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Melanoma in Gallbladder

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Melanoma in Gallbladder

Posted By
Affinity4Mountains
6/16/2020 5:04pm
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Replies: 5

I need some ideas or opinions on how to pursue continued treatment. I had my gallbladder removed recently and it had several small tumors inside the gallbladder. A recent PET scan shows no other evidence of disease in my body. In November 2019 I had one lymph node removed in my groin and went on Optivo starting in January 2020. A PET scan in January showed disease in the Liver area and a lymph node was biopsied and shown negative for cancer - apparently it was not this lymph node that had cancer but the nearby gallbladder (not sure how they mistakes this) so I had melanoma in gallbladder for 5 months! My recent PET scan in May showed that the tumors in my gallbladder grew in size from January to May.

Question - do I stay on Optivo since the tumors grew? Add another immunotherapy like Yervoy or move to BRAF /MEK inhibitors since my tumors are BRAF v600e? Or clinical trial?

Has anybody Taken and experienced BRAF /MEK side effects - what are those like?

Thanks

Affinity4Mountains Stage 4

sandyd77 - (6/16/2020 - 10:07pm)

Hello,

My husband was diagnosed with Melanoma on his back in February of 2018 - he had a Wide Excision and also an axillary lymph node removal. Even though sentinel node was positive - all axillary nodes tested negative in September of 2018. All was good until May of 2019 when we went for a routine scan and found the Melanoma had returned and metastasized to his lung, with a few subcutaneous lesions in his back and a small met in his liver. He started on Opdivo in June of 2019 and continued through January of 2020. Initially there was a mixed response but in time, the tumors grew in his lungs and on his back. He tested BRAF Positive and his oncologist started him on Taflinar and Mekinist in March of this year. We noticed a reduction in size on the tumors on his back very quickly. He just had a Scan done last week and ALL tumors, internally and on his back have reduced significantly after 2.5 months of targeted therapy. As for side effects, fever seems to be the big one with the oral chemo drugs but it is not a constant thing. We have been able to manage with tylenols. He also has some rash and itching as well as a good bit of fatigue but he is able to get through the day and is really doing OK. We are very pleased with the response of the Taflinar and Mekinist and will continue with it. I hope it works for you. Make sure you learn all you can about the side effects and how to manage - that is half the battle. I wish you all the best in your fight.

Sandy D.

Thanks Sandy! Hope your husband continues to do better. So he’d to reach a sign post and choose a direction for sure. How long did they make him wait when they took him off immunotherapy and put him on the inhibitors? I obviously don’t won’t to wait too long to transition if I decide to do that. I am going to the Mayo Clinic this week to seek another opinion also.

Affinity4Mountains
Stage 4

sandyd77 - (6/17/2020 - 8:37pm)

He was on immunotherapy for 8 Months. He stopped in February and started the targeted therapy in March s0 there was not a long period between ending immunotherapy and starting targeted. The immunotherapy did provide some response initially but there was an extended period of time where nothing was happening, then everything started increased in size. Good Luck!

Sandy D

Bubbles - (6/17/2020 - 8:48am)

So sorry for what you are dealing with A4M. Glad you are seeking a second opinion. Melanoma doesn't make things easy.

Here is a collection of articles on how to choose immunotherapy vs targeted: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melan...

Since you progressed while on anti-PD-1 as a single agent, you might be interested in this report: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/how-t...

And generally, here is information on current melanoma therapies that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

Hope this helps. I wish you my best. Celeste

Thanks! So much info to assess. Hopefully will find more clarity after speaking with Doctors

Erich

Affinity4Mountains
Stage 4