Aa
Factors surrounding transfusions?
The thought of undergoing transfusions as a part of tx is a bit unnerving for me right now. Considering that several here have gone through this, and it probably has or was old hat by now, I was wondering if you might share more about this procedure?
For instance, are there things one should be doing/considering in preparation for it?
What kind of post procedure sx's can one expect to experience?
How long did post sx's last?
Do anemia and/or neutropenia sx's go away or lessen in severity following the procedure?
How long before anemic/neutropenic sx's return?
If performed multiple times, what was the frequency that procedure was used?
It would be interesting to see personal experience responses and see if like IFN/Riba tx that sx's differ from person to person.
For instance, are there things one should be doing/considering in preparation for it?
What kind of post procedure sx's can one expect to experience?
How long did post sx's last?
Do anemia and/or neutropenia sx's go away or lessen in severity following the procedure?
How long before anemic/neutropenic sx's return?
If performed multiple times, what was the frequency that procedure was used?
It would be interesting to see personal experience responses and see if like IFN/Riba tx that sx's differ from person to person.
Hey, but you will have to get your beagle Halloween costume out. You won't be able to look like the Night of the Living Dead, at least naturally! LOL
Doug thanks for the web sites, I will go on it later to see what I can find out. If you here of a trial using viramidine let me know because I'm game.
Yes, if the new drug is not FDA approved the ins co will not pay for it, however I was told that the FDA will be approving viramidine(Taribavirin) and it should be ready for treatment as early as 2007. Ans you know I 'll be first on the list.
Beagle
Yes, if the new drug is not FDA approved the ins co will not pay for it, however I was told that the FDA will be approving viramidine(Taribavirin) and it should be ready for treatment as early as 2007. Ans you know I 'll be first on the list.
Beagle
Got an off the wall ideal for you.
Viramidine aka Taribavirin has completed Phase III in both Europe and the US. I know it's not yet for sale and that won't happen until sometime next year, and I also note is was not as effective as RIBA, but also tests weren't weight based so that possibly could be adapted.
So the off the wall idea is apply for special exemption with the FDA, which having already passed Phase III should not be a problem. I'm not sure of the process but I bet your doctor would know considering his expertise. He could almost certainly calculate the proper dose for your weight. Very possibly could eliminate the anemia totally.
Just a thought.
Doug
Viramidine aka Taribavirin has completed Phase III in both Europe and the US. I know it's not yet for sale and that won't happen until sometime next year, and I also note is was not as effective as RIBA, but also tests weren't weight based so that possibly could be adapted.
So the off the wall idea is apply for special exemption with the FDA, which having already passed Phase III should not be a problem. I'm not sure of the process but I bet your doctor would know considering his expertise. He could almost certainly calculate the proper dose for your weight. Very possibly could eliminate the anemia totally.
Just a thought.
Doug
Great idea! There are several people that can't tolerate the Riba on the forum. Beagle went through many transfusions and had a really low Hgb the whole time. He just relapsed. He was talking about this drug the other day. I didn't realize the FDA would do this!
Have you thought about that idea of getting a waiver from the FDA to start sooner? Perhaps you like the idea of a rest, I sure would, but thought that was an interesting idea.....Geez, I said idea 4 times...will my spelling, grammar ever come back? LOL
Here's Valeant's Customer service phone number:
1-800-556-1937 5:00am-5:00pm PST. Website in case someone wants it: http://www.valeant.com/contactUs/index.jspf. They use the name Taribavirin. I'll try and give them a around 1:00 EST hoping that is after someone who might actually know something will be in and post-morning coffee and see what they can tell me. Another possibility is that it is already available in another country in which case it could be pretty easy to get, unless of course it is sold currently only in Iraq.
A research doc might be able to get supplies too. My doc doesn't do research but might be another end around that way.
FDA exemption may be called Hardship exemption. Anyone know an oncologist? They may know something as well. I'll try and call the FDA tomorrow too, 1-888-463-6332 or 301-827-4570 8:00am -4:30pm. I've checked their website but can't find anything. I dunno, maybe it's not done anymore, but if it is out anywhere in any country there's a way to get it.
I'm looking as I plan on doing tx again this January, due to insurance and their max out of pocket in one year routine. I know anemia will be coming almost immediately and sure want to avoid it. I'd sure go for VX-950, Viramidine, and IFN.
Say, another question, anyone been on a clinical trial and do they allow the use or Procrit or will they stop at first sign of trouble?
Stupid thought, but I wish there was a hep site specifically for non-responders, relapsers, and for those whose liver is say 3/2 or worse. In other words only for us desperate folks.
Doug
1-800-556-1937 5:00am-5:00pm PST. Website in case someone wants it: http://www.valeant.com/contactUs/index.jspf. They use the name Taribavirin. I'll try and give them a around 1:00 EST hoping that is after someone who might actually know something will be in and post-morning coffee and see what they can tell me. Another possibility is that it is already available in another country in which case it could be pretty easy to get, unless of course it is sold currently only in Iraq.
A research doc might be able to get supplies too. My doc doesn't do research but might be another end around that way.
FDA exemption may be called Hardship exemption. Anyone know an oncologist? They may know something as well. I'll try and call the FDA tomorrow too, 1-888-463-6332 or 301-827-4570 8:00am -4:30pm. I've checked their website but can't find anything. I dunno, maybe it's not done anymore, but if it is out anywhere in any country there's a way to get it.
I'm looking as I plan on doing tx again this January, due to insurance and their max out of pocket in one year routine. I know anemia will be coming almost immediately and sure want to avoid it. I'd sure go for VX-950, Viramidine, and IFN.
Say, another question, anyone been on a clinical trial and do they allow the use or Procrit or will they stop at first sign of trouble?
Stupid thought, but I wish there was a hep site specifically for non-responders, relapsers, and for those whose liver is say 3/2 or worse. In other words only for us desperate folks.
Doug
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