What is the longest anyone has been on DAB and TRAM for from start to finish and can you note down affects and stop tines if any.. Has anyone had to stop because of a medical necessity? IE in interfered with heart and/or eyes etc.
I haven't been on this combination but noticed that your post hadn't had any replies yet.
If you type 'dab tram' into the search bar here in the group you'll find lots of previous posts which mention this combination. You could then have a look through them to see if any of the posts give you the information that you're looking for. I realise that might take some time but in the absence of replies that's probably your best bet
When you have a minute it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
This is a question that I'd love to know the answer to also. I've been on Dab/Tram since July 2021 for Stage 4 metastatic melanoma in my lung. After the first month on treatment i had to halve the dose of Dabrafenib as it was causing issues with my heart, after the second month my heart was back to normal so went back on fully dose. After upping the dose I was ill for a few days with joint pain, shivers etc but was OK after a week. The only other break was when i had covid in January and couldn't go to the hospital to get my meds. When I went back on them i was sick for a couple of days again but have been great since then.
My last scan showed my lung is clear or tumours and my lymph nodes in my lung have got even smaller. The best result I could have hoped for Obviously i would love for this treatment to work forever but I've been told that won't happen. I've found it impossible to get statistics on how long people have been taking the treatment for though and would love to know.
All the best everyone.
Thank you for your reply Angela, my partner has been told treatment will be a year as you can only take this combination a year. My main query has anyone taken it for a whole year had to or told to keep at it for the year.. My partner started 1st Dec 2021 has had to stop four times because of side affects ie Joint pain high temperatures, shivers but the main reasons for stopping is because his neutrophils (white blood cells) have dropped too low.. Fortunately he has been clear of any tumours only one lymph cell had cancer cells and removed this was before treatment begun and all further scans clear apart from another lymph node that showed an infection but thankfully no cancer cells after biopsy. He has this treatment because he is BRAF positive and apparently best treatment because of that.. I’m pleased to hear your scans are clear. All I have found is that this treatment can only be for a year or until body says otherwise IE problems with heart/eyes.. Hopefully if alls well after the yr we can get on with our lives fingers crossed.
You take care X
Is he on the treatment as a adjuvant treatment? You can definitely take it for longer than a year, i've been told I'll be on it until it stops working unless I suffer any bad side effects which makes me stop. The nurse told me that some people at my hospital have been on it for a couple of years.
Hopefully your husband will have a positive outcome and as you say you can get on with your lives. For me i have the option of immunotherapy when targeted therapy stops working then that's it.
All the best to you both x
Hi NannyStan my husband only got to 3 months before he was taken off it as he came out in a nasty rash all over his body. The Consultant has now said (after a month off using steroid cream) that he won’t be going back on it as ‘everyone only gets one round of adjuvant treatment’. So he’s not been offered any other treatment, or immunotherapy or a reduced dose of DAB & Tram. We were originally told that he would only get one year anyway (as he’s stage 3B BRAF) so it was to reduce the chances of it returning. So he hoped to get to Dec 2022 on it but it’s not to be.
He’s sad as he now feels that he’s not doing anything to try and stop it returning but the consultant says there’s no other treatment appropriate given his body’s reaction to Dab and Tram. Mixed emotions really as the rash was bad and is still there…. He will still get skin checks and CT scans every 3/6 months for the next 3 years. Seems to be different rules in different parts of the country?
All the best
Sorry to hear about your husband I guess 3 months treatment is better than none. These drugs are toxic and can cause horrible side affects, my partner started Dec 21 and has continuously had to stop 24-48 hours the longest break so far has been 15 days this is because his neutrophils ( white blood cells) are too low. He is on another break now. He has 3b had one lymph node positive and BRAF positive.
We know a lady who had to stop 4 months in because it affected her eyes and continues with checks scans and dermatology. We have discussed this and have said that if we have to stop completely we would be fine with that as having the scans is great and of course if god forbid anything was found another treatment would be given, these treatments are like having an insurance I guess. Please try not to worry I’m sure your husbands scans will continue to be clear and if not then another treatment would be discussed with him. I understand how you both must feel going through this is a rollercoaster of emotions thinking what if.
I wish your husband well.
Take care. X