Hello

Hello Margyy, I’m sorry to hear about your fiancé’s diagnosis and spread, I’m wishing you both luck for your first scan on dab and tram. I’m on similar drugs myself (Encorafanib and Binimetinib) which I started a month ago today. I have a cluster of nodes that are massing together in my chest and was having trouble with sickness but that symptom has gone away so I’m optimistic about these drugs working quickly. I have previously back in 2015 been on Dabrafenib when Dab Tram was only in trials, the single drug worked quickly then to reduce things. 

How are you both? 

Hi I also had a large tumour burden and took dam tram for 7 months. It worked very quickly to make the tumours much smaller and in the lung they disappeared.I then had some slight progression and was put on ipi and Nivolumab.I am now just on Nivolumab and most of my tumours have gone. I have two near my kidneys but they do not seem to grow and they may just be dead tissue. It is a long treatment and I will probably be taking it for the foreseeable future but I now only have tiredness after the infusion and again in a day or so after it.

I did have various side effects with ipi but could tolerate them  My worst side effects were with the tablets but at the time I hadn’t read up about what side effects they could bring so I think if I had known I would have been able to handle it better. Also people are all different and some have very little side effects with the dam trab .  I am writing to say these treatments can work and I wish you well with the treatments . 

Hi KT at Home

Thanks for your message.

We are both fairly anxious about the scan next week, but generally trying to get on with everyday life. Its good to communicate with others in similar situations, & to feel there is further hope with different treatments, as 6 weeks ago we felt like there was no hope.

Hope your treatment continues to work for you.

Best wishes

Margyy

Hi, 

Thanks very much for your message, it does bring us a feeling there is more hope, as 6 weeks ago we felt there was none.

Hope your treatments continue to improve for you too.

Margyy