Erdheim-Chester Disease (ECD) Community

Meet, discuss & support other patients or families living with Erdheim-Chester Disease (ECD). Contribute to topics, or just share what's on your mind

Update April 2017

Hello,

Just wanted to give everyone a quick update on how things are going. Since my last story in 2015, I have switched to Dabrafenib. Let me tell you...it has been working amazingly for me. Vemerafenib was good, but I had some bad arthralgia in my left arm and major sun sensitivity. Not on Dabrafenib. I have been on Dabrafenib since May 2016 on the maximum dose (11 months already). Balance is almost 100% in terms of walking and going up steps etc. There are no side effects to speak of for me. I am able to work full time, drive, exercise (even though I should do that more often), ride bikes, etc. If you are on Vemurafenib and are thinking of switching, you may want to ask your physician to see if it's a good idea. Feel free to ask me anything you are wondering. Hope all is well with you all!

Tihana
moderator

Dear jutty, thanks for the update. It's nice to hear that the therapy is working good for you and there are no side effects! Keep us informed :)

Justin,
Thanks for the update. I've been meaning to e-mail you and ask those same questions. So no sun sensitivity, no occasional joint pain, or shin cancers to worry about? Is it only available as part of a study, or can a doctor prescribe it? If you're in a study, do you have to be seen monthly? I'm getting tired of not being able to go out in the sun and having moles frozen off my face and head, not to mention sliced off. I'm glad your doing so well. I'm still on the Vemurafenib. Now the important question, does your hair still curl?

Well to be honest Larry, Dabrafenib is not peaches and cream for everybody. I have heard some people having joint problems and other issues associated with this drug. I don't think sun sensitivity is a side effect, but I'm not sure. Vemurafenib was good, but it was truly annoying to be extremely careful every time you leave your house. As far as the hair thing goes, I started thinning even before I went on the drug. I do have a lot less hair on my arms, legs, and chest for sure. I see the dermatologist every 3 months because there are some skin cancers associated with Dabrafenib. I go because it's better to be safe than sorry. I am not on a trial for Dabrafenib and my wife's insurance covers it 100% without no copay. If you have any questions, let me know. Hope you're feeling well.