› Forums › Cutaneous Melanoma Community › What are the latest Chemos that are working?
- This topic has 14 replies, 9 voices, and was last updated 5 years, 11 months ago by aldrichdesigner.
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- January 3, 2019 at 8:24 pm
Due to the development of multiple nodules on my body that are visible through the skin, I’m having my CT scan moved up to Monday. Doctor says that they all look cutaneous so it is possible that the ipi/nivo is working but to be sure we will do a scan. But she does fear we are looking at most likely progression which sucks because I already did pembro and I made it through all 4 ipi/nivo. The next step was suppose to be opdivo maintenance. Wow wouldn’t that have been nice.Anyway, doc says next step is Chemo and that Temador is where she likes to start as it has a lower toxicity level. My question for all of you, is temador even considered an effective treatment anymore? What are the most current chemo drugs that have proven effective against melanoma? I will be doing my own research but sometimes asking here is the best place to start.
So any help that can be provided would be great.
Thanks all,
Jeremy
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- January 3, 2019 at 8:54 pm
Why not a PET scan with CT? My oncologist evaluates melanoma outside my brain with PET/CT scans and uses MRIs to check for melanoma in my brain. I have had 14 PET scans.
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- January 3, 2019 at 9:03 pm
PET scans are a lot harder to get approved by insurance. CT scans still offer enough insight without the need for a full body scan.At least, that’s what I’ve been told.
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- January 3, 2019 at 10:29 pm
Blue Cross, Sanford Health and Medicare have always approved PET scans for me. The Mayo Clinic did a PET scan for me as part of a clinical trial. I would ask your oncologist to request a PET scan. A PET scan is better at showing an active cancer. At Sanford Roger Maris Cancer Center a PET scan costs much less than one 480 mg infusion of Opdivo. I mean costs my health insurance; I don’t pay anything for either.
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- January 3, 2019 at 10:44 pm
Here is a primer I put together with a review of current melanoma therapies:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer
There is a board member in similar need here who is unable to tolerate any further ipi/nivo and here are the responses they were given: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/what-next-1
As I told them, old school chemo is not typically effective in melanoma. I hope you are seeing a melanoma specialist!!!! Things have really changed and temodar is not step 2 anymore!!!
Another possible option is targeted therapy with a BRAF/MEK combo if you are BRAF positive….though I guess given what your doc is saying, you are not.
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.
But, what might be most beneficial for you as you are describing superficial nodules is intralesional therapy. There are several types.
Here are lots of reports with links within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/reports-on-intralesionals-for-melanoma.html
Several folks on this board are currently in treatment with them, and you might check out posts by this guy!
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.
Please, please, please make sure you are being seen by a melanoma specialist. Hope this helps. I'm sure others will chime in. celeste
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- January 4, 2019 at 12:07 am
Have you and your oncologist given the ipi + nivo combo and then nivo alone enough time? I received Yervoy/Opdivo immunotherapy on April 1, June 3, June 24 and July 15, 2016. I had a PET scan on August 23, 2016. It was almost 5 months between beginning the combo immunotherapy and receiving my PET scan. Three or 4 years ago my oncologist told me that chemotherapy does not work for melanoma, but immunotherapy sometimes works. You might consider receiving Opdivo for 2 months and then evaluate.
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- January 4, 2019 at 2:27 pm
Bubbles has given you some great advice and I just wanted to add that I've not seen the term Temodar used here in YEARS. So, it's an old school treatment. Chemo also is not particularly effect at treating melanoma. If your doctor is not a melanoma specialist at a hospital with a department dedicated to melanoma (or pigmented lesions), you may want to get an appointment with one ASAP for a second opinion.
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- January 4, 2019 at 10:08 pm
Hi Jeremy, I had low dose chemo back in 2015 after failing Ipi/Nivo. At the time I was stage 4 with a golf ball size tumor in cheek/mouth,jawbone. The chemo partially fried the tumor(necrotic).I started Pembro shortly after and knocked my Mel out! Been NED ever since. The Drs. Reasoning was to piss the tumor off and gain an immune response with the Pembro. Best, Paul -
- January 5, 2019 at 3:13 am
Jeremy, are you a candidate for a PV-10 trial given that you have cutaneous nodules? It seems like that would be a prime opportunity to try it. As you know, I'm a fan of it!
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- January 7, 2019 at 10:56 pm
Yes, I read your blog about this, seems really intriguing and with some serious potential. Only issue is not only are there not any active trials that I can find but there definitely aren’t any near me. I’m in northwest Ohio so my only hope really is UofM, I could travel to penn or NY or something but I could never afford a trial in TX or FL. It would just cost too much to do the back and forth.I had my CT today so now I just sit back with fingers crossed and hope a good idea pops up soon.
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- January 8, 2019 at 12:07 am
Hoping your scans bring good news. But…..
…while I haven't read the details of all of these, here are a few studies that are recruiting and using intralesional (intratumoral) therapies that you may keep in mind…esp if you get your side effects re immunotherapy under control (which I imagine you will!!!):
PV-10 with pembro – recruiting in PA: https://clinicaltrials.gov/ct2/show/NCT02557321?term=PV-10&recrs=ac&cond=melanoma&rank=1
CAVATAK with pembro – recruiting in New Jersey: https://clinicaltrials.gov/ct2/show/NCT02565992?term=cavatak&recrs=ac&cond=Melanoma&rank=1
SD-101 with pembro – recruiting in Michigan (Detroit and Ann Arbor), Iowa, Illinois, NY, NJ, Nebraska, Ohio (Cincinnati and Cleveland): https://clinicaltrials.gov/ct2/show/study/NCT02521870?term=sd-101&recrs=ac&cond=Melanoma&rank=1&show_locs=Y#locn
That's just a quick search. https://clinicaltrials.gov/ is pretty easy to search. Each trial lists all locations at the bottom. If you are ever interested in any of them….even if you think you don't qualify….CALL the listed coordinator!!! You might find that you actually are, additional locations, or even be referred to other trials that suit you better.
For what it's worth! Celeste
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- January 8, 2019 at 6:48 pm
Celeste,You are a miracle worker for this forum. I only wish they would update the tech on this site to be more inline with the latest forum tools and spam guards. Anyway, thanks so much for the additional info.
Scans did come back with progression so I’m going to be meeting with my doc up at U of M. She putting a packet together for me to discuss available options through clinical trials etc and Im sure we will discuss the SD-101 trial. Thanks again, I’ll keep you all updated on what I hear.
Tagged: cutaneous melanoma
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