Dabrafenib and Trametinib side effects

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Hi Guys. I am new to the forum and new to the "club" too, having been diagnosed with malignant melanoma in February (5 days after my 50th birthday - how about that for a kick in the teeth).

I am Stage IIIB having had SLNB which was positive, but with low tumour burden.

I have been very lucky to have been put on Debrafenib and Trametinib for 12 months through private medical insurance.

I am 4 weeks in and have just had to come off them for a break as I have developed dreadful flu like symptoms over the past few days. The oncologist (who is my new hero by the way) advises I take a 48 hour break and get healthy again before going back onto them.

I wondered if anyone else has had any of these type of side effects? If I stop and go back on them, what is the likelihood of the symptoms coming back, and do they come back quicker or slower each time? I wouldn't mind being back on them for a few weeks and have to take a break, but being on for a couple of days and then have a weekend like I just have had would be pretty rough.

The symptoms I have had were tiredness, lethargy, aches, pains, chills, sweats - all the usual flu symptoms.

Many thanks

  • FormerMember
    FormerMember in reply to Tarilan

    Hi Tarilan,

    Many thanks for your response . . . . Much appreciated.

    Can you recall what levels your ALT went up to?

    Many thanks

  • No, I don’t remember what levels but it was marginal rather than a spike. We’d had a busy Christmas, drinking more than normal and I wondered if the alcohol had affected it. My Onc suggested limiting drinking to 1 or 2 units at a time but I chose to stop completely and by the next blood test it was back into acceptable limits.

    It’s stayed within limits ever since. I think your body just adjusts over time. My white blood cells are always a bit low but again “enough there to let you safe” in my Onc’s opinion.

  • FormerMember
    FormerMember

    Hi!

    I am so thankful for this group!

    I have had my first oncology appointment today and they have advised me with these tablets...I have 9 lymph nodes removed and they advised of 1 being cancerous. The side effects are my worry, I am 30, and have a very active 4 year old who is dude to start school and really don’t want it to effect her life!

    My heart is telling me to start the medication my mind is telling me not! Helppppp!

    Thanks,

    Danielle 

  • Danielle

    This is an absolute no brainer. These tablets are just about the best thing that have happened to melanoma treatment in years. You will see on this group, and others, that many people with known tumours have had them shrink and disappear. There is no guarantee that it will be your cure, but in my opinion these are fantastic drugs.

    There are side effects without doubt. Mine were quite bad. But I am on the other side of my 12 month treatment and life is back to normal (or as normal as it will ever get post cancer diagnosis).

    Check with your oncologist, but my advice was to take a break if things got too difficult, and having had about 36 hours away from the drugs, I was right back to normal again and ready to get back into the fight.

    Everyones journey is going to be different and maybe your body won't give you side effects.

    My brother has recently been diagnosed with a different form of cancer and I can assure you, if he had access to these drugs and they offered the same results of success, he wouldn't think twice.

    Keep in touch with the group and let us know how you get on. 

    "Get over the shock, and you can get over the rest"

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Danielle                                                                   I started this treatment in April and the first two months I virtually had no side effects ! The last month it’s so I have just felt tired and a little unwell but nothing I can’t handle. I work full time and also look after my two grandkids who are 7 and 4 a couple of days a week and as someone else mentioned the treatment is a no brainier ! What’s 12 months if it can potentially cure you and keep you well for your little girl and family x

  • FormerMember
    FormerMember in reply to FormerMember

    Hi , I had a look to try and read your profile, to just double check if you you considering dabtram as a adjuvant treatment as that’s what I was thinking you would be after your node results. I had Dabrafenib on its own back in 2015 as the combo wasn’t available then. It was because I couldn’t have surgery as too many nodes were effected in my pelvic and abdominal area, so not adjuvant but instead of surgery. Dab immediately well within 2 days made me feel a lot better so I wasn’t surprised when I had positive scan results 2 months later everything had shrunk by 50%. With the drugs I had a booklet to complete (I don’t know if they still do that) I wrote down the times I took my tablets and any side effects and how I felt in that book. I had some stiffness in my knuckles but I was 56, I lost underarm hair (I’ll consider that a plus) and pubic hair which grew back after I stopped treatment. 

    I have put a link to adjuvant treatment in a different post but it may be worth me putting it here to.

    Melanoma Patient Conference 2018 Adjuvant treatment https://youtu.be/Ybln2-Czn6Q

    also possibly of interest the 2019 conference Neo adjuvant v adjuvant treatment https://youtu.be/iWADCmIAw2w

    I think it’s wonderful that there is adjuvant treatment now as there wasn’t until September 2018, so that now brings us in line with other cancers, except that I think our adjuvant treatment is kinder and more promising but everyone has to judge that by themselves. I am on Pembrolizumab at the moment but that’s another story that can be found in my profile. 

    Best wishes