› Forums › General Melanoma Community › Brother Diagnosed with Stage 4 Liver Melanoma, Hoping for a few answers
- This topic has 15 replies, 5 voices, and was last updated 12 years, 7 months ago by
Tim–MRF.
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- November 14, 2012 at 3:25 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
- Replies
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- November 14, 2012 at 4:58 am
I'm sorry that you've had to join this board but hopefully you will have others with experiences and help your family.
Yervoy with 3mg every 3 weeks for 4 infusions is the standard protocal. The 10mg is most likely in a trial.
There are many well known melanoma oncologists are in NY.
Linda
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- November 14, 2012 at 4:58 am
I'm sorry that you've had to join this board but hopefully you will have others with experiences and help your family.
Yervoy with 3mg every 3 weeks for 4 infusions is the standard protocal. The 10mg is most likely in a trial.
There are many well known melanoma oncologists are in NY.
Linda
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- November 14, 2012 at 4:58 am
I'm sorry that you've had to join this board but hopefully you will have others with experiences and help your family.
Yervoy with 3mg every 3 weeks for 4 infusions is the standard protocal. The 10mg is most likely in a trial.
There are many well known melanoma oncologists are in NY.
Linda
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- November 14, 2012 at 4:34 pm
Sorry to hear about your brother. I am a patient at Sloan taking Yervoy. Have done 3 doses so far (on the standard 3mg. I guess my question for you would be do you do the Ipi at the higher dose? try to get in Sloan to see about possibility of anti-pd1 trial? There is also the possibility to be tested for the BRAF mutation and do Zelboraf.
As Linda said – lots of very good doctors in the NYC area. Sorry that it's taking so long to get in to Sloan. I think initially I had to wait 2 weeks to get my first appointment. Longer if I had wanted to see a specific oncologist.
Erin
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- November 15, 2012 at 3:27 am
You may want to consider anti-pd1 clinical trail if he can get in one. The outcomes so far have been somewhat better than obtained with ipilimumab although the experience is more limited.
The first results of the current Merck Phase I trail were presented last Sun at a conference in Hollywood.
Other companies are also testing anti-pd1 for melanoma.
Participation in a clinical trial is a personal decision. I would encourage you to investigate here, with your oncologist, and with a second opinion oncologist.
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- November 15, 2012 at 3:27 am
You may want to consider anti-pd1 clinical trail if he can get in one. The outcomes so far have been somewhat better than obtained with ipilimumab although the experience is more limited.
The first results of the current Merck Phase I trail were presented last Sun at a conference in Hollywood.
Other companies are also testing anti-pd1 for melanoma.
Participation in a clinical trial is a personal decision. I would encourage you to investigate here, with your oncologist, and with a second opinion oncologist.
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- November 15, 2012 at 3:27 am
You may want to consider anti-pd1 clinical trail if he can get in one. The outcomes so far have been somewhat better than obtained with ipilimumab although the experience is more limited.
The first results of the current Merck Phase I trail were presented last Sun at a conference in Hollywood.
Other companies are also testing anti-pd1 for melanoma.
Participation in a clinical trial is a personal decision. I would encourage you to investigate here, with your oncologist, and with a second opinion oncologist.
-
- November 14, 2012 at 4:34 pm
Sorry to hear about your brother. I am a patient at Sloan taking Yervoy. Have done 3 doses so far (on the standard 3mg. I guess my question for you would be do you do the Ipi at the higher dose? try to get in Sloan to see about possibility of anti-pd1 trial? There is also the possibility to be tested for the BRAF mutation and do Zelboraf.
As Linda said – lots of very good doctors in the NYC area. Sorry that it's taking so long to get in to Sloan. I think initially I had to wait 2 weeks to get my first appointment. Longer if I had wanted to see a specific oncologist.
Erin
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- November 14, 2012 at 4:34 pm
Sorry to hear about your brother. I am a patient at Sloan taking Yervoy. Have done 3 doses so far (on the standard 3mg. I guess my question for you would be do you do the Ipi at the higher dose? try to get in Sloan to see about possibility of anti-pd1 trial? There is also the possibility to be tested for the BRAF mutation and do Zelboraf.
As Linda said – lots of very good doctors in the NYC area. Sorry that it's taking so long to get in to Sloan. I think initially I had to wait 2 weeks to get my first appointment. Longer if I had wanted to see a specific oncologist.
Erin
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- November 18, 2012 at 2:13 pm
My husband has been on the Ipi Trial of 10 mg since Mar. 2011. At the moment he is NED (no evidence of disease). He had tumors in the liver, lungs and one pushing on the spine that was inoperable along with several sub q's. We literally watched the sub q's disappear. He initially got Ipi every three weeks for the first 12 and then gets one infusion of Ipi every 12 weeks since. He also got the arm of the trial where he gets GM-CSF shots 2 weeks on and 1 week off. He has had a few side effects but his are all manageable. Read more in his profile if you would like.
Good luck with your decision.
Judy (loving wife of Gene)
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- November 18, 2012 at 2:13 pm
My husband has been on the Ipi Trial of 10 mg since Mar. 2011. At the moment he is NED (no evidence of disease). He had tumors in the liver, lungs and one pushing on the spine that was inoperable along with several sub q's. We literally watched the sub q's disappear. He initially got Ipi every three weeks for the first 12 and then gets one infusion of Ipi every 12 weeks since. He also got the arm of the trial where he gets GM-CSF shots 2 weeks on and 1 week off. He has had a few side effects but his are all manageable. Read more in his profile if you would like.
Good luck with your decision.
Judy (loving wife of Gene)
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- November 18, 2012 at 2:13 pm
My husband has been on the Ipi Trial of 10 mg since Mar. 2011. At the moment he is NED (no evidence of disease). He had tumors in the liver, lungs and one pushing on the spine that was inoperable along with several sub q's. We literally watched the sub q's disappear. He initially got Ipi every three weeks for the first 12 and then gets one infusion of Ipi every 12 weeks since. He also got the arm of the trial where he gets GM-CSF shots 2 weeks on and 1 week off. He has had a few side effects but his are all manageable. Read more in his profile if you would like.
Good luck with your decision.
Judy (loving wife of Gene)
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- November 19, 2012 at 4:06 pm
Tony:
When ocular melanoma spreads, it almost always goes to the liver–about 90% of the time. This presents a number of challenges that are, in some ways, different from typical metastases from other forms of melanoma. You may be able to get more precise information from the forum we have specifically for ocular melanoma, which can be found here:
http://www.melanoma.org/community/cure-om-forum
You will find a number of people there who have had Yervoy at both the 3 mg and 10 mg levels, as well as other treatments.
Tim–MRF
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- November 19, 2012 at 4:06 pm
Tony:
When ocular melanoma spreads, it almost always goes to the liver–about 90% of the time. This presents a number of challenges that are, in some ways, different from typical metastases from other forms of melanoma. You may be able to get more precise information from the forum we have specifically for ocular melanoma, which can be found here:
http://www.melanoma.org/community/cure-om-forum
You will find a number of people there who have had Yervoy at both the 3 mg and 10 mg levels, as well as other treatments.
Tim–MRF
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- November 19, 2012 at 4:06 pm
Tony:
When ocular melanoma spreads, it almost always goes to the liver–about 90% of the time. This presents a number of challenges that are, in some ways, different from typical metastases from other forms of melanoma. You may be able to get more precise information from the forum we have specifically for ocular melanoma, which can be found here:
http://www.melanoma.org/community/cure-om-forum
You will find a number of people there who have had Yervoy at both the 3 mg and 10 mg levels, as well as other treatments.
Tim–MRF
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