Aa
Another Relapse
Some had questions about Harvoni relapses and I can tell you I did.After clearing a year ago on sovaldi-olysio I relapsed immediately.This time I did 6 months of Harvoni and finished July 3rd.Just got bloodwork back today that was done on August 18.Just 6 weeks after finishing and it says quantitation 455,000. HCV log10 5.658 They will never give me coverage for another treatment,They know I cant be healed and its just throwing money away.I was starting to believe I beat this and now I'm headed straight back to the nose bleeds,the paralyzing cramps in my legs and the unbearable itching.I don't know what to do.Too tired of being defeated by this disease.
Glen
Glen
Thank you Susan
I got a call back from gilead today.They said I did need my doctors input as far as what I should be taking,if there is anything available for someone in my situation.I also talked with a man at the university of penn,he said there might be a trial available to me at the end of the year.What I don't know is how long of a clean out period is needed before you can start something new.I am ready to go right now but I am afraid they are going to say its too soon.I finished the 24 weeks on July 3rd.December would be 6 months.Is that too soon for them?
Glen
I got a call back from gilead today.They said I did need my doctors input as far as what I should be taking,if there is anything available for someone in my situation.I also talked with a man at the university of penn,he said there might be a trial available to me at the end of the year.What I don't know is how long of a clean out period is needed before you can start something new.I am ready to go right now but I am afraid they are going to say its too soon.I finished the 24 weeks on July 3rd.December would be 6 months.Is that too soon for them?
Glen
Glenn,
I'm so glad to hear of some possible trials in the future. Sending prayers, good thoughts and energies your way. I have my 12 week post to labs 11/20. After 3 tx failures, I'm am hopeful, but scared.
Take care.
I'm so glad to hear of some possible trials in the future. Sending prayers, good thoughts and energies your way. I have my 12 week post to labs 11/20. After 3 tx failures, I'm am hopeful, but scared.
Take care.
Glenn,
I wish I could give you a definite answer on the trial question, but unfortunately, since I'm waiting to hear back from them, I don't know how to answer it. It is supposed to be a Merck study, no interferon...with next generation inhibitors with the possibility of a Riba arm. It's supposed to be with or without Riba. But, I have no study number to give you since it hasn't been confirmed yet as far as what I've been told. So many of the studies that I've been interested in, would turn me down because of my Telaprevir exposure and null response to it. And now, with the exposure to the the Sovaldi within the past year time frame.., another reason for the drug companies to say 'no', as far as with a trial. But, it will be 1 year since I had any meds in my system, as of 9/18/15.., , so I'll have had ample opportunity for a clear out. As far as your situation, I wish I could say, definitely, yes, this trial would be a 'go' for you, too. But, since I don't know yet with 100% certainty that this trial will be a definite, it's just a 'hopeful expectation' right now. If I hear anything one way or another, I'll definite be contacting you with a trial number.., like for example : NCT### , etc., etc. Personally, I wish the treatment drugs weren't so ridiculously high in cost, because doing them outside of a trial is so much easier. But, it is what it is. I would think that with you being a later stage that the drug companies would be giving you compassionate usage though. In my case, that won't happen because of the earlier staging. One plus though, if I do get into the trial, at least I'll get a fibroscan. Susan400
I wish I could give you a definite answer on the trial question, but unfortunately, since I'm waiting to hear back from them, I don't know how to answer it. It is supposed to be a Merck study, no interferon...with next generation inhibitors with the possibility of a Riba arm. It's supposed to be with or without Riba. But, I have no study number to give you since it hasn't been confirmed yet as far as what I've been told. So many of the studies that I've been interested in, would turn me down because of my Telaprevir exposure and null response to it. And now, with the exposure to the the Sovaldi within the past year time frame.., another reason for the drug companies to say 'no', as far as with a trial. But, it will be 1 year since I had any meds in my system, as of 9/18/15.., , so I'll have had ample opportunity for a clear out. As far as your situation, I wish I could say, definitely, yes, this trial would be a 'go' for you, too. But, since I don't know yet with 100% certainty that this trial will be a definite, it's just a 'hopeful expectation' right now. If I hear anything one way or another, I'll definite be contacting you with a trial number.., like for example : NCT### , etc., etc. Personally, I wish the treatment drugs weren't so ridiculously high in cost, because doing them outside of a trial is so much easier. But, it is what it is. I would think that with you being a later stage that the drug companies would be giving you compassionate usage though. In my case, that won't happen because of the earlier staging. One plus though, if I do get into the trial, at least I'll get a fibroscan. Susan400
Hi Jules
Just got off the phone with the U of Penn by coincidence.I talked with a gentleman who is going to have someone get in touch with me to attain my records.He said there will be a trial for me at the end of the year.When I get all the details I will relay them on here in case somebody else needs this.
Thank you Glen
Just got off the phone with the U of Penn by coincidence.I talked with a gentleman who is going to have someone get in touch with me to attain my records.He said there will be a trial for me at the end of the year.When I get all the details I will relay them on here in case somebody else needs this.
Thank you Glen
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