Weird that it drained best to my right side they said but cancer cells found in left node, but the body is weird sometimes.  I know I will make it through this just need to heal up as fast as possible.  After reading posts and if my stage remains a IIIa, will probably do the wait and see approach but the immontherapy sounds interesting if its offered. thanks again.

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                                    davekarrie
                                    Participant

                                      Thanks for the info and insight.  They want to do PET scans when I go back probably next week for the lymph dissection.  I am healing well from the WLE/SLNB but burning on my right underarm. Since the tumor was in the center of my chest it drained to sentinels on my left and right underarm.  Weird that it drained best to my right side they said but cancer cells found in left node, but the body is weird sometimes.  I know I will make it through this just need to heal up as fast as possible.  After reading posts and if my stage remains a IIIa, will probably do the wait and see approach but the immontherapy sounds interesting if its offered. thanks again.

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                                      EmilyandMike
                                      Participant

                                        Dave – I forgot to say..get the best surgeon you can – one that has done a CLND for melanoma many many times….this is the best way to prevent nerve damage,  My husband has no lymphedema a year later but he does have some nerve damage and numbness (and that is why you probably have burning from the SNB as the nerve's heal).   Even the best of surgeons have a hard time avoiding the nerves when they remove the node tissue.  Good luck with everything and keep us updated.  – Emily

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                                        EmilyandMike
                                        Participant

                                          Dave – I forgot to say..get the best surgeon you can – one that has done a CLND for melanoma many many times….this is the best way to prevent nerve damage,  My husband has no lymphedema a year later but he does have some nerve damage and numbness (and that is why you probably have burning from the SNB as the nerve's heal).   Even the best of surgeons have a hard time avoiding the nerves when they remove the node tissue.  Good luck with everything and keep us updated.  – Emily

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                                          Becky
                                          Participant

                                            I agree with getting the best surgeon possible but my son's surgeon was a Head and Neck guy at Kaiser, the same one who did his tongue surgery (his melanoma was oral). I don't think he had experience with melanoma but did a great job on removing the neck nodes without causing nerve damage.

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                                            Becky
                                            Participant

                                              I agree with getting the best surgeon possible but my son's surgeon was a Head and Neck guy at Kaiser, the same one who did his tongue surgery (his melanoma was oral). I don't think he had experience with melanoma but did a great job on removing the neck nodes without causing nerve damage.

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                                              EmilyandMike
                                              Participant

                                                Dave – read this article if you havent already…

                                                http://skincancer.about.com/od/treatmentoptions/a/lymph_node_dissection.htm

                                                I especially like this part:

                                                 

                                                The effectiveness of a CLND may depend on the size of the melanoma tumor. Small tumors (0.1 mm or less in diameter) in the sentinel lymph node may not ever lead to metastasis at all, so performing a CLND may not be necessary. A 2009 study showed that the survival and relapse rates of patients with these small tumors was the same as those who had no melanoma in their sentinel lymph node. Thus, these "low-risk" patients may be able to avoid a CLND and have the same outcome.

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                                                EmilyandMike
                                                Participant

                                                  Dave – read this article if you havent already…

                                                  http://skincancer.about.com/od/treatmentoptions/a/lymph_node_dissection.htm

                                                  I especially like this part:

                                                   

                                                  The effectiveness of a CLND may depend on the size of the melanoma tumor. Small tumors (0.1 mm or less in diameter) in the sentinel lymph node may not ever lead to metastasis at all, so performing a CLND may not be necessary. A 2009 study showed that the survival and relapse rates of patients with these small tumors was the same as those who had no melanoma in their sentinel lymph node. Thus, these "low-risk" patients may be able to avoid a CLND and have the same outcome.

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                                                Doug-Pepper
                                                Participant

                                                  Dave, so sorry to hear this. Doug's news came about the same way. As soon as we got the original diagnosis, I went to the health food store. Long story(2 yrs. before I became aware/interested in more natural healing for cancer & other serious diseases). Anyway, I bought several supplements &  we have been juicing & cut out lots of processed foods & sugars. This has been for almost 2 months. We had a second opinion yesterday @ Vanderbilt. He is considered stage3. Cancer in 1 node out of 15. They suggest the clinical trial over interferon. It is a double blind & the side effects are pretty serious too. I am not sure what is best. I know that this diet can only boost his immune system & make him overall healthier.  I also bought him an all natural deo over his anti-perspirant also. I know this sounds a little rough. He has a very physical job & he has been fine with it. I even make it through an hour aerobics class with mine. I had read about some of the ingredients in anti -per. being linked to breast cancer & alzheimer's. It just made sense to keep it away from his lymph nodes. This is very scary. My husband is strong & healthy & we are going to fight this together whatever he decides to do.  Stay strong & positive. There are many survivors still out there. Pepper.

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                                                  Doug-Pepper
                                                  Participant

                                                    Dave, so sorry to hear this. Doug's news came about the same way. As soon as we got the original diagnosis, I went to the health food store. Long story(2 yrs. before I became aware/interested in more natural healing for cancer & other serious diseases). Anyway, I bought several supplements &  we have been juicing & cut out lots of processed foods & sugars. This has been for almost 2 months. We had a second opinion yesterday @ Vanderbilt. He is considered stage3. Cancer in 1 node out of 15. They suggest the clinical trial over interferon. It is a double blind & the side effects are pretty serious too. I am not sure what is best. I know that this diet can only boost his immune system & make him overall healthier.  I also bought him an all natural deo over his anti-perspirant also. I know this sounds a little rough. He has a very physical job & he has been fine with it. I even make it through an hour aerobics class with mine. I had read about some of the ingredients in anti -per. being linked to breast cancer & alzheimer's. It just made sense to keep it away from his lymph nodes. This is very scary. My husband is strong & healthy & we are going to fight this together whatever he decides to do.  Stay strong & positive. There are many survivors still out there. Pepper.

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                                                    LynnLuc
                                                    Participant

                                                      Much of my treatment was done at Mayo in Rochester, MN.CT/ PET scan was every 3 months…my LDH levels have always been checked with each blood draw…I have fewer PETs now that I am NED, but continue with CT and MRI's. My LDH is still  checked at each blood draw at Moffitt.

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                                                      LynnLuc
                                                      Participant

                                                        Much of my treatment was done at Mayo in Rochester, MN.CT/ PET scan was every 3 months…my LDH levels have always been checked with each blood draw…I have fewer PETs now that I am NED, but continue with CT and MRI's. My LDH is still  checked at each blood draw at Moffitt.

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                                                          LynnLuc
                                                          Participant

                                                            PS  if you are at the Mayo in Rochester MN, Dr Shen is the BEST Surgeon there!!

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                                                            LynnLuc
                                                            Participant

                                                              PS  if you are at the Mayo in Rochester MN, Dr Shen is the BEST Surgeon there!!

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