Advice for a friend with stage 4

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Advice for a friend with stage 4

This topic has 4 replies, 3 voices, and was last updated 6 years, 10 months ago by Jubes.

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- June 25, 2017 at 11:42 am
- Quote
Jubes
Participant
Hi all

i haven't posted for a while. I've been waiting for my next pet on July 4 (no long weekend here)

meanwhile I have a next door neighbour who also has stage 4. He did 2 years of Pembro, had had two new mets since he was on it and 5 months ago had to have the duodenum surgically removed because the new met was between that and his pancreas. He is just starting to recover from that op. It was traumatic. He is sbout 70. His last ct was clear but he is very thin and naturally he and his wife are thinking what the next plan would be if another met appears. The original was in his media Steinem but he had also had it in his adrenal gland and had that respected too. He's been off pembro since January and has not had too bad side effects. When h gets them they tend to be bad rashes and vitiligo.

His doctor says he would not put him back on keytruda since he had new mets while on it, so the next step would be chemo which my friend is not keen on.

Does anyone have any ideas of what the most effective next step would be if not chemo? I know there is the new treatment that Georgina long presented at asco but apparently that has bad side effects. Does anyone know anything about that?

thanks

anne-Louise

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- - June 25, 2017 at 1:23 pm
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  Christine.P
  Participant
  Hi, Jubes. Do you know if he is BRAF positive? I recently failed the ipi/nivo combo followed by a year of nivo and just started the Tafinlar/Mekinist combo. It is an oral chemo you take twice daily at home. It's not a long term treatment because, as I put it in my clunky layman's terms, the tumors figure it out and it stops working. Most people get about a year of positive results, I'm told; although I met a man the other day for whom it worked for 6 years!
  
  I don't know if this is helpful, but I thought I would share. My heartfelt best wishes to both of you.
  - June 25, 2017 at 1:52 pm
    
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    ed williams
    Participant
    
    Hi Anne-Marie, there is so many new trials right now with various combinations that it is hard to keep straight. Celeste has been keeping up on things on her blog, that would be my best advice. For Christine, I would have to disagree with the long term part of targeted therapy, if you take a look at the link to Dr. Weber talking at the Angeles Clinic about targeted therapies recently, go to the 15min mark where he talks about long term survival #'s, they are actually better than Ipi. Best Wishes!!!Ed https://www.youtube.com/watch?v=ZBcRHFGTyGs
  - June 25, 2017 at 10:34 pm
    
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    Jubes
    Participant
    
    Thanks so much Ed!
  - June 25, 2017 at 10:35 pm
    
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    Jubes
    Participant
    
    Thanks Christine

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