› Forums › Cutaneous Melanoma Community › what next?
- This topic has 5 replies, 4 voices, and was last updated 6 years, 5 months ago by
Bubbles.
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- January 2, 2019 at 6:15 pm
I was diagnosed with Stage 4 Metastatic Melonoma in Dec. 2015/Jan. 2016. They surgically removed stuff on top of my skin (in bikini area) but it had spread too far, thus the Stage 4 diagnosis. I did Tafinlar/Mekinist starting in May 2016 until Oct. 2017 when the tumors (2, now 3) were not breaking up at all, etc. Went on Opdivo, twice a month. Started Yervoy with Opdivo in Feb. 2018 as once again the tumors started growing. Got thru 3 double infusions then my liver levels went to hell. Diagnosed as auto-immune hepatitis. No more infusions and weekly bloodwork plus steroids to stop inflammation and to keep eye on liver as failure was very possible – they then tried Mycophenolate, a liver transplant drug for patients whose body starts rejecting the new liver. It tricked my system into thinking I had a new liver and to "please accept it" (my words). It worked, my levels finally came down after 2 months. This was in November.
So, now doc says he will not put infusions into me – I am too likely to trigger organ failure with the drugs. I get that. So we are just waiting – for what? I am nervous as I have daily bad joint pain, nausea and have since cancer started – they have not abated. Joint pain is worse, I take opoids and anti-nausea, blood pressure and anxiety drugs. Without these – well, I cannot imagine how bad life would be. He says he's looking for a new/different treatment but nothing yet. My November petscan showed a tiny bit of growth, but he was not concerned. He is a great doctor I think,, but I am wondering what could possibly be next? Is chemo the logical next step? Are there other pills people take for Stage 4? My appt. is next week so any good conversation points would be nice.
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- January 2, 2019 at 9:40 pm
Hi
im in a similar position to you but also had pituitary gland issues and was on mycophenelate for 3 months and up to 2grams a day. The view of my docs was that such a strong reaction was good news and my first scan showed 20% reduction but now stable. They are hopeful I will now remain stable so it’s just a waiting game. Hopefully your next scan will show stable disease and you can relax a little
best wishes
mark
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- January 3, 2019 at 1:27 am
Sorry you have been dealing with all this. Old school chemo is not typically effective in melanoma. I hope you are seeing a melanoma specialist. You can always seek a second opinion with one if you have the need. The good news is that despite the horrible side effects you have been dealing with that caused you to cease the ipi/nivo combo (Yervoy/Opdivo) we have learned that many folks who have to stop their infusions still respond well. Here is a report:
Additionally, we have learned through other patients that, even though you have had these side effects, it is POSSIBLE, that once they are under control and all your values are stable, you may well be able to tolerate infusions of the Opdivo as a single agent if you need it. We know that Yervoy is the bad boy of side effects.
Another possible option is the reintroduction of targeted therapy with a different BRAF/MEK combo. Though if there was absolutely no effect, I'm not sure how useful that would be.
Another option is the addition of radiation. We have learned that while radiation alone is not particularly effective in melanoma, when it is combined with immunotherapy the response is better than when either radiation or immunotherapy is used alone. Here are a zillion articles:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
While lots of these refer to immunotherapy and radiation used concurrently, given how recently you had immunotherapy, you should still have the potential to reap those benefits.
Another option is additional tumor testing. We have found that when a patient's melanoma tumors do not respond to the standard therapies (like those you have already tried) they may have specific mutations in their tumors that WILL respond to other treatments. For instance, some patient's tumors have been positive to mutations typically found in breast cancer and once that is discovered and they are treated with the appropriate medicine for that mutation, they respond very well.
Finally, joint pain is a very common side effect to immunotherapy and takes some time to resolve even after the immunotherapy has been stopped.
I hope this helps. I don't know your entire circumstance, but given what you have said, these are things I would certainly discuss with my doc if I were in your shoes. I wish you my best. Celeste
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- January 3, 2019 at 1:36 am
One other thought, if your melanoma lesions are superficial (I wasn't sure based on your post) intralesional therapy (medications that are injected directly into the tumors) is another very good treatment option. Here is a report on those with lots of links within:
c
Tagged: cutaneous melanoma
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