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,