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

Hi PK1, I'm sorry to hear that your melanoma has spread, it's something that nobody wants to hear.  I was diagnosed with metastatic melanoma a year ago and put onto the ipi/nivo combination that gave me such bad side effects that I had 4 stints in hospital and they had to stop treatment after just 2 treatments.  The melanoma was originally in my lungs butnhas now spread further including to my brain.  I have only been on dab and tram for about 2 months and my scan is due in the next couple of weeks so I can't tell you yet how good (or not) my progress has been.  However, I can tell you that, for me, the side effects haven't been too bad.  I get a high temp at some point most days which is controlled by Paracetamol and I get stiff/sore/swollen hands some days.  My appetite is good some days but bad on others and I donget tired sometimes. However,  I find that all these are reasonably easy to cope with.

I managed to keep working through all the above and was still working until 3 weeks ago, when I chose to leave in order to give my body time to cope.  I could however  still manage to work of I had really needed to.

I hope that this helps.   Good luck with the treatment and please get in touch if you have any other questions about dab and tram.

Jean

Hi Jean

That’s so kind of you to reply. I wish you all the very best wishes in your treatment journey. How are you coping mentally? I am anxious all the time now about my prospects. Are you able to exercise on the combination, go for walks etc?

Paul

Hi Paul

When I was first diagnosed I decided that I had 2 choices - to either let this thing destroy me or to try and carry on normally as much as I could.  I do have bad days, and I think that's ok as we all need an outlet for our grief, but I do try and carry on.  Work has been a really good focus as my mind has something other than cancer to think about.  Worrying about what may happen will not change anything so I try not to think too far ahead. Walking also helps to clear my mind.   I  can't do the 8 - 10 miles that I used to do but I have managed 5 miles a couple of times recently and that makes  me really happy. Also learning to pace myself has helped.   If I have a busy day one day then I'll take it easy the next.   A lot of this is still possibly the result of side effects from the immunotherapy, and I have read posts on here where people on dab and tram can carry on as normal.

I assume that you have a CNS (cancer nurse specialist).  Please use them to talk through any doubts or concerns you have about your treatment- my one is amazing!!

Jean

Hi Paul

I started on Dab/Tram in February of this year. I have recorded my journey on my profile. If you select my Nickname you can read through it. I have carried on working. I retired from full time work and I work 6 hours a day at Center Parcs. I do get fatigue, but I have learnt to pace myself.

I have been lucky so far regarding side effects. At present I am feeling well. I've also had a good response to the treatment.

I've just had my 3rd, 3 monthly CT scan and have an appointment late September with my Oncologist to get the results. Always find the waiting after CT scan a bit stressful. 

Hope you have a good response with the Dab/Tram and mild side effects.

David

Hi David, thank you very much for taking the time to reply, I wish you all the very best as it sounds like you have had a torrid time.

Regards,

Paul.

Hi PK1,

I was on Dab/Tram for a year during the lockdown. I was able to continue working for that year because it was 100% working from home and when I took 2-3 days off every now and then (fever), it didn't affect my work. I was able to go for walks, no problem.

There is a good BBC documentary on melanoma, Dab/Tram and immunotherapy called 'A year to save my life: George McGavin and melanoma'. McGavin, a scientists, had Stage 3 melanoma and recovered using Dab/Tram from a year.. (Everybody will respond differently to the the drugs though.) Here is the link:https://vimeo.com/338412027

For me, the side effects from Dab/Tram didn't settle into a pattern. They came and went. Very odd and unreliable. But, on the other hand, for the majority of the time, I no real side effects except fatigue.

I made a mistake at the begining on Dab/Tram: I tried to 'push through' when my temperature went up and I felt sick. Nope. I suffered needlessly. I thought (wrongly) cancer treatment was supposed to make you very sick. I eventually learned to respect the 37.8 degrees limit (I think that's the limit I was given by my oncologist). That is, if my temperature went to 37.8 degrees and did NOT respond paracetamol (it takes 15-20 minutes for paracetamol to start working) then I rang the Acute Oncology Service telephone number and okay-ed with them to stop taking the Dab/Tram for 48 hours. This allowed my body to reset. It caused no problems with the treatment. 

[BTW, I didn't make up this protocol. It was what I was told to do!]

After 48 hours, sometimes 72 hours, I was always okay to just keep on taking Dab/Tram. In the end, it didn't work for me because - I suspect - I had to stop Dab/Tram for 4 months while they sorted out a little bit of breast cancer.

Hopefully you have a nice new shiny thermometer and no, or few, side effects!

Best,

Dots

J55,

Glad to hear your news and that you're on the good, old Dab/Tram. Sorry to hear you have a high temperature and sore hands sometimes. I think you've made a great decision to give your body time to process things. If it helps, I think, in my experience with Dab/Tram, the side effects got less and less as time went on: the last 6 months were really fine.

Sending positive vibes and a big hug through the internet.

Dots x

Hi Dots new to dab-tram. Your advice has been so helpful just wanted to say thanks. Watched the programme you suggested thought it was brilliant. Feeling poorly today so with nurses agreement stopping dab/tram for 72 hours. If I had not read your blog I would have tried to push on through too. You have saved me alot of time suffering. Wishing you well on your journey xx

Hi David 

I have just started on Dab Tram four days ago and it was good to hear that you were able to carry on working which is what I was hoping to do as I can work from home partially too.  So far I have no side effects but I am sure that may not always be the case.  

do you have any other advice on how best to manage this journey?  

regards 

Hi Carol.

The important thing is not to push yourself through any side effects, as others have said. If you feel very tired ,rest and don't go to work. The company I work for knows my situation and are very understanding. The company doctor has written a report and the management know I may be absent.

I had no side effect until the end of my first 4 week cycle. I developed a high temperature which is a very common side effect. Any concerns you have please call the advice line. They are fantastic and will help you.

I am now 8 months in taking Dab/Tram and I am finding it a lot easier. The fatigue has improved and my energy levels have risen.

Good luck with your journey.

David