› Forums › General Melanoma Community › Question about delayed response
- This topic has 4 replies, 2 voices, and was last updated 3 years, 10 months ago by TimCT.
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- June 9, 2020 at 1:14 pm
Hi All,I began treatment for my melanoma in February of this year, initially staged as 3C/4. The disease was confined to my lymph nodes, though it was extensive – both axial and cervical on my left side and a couple nodes on my right.
The decision was made to start the ipi/nivo x 4 regimen, which I completed in May. There was noticeable swelling on the left side of my neck when we started, that shrunk noticeably after my first combo treatment, though it never completely went away, and swelling has steadily increased in that area since. My first scans post completion of the 4 infusions show overall disease progression. Some nodes appear smaller, some appear larger, but there is new progression as well, around my throat and under my jaw, as well as two very small (but very suspicious) spots in my upper lungs. We’re continuing with nivo by itself for at least the next 8 weeks, and if the disease at my throat becomes a problem as far as swallowing solid food, we’ll look at radiation in that area.
My hope is, of course, this is a delayed response to the drugs or pseudoprogression, and I may yet respond. However, the new disease under my jaw has me worried that whatever partial response I had earlier is it for me. Could I still have a delayed response, even if new disease is appearing? I thought that a delayed response was more seen in existing tumors growing post treatment, and then taking longer to shrink, and not necessarily a factor when new progression is brought into the mix.
As usual, looking for any positive news to hold on to!
Tim
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- June 9, 2020 at 2:34 pm
Hi Tim, here is a link to last years ASCO were a peer panel was put together talking about various melanoma topics. In the link they talk about what option are out there if the patient is experiencing primary or secondary resistance. Now, I hope that your situation is just delayed and the tumor will respond soon, however if you need option down the road this talk is pretty good. They cover phase one/two trials of such new combination like Lag-3, Tim-3, Tigit, NKTR-214 (nektar therapeutics and old IL-2 drug that has been modified) as well as injectables like T-vec and TLR-9 and also the use of radiation. I hope you find the information helpful. Ed https://www.youtube.com/watch?v=J-19Vk_kA0k-
- June 9, 2020 at 5:34 pm
Ed, thanks so much for the info. I’ll give it a listen. Dr Sznol did mention to me that there were new trials hopefully opening up that may be a fit for me should plan A prove to be ineffective – thank you for providing some hope with some concrete info! -
- June 9, 2020 at 7:19 pm
If you are seeing Dr. Mario Sznol at Yale then you are in good hands. I have watched many of his presentations over the years and he is great at presenting information about what is gong on in the melanoma world. Good luck! Ed -
- June 9, 2020 at 11:47 pm
Yes, I am in his care, that’s just about the only thing I feel good about. I have nothing but confidence that he’ll steer me towards the best treatments available, and to trials that might be in the works. I guess this is just one of those tough parts lots of us go through, requiring us to show faith and patience even as the picture gets a little bleaker.
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