Braftovi and Mektovi, side effects and timings of tablets experience please.

Hi KTatHome

How are you doing after your recent surgery? I hope the wound sites have calmed down now and you're feeling more comfortable.

I can't help with experience on these drugs but hope they do their job with minimal side effects.

xx

Thank you latchbrook, surgery site looks rubbish at the moment but has calmed down. Tablets arrived by courier at 6:45 pm, nearly a week later than expected. 

I wish you well with the new tablets and hopefully few side effects if any.  I have only had the dram tab ones for 7 months .Hope you are feeling yourself soon and thanks again for all your support .

Thanks Lgrgdg90, I had those same dab tablets for 8 months. These are different but do the same job. I’m going to report any side effects in this thread in case anyone later goes on these tablets, and asks the same questions as me. 

Instead of 2 dab tablets a day it’s 6 encorafenib and then 3 +3 binimetinib, I haven’t properly learnt without looking at the boxes if that’s the right way round though. The 6 you take together are huge though but doable. At least I have no rules about when to eat or not. 

My blood sample and tumour are in London hopefully making a good lot of lymphocytes for when I need them. 

Today I feel more myself than since mid September but not quite there yet.

An update for anyone searching for these two drugs. 

At Wednesday's appointment the oncologist I met with says Dabrafenib and Tramatenib are often used for adjuvant therapy and encorafenib and binimetinib are often used for stage 4 when not all cancer can be removed. So I’m wondering if that’s why I haven’t had much of a response on here. My team had to get access to these drugs by approaching the pharmaceutical companies for compassionate access as the NHS rules for me wouldn’t. 

The booklet show lots of side effects similar to dab tram including insomnia and fatigue, contradictory of course I felt as I’d had fatigue with Pembro I’d go for the digger dose at night hoping I’d sleep through any fatigue os sleepiness. I don’t go out in the evenings so that made sense to me. After a week I have no side effects to report but it’s early days. I’m told side effects tend to be less with the double therapy drugs than the single, I hadn’t heard that before so let’s see. 

I was on tablets for nausea/sickness after surgery and I’ve reduced them from 3 to 1 a day and feel less sleepy. My scar is healing and so I now need to slowly build up my fitness levels again, otherwise as my appetite has now returned I will gain too much weight ! I need to be careful due to the healing of the scar in my groin, I can not do too long a stride. 

I’ve been told the blood and tumour samples met the trial criteria so they are being worked on to get my personalised colonal neoantigen Tcells but there’s no rush as if the tablets are working I will stay on them. I’ve had a base line scan so now although no results yet but the next scan will see how things are going. I feel much better now I’ve stopped being sick.

Thats all I can think to update on. If anyone else is trying to get fit after surgery and comes across this post please say hi and tell me what you’re doing to get fitter. 

@KT nice to read your update and so glad your feeling better now x x

Hi KT

I'm on that treatmemt. I take the 3 small in the morning and I time the 6 big ones half way through the day as they can sometimes make me feel a little sick. Then the 3 other small ones in the evening. 

I also take thyroid meds and steroids in the morn. To be honest I've changed it a few times to suit my day. And now I find that this way works. 

I've had a few side effects being sight in one eye isn't as great but the I think you get used to the tiredness over a couple of months and your body builds up to the norm almost. I'm probly about 75% 80%  of my normal strength and tiredness.  I've been on them for about 5 or 6 months now. 

Hi JT Legend, thank you for your reply so nice to hear from someone on the same targeted therapy tablets. I hope they continue to work for a very long time for you and that you keep in touch with us on how you are. 

Hey, I started these tabs in January . I have tried both combinations of day and night ( I’d had a break as was unwell so swapped to see if made a difference ) 

So far, I’ve responded ok. I’ve had dab & tram, pembro and nivolumab and really suffered with side effects. How are you finding it ?

I’m suffering from uveitis as a side effect but that been managed and hopefully will get better. It’s good to see someone else on this would be good to hear how you are finding it .

Hi Reid06, sorry for my late reply, I be been in hospital with a poor signal 

I’m currently on a pause after a mixed response from a scan and sickness. I’m building strength up again at the moment but no steroids yet. 

which way round suited you best ? Iris it too early to tell?

only access is phone at the moment big fingers not good on little keyboard.