Dabrafenib and Trametinib side effects

Hi Sunflower355 and a very warm welcome to the melanoma group

I'm sorry to read that you've been diagnosed with Stage 3 melanoma but that's great news that you're able to have the combination of Dadrafenib and Trametinib .

I don't have experience with these drugs myself but I'm tagging and Tarilan and  into my reply as they are on this combination and can hopefully answer your questions.

A big thank you as well for completing your profile! It makes it so much easier for people to answer your questions if they can read about you and it saves you having to repeat yourself every time you start a message.

Best wishes for your ongoing treatment

x

Hi there,

Yes, I’ve been on Dab Tram for 11 months now after a Stage 4 diagnosis last summer.

The flu-like symptoms are most common with Dab Tram. My oncologist told me I could have 2 x 48 hour breaks per month and to stop taking them as soon as I had a temperature. Early on I only lasted 12 - 14 days, but this built up and I get well over 30 days now before my system says “enough” and I take a break. 

I can read the signs now, as when I get near stopping time I get lethargic and get mouth ulcers, a clue that my body isn’t quite keeping up with processing the drugs. Soon as I get a raised temperature I take some paracetamol and stop for 2 days. 

The big message was not to keep taking them once you get a temperature. I did the first time and found myself in A&E with a 40+ temperature: lesson learned!

That seems to work for me so far. I had 2 small nodules in my lung and after initially shrinking them, my last 2 scans have been clear, judged as a complete response. 

Of course that’s no guarantee it’ll stay that way but we’ve learnt to take the small victories and we have immunotherapy to come if and when we need it.

Good luck.

Hi there,

Sharing my mother's experience with the drugs - she is Stage 3C inoperable and has been on them since the end of March this year as part of a trial. Her side effects are a bit different - muscle pains, rash and tiredness, but they went away after the first two months. Hope this does not mean that the drugs stopped working, but the body has adjusted to them! Good news is that her pelvic nodes shrunk according to the first scan couple of days ago! Good luck!!

latchbrook

Thank you so much for taking the time to reply to my question. Tarilan and Mark_ were a great help and put my mind at ease. 

This website and forum is such a great resource for people in our position. For the first few months of diagnosis my wife and I flailed around on the internet looking for information, some of which was wrong, some of which was out of date, and it was very difficult to discern which was which.

Thank you again

Tarilan

Your input was most helpful. Thank you. It is a great comfort to my wife and I that this isn't likely to get worse but likely to get better. I know though that your experience isn't necessarily going to be the same as mine.

I have no doubt that I tried to soldier on for too long, taking paracetamol to cure the symptoms rather than taking the 48hour break. Today is the first day I have felt even fit to reply to your messages, and I think I will take another days break to give my body a chance to get back to normal before starting the treatment again - just waiting on approval from the Oncologist.

I know the signs now and will be sure to take the break sooner in future.

Good luck with your continued treatment and I hope you continue to improve. This certainly looks like a game changer in terms of melanoma treatment

Thanks again

Tracyyy

Thanks for taking the time to reply.

Those side effects aren't very different to what I have had to be honest. Im only one month in and hopefully my body will build up the tolerance as well.

Best of luck to your mum

My husband has stage 4 matastic melanoma ,he has been on tram and dam for 11months. Side effects exactly the same .you learn to deal with them . He is stable at the moment.until I came on the site I was scared .but reading that all this is happening to other people helps so much

Thank you 

Hi Sunflower,

Thanks so much for posting on this forum and we hope your treatment is going to plan?

My wife was diagnosed with stage lllB also having had positive SLNB in January this year.

We are 5 weeks into the 12 month treatment plan, already had a trip to hospital due to severe rigours and temperatures reaching 40.

last week the dose of Dab was reduced to 3/4, yet we have seen no calming down of the side effects, if anything the rigours have increased in frequency and length of episode too.

Typical flue like symptoms, raging temperature, constant nausea and these uncontrollable shaking episodes.

We have been advised just today, that a 48hr break would be a good idea, (which my wife is so relieved about ), but wondered on how things went for you as you returned back on the meds after a break?

Realising we all respond differently I know, but this forum seems to be so close to our current situation, I am interested to see how things hopefully settle as the treatment progresses.

TIA, Regards 

Manse

Hi Manse

I suppose I should welcome you to the Deb-Tram rollercoaster.

I am nine months into the treatment and I'm still not sure I can predict what will happen over the next couple of days. I have good periods and bad periods. Over November and December I had probably the worst 8 weeks of reactions that I had throughout the nine months to date. The tremors were so bad I pulled muscles in my shoulders and legs.

I have found that I can now feel the effects starting to kick in. The fever symptoms start with rigours and pains and constantly fluctuating temperatures. 

I try to ride out the side effects at first and see if they are going to be transient. Sometimes they pass in a day or so. Other times they get progressively worse. It's a difficult judgement to try to make. This morning I woke feeling sore, nausious and cold and I thought I was in trouble, however paracetamol brought it under control and this evening I'm fine again. Just the usual tiredness which wipes me out from about 3pm every day.

My Oncologist advises stopping the medication if I become unwell and allowing my body to recover. Usually about 48 hours does it, but even 24 hours makes a difference.

As soon as I am feeling strong enough I restart the medication. 

That system works for me. I guess the only problem with it is my reluctance to take that break. I would have sold a kidney 12 months ago to get onto this program and now that I am on it I am very reluctant to "wimp out" of it. I try to soldier on, sometimes too long (as was the case in November). 

I now take the breaks when I feel poorly. I don't feel guilty for taking the break and now I only take a break approximately once every 6 weeks. 

I also take a break for a day or so if I have something coming up that I need to be fully well for. In February I took my son skiing and took 5 days off the medication to ensure I was fit and not my usual exhausted self. Again, I can then go back onto the program without a problem.

Has your wife ever taken a break? Does she use paracetamol to control the reactions? I find they work well up to a point. Have you not been advised before now to take breaks if she is feeling unwell? It was the advice I was given from the start.

I believe there is a study about to begin which looks at the possibility of changing the treatment so that periodic pauses are built in to the plan. In theory you would take the drugs for a while and then take a break for a few days before restarting. I'm led to believe it has no negative effect on the treatment and may actually improve the outcomes, however that is just speculation at this stage. Stick with your medics advice.

My dosage was also reduced early on in the treatment program as my liver was failing. Reducing the dose cured that very quickly. 

I would advise your wife to try to stay with the program but DO take the breaks. Its surprising how quickly she will bounce back. The results people are getting on these drugs are incredible.

I don't know how much more help I can be, but please don't hesitate to reach out to me if I can be of any help. My cancer diagnosis was 12 months ago tomorrow and I know you must be going through all sorts of turmoil at the minute. Please know that the panic you are feeling at the minute WILL subside. A new norm develops involving cancer; treatment; reactions; scans; all those things, but we have found a new start in all of this - all of a sudden you learn to stop sweating the stupid stuff - and that's a great lesson.

I hope I haven't rambled too much. Good luck to you both .

Hi Sunflower,

Thank you so much for all of the info / experiences you share above, I didn't read it as a ramble at all,

We were advised just yesterday to take a break over the weekend, so here is hoping my wife will gain some relief from the side effects over the next couple of days.

We seem to be popping paracetamol like smarties to try and control the temperature, but last week had ended up in hospital as I couldn't get it to reduce. As you have experienced them you will know for sure how traumatic the rigours are, I have found it very hard to see my wife in this situation, with me feeling like I am unable to help her, which is why I decided to take a look for a page like this for others experience / advice.

I understand where you are coming from with regard to the routine become the norm, also the change in outlook on everything going on around us.

Here is hoping we may be able to take some control over the side effects in time and have a return to a more comfortable routine.

Wishing you well in your continued treatment and thanks again for your reply, 

Cheers M