Dabrafenib and Trametinib

Hi Helensug

I know exactly what you are going through, they reduced my dosage a couple of months ago because I was getting bad rigors and then fever. After having a break for about 4 days this wears off and then I start the medication again. But they then come back after about 20 days on the course and I have to have a break and start all over again. This has happened 4 times now.

I also have developed bad acne in the last week on my face which is getting me down. 

I have a meeting with my oncologist on Wednesday so I'm hoping he can prescribe something for it. 

My scar also healed up on my back really well but this seems ages away now (February). 

People keep telling me that my body will get used to the medication and the side affects will wear off - I really hope so. 

I really sympathise with you as I know what your going through, chin up and stay strong duck

Xx

Hi WM28

Thank you sooo much for your response! I was not in a good place until yesterday as I seemed to still be having shivers and aching even though they had reduced my level of d and t slightly. Same efficacy they say.  I don’t understand why they start us so high and make us suffer!! 
Yesterday I felt so low with my big red blotches all over my legs and arms that look as if the Mosies have had a field day! Also my swollen ankles and wrists plus a finger now and dreadful back ache. So u rang the nurses and they contacted my oncologist- so now I am having to go in on Thursday for some blood tests and stop tablets in between. They said they are going to start me on steroids (to which I said:’Will I balloon?’ !!! She said no it would just be for a short period to help my body cope! I note someone else said they had steroids to help. So I am off them again until Thursday!!! Relieved as more and more incapacitating. I stopped working when I had my op which was literally at lockdown but goodness knows how I could have got to work now!!! I sympathise with anyone who is having to do that. 

I understand you are on steroids might do you think they are helping you ? I do sympathise with the acne as I feel that re my arms and legs!! I hope there is something for it to get rid of quickly. Good luck tomorrow with your oncologist and let me know how you get on. I feel we are both going through a similar journey. 

Thinking of you tomorrow. 
Helen xx

Hi Helen

Thanks for your reply, I'm sorry to hear that you are suffering so terrible side affects. I know exactly how you feel with the shivers and aches etc it's awful. They reduced my tabs from 150mg down to 100mg but it didn't make much difference really. They have raised my steroids to 10mg now to see if this will help but I probably won't know for a couple of weeks. 

The spots are really annoying, look like a teenager - shame I don't feel like one lol. 

I have been off sick from work since I had my operation back in Feb. 1st I needed 8 weeks to recover from my op on my back, then my oncologist told me I'd need another 8 weeks with covid-19 and then I had a letter to self isolate for another 12 weeks. To be honest I'm ready to go back to work but because of covid there's now no work and it looks like I'm going on health care insurance from August which is only half my salary which is pants. 

We really are on a similar journey! 

I really hope you start feeling better soon and can get these horrible side affects under control. 

I'll let you know what my oncologist tells me tomorrow 

Wayne xx

Hello everyone - I’ve only joined this group recently, despite having been first diagnosed with MM over thirty years ago. Hope you don’t mind me landing in the middle of the conversation, but  I am so relieved to read that other people are getting similar side effects from dabrafenib/trametinib. Of course, until recently these weren’t available - so each time I’ve had a (local) recurrence, at roughly 8-10 year intervals, it’s just been a case of surgery and vigilance and keeping as well as possible. I had a lymph node removed at Easter after a scan at the end of last year; after some inevitable COVID- related postponements, I finally started on dab/tram just over 3 weeks ago. First week was non-eventful but since then I feel as if I’m playing side-effects bingo: I feel incredibly tired, a bit breathless, have a variety of aches and pains, and a rash on my arms and legs which started off like a child’s drawing of chickenpox but which has now developed into large, hot, very tender red patches and swollen knees and ankles. No high temperatures yet (nothing out of the ordinary for a woman in her fifties anyway!) but frequently feeling cold and shivery, especially in the evenings. I feel thoroughly under the weather and am seriously wondering if I’ve made the right choice; and I do know how awful that sounds and how grateful I should be that this is available on the NHS. My oncologist told me that statistically, the treatment should increase my likelihood of 10-year survival by 10% (from 60%) but the thought of a year feeling like this almost cancels out that possible gain...I have an appointment on Thursday, so perhaps the dose can be reduced, or something. 

Anyway - thanks very much for listening, I am trying very hard not to constantly bore on about this to my wonderful and very patient partner, who has been getting far too frequent updates from me. Fingers crossed we’ll all be feeling better soon.

Hi Petrichor

Thank you for joining the conversation - firstly to know that you have had Melanoma on and off for a number of years and still battling on. I had my first 8 years ago and there was only surgery available then too. In March I had The lymph nodes removEd by surgery And was indeed a doddle compared to the medication now!! You have probably read my story above and I understand exactly what you mean re finding others suffering similarly - somehow it is a great comfort to know others are similarly affected. 
I am on a mini break until Thursday and gradually feeling better. 
I just hope the steroids they have promised will help when I go back on the tablets!
There appear to be a few of us going through this at similar stages on d and t. So let’s stick together and support each other as I really do believe sharing how you feel and knowing you are not alone seems to help! And might save our relationships!!
My oncologist said I am cancer free at the moment and this adjuvant treatment gives me an extra 30% chance of preventing the cancer returning so am determined to get to a level that will work for me!

Do keep in touch and good luck Thursday 

Hello Helen and everyone

I haven’t posted for weeks but wanted to tell you my experience with adjuvant dab tram. I took them for 4 1/2 days and then had a break of 5 days as I too found my arms and legs covered in red very tender large spots. I had high temperature over 3 days and the shakes. When I restarted tablets I managed 3 1/2 days before all the same side effects came back, only worse. I felt so ill. 5 days later I was ok again but my oncologist felt it better I stopped altogether, rather than take steroids and have further side effects. That was about 3 weeks ago. I’m now going to have 3-monthly scans and be monitored closely instead.  I was told I can’t have immunotherapy now as NHS won’t fund both for adjuvant treatment - which is a bit harsh as I only really took 8 days worth of tablets. 
To be honest, it was a relief as I too felt the same about not wanting to go through all this for a whole year and feel so ill. At the same time, I feel disappointed that I should have reacted so badly, and scared that I may have worsened my chances of mm coming back.  
I felt relieved to read about others having similar problems as many of the posts I read were by people saying they had little to no side effects and I was thinking how come I have them so bad and so quickly. I hope you all manage to cope better and you settle down and manage to stay on them. Trust your oncologist and try to stay positive.

On the plus side, I feel fit and healthy now and plan to enjoy the summer as much as possible and try to put all this behind me for as long as I can.  Sending you all lots of love and laughter and good wishes that everything works out well for you.

Hi all,

Have been at the hospital this morning and have been instructed to stop taking the dab/tram for a week to try to get the side effects to calm down, the we will discuss how to progress. As the week’s gone on I’ve been feeling progressively worse and it turns out that my temperature was actually much higher than I realised, which explains a few things. I suppose when you’re hardly ever unwell, your instinct is to soldier on, but it was a bit of a wake up call to see how alarmed the nurses were and we stopped on the way home, feeling sheepish, to buy a new, accurate thermometer.

I will see what the oncologist suggests next week and will keep an open mind, but I am certain that I don’t want to spend a year feeling this ill in order to possibly improve my 10-year survival by 10% - I think one would cancel the other out. Of course if my immediate prognosis were worse, I’d try absolutely anything, but this seems counterintuitive when I generally (at least until the dab/tram) felt so well.  Such a huge wave of relief swept over me when I was told to stop the tablets - there’s a lot to be said for paying attention to your instincts.

I won’t ramble on any more as I’m probably borderline delirious! Off under a blanket with a paracetamol until things start to get back to normal. Sending love and best wishes to you all: in general I’m not much of a “joiner”, but it is enormously comforting to be able to talk to others in a similar situation.

Hi Petrichor

I'm sorry to hear that you have had such bad side affects, I can sympathise as this has happened to me 4 times now and each time I have had to stop my treatment.

The sweats and shivers should dissappear within a couple of days but still make sure you have a break of at least 4 or 5 days for your body to reset again before starting your tabs again.

This last time they advised me to just stop the Dab and carry on taking the Tram and this worked as my side affects still stopped. So maybe this could be an option for you if it happens again.

I hope your feeling better soon and keep in touch. 

Hi Petrichor, WM28 and all

I do so sympathise with everyone and if I was in your situation Petrichor I would probably do the same but I am Stage 3b so anything which helps prevent the return is hopeful- however not at any cost !! Like you I felt so fit and healthy just a few weeks ago too!!

I went for blood tests today with every joint swollen and hurting and very becoming red blotches on backs of arms and on legs!! Looked as if the Scottish mozies had a field day!! They were very concerned and put both symptoms down to D and T. I was there 5 hours in total and everyone lovely!! My diagnosis is to continue my ‘holiday’ from D And T and given strong steroids and antihistamine to try to counteract the bad reactions. I am hopeful as already feeling better after one dose!! Or it could just be the drugs are getting less strong in my body? 
 I know some of you have been on steroids. I am on 30mg Prednisolone Daily but I think they are hoping to bring down fairly quickly if effective. Anyone have experience of these and any side effects?? Or is it here I go again!!!!

Feeling positive 

Love to all fellow sufferers! 

Hi Helen

I hope you start feeling better soon as that doesn't sound nice at all. 

I'm on 10mg of prednisone which is prescribed for my fevers and rigors, time will tell if it works. As yet no side affects from them but as you know a fair few from D & T.

I had another phone consultation with my oncologist yesterday and he has said to move my steroids from breakfast to lunch to see if this will combat my fevers better, as these seem to happen more often at night. He is also sending some tabs out for my spots on my face so I'm waiting paitiantly for those to arrive.

I know it's hard but try to stay positive as I'm sure it will start to get better soon