Hepatitis C Community
Treatment failed - now what?
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Treatment failed - now what?

Hi all - yes, I am back!  My 12 week post tx results were not good - the Dragon is back!  They say have sonograms every 6 month on my cirrhotic liver to catch any cancer as soon as it might start, try to stay healthy and maybe in 2 to 3 years they will have a new product for 1b.  I cannot even imagine going through all that hell again... 6 months seemed like forever with every side effect and lots of hospital visits for transfusions.  QUESTION - how do we know that the drugs did not cause MORE damage to the liver/system since it did not succeed in killing the virus?  I hope all of you have better results then this 60 year old lady - I guess somebody has to end up in the percentage that fails treatment.
15 Comments Post a Comment
Blank
766573_tn?1365170066
Greetings. I am sorry to hear you did not remain UND. I remember you had a terrible time with Incivek and had to stop early. I'm not sure the extent if at all these meds damage the liver. I do know there are some people who are not good candidates for treatment for various reasons. I have heard time and time again that this treatment "gives our liver a break" and it is "not under attack" while treating but have never actually investigated what that really means.

I hope you are physically better. There are lots of trials with the all orals and they look very promising. Hopefully they will be available soon♥
Take care
Blank
4856858_tn?1365382377
Sorry to hear it Grammy. My doc, who is an expert on livers, said it has been very good to give your liver a break from the hep attacks. Now you will have to see if you can get into a trial or wait for the FDA to approve the new drugs.
Blank
1815939_tn?1377995399
I am very sorry that you relapsed. I know it must be devastating. I recall the rough time you had on treatment. Try to rest and heal as much as possible.

After you recover from treatment, perhaps you can look into a trial with some of the new drugs. Of course, you would want to research it well. You would want to be sure you were not in a placebo arm. Plus, it would be better to be in a Phase 3 trial. Some trials have rescue arms as well. Others on the forum who have more experience with trials may be able to give you more information about the current trials for cirrhotics.

Please keep come here for support and information. We do care.

Best of luck.
Blank
1840891_tn?1383280315
I'm so sorry to hear that you relapsed, that is very hard news for anyone to take, and especially when you've had such a rough time with tx. I know its only a small consolation, but you should try to console yourself a little with knowing that the next set of treatments, once approved, should be interferon-free and with considerably less sx. Hang in there and take good care of yourself - trying to give yourself lots of love in the meantime. Best wishes for your health and wellbeing!
Blank
Avatar_f_tn
Try to find a support group in your area. If there is one, I think that is one of the best things you can do for yourself right now to keep you informed on all the latest treatment option you have now. It also helps to be around people who understand what you are going through. So sorry you relapsed. It will be OK. Hang in there.
Blank
Avatar_f_tn
Hi GrammyA, so sorry to read that you relapsed. My hubby is in the same boat. Failed 3 treatments, last was triple W Incivek. Also Cirrhotic. You will need to see a hepatologist who will probably want to do labs every 6 mo and imaging every 6-12 mo to screen for HCC and to make sure your liver stays compensated for as long as possible. Being seen by a hepatologist will also mean that he/she will notify you of any trials that might be beneficial to you. As said above, you have to check the trials carefully as you would need one that has the highest chance of benefit for you, since you're cirrhotic. The last that I heard, it is still expected that new treatments for difficult to treat G-1s will be a 12 week course of Sofosbuvir, Ribavirin, and Interferon (weekly), but I don't know if that's the best guess for both G-1a's and G-1b's, or just G-1a's. And of course all of this is just speculative and may have changed since the last time my hubby saw his hepatologist. Since we are also on a watchful waiting status, I haven't been keeping up with all of the very latest research. We will see his hepatologist, who is in a research based university liver transplant center, again next month for his 6 mo follow up, and we will hear updates from her then. Someone else may chime in w the latest. We are hopeful for a new treatment as I described maybe by mid-end 2014, or a good trial w the likelihood of success for cirrhotics before then, but it's all speculative. In the meantime, focus on your recovery from triple, see a hepatologist, screen for HCC and signs of decompensation, eat healthy, exercise, and ask a hepatologist before taking any meds or supplements.
Blank
446474_tn?1404424777
I am sorry to hear that current interferon based treatment does not work for you.

Since I have been in the same position as yourself and many others I thought I would add my two cents worth.
I agree with all of Advocates suggestions. Particularly.

* You need to be under the care of a hepatologist and monitored closely.
* Transplant centers are were you can find the best access to clinical trials for cirrhotics.
* You need to avoid anything that can injure your liver more. Some things are obvious, others aren't.
- All meds that you take must be approve by your hepatologist including over-the-counter analgesics.
- No elective invasive procedures. Surgery or anesthesia can cause decompensation or liver failure depending on your individual health status.
- etc. etc. Too many to mention really. But that is all part of care when treated at a liver center.

From what we know now, and depending on future clinical trial data Gilead's HCV therapy in 2014 for genotype 1s will be Sofosbuvir + peg-INF + Ribavirin. The last I saw was that 16 weeks looks like the best treatment duration. Certainly beats 48 weeks.

All orals for genotype 1s will not be available on the market until at least 2015. Persons like yourself should consult with a hepatologist about how they can treat as soon as possible before they decompensate and are no longer able to avoid a liver transplant.

Good luck to you.
Hector
Blank
446474_tn?1404424777
By the way genotype 1b is easier to cure than 1a. So being 1b is an advantage.

I am 1b and was a previous null-responder to peg-INF + Ribavirin with advanced cirrhosis ascites, HE, liver cancer, etc. treating with Gilead's all oral Sofosbuvir + Ribavirin therapy. I became undetectable by week 2 of therapy in September of 2012 and have been undetectable ever since.

There are treatments out there for cirrhotics in clinical trials, even with portal hypertension, that are effective and have minimal side effects. No anemia, platelet count drops, etc.

So the fact is there is more hope then ever for all types of hepatitis C patients.

Stay as healthy as possible, for as long as possible and you will be available to access the new effective treatments. The only way to do that is by having your cirrhosis managed by a hepatologist (liver specialist) who works with cirrhotics on a daily basis. No GI is qualified to manage cirrhosis and its complications. A GI is fine for those with lesser liver disease as treatment is easily with less side effects, their liver disease is completely reversible, and there is no increase risk of developing liver cancer. You do not want to end up like me with end-stage disease and not able to get a life-saving transplant. Not properly managing cirrhosis and can fatal. While none of us think it can happen to us, unfortunately for some us it does.

Take care.
Hector
Blank
Avatar_f_tn
So sorry to hear the news!  Hopefully you gave your liver a break, even though you had an extremely tough time with sx, and can get into a trial or wait for the new drugs.  

"QUESTION - how do we know that the drugs did not cause MORE damage to the liver/system since it did not succeed in killing the virus?"

I think it's a risk we have to take in order to try and beat this virus.  Most of us like yourself had no choice but to try.  As time goes on we will probably get an answer to your question of whether or not the drugs cause more damage.  

Please take care of yourself!

Jules
Blank
446474_tn?1404424777
"QUESTION - how do we know that the drugs did not cause MORE damage to the liver/system since it did not succeed in killing the virus?"

The only patients that need to be concerned about treatment causing more liver damage are patients who have advanced compensated cirrhosis with portal hypertension. Their livers may not be so damaged that they are unable to tolerate the treatment drugs. There is as small risk that the treatment drugs can cause liver decompensation or failure. The hepatologist should have a discussion with the patient about this risk before starting treatment. Many times patient will be evaluated and listed for transplant before starting HCV treatment as a backup plan.

Signs of liver decompensation (ascites, bleeding varices, etc.) or liver failure will make themselves known through blood tests results and physical examines. This is why cirrhotics that treat their hepatitis C should be monitored more closely then patients with lesser liver damage.

Take care.
Hector
Blank
Avatar_f_tn
A great big thanks to all of you!
Blank
Avatar_m_tn
You might want to consider supplements that protect the liver from further damage.  Dr Berkson had good success with a triple antioxidant protocol that uses alpha lipoic acid, milk thistle and selenium.
Blank
Avatar_m_tn

You might want to consider supplements that protect the liver from further damage.  Dr Berkson had good success with a triple antioxidant protocol that uses alpha lipoic acid, milk thistle and selenium.
.

------------------------------------------------

Please copy any clinical research studies ( not articles written by the above) that show proof that supplements protect the liver from damage (fibrosis)

Thx...

Will
Blank
317787_tn?1373214989
Dear Grammy while I am happy to see you back but  so upset for  your news.
It is horrible, I don't know what to say.
I know there are new treatments in trials.
Hector has been UND for 29 weeks.
I am praying for you

My best to you
Dee
Blank
1815939_tn?1377995399
Since supplements were mentioned by the above poster, I will state that I take several supplements and always have. I took them throughout Tx too. I certainly have nothing against supplements, but I just want to mention that, if you do decide to take supplements, be sure to clear them with your Hepatologist. You have cirrhosis so you would want to be sure that anything you take is cleared by your Hepatologist.

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
Avatar_f_tn
Blank
Livelife777
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
Avatar_f_tn
Blank
susan400
FL
Avatar_m_tn
Blank
can-do-man
IN
317787_tn?1373214989
Blank
Dee1956
DC
1815939_tn?1377995399
Blank
pooh55811