BRAF Treatment

Hello , welcome to the online community I’m sorry to hear the combo has been hard on you for side effects. I have heard before of people having a break for a couple of days when this happens and then restarting, all directed by their onc teams. I’m interested to know if you are still on the treatment. If I have a further progression going back onto Dab with the added tram is an option for me, but currently no measurable disease and hoping to stay like that on Pembrolizumab. 

Hi KTatHome , yes I'm currently on a break following several breaks and recent 25% dose reduction. Don't think I can go through a year of this treatment. 

I was interested to know if anyone else was experiencing brutal side effects , don't think my CNS believes me lol 

PS 

keep fighting stay strong

For one month I went down to a 50% reduction, as I was having trouble with my shoulder, the reduction did not make any difference so I went back up to the full dose, and had physio. 

(Last quarter of the England New Zealand semi final World Cup Netball it’s as emotion for me as awaiting scan results !!) 

Hi , now that the Netball’s finished!! I was wondering if you’ve read this discussion 

https://community.macmillan.org.uk/cancer_types/melanoma/f/melanoma-forum/180466/adjuvant-dab-tram

Im hoping might pop in, and any others who are on, or have been on dab tram to see if they can help you with experience.

Best wishes

Hi there, in the end I had to come off the Dab Tram. I had the usual side effects including high temperatures, etc., which I could tolerate but my oncologist decided to stop me after 12 weeks due to high liver readings and potential permanent damage. I am hoping even just a 12 week full dose treatment of dab Tram might have been very beneficial but will probably never know. I have now gone on to Pembro as an alternative adjuvant form of treatment with no side effects so far . . . Touch wood! All the best.

Hi. I also started on the max dose of dab and tram , however I quickly realised the medication/Dose was too much for my body . I know there is side effects with all medication but this was something else. I've had several breaks in treatment and finally convinced my Oncologist to reduce the dose which she agreed to reduce by 25%. Great things are looking up .... 2 weeks later the side effects started  so another break in treatment. I am feeling like a bit of a guinea pig with these cancer drugs.

all the best to you , stay strong

Tricia

Thanks for this very helpful

take care 

Hi, I had a rough start on dab and tram, but for the last 6 months have been reasonably OK. Had one episode of fever but controlled it with paracetamol. Scans show reduction in all tumors,apart from 1 which is staying the same. But we are all different and therefore react different, and it is a bit of trial and error with dosages. 

Hope you find the right combination that works for you.

:) 

Hi there,

Happy to share my story. I’ve been on the Dab Tram combo for 2 years now.

I originally started on a full dose but had to stop within days due to fevers. I started again on a lower dose with the advice that I should stop at first sign of a raised temperature and have a 2 day break. I was advised that I could take 2 x 2 day breaks per month. So I assumed that my target was to last 12 days.

The learning has been that your body slowly adjusts to the medication, but you must take the breaks to allow your body to reset and go again. At first I could go 10 - 12 days before a break, then after a few months I could get to 20, and now I take a break about once a month as a matter of course well in advance of any fevers. Apart from some fatigue and mouth ulcers at around 30 - 35 days, life continues as normal. My white blood cells are always low in my blood test, but high enough to keep my immune system in reasonable shape.

I think the urge at first is to keep taking them, and to stop is somehow a failure. I’m really grateful to my oncologists for emphasising the necessity y of breaks at the beginning. Once I had that formula (max of 2 x 2 day breaks per month) I felt I knew the rules for managing my treatment. That sense of control, when everything else is so unpredictable, was of huge benefit.