BRAF POSITIVE & NEGATIVE…

Hello Aaron07812, how interesting that you’ve been told BRAF positive and negative. Having tested positive in 2015 for the BRAF mutation and having been on Pembro for #57 doses I’m returning back onto a BRAF tablet but a different one than I first used. A lymph node has been removed for a future trial and I asked if it has been tested for BRAF status yet. They didn’t actually answer the question although it’s gone for DNA sequencing but said it’s highly unusual for previous BRAF positive to test negative. Hence my waiting to see if you got the right type of reply from someone. 

I think whichever adjuvant treatment you have you get used to it, and depending on your personality will see the best (or the worst) in it. I suppose if it’s tablets like I’m on now (but not adjuvantly) it’s 12 deliveries of tablets after 12 blood tests and 12 consultations and a few scans thrown in. With Pembro immunotherapy if that’s what your having every 6 weeks, it’s 9 trips to the day unit after 9 blood tests and consultations and a few scans. I can see why they would want you to receive something that works wether your results are positive or negative. I hope you get on well with it, I had very few side effects.

Yes my mole tested positive and my SNLB was negative. Perhaps the samples they did didn’t have enough mutation in them is one question. However I’m told immigration can change but it’s rare. My nurse said I’m her first it’s happened to but she’s heard about it happen before. 
I’m just glad my mole did test positive as it opens my treatment options up. 

I believe prembo was chosen for me based on the BRAF possibility chance and that it would work on both positive and negative mutations. 

I would have like to have done the tablets as I’ve heard very good things about them but my oncologist said they both as good as each other. 

Are you stage 4 then if is not adjuvant treatment? I didn’t realise you could have so many treatments I thought it was only for a year…? What’s you story if you don’t mind me asking 

Hi Aaron, yes I am stage 4 my story is long as my diagnosis was in 2015 but it’s in my profile which you get to by clicking on my user name. Pembro is only for one year on adjuvant as they hope in that time to mop up and destroy any stray cells. My melanoma was discovered when it was in many lymph nodes but after targeted and then immunotherapy scans showed no more disease after a year off treatment it unfortunately returned and I went back onto Pembro. I later had one node removed that was not reducing but was in that biopsy showing signs of dying. I’ve had different nodes increasing then reducing so difficult or pointless to remove by surgery but thankfully as they’ve died until this last year so as my cancer is now hiding from being detected it’s time to try something else, but Pembro has kept it mainly under control for a long time.

I’ve just been unlucky having blips when Melanoma has returned in various lymph nodes rather than staying away for a very long time. I have enrolled on a trial though that might give another opportunity of it staying away for a long time. In the meantime I’m on targeted therapy tablets may work a long time for me as they do on some people but if they only work for few months like last time I was on a similar tablet the trial process will have lymphocytes ready to be reintroduced into me to have another go at beating this and making me hopefully clear again.

Wow that’s some read! It’s awesome you’ve logged every stage that’s incredible. 

well I hope you can kick melanomas arse this time for good. When I was diagnosed 6 months ago I took to google and broke down mentally. I thought I was dead and buried in less then a year and after speaking to the professionals it’s really not the case in 2021. 

with new treatments, many of them and quite afew trials I hope it’s not long till melanoma is curable even at stage 4  

I do hope my treatment work. I was diagnosed stage 3a I had two lymph nodes removed from armpit one of them out of the two had a 2.2mm deposit with much smaller deposits around the area with it. After research I seen 2.2mm was a sizeable amount within a lymph node to have. However my oncologist wasn’t convinced and was happy for me to “watch and wait” it was a very hard decision to make. 

i went off and spoke with another two oncologists within the UK who both recommended taking the treatment so based upon that and having so little time to react, process it all and do further research I signed the forms and decided to do a year on prembo. 

hopfully we can both have a good 2022. 
you uk based? 

Hi Aaron, yes I am in the UK, and wishing that for both of us to.

When do (did) you start your first immunotherapy? 

Likewise, I started it 3 weeks back or so it was my first treatment. I go every 6 weeks  my next is 5th Jan. 
I’m not 100% on how long it takes so become “effective” perhaps straight away or has to take time to build in the the system… not sure on that. 

appreciate the reply’s it’s good to speak to someone who’s gone through the same thing.