› Forums › Cutaneous Melanoma Community › Uveal melanoma with mets – several months nivo and 3 monts ipi
- This topic has 6 replies, 4 voices, and was last updated 4 years, 6 months ago by
Gene_S.
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- October 8, 2019 at 3:32 pm
Hi, everyone.
I am very thankful for all your posts, I have learned so much about the disease and its treatment!
My mother-in-law was first diagnosed in 2009. She had radiation and though she has lost her sight partially, she has led a normal life until last january. They found mets in her stomach, liver and kidney and recently some subcutaneous lumps were considered malign as well. She had immuno (nivo, alone) from february to september. As the results were not as good as the oncologist expected, she said there was not much to be done, but they could try ipi, even though she was sure it wouldn’t help. After that, the only treatment would be chemo, but she said she didn’t believe it would have good results.
There are no support groups like this in Portugal, where we live, so I would love to hear your stories, advice, comments, ideas… since from what I have read here, there were/ are other options. How were you treated in similar situations?Wishing you all luck, hope and strenght.
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- October 8, 2019 at 3:45 pm
Sometimes ipi/nivo immunotherapy works for stage 4 melanoma, after pembro or nivo alone has failed. Melanoma spread to several more of my bones while I received pembro immunotherapy. Switching to ipi/nivo immunotherapy put my bone cancer into remission. Why is your mother-in-law’s oncologist sure that ipi/nivo will fail?-
- October 9, 2019 at 1:37 am
Thank you so much for your comments, Edwin. The doctor doesn’t give much information, she said the ocular melanoma doesn”t respond the same way other melanoma types.
I don’t know anything about BRAF, she has never mentioned it, but I realized many patients here do, it seems it is crucial…
Tomorrow she is having an appointment with an oncologist who is a specialist on melanoma for a second opinion. Maybe she has other options…
Thank you so much for your support. I hope you keep winning every battle that comes your way.
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- October 9, 2019 at 1:08 pm
It is true that not all melanoma behaves in the same way. When we think of melanoma as a group, we most often think of “cutaneous” melanoma – melanoma that starts on the skin, though it may then progress to any place in the body. And even though it is a nightmare to treat – it is the most responsive to current therapies. Ocular (or uveal) as well as mucosal melanoma are melanomas that start (obviously) in the eye or mucus membranes and have proven that they are more difficult to treat. Typing for a variety of mutations is important in cutaneous melanoma, but can be even more important in the subtypes. Seeing a melanoma specialist is also very important so I am glad your mother in law is about to do that.Though response rates to the ipi/nivo combo for the subtypes are not as high as they are for cutaneous melanoma, they can still occur, as noted in the bottom article of this post: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melanoma-patients-want-to-know-what-do.html So it is possible that your MIL may just need a bit more time on the combo, I can’t really tell how long she has been on it from your post.
That said, there are treatment options (other than chemo, to which melanoma of all stripes responds poorly) for uveal melanoma. There is this from 2018: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/trial-option-for-folks-with-uveal.html
There is also this from this year’s ASCO meeting – specifically the TIM-3 option: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-stuff-treatment-options-and-current.html
Because of their difficulty to treat, melanoma peeps with CNS lesions, uveal melanoma, and mucosal melanoma have long been excluded from clinical trials, therefore we know even less about those subtypes than others. Something I have yelled and screamed about for years. However, it never hurts to ask about treatment options. Sometimes….folks can be included in an “off label” sort of way.
Here is a site that may be helpful if you are interested in looking at clinical trials: https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Uveal+Melanoma&term=&cntry=&state=&city=&dist=
This is a list of clinical trials that are currently recruiting for uveal melanoma. You can click on each trial and see what the drugs are, what the inclusion and exclusion criteria are, and at the bottom – a list of all locations across the globe that are administering the trial. Even if they are not taking place in your area, you could ask your doc about access to the drug in question if you are interested in it.
Hope that helps. Wishing you and your mother in law my best. Celeste
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- October 9, 2019 at 2:25 pm
I can’t thank you enough, Celeste, for your precious information. I had read other posts you have in the forum and I have seen how helpful and trustful you and your information are. God bless you!
By the way, my mother-in-law didn”t do the combo. She did nivo alone, first, and a couple of weeks ago, she had the first take of ipi alone (she will have three more).
A grateful hug from the Azores, where I live, and from Lisbon, where my mother- in -law lives.
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- October 16, 2019 at 8:03 pm
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Tagged: cutaneous melanoma, ocular melanoma
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