› Forums › General Melanoma Community › Post cranio and GK: adjuvant or wait and watch ?
- This topic has 3 replies, 1 voice, and was last updated 12 years, 5 months ago by
Lisa13.
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- November 16, 2011 at 7:06 am
Hi wise MPIP-ers. Asking again on behalf of a friend who – as you can imagine – has a lot on his plate right now. He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last. We are both working in Asia. His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared. His U.S doctor (Mayo Clinic) on the other hand, says don't waste th
Hi wise MPIP-ers. Asking again on behalf of a friend who – as you can imagine – has a lot on his plate right now. He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last. We are both working in Asia. His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared. His U.S doctor (Mayo Clinic) on the other hand, says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.
If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice. Do any of you have thoughts or evidence either way for this decision ?
any and all advice and opinions gratefully received – with much thanks to those people who are still kicking mel in the face every day….
AlisonC
Stage IIIB
NED since 2001
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- November 19, 2011 at 3:02 pm
Hi Alison,
I just had 2 brain mets gamma knifed this past Tuesday, so I do have some experience.
Even though your friend may be NED right now, it's a good thing to go on the ipi and see if it helps keep anymore brain mets from coming. Even if the ipi helps and he reoccurs again, you can use it again which is great news! If he's BRAF positive, then I would personally wait to use that until I really needed it. IPI needs time to work (3 months) so if he has low tumour burden now, it's a great time to use it.
On October 31st I found out I had 50% regression in my lungs and some had even disappeared. However, I also found 2 brain mets which came sometime after August which was the time I started ipi. While they were growing, ipi was taking it's time to work, so they didn't have much of chance – now they might. I'm hoping that these 2 brain mets I had are the only 2 I get for a long time and hope that ipi is doing it's job to keep the micro cells from growing in the brain. Since it's worked in my lungs, I can go on it again.
I'm telling my story so your friend has some advice. Even though his brain mets have been removed and zapped, you always worry about the potential of more growing. It's not 100% that it will grow again, it's just a possibility. Let's hope this doesn't happen for a long time.
Lisa
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- November 19, 2011 at 3:02 pm
Hi Alison,
I just had 2 brain mets gamma knifed this past Tuesday, so I do have some experience.
Even though your friend may be NED right now, it's a good thing to go on the ipi and see if it helps keep anymore brain mets from coming. Even if the ipi helps and he reoccurs again, you can use it again which is great news! If he's BRAF positive, then I would personally wait to use that until I really needed it. IPI needs time to work (3 months) so if he has low tumour burden now, it's a great time to use it.
On October 31st I found out I had 50% regression in my lungs and some had even disappeared. However, I also found 2 brain mets which came sometime after August which was the time I started ipi. While they were growing, ipi was taking it's time to work, so they didn't have much of chance – now they might. I'm hoping that these 2 brain mets I had are the only 2 I get for a long time and hope that ipi is doing it's job to keep the micro cells from growing in the brain. Since it's worked in my lungs, I can go on it again.
I'm telling my story so your friend has some advice. Even though his brain mets have been removed and zapped, you always worry about the potential of more growing. It's not 100% that it will grow again, it's just a possibility. Let's hope this doesn't happen for a long time.
Lisa
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- November 19, 2011 at 3:02 pm
Hi Alison,
I just had 2 brain mets gamma knifed this past Tuesday, so I do have some experience.
Even though your friend may be NED right now, it's a good thing to go on the ipi and see if it helps keep anymore brain mets from coming. Even if the ipi helps and he reoccurs again, you can use it again which is great news! If he's BRAF positive, then I would personally wait to use that until I really needed it. IPI needs time to work (3 months) so if he has low tumour burden now, it's a great time to use it.
On October 31st I found out I had 50% regression in my lungs and some had even disappeared. However, I also found 2 brain mets which came sometime after August which was the time I started ipi. While they were growing, ipi was taking it's time to work, so they didn't have much of chance – now they might. I'm hoping that these 2 brain mets I had are the only 2 I get for a long time and hope that ipi is doing it's job to keep the micro cells from growing in the brain. Since it's worked in my lungs, I can go on it again.
I'm telling my story so your friend has some advice. Even though his brain mets have been removed and zapped, you always worry about the potential of more growing. It's not 100% that it will grow again, it's just a possibility. Let's hope this doesn't happen for a long time.
Lisa
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