› Forums › General Melanoma Community › Bilateral nodes show uptake on petscan
- This topic has 12 replies, 3 voices, and was last updated 7 years, 7 months ago by
Jules.
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- October 14, 2016 at 7:23 pm
Hello Everyone,
My father has stage IV melanoma as of his recent pet scan results. He has the BRAFV600K mutation
Some history for reference:
13 years ago primary melanoma found on the neck/bottom of hairline- barber noticed the change. Confirmed as melanoma, Clark Level IV with a 1.2 mm penetration-no ulceration and clear margins-staged 2 after a WLE. Sentinel node negative. He has been diligent seeing his dermatologist every 6 months with no more reoccurrences, just some pre-cancerous moles here and there.
April of 2016 he had a palpable super-clavicular lymph node that popped out of nowhere, they removed the node and it came back positive for melanoma taking over almost the entire node. A few weeks later he had a neck discussion with 10 nodes taken out, the node under the one infected with melanoma had a microscopic amount of cancer cells the rest were clear. Staged IIIB and started yervoy. Started the 3kg dose for the first 3 doses and up titrated to 10 kg for his fourth dose which was almost a month ago.
End of September he noticed two sub q nodules pop up around the incision area where he had the neck dissection, within a week those two turned into 4. I was under the impression that they took all the lymph nodes out but the pet scan and oncologist confirmed they were nodes. pet scan also showed avid scattered enlarged lymph nodes on both the left side (where he had the surgery and primary) and one now on the right side, confirmed a stage 4 diagnosis.
I was thinking that he had a localized in transit metastases but now it looks like it’s still in his lymph nodes, which one comes with a better prognosis?
He sees a melanoma specialist and has an appointment next week to go over the results and change therapies-
I am in the medical field and have spent years (especially this year) researching and trying to keep myself informed on all the latest treatment options available and it seems like the trickiest thing is to figure out the right sequencing of medications to ensure the best response- with the new data that shows yervoy BEFORE opdivo can drop the response rate of Opdivo in half, i feel like radiation and adding Opdivo to the yervoy he has been taking is his best bet right now. I know he can take the Taf/Mek combo but I like that as a back up as response rates for immunotherapy isn’t as high and if he doesn’t respond than he can at least fall back on those.
Sorry for the novel, just wanted to get some insight from all you brave warriors of this disease. I have learned so much from this board and I thank each and every one of you for sharing your stories, you have no idea how many lives you may have changed.
- Replies
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- October 15, 2016 at 2:29 am
Hi Anon,
You certainly have done your research. I kind of wanted to say "yes" to everything regarding next treatments. You can't un-ring the bell, and Yervoy before anti PD-1 seems to have been the standard of care. Been there and done exactly that. But I have been a stubborn non-responder until I did the Yervoy/Opdivo combo (first four doses simultaneously followed by every two-week Opdivo only). During my initial combo part of therapy I also received radiation to a couple of very large sub-q mets that were causing lots of trouble. This triple-play as I like to call it, has provided me with my first systemic treatment success, also knocking down several abdominal tumors that were not directly radiated. I'm a believer in the triple-play. I also agree the BRAF inhibitors could be used at some point to quickly reduce tumor burden should they be needed. With your specialist and your added help, smart strategies are forthcoming. Best in the battle.
Gary
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- October 15, 2016 at 6:34 pm
Gary,
i cant thank you enough for your reply. I wouldn't normally post as anonymous because I've had a profile for some time now but if my dad saw that I posted about this he may not be too pleased with me but I feel with the progression of his disease I need some input from the community. I am hoping the doctor will have opdivo and radiation as his next step, but I am educating myself as much as possible in case he wants to go another route. My dad is very nervous about having another surgery and it seems like a lot of his issues and sub qs happened after the neck dissection.
gary, I am so happy you have found the combo that is working for you and sincerely wish you will achieve NED status soon!
Take care,
jules
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- October 15, 2016 at 8:50 pm
Hi Jules, I am going to give you a link to peer exchange recent series that features Dr. Weber and Dr. Jason luke along with Dr. G. Long from Australia. It cover a wide variety of topics and is current. Best Wishes!!! Ed https://www.youtube.com/watch?v=oLHhaQCdEZo
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- October 15, 2016 at 8:50 pm
Hi Jules, I am going to give you a link to peer exchange recent series that features Dr. Weber and Dr. Jason luke along with Dr. G. Long from Australia. It cover a wide variety of topics and is current. Best Wishes!!! Ed https://www.youtube.com/watch?v=oLHhaQCdEZo
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- October 15, 2016 at 8:50 pm
Hi Jules, I am going to give you a link to peer exchange recent series that features Dr. Weber and Dr. Jason luke along with Dr. G. Long from Australia. It cover a wide variety of topics and is current. Best Wishes!!! Ed https://www.youtube.com/watch?v=oLHhaQCdEZo
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- October 15, 2016 at 6:34 pm
Gary,
i cant thank you enough for your reply. I wouldn't normally post as anonymous because I've had a profile for some time now but if my dad saw that I posted about this he may not be too pleased with me but I feel with the progression of his disease I need some input from the community. I am hoping the doctor will have opdivo and radiation as his next step, but I am educating myself as much as possible in case he wants to go another route. My dad is very nervous about having another surgery and it seems like a lot of his issues and sub qs happened after the neck dissection.
gary, I am so happy you have found the combo that is working for you and sincerely wish you will achieve NED status soon!
Take care,
jules
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- October 15, 2016 at 6:34 pm
Gary,
i cant thank you enough for your reply. I wouldn't normally post as anonymous because I've had a profile for some time now but if my dad saw that I posted about this he may not be too pleased with me but I feel with the progression of his disease I need some input from the community. I am hoping the doctor will have opdivo and radiation as his next step, but I am educating myself as much as possible in case he wants to go another route. My dad is very nervous about having another surgery and it seems like a lot of his issues and sub qs happened after the neck dissection.
gary, I am so happy you have found the combo that is working for you and sincerely wish you will achieve NED status soon!
Take care,
jules
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- October 15, 2016 at 2:29 am
Hi Anon,
You certainly have done your research. I kind of wanted to say "yes" to everything regarding next treatments. You can't un-ring the bell, and Yervoy before anti PD-1 seems to have been the standard of care. Been there and done exactly that. But I have been a stubborn non-responder until I did the Yervoy/Opdivo combo (first four doses simultaneously followed by every two-week Opdivo only). During my initial combo part of therapy I also received radiation to a couple of very large sub-q mets that were causing lots of trouble. This triple-play as I like to call it, has provided me with my first systemic treatment success, also knocking down several abdominal tumors that were not directly radiated. I'm a believer in the triple-play. I also agree the BRAF inhibitors could be used at some point to quickly reduce tumor burden should they be needed. With your specialist and your added help, smart strategies are forthcoming. Best in the battle.
Gary
-
- October 15, 2016 at 2:29 am
Hi Anon,
You certainly have done your research. I kind of wanted to say "yes" to everything regarding next treatments. You can't un-ring the bell, and Yervoy before anti PD-1 seems to have been the standard of care. Been there and done exactly that. But I have been a stubborn non-responder until I did the Yervoy/Opdivo combo (first four doses simultaneously followed by every two-week Opdivo only). During my initial combo part of therapy I also received radiation to a couple of very large sub-q mets that were causing lots of trouble. This triple-play as I like to call it, has provided me with my first systemic treatment success, also knocking down several abdominal tumors that were not directly radiated. I'm a believer in the triple-play. I also agree the BRAF inhibitors could be used at some point to quickly reduce tumor burden should they be needed. With your specialist and your added help, smart strategies are forthcoming. Best in the battle.
Gary
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Tagged: cutaneous melanoma
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