› Forums › Cutaneous Melanoma Community › Words of encouragement needed
- This topic has 13 replies, 9 voices, and was last updated 6 years, 4 months ago by
AshleyS.
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- December 29, 2017 at 3:06 am
Hello all!
I first want to thank you all for all your posts over the last year and a half. This is my first post, but have been reading every day.
Here is a quick overview. 48yo, Light skin, red hair, many freckles and moles, and multiple sun burns throughout my life. Summer of 2016 had a small mole on my right leg change ever so slightly. I’ve had multiple moles removed over the years with no issues. Went to my derm, she did a shave biopsy like all the others. Well to all our dismay, malignant melanoma. It was .95mm, no ulceration, clarks IV, mitotic rate of 5. Not great, but not bad. Did surgery with clear margins and a clear SLN biopsy…all (should be) good.
Fast forward 1 year to summer of 2017 and I feel a small bump on right groin. Did biopsy, yep, melanoma. After much discussion, did the CLND. All 14 nodes were clear except the original. Did PET and MRI of brain and all is clear. We decide to do watch instead of meds due to history of colitis.
Went for my 4 month CT and my right exterior iliac node has grown to 2cm. Everything else was clear. Did a biopsy and sure enough, melanoma. My onc decided to do another PET to double check and found multiple, 6-8, spots under 1cm on liver. She then ordered MRI in liver to double check and spots are positive.
Needless to say I am very disappointed/distressed with this outcome. I am B-RAF negative so am starting Opdivo or Yervoy/Opdivo combo as long as I can tolerate next week. I have been reading many positive stories, but I am just looking for some advise/words of encouragement to help me through the next week until I can start treatment. I am really having trouble wrapping my head around how fast this has progressed.
Thanks again for all you all do and all the help you provide. I hope you all have a blessed New Year and look forward to your replies.
SRV
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- December 29, 2017 at 4:23 am
Hey SRV – Sorry to hear of your current dilemma but I have a little story that might help. Last year, at a seminar my sister's oncologist holds annually, we heard a gentleman speak and it was quite impressive. Though he did not have a history of colitis previously, he had only 2 combo infusions of ipi/nivo and then developed colitis, severe enough that he was removed from treatment. BUT – his next follow-up scan showed that the two rounds of immunotherapy were enough – he was NED already.
I sincerely hope you can tolerate treatment and that it does its magic for you too!!! Wishing you the best possible outcomes and a healthier, less trying 2018!!!!
Barb
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- December 29, 2017 at 2:16 pm
Sorry for what you have been through and are facing, SRV, but there is certainly hope. Here is a link to a couple of reports that note folks with pre-existing immune disease CAN not only tolerate immunotherapy…but gain a response!!! – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/patients-with-preexisting-immune.html
Furthermore, we have learned that folks who have to stop immunotherapy due to side effects do about as well as those who endure the treatment longer!!! – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html
Hang in there! I wish you well. Celeste
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- December 29, 2017 at 6:04 pm
Similar story! Positive groin node, removed 10, the other 9 were negative. Within about 5 weeks an iliac node was positive so 28 of those were removed, 27 were negative. Have been doing immunotherapy for almost a year. The only permanent side effect is damage to my thyroid. I credit the drugs for keeping melanoma away! The iliac node had grown to 45mm with extracapsular extension so pretty yucky. Good luck to you. -
- December 30, 2017 at 3:48 am
Hi SRV,
Sorry this is happening to you.I hope the Yervoy gets you to NED ASAP. I think the main thing is for you to stay in close touch with your medical team and notify them right away if you start to feel a colitis flare-up.
My husband has a history of colitis, so he didn't do Yervoy. He's been doing fine on Keytruda, though he is not NED yet.
Best of luck to you!
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- December 30, 2017 at 8:24 pm
HI SRV,
I have nearly the same story as you. However, my primary was on my left leg and I was 20 weeks pregnant when I felt a lump in my left groin. After my son’s birth, a PET revealed tumors on my liver, spine, and lots of subcutaneous markers (December 2014).
Long story short, I went on Ipi/Nivo, which was then a trial. I made it through 3/4 infusions but couldn’t receive the fourth because of grade III diarrhea. I’ve been NED since November 2015. I did continue with maintenance Nivo for two years. I finished treatment in March 2017 and only take synthroid now because the treatment messed up my thyroid.
In the past 3 years I’ve gone from thinking I was dying to enjoying every single second of life. I finished grad school, started teaching again, bought a lake cabin, and celebrated 3/4/5 birthdays with my daughter and 1/2/3 with my son. Sometimes I have to pinch myself.
A stage IV breast cancer survivor told me, “Who says you can’t be in the minority (concerning prognosis numbers). Someone has to be!” I clung to that.
Best wishes,
Ashley
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- January 1, 2018 at 11:50 pm
Everyone's experience is different but I found myself struggling to follow along mentally with the very fast moving train that I'll call this diagnosis. Eventually for me I caught up. Try not to stress out about the treatment. I see it as a blessing rather than a curse. Although not a walk in the park it seems so much better than traditional chemo. I found it very helpful to keep a journal with everything so I had it to bring to dr appointments. Temperature, bowl movements, what I was eating, how tired I felt, how much I was sleeping, how much I was working. I'm the type who answers "I'm fine" when the dr asks how I'm feeling even when I'm really not fine so this was where the journal helped me. I couldn't say I was fine when I had the data that I wasn't fine. Good wishes to you. I hope you have little side effects and great success.
Jennifer
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- January 2, 2018 at 5:16 pm
As I mentioned to SRV separately–totally possible to do ipi-nivo with having had prior colitis. One option is to start a moderate dose of prednisone at the outset of treatment (e.g., 20mg) if you're high risk for colitis. When I started ipi-nivo, the "goal" was for me to get 2 combined treatments and then move to nivo alone. I was able to tolerate 3 combined treatments before moving to nivo alone. The researchers don't know how many combined doses you need in order for the treatment to be effective.
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Tagged: cutaneous melanoma
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