Call out for UPDATES! How are you doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Wed Mar 06, 2019 1:24 pm

Your post makes me feel very hopeful Dick. I am on Zelboraf as well and just got my latest PET yesterday and still NED. I will be one year on these drugs in June. If I'm still clear after a year, I will feel much better about my chances. Also, hearing about side effects diminishing is very exciting. Currently, I'm dealing with horrendous itching and lower extremity swelling, but the rest of the side effects (except the sun, of course) have seemed to be taking a break if not gone for good (fingers crossed). Thanks for the post.
Jim D

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Thu Mar 14, 2019 9:19 am

I wonder how some of you are still doing since we initially posted this? We are here to support you so please keep us up to date. One thing I notice overwhelmingly is how you all know what is important in life and disregard those petty things many people complain about in life. That is the one gift this disease gives you, a new perspective!
Catherine M. Poole, President/Founder
Melanoma International Foundation

Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Fri Mar 29, 2019 8:55 am

Dick,
If you don't mind me asking, what dose of vemurafenib are you on?
Thanks,
Jim D

DickK
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Re: Call out for UPDATES! How are you doing?

Post by DickK » Fri Mar 29, 2019 6:46 pm

Jim,
Started at 960mg March 2010. That was reduced to 720mg in November 2012.

Dick

Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Sun Mar 31, 2019 6:52 pm

Thanks. I'm currently on 960. Started with 6 tabs a day and down to 4. Still having significant side effects. Maybe 720 would help. Something to discuss with my oncologist.
Thanks,
Jim D

Catherine Poole
Posts: 11265
Joined: Wed Jan 02, 2008 12:09 am

Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Tue Apr 02, 2019 10:04 am

I think we talked before that it is perfectly fine to take a "vacation" from meds if the side effects are significant. Hope things are going well.
Catherine M. Poole, President/Founder
Melanoma International Foundation

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