› Forums › General Melanoma Community › Brother Diagnosed with Stage 4 Liver Melanoma, Hoping for a few answers
- This topic has 9 replies, 3 voices, and was last updated 12 years, 7 months ago by
Erinmay22.
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- November 14, 2012 at 3:24 am
Hello all,
I am new to this board and hoping to contribute in the future. At this point I am hoping for some feedback as we are still learning about this disease.
Hello all,
I am new to this board and hoping to contribute in the future. At this point I am hoping for some feedback as we are still learning about this disease.
My brother is 37 and a previous occular melanoma patient. 4 years clear after his treatment.. That was 2 years ago. Last week he was diagnosed with stage 4 liver melanoma. We are in NYC and he was diagnosed at a city hospital by a very compitant oncologist. The Oncologist is recommending a high dose (10mg) 6 dose treatment regimem of Yervoy — IPI. We are talking to Sloan and unfortunately it is taking a while to get an appointment. We have heard throught the grapevine that they also recommend this level of dosing. Without a second opinion, we turned to another Oncologist at a top NY teaching hospital. This person comes highly recommended and they recommend a totally different course of therapy. Yervoy at 3mg for 4 doses, take a scan, see the results and then wait an additional 8 to 12 weeks without additional therapy and run a scan again.
Stage 4 is very scary. I don't need to tell that to anyone on this board. I need help understanding the best course of therapy from the patient perspective. Has anyone tried this high of a dose? if so, was it tolerated? Was 3mg effective at slowing the growth. If it wasn't, what was the next step. Any insights would be greatly appreciated.
Tony
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- November 14, 2012 at 11:54 am
Yes, stage IV is scary– but it's no longer the death sentence it was even 3 or 4 years ago. New, more effective drugs (including Yervoy) have been introduced in the last year and several other promising treatments are in the clinical trial pipeline now. So don't panic. The first and most important thing to find out is whether his tumor has the BRAF mutation. Tumors with the BRAF mutation respond to some very good new treatments like Zelboraf. So he would need to get the lesion biopsied and then wait 2 or 3 weeks for the result. Then you can read up on the clinical trials being conducted now and see if your brother qualifies for and is interested in any of them. He should do this before starting any type of chemo because taking chemo could disqualify him from some clinical trials.
Going to a major melanoma center like Sloan Kettering is very important. If he only has one metastasis, he might be able to have it removed surgically or by stereotactic radiosurgery (SRS) and not need chemo at all. The first month after a diagnosis are the worst. Everybody is frightened. You want to know what to expect and what is the "right" thing to do. Waiting for this and for that drives you crazy. But you do have time. It's better to slow down a little, get the BRAF test done, consult with a radiosurgeon and a melanoma oncologist, and then make your decisions.
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- November 14, 2012 at 12:45 pm
Thank you very much for the feedback. Unfortunately, it is not operable as there are several in the liver and he also has a small mass in his back vertibrea. We are down the road on BRAF testing but based on the size he wants to start treatment with Yervoy. Thank you again for your feedback.
Any further feedback on dosing with Yervoy would be greatly appreciated.
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- November 14, 2012 at 4:49 pm
Just saw this note on the BRAF testing. With my experience at Sloan – they started with Zelboraf to shrink my tumor (which I eventually had to have removed surgically). I would think if there are a number of tumors and you go to Sloan they may take a similiar approach – start with BRAF and get things to go away and then make a switch over to Yervoy since that can take longer to work… I think there are even trials out there now looking even at taking both at the same time. but again everyone is different! Best of luck!
Erin
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- November 14, 2012 at 4:49 pm
Just saw this note on the BRAF testing. With my experience at Sloan – they started with Zelboraf to shrink my tumor (which I eventually had to have removed surgically). I would think if there are a number of tumors and you go to Sloan they may take a similiar approach – start with BRAF and get things to go away and then make a switch over to Yervoy since that can take longer to work… I think there are even trials out there now looking even at taking both at the same time. but again everyone is different! Best of luck!
Erin
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- November 14, 2012 at 4:49 pm
Just saw this note on the BRAF testing. With my experience at Sloan – they started with Zelboraf to shrink my tumor (which I eventually had to have removed surgically). I would think if there are a number of tumors and you go to Sloan they may take a similiar approach – start with BRAF and get things to go away and then make a switch over to Yervoy since that can take longer to work… I think there are even trials out there now looking even at taking both at the same time. but again everyone is different! Best of luck!
Erin
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- November 14, 2012 at 12:45 pm
Thank you very much for the feedback. Unfortunately, it is not operable as there are several in the liver and he also has a small mass in his back vertibrea. We are down the road on BRAF testing but based on the size he wants to start treatment with Yervoy. Thank you again for your feedback.
Any further feedback on dosing with Yervoy would be greatly appreciated.
-
- November 14, 2012 at 12:45 pm
Thank you very much for the feedback. Unfortunately, it is not operable as there are several in the liver and he also has a small mass in his back vertibrea. We are down the road on BRAF testing but based on the size he wants to start treatment with Yervoy. Thank you again for your feedback.
Any further feedback on dosing with Yervoy would be greatly appreciated.
-
- November 14, 2012 at 11:54 am
Yes, stage IV is scary– but it's no longer the death sentence it was even 3 or 4 years ago. New, more effective drugs (including Yervoy) have been introduced in the last year and several other promising treatments are in the clinical trial pipeline now. So don't panic. The first and most important thing to find out is whether his tumor has the BRAF mutation. Tumors with the BRAF mutation respond to some very good new treatments like Zelboraf. So he would need to get the lesion biopsied and then wait 2 or 3 weeks for the result. Then you can read up on the clinical trials being conducted now and see if your brother qualifies for and is interested in any of them. He should do this before starting any type of chemo because taking chemo could disqualify him from some clinical trials.
Going to a major melanoma center like Sloan Kettering is very important. If he only has one metastasis, he might be able to have it removed surgically or by stereotactic radiosurgery (SRS) and not need chemo at all. The first month after a diagnosis are the worst. Everybody is frightened. You want to know what to expect and what is the "right" thing to do. Waiting for this and for that drives you crazy. But you do have time. It's better to slow down a little, get the BRAF test done, consult with a radiosurgeon and a melanoma oncologist, and then make your decisions.
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- November 14, 2012 at 11:54 am
Yes, stage IV is scary– but it's no longer the death sentence it was even 3 or 4 years ago. New, more effective drugs (including Yervoy) have been introduced in the last year and several other promising treatments are in the clinical trial pipeline now. So don't panic. The first and most important thing to find out is whether his tumor has the BRAF mutation. Tumors with the BRAF mutation respond to some very good new treatments like Zelboraf. So he would need to get the lesion biopsied and then wait 2 or 3 weeks for the result. Then you can read up on the clinical trials being conducted now and see if your brother qualifies for and is interested in any of them. He should do this before starting any type of chemo because taking chemo could disqualify him from some clinical trials.
Going to a major melanoma center like Sloan Kettering is very important. If he only has one metastasis, he might be able to have it removed surgically or by stereotactic radiosurgery (SRS) and not need chemo at all. The first month after a diagnosis are the worst. Everybody is frightened. You want to know what to expect and what is the "right" thing to do. Waiting for this and for that drives you crazy. But you do have time. It's better to slow down a little, get the BRAF test done, consult with a radiosurgeon and a melanoma oncologist, and then make your decisions.
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