Trametinib

[twiggy66]

Hi is it here anyone on here on a logs (trametinib) trial. I would love to know how others are getting on with this drug.

[mimanda]

I've been in the Trametinib trial for like 28 months or something like that? It shrunk my tumors slowly and then has kept me stable. It is the first drug that has ever worked on my tumors in 10 years. I'm on 2 pills a day because I had some really harsh side effects with my skin.

[twiggy66 in reply to mimanda]

Hi Miranda so good to hear from you, I’ve now been on Trametinib trial for 26 months & like yourself getting on fine with it 🤞. I started off on the higher dose, but had dreadful side effects with my skin too, as you said it was shrinking tumours, but I had no quality of life so again like you I’m now on the lower dose & everything is stable. As far as I know I’m the only one in Scotland still on the trial so it’s great to find someone else on it too . Keep in touch & let me know how your getting on. Stay well.

Isobel

[twiggy66 in reply to twiggy66]

Hi Mimanda sorry for previous wrong spelling of your name, meant to ask you which part of the world are you from.

Lv isobel

[mimanda in reply to twiggy66]

Awesome! So great to hear about you, Isobel! I’m Amanda from Michigan in the US. I will certainly keep in touch! The skin reaction I had was so terrible so I totally understand what you’re saying! For about 3 months I had open bleeding sores on my face and looked like an extra from the zombie show The Walking Dead! Every morning I would wake up and have to peel my face off the pillow. I didn’t realize how depressed I was about the pain and how I looked until it got better. So glad to be over that! It’s so interesting we’ve both been on it for so long and wishing you the very best health!

[twiggy66 in reply to mimanda]

I kept a photo history of all my symptoms & as you say it’s not until you go back & look you realise how bad it was, but I was exactly the same for about 6-9 mths it was just one side effect after another, facial sores & scalp started losing my hair again & had to go back to a wig. My entire skin started to shrivel up, as if there was no moisture in my body. Once my dosage was lowered side effects started to ease up. Last years CT scans have shown tumours not getting any smaller, but not growing either & my professor is quite happy with that & if he’s happy I’m happy lol, long may it continue, now I just have wee niggly side effects & am so grateful I got the chance of this trial. Hope it continues to work for both of us & anyone else on it. Take care Amanda.

Isobel xx