Dab Tram combo

I was on these tablets 3 years ago for 7 months and now am on Nivolumab.I kept a diary about how I felt when taking those tablets and have dug it out to try to answer your question. Everyone of course has a different experience and can only describe how I felt. I had a big tumour burden at the time and one tumour was over 11 cm ,I also had melanoma in the lungs and near the spine.

My diary shows I initially felt very tired ,but again it was partly due to my weakness at the time. I at times felt sick but had no diarrhoea.I would at times shake uncontrollably and have fevers especially at night. At the time I felt on my own but now know these side effects are very common. I think it helps to know that this can be the norm. 

I however tried to get on with my life and went out with my husband and friends. I remember a time with friends I was so cold they gave me all their gloves and scarves. 

I was only on the medication for 7 months then had immunotherapy,ipi and Nivolumab and now Nivolumab .It has been a 3 year journey and I feel very well now. I have had the latest scan results and I have no melanoma in my lungs and other tumours are shrinking or stable. You being BRAF positive means you hopefully if need to be able to have both treatments. In this present climate tablets are probably the safest drugs as it doesn’t mean having an infusion in hospital. I wish you well. I had a groin dissection 10 years ago and know how a pain the drains can be. I do most days try to remain positive but like everyone have a blip now and again Take care. Hope this was helpful.

Hi Tinktoo 

I have been on Dab/Tram since December 19, yes there are a few side effects with these, mine has been constipation, temps, and chills, skin itch , ( but I also suffer with psoriasis, so itch could be down to that as its gotten worse (( but that's stress lol))  since being on treatment my tumours under and in arm have shrunk, and so far as they can see tumours in lungs have not changed, so Ill take that as good news,  I have had a break, as caught another chest infection end of December, which after 4 lots of different antibiotics finally racked off, lol  hope you get good results with treatment, if you start and are worried at any time ring your team, they are there to help,  I don't know if my post will help you at all but I wish you well on this journey your on ,  Max 

Hi Tink,

I've been on them 2 years and 9 months. Tumours in lungs have shrunk a bit, liver and left armpit tumours have been static.

Side effects have been pretty bad for me. Exhaustion, bone and joint pain, diarrhoea , hot sweats/high temp, oesophagitis,  nausea and vomitting, numb feet, scaly hard skin on feet, weird toenails!. I have a drawerful of drugs to manage them all but they're pretty life limiting. The bone/joint pain has gradually got worse and I'm now on 260mg of Oxycodone plus 80mg top ups when it gets bad. I lie down a lot!!

It's still worth living! I've had a fair bit of therapy and now take sertraline for depression which I'd thoroughly recommend.

I was expected to die in 2017 so I consider myself pretty lucky!

I see [or talk on the phone to in lockdown] my oncologist as Chelwest every four weeks and get scanned every 12 weeks always prepared to hear that my tumours have started growing again. I've been told that the meds will work until they don't. The stats for Dab/Tram combo aren't great, so at nearly three years I consider myself at the pointy end of the curve and feel grateful for the extra time. I certainly didn't expect to survive this long.

Good luck! I hope you have an easy ride.

love M x

Hi Mark_, 2years 9 months that’s amazing! and you still have immunotherapy in your back pocket I would imagine. 

Hi Tinktoo 

Im just at the three month stage of dab and tram. Like you read lots of side effects and people on here were fab at sharing story . 

First month I got through relatively easily , some tiredness , odd bouts of high temp but always passed . Nothing that interrupted my day to day life . Adjusting to food times was bit of pain but you adapt and actually I find My diet is better as I’m regimented . 

Towards end of second month , I suffered from fatigue , headaches , both high and low temp which lead to lots of shaking . This was around COVID ramping up so ended up with trip to a & e but was fine. Had a 6 day break as I ended up with Uveitis too. Started taking again and main conversation with my team was to watch the signs . So a couple of weeks ago , I felt similar to the time I mentioned and just took at 24 hour break . 

That’s the key learning for me on managing the signs , as I was scared not to take meds . and also feeling confident to use the people available to talk through . 

it definitely wasn’t as bad as I thought , although everyone is different but hopefully my story helps . Good luck ! 

Hi - I have been on this medication since December 19.   The first couple of months were a bit tough, I went about 10 days feeling fine, just watching for symptoms and then after about day 10, felt exhausted, feverish and generally rubbish, all symptoms I would associate with having the flu. I spoke to my nurse and she said to have a break for a couple of days and then start again.  I followed the advice and again after 10 days started feeling flu like again, this time I knew just to take a break and start again after a couple of days.  Since then everything has been ok and I haven’t had to have a break since mid January.  

The harder bit is finding a routine that works for you around meal times and fits into your life.  Once you find your routine, it all falls into place.

I know everyone is different - but for me the side effects haven’t been too bad. 

Hope it is the same for you. 

Thank you so much for taking the time to respond to me - it’s so helpful hearing other peoples experiences with these things. Did you change therapies because it stoppedworking or that the side effects were too awful? 

it’s so good to read that you are seeming to keep the melanoma at bay - I wish you well with continuing with that.

ive been taking them for 3 weeks now and apart from some significant temperatures that I take paracetamol for, I seem ok at the moment. It’s great to no longer have the drain in and I can now focus on getting to move about

Thank you for replying Max.

its such a dreadful thing as melanoma always seems to lurk in the shadows...

I really hope that your treatment works completely.

ive been taking them for 3 weeks now. I’ve been really tired at times and had a couple of temperatures but I take paracetamol and that seems to lower it again. I’ve got a blood test Monday and a telephone call with the oncologist on Thursday so I will see how my body is coping with them.

hope you are doing ok

Thanks for responding to my post Mark.

wow - you’ve certainly had a lot go on. It is difficult to remain positive at times but there is such amazing progress with the treatment available for melanoma, we can all hope that there will be a cure identified at some point.

im getting some high temperatures but that seems to be all for the time being.

i do hope that you continue to make progress and enjoy life as much as you can

Thanks so much for responding. 

it’s good to hear that you’ve managed to find a way of coping with the side effects of the therapy. I’m still learning about those. I’ve had some high temperatures that seem to pass with paracetamol but I’m going to discuss that when I have my telephone call next week. 

are you taking them for a year? Did you have a lymph node biopsy? Do you get regular scans?