I just wanted to document that it's 6:30 a.m. here in New York at the Hope Lodge and I've just been awaken to the worse back pain I think I've had yet. The pain is so intense, I'm having trouble breathing. This is really scary. Maybe it's because this bed is softer that what I'm used to or the fact that I was sitting for so long yesterday at the airport with a delayed flight plus sitting on the airplane but this is ridiculous. I just took two pain meds hoping it can cut into this pain a little before I go get my platelets checked and can take a couple of Naproxen.
I don't think I can endure this much longer... Question is, should I do another cycle of this SAHA/Niacinamide or let my body continue to "dry out" the required 30 days and try and find another trial asap.
A nice person commented on one of my previous posts that RAD001 is open in Tennessee and since it's a national trial am wondering why Dr. Ramchandran would have told me it's no longer available in Detroit. I think I may have to do some pushing here...
Anyway, sorry for the rant but I've got to release this pain somehow... I'm also really scared that my spine is going to crack or something. It feels like my back is ready to snap in half or something. This is surely no way to enjoy life... I'm going to demand some answers from Dr. Zain as Dr. O'Connor seems to not be in again today.
Please wish me luck...
5 comments:
LUCK Chris and as always you are on our mind............ Loraine
Hey Chris, sorry about the back pain, hoping you get some relief soon.
The RAD trial seems promising hope you can get on board. Also talk to Marsha about the RIT trials, seems like the results have been pretty good.
Hope you get to feeling better soon.
Best of Luck!
I hope you feel better. When a cancer patient who has been through so much says it is the worst pain ever, then it must be really bad. Good luck with these tough decisions.
Chris, so sorry to hear that you're in such pain. Please know, even though i don't know you, i'm sending you positive thoughts.
As I mentioned in a previous comment, my adult son had Hodgkins in 07. I follow your blog with interest and can really sense what a sweet and caring person you are!
Virginia (in Hartford)
Chris, RAD001 might be closed to new patients because they accrued everybody they needed.
Wishing you a lot of luck!
Marsha
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