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

Posted: Wed Mar 06, 2019 1:24 pm
by Respman
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

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

Posted: Thu Mar 14, 2019 9:19 am
by Catherine Poole
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!

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

Posted: Fri Mar 29, 2019 8:55 am
by Respman
Dick,
If you don't mind me asking, what dose of vemurafenib are you on?
Thanks,
Jim D

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

Posted: Fri Mar 29, 2019 6:46 pm
by DickK
Jim,
Started at 960mg March 2010. That was reduced to 720mg in November 2012.

Dick

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

Posted: Sun Mar 31, 2019 6:52 pm
by Respman
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

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

Posted: Tue Apr 02, 2019 10:04 am
by Catherine Poole
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.