Thanks. One trial said they would take patients up to 70 years old. Do they want us to come in in wheel chairs. I will tell the other people at the support group tomorrow night. They need more patients in the trial. One lady was going to get in the Stanford one in Palo Alto but it was too far to go from here.
Yes, because the Roche trial was 90 miles away and way too far to go every week for a year. No one told me they have the same trial right here in my city.
I was trying to get on tx. but the Rx was sent to the wrong pharmacy for a week. I was on vacation last week. They called and left a message on my work phone. They are supposed to let me know the cost today probably $5,000. Why pay all that money if I can get in a trial and have polymerase near my home?
Do you think at your age it's worth taking the chance you might get the placebo? Wouldn't it be wiser just to take the combo and go for the 'cure' versus a gamble on a new drug that may not even work?
It seems you've had such a hard time trying different options. Why not just wait until May and get it done with?
In addition to the meds you are thinking of you need to remember too that Neupogen and Procrit are VERY expensive (6,000 for a box of ten Epogens - that lasted me only a month).
Have you looked in to Commitment to Care and stuff?
Do you really understand what a "trial" is? There are LOTS of new trial drugs out there...and the hope is one will work but there really are no guarantees on not on the odds but also what sides you will experience both during treatment and LONG TERM. That is why they are trials - they are not approved by the FDA as viable drugs.
Hopefully one will pan out. Just because the virus is KILLED quickly to UNDETECTIBLE does NOT MEAN it is gone for good! In fact the latest studies show that the longer you treat the better chance you have at it NOT coming back.
That is sort of opposite the logic of doing a "quick, easy" version of Vertex for example.
There are pros to every side of them I supposse.
WHICH poly is this, do you even know what it's called so we can look it up and reserach it with you?
This is the same trial the medical group in S.F. wanted to get me in. They are getting excellent results. It's just a few weeks behind Vertex. It doesn't have a name. It has a number. I don't know the number but they only have one that is a Roche polymerase.
Thanks for all your encouragement and support. I really appreciate it. I'm a trail blazer. I don't follow the crowd. The crowd follows me. God is with me. Have no fear.
No, I didn't start. The doctor sent my Rx to another place and I was on vacation last week so I didn't know about it. I called yesterday and had it sent to the right pharmacy but it might be expensive. They are supposed to call and tell me today how much the copay will be. I don't start on medicare until May when I turn 65. The doctor said the meds would be $15,000.
I have been getting acupuncture it helps a lot. My insurance pays for most of it if the Dr. is an M.D.
Then when I got home last night the lady called about the clinical trial here near my home. This is the same one I was going to get in 90 miles from here. They are enrolling now. It doesn't have a name, just a number.
Yes, that's my clinical trial. I don't know if I will get both the pegasus and copegasus. We will see. I'm ready for whatever.
I will get the number next week. Probably the one that finished phase I recently. They are a little behind Vertex.
Dr. Cecil sent me a very nice email last month and told me to try to get in a clinical trial. He was very understanding and helpful.
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