Question re Dabrafenib and Tramatenib collection.

From what I can remember in 2019. 

We'd have a quick chat on any side-effects, they'd check the bloods then approve the next months worth. They'd give me a piece of paper to take to the hospital's pharmacy, then there'd be about a 30-40 minute wait to get them. Though this wasn't any longer than anyone else, just the average wait time at the busy hospital pharmacy. 

I would be given a blood form at the Oncologist appointment to be used before the next appointment a month later. I'd go to a local walk-in centre about a week before my next appointment with the Oncologist. 

Over 2 years ago I was on these drugs for 7 months. I had a blood test 2 days before as I still do now with Nivolumab. I had to go to the oncology department at my hospital to pick up the drugs. It was quick as the drugs were ready for me I was asked questions about my health before been given the tablets. I am also classed as a extremely vunerable but my hospital doesn’t insist on COVID test or isolating before I go for my treatment. I wish you well with the treatment and surgery. Is the surgery to take out a lymph node? I got my scan results yesterday and everything is still stable   Without a pet scan they can’t tell if my tumour is dead or not but they haven’t mentioned me having one. I was told I would be on Nivolumab I definitely. If this is the case I feel grateful to be able to have such treatment .

Thank you both scot88 and lgrgdg90. Can you tell I was having a bad day, and going over little details of things going forward. I hope my hospital have revised their procedures, to something streamlined. 

LG I’m glad your scan continues to be stable and that your feeling happy carrying on with Nivo. 

As for me yes I’m booked in for surgery on a lymph node in my groin it very near the surface but it’s now 33mm, the Pembro is not stopping it. The node is being donated into a study with some blood samples to make an experimental  personalised treatment, it will take 3 months to make. I’m well at the moment still walking and I played tennis on Monday, but have other areas in lymph nodes that are smaller so I’m changing to dab tram, and when Dab tram has had its day the experimental treatment gives a further option, and helps science. I sent off 13 questions to the study team they must be regretting inviting me now, and I’ve been regoing over all the options that were given to me, they were really quick at getting back to me and reassuring where they could be and honest in the others so now it’s time to just stop overthinking as there’s no new info to be considered for the choice and as soon as my last Pembro is started then the choice is done. Dab Tram next and then if Dab tram works well stay on it and if not I have the extra option of the trial or if the manufacturing fails there is ipilumamab. 

I thought some helpful practical stuff might help now, like how do I collect my tablets and if another hospital has a better way than mine I could put it forward in a suggestion box. 

My last Pembro is tomorrow no 57 what a shame it’s not my last cannula! 

I wish you well with your treatment. I hope the Dab tram works for you but it is good there are other options. I forgot to mention that when I took these drugs I got periods of uncontrollable shaking. I was often feeling cold The would get too hot. I know everyone’s different so hopefully your side effects will be mild. Most of the time I am very positive about my situation but at other times I have to remind myself I am lucky that these treatments are available. I would be interested to know how you get on with the tablets and again I wish you well.

Hey scot88 can I ask how long you took the tram and dab for? My husband is coming to the end of his year on them and I’m wondering what is next.. I.e scans etc

Hello,

I took them for the full 12 months ending around Christmas time 2019. 

Currently have MRI,CT scan and blood test about every 6 months. Also get skin check-ups though they were suspended in March 2020 due to covid.