DonnainRI's Journey with Skin Cancer - Melanoma

Patient: Skin Cancer - Melanoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 71, Stage IV, BRAF mutation positive: Yes, c-kit positive: Don't Know

  1. 1
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 6 years ago
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    Cancer has spread/Metastasized

    Oh No

    The mets in my liver and the one on my abdomen are gone but now I have 3 small brain mets, all in the frontal lobe. Meeting with the radiation oncologist for brain mapping and probable SRS to zap them. Staying on Taf/Mek for now but next scans will probably be in two months, not three.

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  2. 2
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 6 years ago
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    Full lymph node dissection

    Procedure or Surgery

    I had a modified wide excision of a melanoma in my left groin on Feb 25th 2016 but the story is more complicated than that. I had my first melanoma at age 24. It was on the back of my left thigh. I underwent wide excision with in-continuity inguinal node dissection. One node came back positive out of about 18 they removed. This was in 1976 and sentinel node biopsy had not yet been instituted. About 12 days post-op I developed lymphedema which has gotten worse over the years. I underwent treatment for it in 2010 and wear a compression garment and do nightly wrapping. Last May I discovered a mole that had enlarged and gotten dark. I had it removed on June 19th by a local surgeon and he called me on the 24th to confirm what I already knew - it was melanoma. The margins were barely clear and the lesion was 3.9 mm but follow up scans showed nothing in my nodes so in August I had a wide excision of that lesion. Recovery was not bad except for the fact that, due to my pre-existing lymphedema, both ends of the incision popped open when the staples were removed. It took another five weeks to close but fortunately I had no infection although it drained lymph and my skin was a mess from the dressings and tape. I finally found some really good tape that sticks well but does not tear your skin. Anyway, we decided to watch and wait and I was staged as IIb. In early January I felt a new bump in my groin near the scar from last year's wide excision. I looked at it and sure enough it was like a little black headlight staring back at me. I called Dana-Farber and they got me in to remove it the same day. As expected it was melanoma and changed my staging to IIIC. My next scan at the end of the month was negative so they did a modified wide excision on the Feb 25th but my surgeon did not let me go back to work until I was fully healed and no longer draining so I was out about 7 weeks. I just had another PET/CT and labs and all is still clear. I saw the oncologist this week and will be doing the every three month thing until I am clean for one year from the last procedure. We are holding on adjuvant treatment for now which is fine with me. My doc does not advocate for interferon and although I am now eligible for ipilimumab we are holding as long as I stay clear. I know this is high risk and my long-term prognosis is not good but I'd rather wait until there is something to treat and my doc is in favor of that as well, Immunotherapy has its limitations and some people either do not respond or stop responding after a time, so I think waiting is better rather than being exposed to it now and perhaps it would not work later when I really need it. I'm an RN so I have read many, many studies on melanoma over the years just to stay current but until the last few years there was not much in the way of hope. Now I know that they have quite a few drugs in development and early stage trials and they have also discovered more about how melanoma hides itself from the body's immune system. That could lead to another class of drugs that could work in tandem with the immunotherapy so I am hopeful that I'll outlive the statistics.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  3. 3
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    almost 6 years ago
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    Cancer is shrinking

    Celebration

    Scan results from last week showed that the enlarged nodes are still shrinking. No new areas of concern. Labs from last week were also great - the kidney issue I acquired from immunotherapy is a bit better. That's great because kidney disease can limit your availability to enter clinical trials.

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  4. 4
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    almost 6 years ago
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    Birthday

    Celebration

    Had my birthday on the 29th but more importantly I retired on July 15th. I am not sure what the future will hold with stage IIIC, although most likely the disease will return, so I figured I am retiring while I am healthy enough to enjoy it!

    1 Comment
  5. 5
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    My last PET scan showed several areas of FDG uptake in the lymph nodes. I am having a biopsy on the 31st and then, if it is positive which is what they expect, I will be placed on a clinical trial using nivolumab and ipilimumab on one arm and then the second arm will be both those drugs along with Sargramostim. I am handling it okay so far. This has been more or less expected as my melanoma was 4.0 mm and had a high mitotic rate (9). Not the news I wanted but not as devastating as it would have been a few years ago before the newer drugs.

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  6. 6
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 5 years ago
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    Fine needle aspiration biopsy

    Procedure or Surgery

    I underwent a fine-needle aspiration biopsy at Brigham and Women's Hospital on January 31st. Results were positive for melanoma.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  7. 7
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 5 years ago
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    Decision on treatment for unresectable melanoma

    Decision Point

    My last PET showed several lymph nodes with increased FDG uptake and a biopsy was positive for melanoma. Now the decision is wait for an upcoming clinical trial or do similar treatment out of the trial. My oncologist had me review the paperwork and I was going to do the trial but at the next visit he said the trial was temporarily suspended. He was not sure why. I would guess it is some piece of paper or something written in a way that needs clarification. It is usually not about the drugs themselves. Anyway, he offered me the option to wait for the trial to start enrolling or to start treatment with the two drugs I would have gotten if randomized to Arm A of the trial. I decided to start treatment immediately as opposed to waiting. It might have been a few days or it could have been a few months. I did not want to take that chance. I also had to decide if I wanted to start with single drug treatment (less toxicity but less chance of success) or combination treatment (better chance of success but more toxicity). I opted for the combination. I do not want to throw away my best chance for longer survival so two drugs it is.

    3 Comments
  8. 8
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 5 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Started Opdivo and Yervoy on the 16th of January. No real effects as of yet, but they gave me a huge list of possible side efects/toxicities and told me I need to call asap for even small changes in how I feel. I had no problem other than being a bit tired the next day but did not have the deep aches that others describe, no rash, no GI effects as yet. Hoping it stays that way. I will get a total of four double drug treatments given every three weeks, then will have a CT to see how I am doing. Most likely next step, depending on CT results, is to start Opdivo only once every two weeks.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  9. 9
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    almost 5 years ago
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    Side Effects

    This person has yet to add any details about this experience.

    1 Comment
  10. 10
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    almost 5 years ago
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    Cancer is shrinking

    Celebration

    My CT from last week shows that most of the ground-glass lesions in my lung have disappeared and my lymph nodes are smaller!

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  11. 11
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    almost 5 years ago
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    Side Effects

    This person has yet to add any details about this experience.

    4 Comments
  12. 12
    • DonnainRI
    • Experience with Skin Cancer - Melanoma
    about 4 years ago
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    Anniversary

    Celebration

    It was 42 years ago today that I had my first wide excision with in-continuity lymph node dissection in the left groin. Wow!

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