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What’s next? Stage IIIb, 4 years later recurrence in same leg.

Forums General Melanoma Community What’s next? Stage IIIb, 4 years later recurrence in same leg.

  • Post
    Ali
    Participant

    I spent a lot of time on this website almost 4 years ago, and appreciated everything I learned.  I thought I knew a lot, but right now I don't even know what stage I am concidered, and what my treatment options will be now.

    I spent a lot of time on this website almost 4 years ago, and appreciated everything I learned.  I thought I knew a lot, but right now I don't even know what stage I am concidered, and what my treatment options will be now.

    I was a IIIb, 2.5, ulcerated, three positive lymph nodes.  Interferon tolerated for 9 months.  No problems until this week I had them take off a weird wart looking nodule that came from no where and they called back friday saying it was a metastasis from my origanal melanoma.  It was on the opposite side of my knee, maybe 6 inces away.  I only talked to the dermatologist, and not for long, so I have been going crazy all weekend.  I'm sure I will talk to my oncologist this week, but what am I looking at here?

    Is this concidered a satellite lesion?  Would they bump my stage up to IIIc because I had positive lymph nodes (although it was micrometastisis there) and a satellite?  What treatments are appropriate, or could they say it won't be treated?  They wouldn't do interferon again would they?  The derm. mentioned radiation, thoughts?

    I just had my last scans in September and because it was my 3 year mark they said I didn't need anymore and they did not expect it come back if it hadn't already.  Wow, I just wasn't prepared for this.  Any insight much appreciated. 

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  • Replies
      lhaley
      Participant

      Ali,

      I'm sorry you've had to rejoin us. Take a deep breathe.  Actually in the last 4 years although they aren't great there have been a few improvements in treatments.  You will need to get to an oncologist (preferably a melanoma specialist) and they will do your scans again.  You will need to know what you are dealing with before they will discuss treatments.

      I would guess that your staging will remain the same and this would be considered a local recurrance since it's still in the same nodal basin. Again, an oncologist is the one who does the staging, after scans. Although emotionally the difference from stage 3B to 3 C may be significant, as far as treatments go they would be the same.

      Melanoma has it's own mind.  Mine came back 27 years after the original mole. While 3 years is great and they say that most recurrances happen within the first 2 years there are no guarantees. 

      If you are currently NED there still aren't many options. I would doubt that interfuron would be suggested since you did it and had the recurance.  Many have had radiation done to lymph nodes and bones. I would think yours would be considered fleshy tissue and I'm not sure about that.  If they talk trials with you take into consideration if one of the arms is a placebo.  While I've done a lot of watch and wait through my 5 recurrances you just need to be aware that it is considered to be ethical (I'm not in agreement with this but they don't ask for my opinion!) for an arm to be a placebo because standard of care if NED is watch and wait. 

      I don't think we are ever prepared for a recurrance. 

      Linda

      Stage IV since 06

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      lhaley
      Participant

      Ali,

      I'm sorry you've had to rejoin us. Take a deep breathe.  Actually in the last 4 years although they aren't great there have been a few improvements in treatments.  You will need to get to an oncologist (preferably a melanoma specialist) and they will do your scans again.  You will need to know what you are dealing with before they will discuss treatments.

      I would guess that your staging will remain the same and this would be considered a local recurrance since it's still in the same nodal basin. Again, an oncologist is the one who does the staging, after scans. Although emotionally the difference from stage 3B to 3 C may be significant, as far as treatments go they would be the same.

      Melanoma has it's own mind.  Mine came back 27 years after the original mole. While 3 years is great and they say that most recurrances happen within the first 2 years there are no guarantees. 

      If you are currently NED there still aren't many options. I would doubt that interfuron would be suggested since you did it and had the recurance.  Many have had radiation done to lymph nodes and bones. I would think yours would be considered fleshy tissue and I'm not sure about that.  If they talk trials with you take into consideration if one of the arms is a placebo.  While I've done a lot of watch and wait through my 5 recurrances you just need to be aware that it is considered to be ethical (I'm not in agreement with this but they don't ask for my opinion!) for an arm to be a placebo because standard of care if NED is watch and wait. 

      I don't think we are ever prepared for a recurrance. 

      Linda

      Stage IV since 06

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        Ali
        Participant

        Thank you Linda!  I couldn't tell if this would be a local recurrance or satellite, but that would make more sense.  I will keep that in mind about the trials, I am at a research hospital.  I am so sorry you have done this 5 times!  Hope all is well.

        Alisa

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        Ali
        Participant

        Thank you Linda!  I couldn't tell if this would be a local recurrance or satellite, but that would make more sense.  I will keep that in mind about the trials, I am at a research hospital.  I am so sorry you have done this 5 times!  Hope all is well.

        Alisa

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      molly
      Participant

      Ali, have you met with your surgeon?  My husband had a couple of things come up close to his origonal mel in the first few years (positive for mel) and even had one travel to his pertoneal cavity at 4 years which made him Stage IV. He had all removed and, thank the Lord, that was almost 12 years ago. No additional treatments other than surgery so far. His last mel was caught by a CT scan. I know different docs have different thoughts about the scans but we were thankful his believed in them. 

      I wish you the very best as you decide what to do about this. 

      molly

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      molly
      Participant

      Ali, have you met with your surgeon?  My husband had a couple of things come up close to his origonal mel in the first few years (positive for mel) and even had one travel to his pertoneal cavity at 4 years which made him Stage IV. He had all removed and, thank the Lord, that was almost 12 years ago. No additional treatments other than surgery so far. His last mel was caught by a CT scan. I know different docs have different thoughts about the scans but we were thankful his believed in them. 

      I wish you the very best as you decide what to do about this. 

      molly

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        Vermont_Donna
        Participant

        Hi Ali,

         The same thing happened to me….but in a shorter time frame…..had the melanoma and positive sentinal node, did 11 months of Interferon…..had a re-occurence 10 months later…a metastasis of the original melanoma, several inches away. Staging stayed the same. I did 7 months of leukine and I believe radiation, 5.5 weeks. I had a re-occurence after that (at 7 months), and after that did an ILP. Fast forward through more re-occurences and surgery, and I just completed my 4th round of Ipi. By the time I was having my 2nd dose of Ipi, my leg tumors had exploded from several to 50 or more…….no surgery was going to help this, they were scattered and clustered all over my leg…..but the third dose of Ipi I could see signs of them going away, and I just had my 4th dose ten days ago and they are all just about gone! I do not know what your melanoma oncologist will do….to be able to have certain treatments sometimes you have to have failed others. Be vigilant for more re-occurences (any skin changes, as the melanoma dont always look the same, and arent always black…mine were red or skin colored, and I had sub q's also).

        Good luck in your treatment decisions, and take some deep breaths…you are on top of this…see you went and got that warty looking nodule removed…see how vigilant you already are!!!

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi Ali,

         The same thing happened to me….but in a shorter time frame…..had the melanoma and positive sentinal node, did 11 months of Interferon…..had a re-occurence 10 months later…a metastasis of the original melanoma, several inches away. Staging stayed the same. I did 7 months of leukine and I believe radiation, 5.5 weeks. I had a re-occurence after that (at 7 months), and after that did an ILP. Fast forward through more re-occurences and surgery, and I just completed my 4th round of Ipi. By the time I was having my 2nd dose of Ipi, my leg tumors had exploded from several to 50 or more…….no surgery was going to help this, they were scattered and clustered all over my leg…..but the third dose of Ipi I could see signs of them going away, and I just had my 4th dose ten days ago and they are all just about gone! I do not know what your melanoma oncologist will do….to be able to have certain treatments sometimes you have to have failed others. Be vigilant for more re-occurences (any skin changes, as the melanoma dont always look the same, and arent always black…mine were red or skin colored, and I had sub q's also).

        Good luck in your treatment decisions, and take some deep breaths…you are on top of this…see you went and got that warty looking nodule removed…see how vigilant you already are!!!

        Vermont_Donna, stage 3a

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        Ali
        Participant

        Donna, thank you for your reply.  Wow, you have been through a lot.  I am so glad there is something that is helping.  Prayers for you.  I think I would be the type to try what I can.  Leukine?  How hard of a treatment was that?  How did the radiation affect your leg?

        Ali

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        Ali
        Participant

        Donna, thank you for your reply.  Wow, you have been through a lot.  I am so glad there is something that is helping.  Prayers for you.  I think I would be the type to try what I can.  Leukine?  How hard of a treatment was that?  How did the radiation affect your leg?

        Ali

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        Vermont_Donna
        Participant

        Hi Ali,

        The leukine was much easier than the interferon….it is still injections you give yourself and their are welts (huge) that many people get at the injection site (I rotated left thigh and abdomen, could not inject my right leg due to lymphadema). I managed the discomfort and itching with benedryl and tylenol. I was able to work every day. I had some long bone pain as the leukine is a drug that stimulates your bone marrow to make more white blood cells which is turn target melanoma (probably not well explained, but its how I understood it). Very do-able and while some feel it doesnt have a large effect on melanoma it was offered to me when not much else was available and I decided to do that and not search for a clinical trial and somehow run the risk of getting randomized to the placebo arm and then therefor not getting treatment and not knowing it. I wanted a "sure" thing, so I did the leukine. I had a re-occurence 7 months later. I did radiation also……painless until the last two weeks, and then redness increasing to a burn like feeling. The first time I had radiation I developed second degree radiation burns and cellulitis and terrible pain and lymphadema (look I am the person who has these worst case scenarios happen! lol) and so I was hospitalized for a week. The second round of radiation (different area of my leg) was a breeze comparably. 

        Hope this answers some of your questions. Please ask more if you would like.

        Vermont_Donna, stage 3a

        just finished 4th round of Ipi, scans Wednesday

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        Vermont_Donna
        Participant

        Hi Ali,

        The leukine was much easier than the interferon….it is still injections you give yourself and their are welts (huge) that many people get at the injection site (I rotated left thigh and abdomen, could not inject my right leg due to lymphadema). I managed the discomfort and itching with benedryl and tylenol. I was able to work every day. I had some long bone pain as the leukine is a drug that stimulates your bone marrow to make more white blood cells which is turn target melanoma (probably not well explained, but its how I understood it). Very do-able and while some feel it doesnt have a large effect on melanoma it was offered to me when not much else was available and I decided to do that and not search for a clinical trial and somehow run the risk of getting randomized to the placebo arm and then therefor not getting treatment and not knowing it. I wanted a "sure" thing, so I did the leukine. I had a re-occurence 7 months later. I did radiation also……painless until the last two weeks, and then redness increasing to a burn like feeling. The first time I had radiation I developed second degree radiation burns and cellulitis and terrible pain and lymphadema (look I am the person who has these worst case scenarios happen! lol) and so I was hospitalized for a week. The second round of radiation (different area of my leg) was a breeze comparably. 

        Hope this answers some of your questions. Please ask more if you would like.

        Vermont_Donna, stage 3a

        just finished 4th round of Ipi, scans Wednesday

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        Ali
        Participant

        Molly, I am waiting for the surgeon and onologist to call back today.  I also believe in scans, I bet they will do one this week.  I am glad he is doing so well!  Thanks,

        Ali

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        Ali
        Participant

        Molly, I am waiting for the surgeon and onologist to call back today.  I also believe in scans, I bet they will do one this week.  I am glad he is doing so well!  Thanks,

        Ali

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      TAC
      Participant

      I am Stage IIIb. Have had 6 recurrences, all within 1 1/2" of my original lesion. Had 2 SNB's and 13 nodes removed but melanoma in any of them. I have tried interferon, radiation, a vaccine and Leukine. With all of them I've had recurrences but none to organs and all recurrences were surgically removed. I still take Leukine and have been on it for 7 years. I figure that it must be doing something otherwise the recurrences would have gone into an organ…..that's my story. Lots of trails available to consider for you. I cannot get into any trial because I've also had kidney cancer and lung cancer(non-smoker). Best wishes to you. Go to an oncologist, get another scan: go to a surgical oncologist to remove the spot but also ask onc and surgeon about doing an SNB to see if anything in the nodes.

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      TAC
      Participant

      I am Stage IIIb. Have had 6 recurrences, all within 1 1/2" of my original lesion. Had 2 SNB's and 13 nodes removed but melanoma in any of them. I have tried interferon, radiation, a vaccine and Leukine. With all of them I've had recurrences but none to organs and all recurrences were surgically removed. I still take Leukine and have been on it for 7 years. I figure that it must be doing something otherwise the recurrences would have gone into an organ…..that's my story. Lots of trails available to consider for you. I cannot get into any trial because I've also had kidney cancer and lung cancer(non-smoker). Best wishes to you. Go to an oncologist, get another scan: go to a surgical oncologist to remove the spot but also ask onc and surgeon about doing an SNB to see if anything in the nodes.

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        Ali
        Participant

        Thank you, I hope I will see the surgeon and oncologist this week.  6 recurrences, and nothing to your organs does sound hopeful.  I will for sure ask about Leukine.  Thanks again!

        Ali

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        Ali
        Participant

        Thank you, I hope I will see the surgeon and oncologist this week.  6 recurrences, and nothing to your organs does sound hopeful.  I will for sure ask about Leukine.  Thanks again!

        Ali

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