keep trying

Posted by in Uncategorized

Ayrie’s doing really well and we are trying another medicine.  Ayrie will be the first RRP patient in the country to try this and it’s really safe….so definitely worth a try.    It may very well not work but I am so lifted by the fact that our surgeon is still trying to make a miracle happen for Ayrie.

And for all of my RRP friends and families out there, I’m not holding out on you!  I don’t think this is going to be a miracle cure.  It’s actually really a reach.  There’s a drug, propranolol, that is primarily used for older patients with high blood pressure.  I’t s been around since the 1950’s and there a number of other uses such as migranes, anxiety and PTSD.  Last year there was a letter to the editor in the New England Journal of Medicine from doctors that stated that they had been using proporanolol with  babies with cardiac problems and noticed that the propranolol also decreased the size of hemangiomas, a type of tumor.  (I think I have this at least 90% right!!)  Anyway, Dr. Hartnick wondered if there was an effect on hemangiomas then possibly there could be an effect on the paplillomas.

Ayrie has been taking it twice a day for two weeks now and it seems to taste good enough that he takes it with no problem.  We will have surgery in 4 weeks (I hope. Insurance is denying out of state coverage right now!!) and I’ll let you know what we see!  Ayrie’s also still using the Avastin so if there is an improvement we won’t know whether to attribute it to the Avastin or the proporanolol.

Anyway, it’s not the drug that I was excited about as much as having a really smart and creative surgeon who doesn’t throw up his hands and say ‘We’ve tried everything!’.  He just doesn’t give up!!