Dabrafenib and trametinib experience so far

Hi  I have been on Dab/Tram for 22 months now and happy to report that I have had what the medical world term as a complete response. At some stage I have had side effects some severe and some not so much. A 48hr break in treatment seemed to do the trick on most occasions and the ones that I still get I have learned to adapt my life and live with them, no pain no gain. I will be on the treatment until a reoccurrence is detected and then clinical trials. It sounds like you have had quite a rough time and I guess the treatment doesn’t suit everyone. I’m sure within a very short timescale once you finish your treatment you will feel “normal” again but it is great to hear that your tests have come back clear. Wishing you all the very best.

Hi Maco

I have literally just finished my 12 month course of DAB/Tram, I have had to have a few breaks along the way but I have got over the line and all the CT scans have been clear so fingers crossed that continues.  I have had the sore feet in the morning, had the fatigue, nausea, rigours but all relatively mild - I always felt my body was reminding me that I wasn’t going to get away with no side effects.  The hardest part for me has been exercise, I was a reasonable runner, and since starting I have struggled to keep it up. 

I can say you are not alone in feeling that the side effects are just not worth it, but when the rational part of your brain kicks in, you know that it could be worse and if it is going to make a difference then it is worth it.

Stick with it - not saying it will get better/easier but it is making a difference. Good luck.

Thanks ya I’ve been having problems working out or keeping a routine as well and I keep having to take breaks and re-dose but this past week I’ve taken off because yet again the fever and chills became to much while taking the pills. Now I’m not sure whether it’s worth trying again and again getting sick for about a week each time or try another approach. But glad you made it through!!! That’s awesome !

Hi Maco,

Thanks so much for sharing. I replied to you on a different thread about exercise but now I see we have had a lot of similar experiences! I only lasted 3 days with dab/tram before I got side effects that were bad enough to warrant a 48 hour break. I've also been re-dosed 3 times. I've had 3 reductions. Had to have 2 weeks off because of liver being affected. Back on, I'm on 75mg and 1.5g of the 'fridge' pills. I forget which is which! However, my consultant confirms I'm totally getting a completely sufficient dose. I'm just starting Month 6 now. I'm struggling with fatigue, but  - fingers crossed - no fever. It sounds like we both had a rocky road (the bad kind) in the first 5 months so it's normal we feel rocky about the future months. I can get massively cross with my body for being tired but I'm working on accepting things as they are. If I need to rest, I need to rest. 

Thanks for sharing. It really helped me.

Hi, my husband has been taking these drugs for 4 months now, he has suffered with coldness, tiredness, nausea & the dreadful shaking chills, but luckily the chills now seemed to have stopped, as soon as he starts to feel his hands go cold he takes paracetamol which seems to help, he still has odd days in a row where he feels so tired & he just rests all day, & so far has been able to carry on working part-time in a physical job, Thank god we have savings as I don t think he could work full time due to the tiredness.