You're right SuziQ. No point in worrying about things out of my control for the time being. One step at a time. I do want to start educating myself on what the research is in this area though. I have learned it's irresponsible not educating yourself as much as possible. You can't always depend on your doctor to be on top of everything. But research and worry are two different things, I know. :) Thanks for the info.
suziq said
May 8, 2014
Hi PW,
Yes, there are trials going on (even at the Arlington center) of new treatment for reversing cirrhosis BUT--it is only being used on patients with fatty liver disease. There has been Nothing available for them until this new trial. If it is effective, I am sure it will become available to other people later on. HepTech CLAIMS to have alternative supplements that help reverse cirrhosis even with Hep C. There are some others that CLAIM to reverse cirrhosis as well. I have used some alternative supplements and the damage did progress to cirrhosis anyway. I am not a drinker so alcohol was not a factor. Some people have HepC for years and do not progress to cirrhosis. Some progress very quickly. Have not seen any studies about the difference in progression of damage or why. I have seen suggestions that age and length of disease are factors. I qualify for both factors. Going into treatment my ALT and AST were both under 100 and my VL was only 800,000. Fatigue was my only side effect of Hep C, so maybe the supplements did help in that area.
I am glad the center requested your medical records. That s the first step in possibly getting into a trial.
Just a suggestion, but concentrating on getting into treatment is your priority right now. You can worry about the effects of SVR on cirrhosis later. Worry is not good for you or your liver. One step at a time I hope we will all cure our Hep C and the effects it has had on our health.
SuziQ
patiently_waiting said
May 8, 2014
I'm revisiting this thread because I think I'm starting to finally wake up from many years of wishful thinking. I'm not sure where I ever got this idea, but for quite some time I've had the understanding that as long as you didn't get to stage 4 your liver would heal once you cleared the infection. Probably I cherry picked information to believe what I wanted to believe instead of the truth. So I guess for some the results of the above study is good news but for me it's not so good since I apparently was ill informed to start with. Are there any other studies regarding the reversing of cirrhosis? Also, are there drugs under development for that purpose? I know I've read of some stem cell studies but those seem to be pretty far off if they materialize at all.
patiently_waiting said
Apr 30, 2014
suziq wrote:
Hi Pw,
Calling the research center (817-470-1070) and putting your name on their list does not obligate you at all. But it is on the list IF they have a trial that you might want. Or maybe you would prefer not to do a trial. At the time I applied, there were no FDA approved meds and it didn't seem there would be for some time AND--I was just getting so,so old. Now, in just a year, everything looks different. There were people in my trial who had relapsed or had to stop treatment. I think Mallini said something about the Merck meds being great for relapsers--not really sure what it was.
SuziQ
I called 817-471-1070...you gave that number to me in another thread a week or so ago. Maybe I'm talking to the wrong person or saying the wrong thing. When I first called I asked to be put on the list but the conversation seemed a bit awkward. She said she'd get back to me but didn't. Is there something specific I should say or someone I should talk to? Feel free to PM me if you don't want to post the name.
suziq said
Apr 30, 2014
Hi Pw,
Calling the research center (817-470-1070) and putting your name on their list does not obligate you at all. But it is on the list IF they have a trial that you might want. Or maybe you would prefer not to do a trial. At the time I applied, there were no FDA approved meds and it didn't seem there would be for some time AND--I was just getting so,so old. Now, in just a year, everything looks different. There were people in my trial who had relapsed or had to stop treatment prior to doing this trial. My group at this center doing the Merck trial was 100% SVR at EOT + 12 weeks. I think Mallini said something about the Merck meds being great for relapsers--not really sure what it was.
SuziQ
-- Edited by suziq on Thursday 1st of May 2014 03:00:58 PM
patiently_waiting said
Apr 30, 2014
SuziQ, I spoke with them for the second time today. The first time she said she wasn't sure if they were taking relapsers. I followed up today and she said I should send her my testing data from my last treatment, to include progress notes. I have everything but the progress notes, which I'd have to get from my doc. I plan to have that in my back pocket when I visit him next week. Also if I don't get anywhere with my doc I will seriously consider calling another one, so thank you for giving me someone to call.
suziq said
Apr 30, 2014
Hi PW,
I thought my coordinator said they have a FibroScan machine there or maybe it was at Baylor. Have you considered calling Texas Clinical Research Center in Arlington for a clinical trial??? That is where I did my trial. I know Merck is doing some trials there this Spring. On another forum, a lady I suggested the clinic to, got a trial for her Hep C geno 3 there recently. Those trials were few in the US. All the people in my trial (at that center)are SVR12 (or more) by now. They have a wonderful staff there. I was very pleased with my treatment and their willingness to help any way they were allowed within the confines of a clinical trial. Not sure they have any slots left now. She called for Gilead last Spring, but I was rejected after a free biopsy as I had progressed to cirrhosis. She called again for the Merck trial and I was accepted. We screened at midnight so we would be first on the slots available nationwide. All of us who passed the screening got the trial. I was very impressed with the dedication she shows to us. I simply called them. I was not referred by a doctor. The doctor associated with the clinic is Dr Ghalib. She also has a private practice. She MIGHT allow you to do the Sovaldi/Olysio combo without interferon. Not sure though. She is certainly familiar with all the new meds as that center does trials for several drug companies. It is just a thought. Didn't know you lived so close.
And, yes, cirrhosis is reversing in some cases after SVR. I hope mine is one of those.
SuziQ
patiently_waiting said
Apr 30, 2014
Thanks for the link Matt, that's good info. SuziQ, I just had a FibroSure test done and got results back today. I'm not sure the difference between that and FibroScan, but I got mine done at UTSW in Dallas (at least that's where they took my blood - not sure if they sent it somewhere). I came back an F3 with many septa.
Regarding fibrosis/cirrhosis regression, I thought I had read somewhere years ago that fibrosis would heal after SVR but cirrhosis wouldn't. These studies seem to indicate they both regress in some cases but neither more common than the other. I guess I either misunderstood or got bad info.
suziq said
Apr 30, 2014
Hi Matt,
Just read that article this morning. Since the people were tested over a period of time after SVR, I would assume (you know how that word breaks down) that all the people who achieved SVR in that study took interferon. I wonder if the results are even better with the new drugs. About 3-4 weeks into treatment, I had a lot of right side pain and the trial did another scan on my gallbladder and surrounding area. My spleen, which was swollen in the scan before treatment, had already returned to normal and my liver was a little smaller. Both scans were done at same place so they could compare scans. I am curious to see what my 6 month EOT scan shows. I plan to do the scan for HCC every six month as suggested. I understand that FibroScan is available at one hospital in Dallas Texas.
It does us all hope that the ravages of Hep C can be lessened as time goes by.
Thanks for bringing the article to this forum.
SuziQ
Matt Chris said
Apr 30, 2014
Hello All
Thought this article on SVR impact on cirrhosis was encouraging.
This is a excerpt from the article
The percentage with regression of cirrhosis Of these 137 patients who achieved an SVR, 73 (53%) patients had regression of cirrhosis.
Conclusions; Our results suggest that the majority of patients with cirrhosis who achieve a SVR develop cirrhosis regression. Time between biopsies appears to be an important determinant of the likelihood of cirrhosis regression.
Here is the link http://hepatitiscnewdrugs.blogspot.com/2014/04/impact-of-svr-on-liver-fibrosis-and.html
Hi PW,
Yes, there are trials going on (even at the Arlington center) of new treatment for reversing cirrhosis BUT--it is only being used on patients with fatty liver disease. There has been Nothing available for them until this new trial. If it is effective, I am sure it will become available to other people later on. HepTech CLAIMS to have alternative supplements that help reverse cirrhosis even with Hep C. There are some others that CLAIM to reverse cirrhosis as well. I have used some alternative supplements and the damage did progress to cirrhosis anyway. I am not a drinker so alcohol was not a factor. Some people have HepC for years and do not progress to cirrhosis. Some progress very quickly. Have not seen any studies about the difference in progression of damage or why. I have seen suggestions that age and length of disease are factors. I qualify for both factors. Going into treatment my ALT and AST were both under 100 and my VL was only 800,000. Fatigue was my only side effect of Hep C, so maybe the supplements did help in that area.
I am glad the center requested your medical records. That s the first step in possibly getting into a trial.
Just a suggestion, but concentrating on getting into treatment is your priority right now. You can worry about the effects of SVR on cirrhosis later. Worry is not good for you or your liver. One step at a time I hope we will all cure our Hep C and the effects it has had on our health.
SuziQ
I called 817-471-1070...you gave that number to me in another thread a week or so ago. Maybe I'm talking to the wrong person or saying the wrong thing. When I first called I asked to be put on the list but the conversation seemed a bit awkward. She said she'd get back to me but didn't. Is there something specific I should say or someone I should talk to? Feel free to PM me if you don't want to post the name.
Hi Pw,
Calling the research center (817-470-1070) and putting your name on their list does not obligate you at all. But it is on the list IF they have a trial that you might want. Or maybe you would prefer not to do a trial. At the time I applied, there were no FDA approved meds and it didn't seem there would be for some time AND--I was just getting so,so old. Now, in just a year, everything looks different. There were people in my trial who had relapsed or had to stop treatment prior to doing this trial. My group at this center doing the Merck trial was 100% SVR at EOT + 12 weeks. I think Mallini said something about the Merck meds being great for relapsers--not really sure what it was.
SuziQ
-- Edited by suziq on Thursday 1st of May 2014 03:00:58 PM
Hi PW,
I thought my coordinator said they have a FibroScan machine there or maybe it was at Baylor. Have you considered calling Texas Clinical Research Center in Arlington for a clinical trial??? That is where I did my trial. I know Merck is doing some trials there this Spring. On another forum, a lady I suggested the clinic to, got a trial for her Hep C geno 3 there recently. Those trials were few in the US. All the people in my trial (at that center)are SVR12 (or more) by now. They have a wonderful staff there. I was very pleased with my treatment and their willingness to help any way they were allowed within the confines of a clinical trial. Not sure they have any slots left now. She called for Gilead last Spring, but I was rejected after a free biopsy as I had progressed to cirrhosis. She called again for the Merck trial and I was accepted. We screened at midnight so we would be first on the slots available nationwide. All of us who passed the screening got the trial. I was very impressed with the dedication she shows to us. I simply called them. I was not referred by a doctor. The doctor associated with the clinic is Dr Ghalib. She also has a private practice. She MIGHT allow you to do the Sovaldi/Olysio combo without interferon. Not sure though. She is certainly familiar with all the new meds as that center does trials for several drug companies. It is just a thought. Didn't know you lived so close.
And, yes, cirrhosis is reversing in some cases after SVR. I hope mine is one of those.
SuziQ
Regarding fibrosis/cirrhosis regression, I thought I had read somewhere years ago that fibrosis would heal after SVR but cirrhosis wouldn't. These studies seem to indicate they both regress in some cases but neither more common than the other. I guess I either misunderstood or got bad info.
Hi Matt,
Just read that article this morning. Since the people were tested over a period of time after SVR, I would assume (you know how that word breaks down) that all the people who achieved SVR in that study took interferon. I wonder if the results are even better with the new drugs. About 3-4 weeks into treatment, I had a lot of right side pain and the trial did another scan on my gallbladder and surrounding area. My spleen, which was swollen in the scan before treatment, had already returned to normal and my liver was a little smaller. Both scans were done at same place so they could compare scans. I am curious to see what my 6 month EOT scan shows. I plan to do the scan for HCC every six month as suggested. I understand that FibroScan is available at one hospital in Dallas Texas.
It does us all hope that the ravages of Hep C can be lessened as time goes by.
Thanks for bringing the article to this forum.
SuziQ
Hello All
Thought this article on SVR impact on cirrhosis was encouraging.
This is a excerpt from the article
The percentage with regression of cirrhosis
Of these 137 patients who achieved an SVR, 73 (53%) patients had regression of cirrhosis.
Conclusions;
Our results suggest that the majority of patients with cirrhosis who achieve a SVR develop cirrhosis regression. Time between biopsies appears to be an important determinant of the likelihood of cirrhosis regression.
Here is the link http://hepatitiscnewdrugs.blogspot.com/2014/04/impact-of-svr-on-liver-fibrosis-and.html
matt