a tough blow

[Vampy]

after being told that i had the G511D gene and after my son was tested and found out that infact was his gene by my old clinic, i had high hopes of qualifying for kalydeco. Today i found out that i do not have G511D, F- something, i was kinda shocked when they told me. I was and am very devistated upon this news. My dr with my new clinic told me he would look into deep research to see if this drug would work on my "uncommon" mutation of cf is what he called it. I dont know what to do now. Other then sit here and wait. I never thought after being treated the way i did at my old clinic that this would also happen.
Just don't know what to do now.

 

[Aboveallislove]

Oh, I am so very sorry. But there are many other mutations it can possibly help. Can you post the mutation? I know there are several here who know all the research and might be able to give you some links/info for your doctors. Also, I know that some folks who have mutations that it isn't suppose to help (but not df508--which has been tested and ruled out as benefitting) have tried it for a month and it has worked on them. There is a facebook page Praying for success with 770/809 (or something close) which has alot of info/people who have used for other mutations. Saying some extra prayers for you tonight.

 

[Vampy]

yea its f508, i researched some things and said that with kalydeco there is a drug called VX-809 that might help i dont know.

 

[Aboveallislove]

Both mutations? If so yes 809 combo...moving to phase 3 soon...maybe work on goal of getting back on track to be able to get in study? But if you other mutation is a rare one then kalydeco might still work. Hug hug HUG...

 

[CyrilCrodius]

If he said that one of your mutations is uncommon, it is likely not DF508, because it's the most common mutation.

 

[Vampy]

I dunno whats going on its starting to drive me insane

 

[2005CFmom]

So does this mean that your son does not have G511D either? If he DOES in fact have this gene, and it did not come from you, that means he has a 2nd cf gene mutation from you. Your signature line says he is a symptomatic carrier but if he does have the G511D mutation he may actually have CF.