New to the forum, start Dab/Tram in a week, any advice?

  • 22 replies
  • 77 subscribers
  • 756 views

Hi everyone, I had a mole removed in Feb 2023, turned out to be malignant, had section taken out July 2023 and SLNB found evidence of spread to lymph node. Went on monthly adjutant Nivo, all scans clear. Felt like i was in a reasonably good place. Noticed a lump on my neck 2 or 3 months ago, had CT scan then MRI scan of liver shows 2 masses. Oncoligist made the news sound grave. I am going to go on Dab/Tram. Is anyone able to report good progress on these please? Also, do they completely knock you out or will I be able to carry on working. I have an easy desk job which i would like to continue. I feel so stressed and anxious all the time now.

  • Thank you David.  That is good advice and I will be following that and looking after myself.  I suppose I thought I would experience some side effects straight away.

    I think your approach re work is sensible. 

    I wish you well on your journey too 

    regards 

  • My husband has been on dab/tram for over 3 years and leads a pretty normal life. He occasionally gets the shivers/temperature issues (tends to be if he is coming down with a cold or something) which passes after a few doses of paracetamol. I would say he gets very tired the day after the temperature issues. He says it feels like a hangover. Fuzzy head and tired. I hope this helps and the tablets work for you. 

  • Hi

    I've been on these medium dose for around 8 months. Due to spread to lung and liver. My last scan showed nothing, so they are working for me.

    Some days I'm crazy tired,others not so bad. 

    I had to give up my job but I cared for others and wasn't able to manage the physical side .

    Good luck and keep positive 

  • Hi Balfazar, thanks a lot for your reply.

    How much is the medium dose?

    I have been tried at times, but at the weekend i had a terrible fever, with very bad shivers and shakes. I decided myself to take a 3 day break 

  • Hi

    I take 4 15mg binimetinib a day. 2 x 2 twice a day and 3 enco once a day now. 

    I was on 4 of each but had to be dropped down as struggled with itchy skin,crazy tired etc.

  • Hi PK1,

    My husband recently finished his course of the same treatment after he was diagnosed with stage 4 melanoma. His results have been positive and he has few side effects. He was able to work as normal (in construction) and most of his friends and colleagues forgot there was anything wrong with him! I think a lot of it is mindset too. We also have 2 under 4 so we weren't sure what to put his tiredness down too. 

    Wishing you all the best with your treatment. 

    Jpoll x

  • Hi, thank you so much for your reply and i am so glad that the results have been positive.  

  • Did you get your bloods checked all this time for liver function? I have high enzyme count so taking a break before another check. I hope they don't decline treatment altogether because of this.

  • Hi,  I had horrendous shivers last time around, am now on a break because of high enzyme count from liver bloods. Was this checked for your husband? I am going in for another check tomorrow.

  • Hi Jean, do you have frequent blood tests on dab/tram? At the last count my alt levels were high so i am taking a dab/tram break before a retest tomorrow. I am in a quandry as surely drugs as powerful as these would affect anyone's liver? I worry they will stop treatment if toxicity becomes a problem, but then they are treating a stage 4 liver met in any case.