› Forums › General Melanoma Community › numerous liver mets, did not respond to ipi/nivo – Need advice
- This topic has 12 replies, 2 voices, and was last updated 10 years, 2 months ago by
Bubbles.
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- December 31, 2015 at 1:36 pm
My husband was diagnosed with melanoma in 2010. His melanoma was found in a cyst on his head. He had surgery, a skin graft, sentinal node was negative. He had a satelitte met off from the primary. He did a year of interferon and had radiation on his scalp. He was NED for five years. In September of this year, 2015, they found multiple mets in his liver. He is BRAF negative. He is 47 years old and otherwise very healthy. He got into a clinical trial for yervoy and opdivo. After 3 treatments (the day before the 4th treatment was scheduled) he had a scan that showed the tumors had not responded to the treatment. The tumors were growing rapidly. They had spread throughout the liver. Numerous mets in both lobes, the majority being the left lobe. Mets had also spread to the mesentery membrane. 2 small mets in lungs. His LDH levels were 2443. His oncologist admitted him to the hospital to get taxol/carbo in him right away in hopes to slow the rapid growth. He has had one treatment and will have another on Jan. 8th. We saw his oncologist yesterday (dec. 30th) the swelling in his liver seems to have gone down. He feels tired, discomfort in abdomen, of course. He has lost a little over 20 pounds. He is very strong, works still partly from home. His oncologist referred us to Dr. Salama, a high risk melanoma specialist at Duke. We live in SW Virginia. Does anyone have any opinions about Duke's melanoma center or any other advice to give? Thank you for your support. Prayers to all of you who face this terrible disease.
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- December 31, 2015 at 5:15 pm
Sorry you and your husband are dealing with all of this. Here are my thoughts:
Duke is well respected. I would certainly seek treatment there…however when looking for more specialized, out-of-the-box care…you may have to seek second opinions.
Pseudoprogression can be real (though it usually refers to the increase in size of existing tumors with no significant increase in LDH….but initial growth can occur)…and immunotherapy may need to be given time…
You and your husband may need to talk to his doc about other treatments: LAG-3, CEACAM, as well as NRAS testing. There is TIL as a potential treatment…very tough…but still. There's IL2 as well. And here are some out-there treatment possibilities I put together for a dear one….not advocating any of these, mind you….but when things get down to the nitty gritty you gotta do what you can:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/for-mat.html
You can use the search bubble on my blog for additional info about all topics except CEACAM. I haven't gotten a post up on that one…but a Phase 1 trial was started in Jan of last year using it. Perhaps more data is available on it now.
I wish you both my best. Celeste
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- December 31, 2015 at 5:15 pm
Sorry you and your husband are dealing with all of this. Here are my thoughts:
Duke is well respected. I would certainly seek treatment there…however when looking for more specialized, out-of-the-box care…you may have to seek second opinions.
Pseudoprogression can be real (though it usually refers to the increase in size of existing tumors with no significant increase in LDH….but initial growth can occur)…and immunotherapy may need to be given time…
You and your husband may need to talk to his doc about other treatments: LAG-3, CEACAM, as well as NRAS testing. There is TIL as a potential treatment…very tough…but still. There's IL2 as well. And here are some out-there treatment possibilities I put together for a dear one….not advocating any of these, mind you….but when things get down to the nitty gritty you gotta do what you can:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/for-mat.html
You can use the search bubble on my blog for additional info about all topics except CEACAM. I haven't gotten a post up on that one…but a Phase 1 trial was started in Jan of last year using it. Perhaps more data is available on it now.
I wish you both my best. Celeste
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- December 31, 2015 at 5:15 pm
Sorry you and your husband are dealing with all of this. Here are my thoughts:
Duke is well respected. I would certainly seek treatment there…however when looking for more specialized, out-of-the-box care…you may have to seek second opinions.
Pseudoprogression can be real (though it usually refers to the increase in size of existing tumors with no significant increase in LDH….but initial growth can occur)…and immunotherapy may need to be given time…
You and your husband may need to talk to his doc about other treatments: LAG-3, CEACAM, as well as NRAS testing. There is TIL as a potential treatment…very tough…but still. There's IL2 as well. And here are some out-there treatment possibilities I put together for a dear one….not advocating any of these, mind you….but when things get down to the nitty gritty you gotta do what you can:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/for-mat.html
You can use the search bubble on my blog for additional info about all topics except CEACAM. I haven't gotten a post up on that one…but a Phase 1 trial was started in Jan of last year using it. Perhaps more data is available on it now.
I wish you both my best. Celeste
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- December 31, 2015 at 5:19 pm
Found this: https://clinicaltrials.gov/ct2/show/NCT02346955?term=ceacam+melanoma&rank=1
For what it's worth. C
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- December 31, 2015 at 5:19 pm
Found this: https://clinicaltrials.gov/ct2/show/NCT02346955?term=ceacam+melanoma&rank=1
For what it's worth. C
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- December 31, 2015 at 5:19 pm
Found this: https://clinicaltrials.gov/ct2/show/NCT02346955?term=ceacam+melanoma&rank=1
For what it's worth. C
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- December 31, 2015 at 8:38 pm
Thank you Celeste for all the information. I really appreciate your experise and commitment to helping people navigate this difficult territory. Your blog is a great resource. I have been researching the information you shared and will ask about these treatments when we go to Duke. My brother is a pulmonologist up north and he too shared we may need to look into out-of-the-box experimental treatments. I saw some interesting clinical trials through NCI as I was researching. I was going to call their referral number on Monday. Do you know anything about applying to trials through NCI? Thanks again for your help. Prayers and good wishes that you continue to do so well, I will keep reading your wonderful blog! -Leigh
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- December 31, 2015 at 8:38 pm
Thank you Celeste for all the information. I really appreciate your experise and commitment to helping people navigate this difficult territory. Your blog is a great resource. I have been researching the information you shared and will ask about these treatments when we go to Duke. My brother is a pulmonologist up north and he too shared we may need to look into out-of-the-box experimental treatments. I saw some interesting clinical trials through NCI as I was researching. I was going to call their referral number on Monday. Do you know anything about applying to trials through NCI? Thanks again for your help. Prayers and good wishes that you continue to do so well, I will keep reading your wonderful blog! -Leigh
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- December 31, 2015 at 8:38 pm
Thank you Celeste for all the information. I really appreciate your experise and commitment to helping people navigate this difficult territory. Your blog is a great resource. I have been researching the information you shared and will ask about these treatments when we go to Duke. My brother is a pulmonologist up north and he too shared we may need to look into out-of-the-box experimental treatments. I saw some interesting clinical trials through NCI as I was researching. I was going to call their referral number on Monday. Do you know anything about applying to trials through NCI? Thanks again for your help. Prayers and good wishes that you continue to do so well, I will keep reading your wonderful blog! -Leigh
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- January 1, 2016 at 12:15 am
Hey Leigh,
All I know to tell you is to call the doc or trial coordinator or institution that is listed in any trial you find that you are interested in. Perhaps looking at what is more geographically advantageous or clinically so. Call. All they can say is no. And they might say yes…or give options that you don't even know about. I wish you my best. C
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- January 1, 2016 at 12:15 am
Hey Leigh,
All I know to tell you is to call the doc or trial coordinator or institution that is listed in any trial you find that you are interested in. Perhaps looking at what is more geographically advantageous or clinically so. Call. All they can say is no. And they might say yes…or give options that you don't even know about. I wish you my best. C
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- January 1, 2016 at 12:15 am
Hey Leigh,
All I know to tell you is to call the doc or trial coordinator or institution that is listed in any trial you find that you are interested in. Perhaps looking at what is more geographically advantageous or clinically so. Call. All they can say is no. And they might say yes…or give options that you don't even know about. I wish you my best. C
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