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May 27, 2014 at 8:21 am #21995tcellParticipant
I couldn’t post this earlier as I had to celebrate with friends and family but wanted to give all of you some good news and hope!
For those of you who don’t know me (I have not published my story in my profile) I am a stage IV newcomer, dx in early Feb of this year, amost died in hospital as my mel was dicovered pretty late but with god’s help and some luck survived and was put on the GSK combo right away as I am BRAF+. Tumor burden would not allow waiting for Ipi to kick in. I am 35 years old and father of a 2 year old daughter.
I am being treated at Vienna university hosptial (Austria) by a group of people specialized in mel.
Had 2 large mets on liver, one on left adrenal gland,, lots of small mets on pleura and and peritoneal, one on the left lung, 2 bone mets (TH-10, hip bone).
After 3 months of combo with full dosage, no side effects I got the results of the first CT scans last Friday:
– peritoneal and lungs are clear
– all other mets on vital organs show considerable shrinkage (no idea why there is no percentage in the report)
– bone mets are stable
Going ahead with BRAF / MEK. hoping and praying that they will keep doing such a great job for a while. Anti-PD1 might become available in Europe outside of trials in fall of this year but I hope to be able to stay on BRAF / MEk for longer!
Aside from the meds I have changed my diet completely to mainly vegetables and fish, meat only exceptionally. I am taking vitamin d and k as supplements.
I often read in posts in this forum “My husband is on BRAF / MEK now which should keep him going for 10 months”!”
I cannot say how long it is going to be fine for me but I am really actively trying to avoid to let the statistic median value enter my mind that strongly! My oncologist told me of people who have been on Dab only for more than 2 years and still going! I am aiming for the best not for the average!
I know that immunotherapy can be much more long-lived than the inhibitors but do not underestimate what they can do for you. For me they have saved my life!
All the best,
ChrisMay 27, 2014 at 1:19 pm #64506Catherine PooleKeymaster
This is great news and I hope you are feeling well too! We just don’t know enough about these drugs, but have many folks who are long term out on them. I hope this all continues for you and thanks for keeping in touch.May 27, 2014 at 4:37 pm #64507MathewRParticipant
Chris, great news! I’m also on the GSK combo (~10 mos.). You and I had similar starting points and I agree that these are miracle drugs. Regarding your CT scan report, I don’t think the radiologists state the percentage reduction unless you are on a trial (in which case, percentages become important for measuring “defined” partial responses, etc.). I just estimate my own percentages (which, at least for the first few scans, were quite large).May 27, 2014 at 5:18 pm #64508tcellParticipant Hi,
thanks for the responses.
@Catherine: Yes, I feel great. This is actually what I was so amazed about. When I started taking those drugs it took me no more than a few weeks from hardly being able to walk from my hospital bed to the other end of the ward to riding my bike uphill. I will keep you posted on how it goes in the future.
@MatthewR: So how is it going for you at the moment? Is the Combo still doing a good job? Have you been looking into other options?May 27, 2014 at 8:25 pm #64509MathewRParticipant
Chris, I’m still on the combo, presently stable with continuing minor reduction. I also worked in ipi late last year/early this year. Yes, I’m always looking at “what’s next?” While I hope that the combo will continue to work for me, I don’t assume that I’ll be to the right of the median.
Separately, to answer a question that you had asked on MPIP, I don’t believe that folks are seeing the same liver toxicity issues with the ipi/combo that they were seeing with ipi/Zel. I had spoken with a trial investigator about this in November 2013. The trial is now much further along than it was in November, so you might pose the question in a separate thread to those on the trial (I did not take part in a trial).
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