For those of us with advanced fibrosis and cirrhosis this was very informative for me. Hopeful too.
Sorry, I should have probably posted these all in one post.Here's another hopeful and informative paper. Says these drugs are in phase II and II trials..so that is very close. I apologize if any of this is repetitive if it is just ignore me. If I find myself getting down about having cirrhosis I start looking for positives and I thought I'd share what I find.
Great information on non-invasive testing for fibrosis, and even more interesting info. on future therapies for advanced fibrosis.
This should be of high interest for all of us, and also to the SVR's who still may have substantial damage to the livers, even after obtaining SVR. I have not seen any change in my Fibro-Sure fibrosis testing over three years since ending tx, so I expect to remain at a low stage 3/ high stage 2 level. I would look forward to therapies that could actively reverse the remaining fibrosis, and move me back a stage or two, or three, for that matter!
This remains my continuing emphasis on the forum: developing better treatments for HCV, for fibrosis, for post-tx after effects, and for any possible residual virus issues that may become validated, or a factor in our health. We need medicine and science to continue pushing forward aggressively with better understanding of the disease and its consequences, AND appropriate therapies for all related issues. We have accomplished mountains by having available therapies which will provide SVR, now we need the next generation of therapies for all the above mentioned issues.
I will not be satisfied until this whole thing is treatable for everyone, and the long term implications can be reversed, restoring 100% quality of life to all who have been afflicted.
It can happen. And in time, it will happen. We need to be persistent, and assertive...and not accept less than a full and complete cure.
Thanks again for the great links!
I couldn't agree with all you said in your post more. I too worry about the SVR's with existing damage as well as the rest of us. It is fabulous they (you) cleared the virus but in some that existing damage is still there and needs to be addressed in my view.
I too am very interested in these future remedies and tests for us, advanced liver damage/cirrhosis is the number 3 killer of people aged 40-65 and I find that an alarming statistic for such a young group of people.
I hope your damage has reversed, someone recently mentioned the 5 year window (goofydad I believe)and that one might see some decent histologic improvement by then so hopefully that will happen for many.
I hope you are feeling pretty good and you have a nice weekend.
Here is more about it.
The Liver can regenerate, age may havea negative effect, but perhaps some looking into growth hormone in conjunction with even holistic methods of regeneration is an avenue. Trouble is, anyone close to 40 may not regenerate as well, and research is not intersted in us!
THanks for posting this stuff!
Check out http://tinyurl.com/
There was a story a while back on using one's own stem cells to regenerate the liver. If I find it, I will post.
Very interesting! thanks for sharing it with us.
Here is the paper Couldnt is referring to ( I think)
haha hey thanks for the link, I wondered how you computer heads did that.
What? You dont like my mile long links??
What? You dont like my mile long links??
Actually, it does offer more exercise as I can start you link in the livingroom and finish it in the bedroom :)
Hope this finds you as sympton free as possible this weekend. BTW does Gravlax and smoked salmon qualify as "danger" fish :) Just had some for breakfast.
Read through the stuff very quickly. That said, there are a number of non-invasive initiatives in fibrosis prediction either on the market or in trial. Not sure if this is the most recent one as the original article is from 04 and the follow-up from 05.
My understanding is that the most promising non-evasive marker is the Fibroscan device now in trial in the U.S. for FDA approval. In some of those trials, they are also drawing blood and looking at novel markers such as Hyaluronic acid (hyaluronate), YKL-40 (chondrex) and TIMP-1. You might want to "google" them to find out more. I assume these markers will then be comared against both biopsy and fibroscan score. From studies done in Europe it seems that the best results are Fibroscan combined with certain blood markers.
I had a Fibroscan done mid-treatment and another about 20 weeks post treatment. The first test correlated very closely (if not exactly) with my biopsy that was 2-3 years old, i.e. stage 3. I was also told that there was a 90% chance I did not have cirrhosis. When I looked up my HA (hyaluronic acid) values, they also suggested my risk for cirrhosis was very low. A month ago, my second scan showed me closer to a stage 2 which was gratifying.
Keep in mind, the U.S. data has not been analyzed approved yet and these are just estimations based on European data and not for diagnostic purposes.
I highly recommend that anyone able to travel to one of the Fibroscan sites contact the nearest coordinator. Some have posted the trials are closed but not sure if that's correct. Also keep in mind that if you see one of the trial doctor's privately you may be able to get a scan but not 100% sure on that. Info on the trials and where are at http://www.clinicaltrials.gov/
Just plug in "fibroscan" under "search"
one of the conclusions in one of the studies stated that the results were not as good for determining fibrosis level, but it was effective in determining cirrhosis. I think I have read the studies before, and noticed that, for people like me, in mild stage of damage, they might not be as definitive in assessing the level of damage. These tests might be a good alternative for folks that can't have invasive procedures.
as for the fibroscan, I did not get the impression in my communication with Boston that it is closed, it seemed that i did not fit the inclusion criteria. So, many might not fit the criteria either. Tallblonde qualified because she did not treat for hep c and had a biopsy close to the scan date. I did not qualify because I treated for hep c and was SVR, plus bx was longer than 6 months ago. Hopefully, their trials will be done soon and we can bug the ins co to let us have one.
we aren't supposed to eat any smoked foods!!
(Im serious no smoked foods is on the list!)
ok,try this... have some sushi and gravlax and wash it down with a beer... they cancel each other out!
I bet you wonder what the heck I eat if all the things I mention are not allowed.
Im like one of those air plants that dont need water or dirt to survive.
Speaking of diet, a few weeks ago I pretty much stopped all dairy products including milk, cheese, yogurt, ice cream, etc. Although it's hard to connect the dots, I do seem to be feeling better. A lot of folks are allergic to dairy so worth a try on an experimental basis. I'm giving it about a month. In the meanwhile, I just put beer and sugar in the coffee :)
I likely read a news report on it, but yes, it must have been based on that. It was quite a while ago, and I still can't find the link.
Adult stem cells would seem to be a logical treatment for reversible, the biggest question I guess would be cost.