Braf positive lymph node biopsy

Hi Tinktoo, I’m sorry to hear about your biopsy result, and will keep my fingers crossed for your scan. You don’t need to apologise for posting and ranting, every once and a while it’s useful to get things out of your head, I hope it helps.

 I’m braf positive to and in 2015 had Dabrafenib for 9 months which shrank my lymph nodes for 9 months. When a scan revealed a further spread to my ovary I was moved onto Pembrolizumab. There are a number of people on the site on the dab tram combination either as an adjuvant treatment or for a recurrence. I hope they pop in soon to share their experience with you. It seems an age away for me now. 

I have a scan due next week, and results due end of Feb for me. I hope telling your daughter goes ok for you. 

Hi this is my first time on community and I read your message. I brag positive, I have stage 4 melanoma diagnosed 2 years ago and have been in immunotherapy treatment which was successful for 2 years. I have been on targeted treatment for the last 6 months and recent scan was positive, tumours are shrinking. So stay positive my friend the treatment is not so bad 7 tablets a day and some side effects like skin rashes but otherwise able to cope. I am really positive about this treatment. 

Hi Tinktoo

 So sorry you have to go through all this worry , and I hope the scans shoe no more tumour’s.

I too had a mole removed from my upper back in 1998 they were not so advanced in those days I was told if one cell escaped it would return .

A bit of a surprise when it returned in 2017 in the brain.

I like you are BRAF+  I had the tumour remove in Australia and the  dab trab is what they recommended  .

 I have been on it for two years now and like mylife1958 it’s not too bad at all  I think we all get the skin rash and the shivers when cold but easy to deal with.

Most of my tumour’s have gone now just one in the lung taking its time but only 14mm long.

The pills are taken 12 hrs apart and 2 hours after a meal and no food for 1 hour after so when you take them needs to be when it fits in to family meals .

I take them 8.30 am and pm but one person on the group takes them at 0430am and pm.

I go to see the consultant once every 4 weeks  he books scans CT and MRI every 3 or4 months . I go to the eye clinic every 4 months and ECG evert 4 months (pills can have an effect on both.

Sorry such a ramble not to good on the PC any questions just ask and best of luck.

Mick.

Thanks for the message KT.

I remember seeing you last time i was on here. I hope your scan goes ok.

I've just had an appointment through for the 10th to have a brain scan, am still waiting for my body scan appointment. do you know if the stuff they put in hurts or anything? I should have asked but wasn't thinking straight!

Thanks so much for your message. I'm so glad to hear that your treatment is working so well and that things are looking so good for you.

Did you change to the targetted treatment as it was meant to be better? do we have to take it forever? i did read somewhere that some people have some awful side effects....

gosh...that must have been a shock after so long. may i ask how you discovered that it had spread to the brain?

Again, are you going to be taking the treatment forever or until your tumours have disappeared? ar eyou in the UK?

Is the Dab tram combination what they recommend now do you know?

i'm so very glad that your treatment is working for you.....i wish you every luck

I am so sorry Tink  for not replying before I had trouble getting on the site and did no see your reply.

I hope all your scans are finished and the results are treatable.

To Answer your questions I have a daughter in Australia and we speak on watts app she noticed I was changing and got me to pop over there where her doctor investigated and found it.

When I started  I was told two years to live but after two years they said the drugs work so well at least five years now, so I don't think they know.

I had the result of my last scans today and only a small one in the lung remains these drugs work better than they thought.

I am being treated in Cheltenham U/K all the staff in oncology were working yesterday they said these drugs did not  affect the immune system enough to stop them but I an on the  shield list.

I hope that helps .

Mick.