Aa
At a loss
Newbie here. Diagnosed with HCV Genotype 1 about six months ago. It would appear that I was infected 40 years ago shortly after birth. Cirrhotic with oesophageal varicies. Have been waiting for months to see the hepatologist and was finally able to see him two weeks ago. Have been doing all of my homework and went in to the meeting hoping to be able to get in on the abbot study, and in a worst case scenario, start triple therapy ASAP as I have been mentally preparing myself for the sx and was ready to jump in.
Dr. advised that the Abbott study would e a non starter as they will not permit cirrhotics in to the study. Fair enough. Doc then dropped the bombshell that he does not suggest triple therapy either as he is of the opinion that, based on the current state of my liver (compensated), that there is a 10% chance hat he treatment would kill me in the first 16 weeks.
His alternative suggestion was to wait to see if any other safer treatment options become available and/or wait for my liver failure to progress to the point of transplant and try to treat post transplant.
I am currently MELD 9 and a MELD score of 15 is required to be put on the transplant list.
Thoughts?
Dr. advised that the Abbott study would e a non starter as they will not permit cirrhotics in to the study. Fair enough. Doc then dropped the bombshell that he does not suggest triple therapy either as he is of the opinion that, based on the current state of my liver (compensated), that there is a 10% chance hat he treatment would kill me in the first 16 weeks.
His alternative suggestion was to wait to see if any other safer treatment options become available and/or wait for my liver failure to progress to the point of transplant and try to treat post transplant.
I am currently MELD 9 and a MELD score of 15 is required to be put on the transplant list.
Thoughts?
You still have time with a MELD score of 9. Remember the MELD score scale is from 6-40. At my transplant center they treat cirrhotics with hepatitis C therapy up to a MELD score of 20. Of course only selective healthy patients would be eligible for treatment at that point.
As someone who has done hep C treatment while cirrhotic in 2008 and failed and is currently treating his hep C I would say to try treatment so at least you know you tried to prevent having a transplant. A transplant is a life changing event. Also you will still have to cure your hepatitis C otherwise it will destroy your new liver over a sort period of years.
But this is just my opinion based what is right for me. You have to find what is the best option for YOU. Only YOU can decide that. No one else.
Meanwhile the most important thing you can do is prevent any further damage to your liver. You want your liver to last as long as possible because better treatment will be available in the next few years that could prevent you from needing a liver transplant.
No alcohol. Any medicines including over-the-counter meds like Ibuprofen, aspirin, vitamins or supplement that you might take; need to be cleared FIRST by your hepatologist. Many commonly used drugs are toxic to the liver and when a person has cirrhosis there effects can be harmful to life-threatening.
As someone who has done hep C treatment while cirrhotic in 2008 and failed and is currently treating his hep C I would say to try treatment so at least you know you tried to prevent having a transplant. A transplant is a life changing event. Also you will still have to cure your hepatitis C otherwise it will destroy your new liver over a sort period of years.
But this is just my opinion based what is right for me. You have to find what is the best option for YOU. Only YOU can decide that. No one else.
Meanwhile the most important thing you can do is prevent any further damage to your liver. You want your liver to last as long as possible because better treatment will be available in the next few years that could prevent you from needing a liver transplant.
No alcohol. Any medicines including over-the-counter meds like Ibuprofen, aspirin, vitamins or supplement that you might take; need to be cleared FIRST by your hepatologist. Many commonly used drugs are toxic to the liver and when a person has cirrhosis there effects can be harmful to life-threatening.
Thanks, LiverLifer. I just wanted to add that the Doctor who treated me, also treats people who are cirrhotic, compensated, and rarely, decompensated.
But she is not a Hepatologist, she is an Internal Medicine Doctor, and also conducts Research Studies. An Interferon Free research trial would be ideal~ good luck
But she is not a Hepatologist, she is an Internal Medicine Doctor, and also conducts Research Studies. An Interferon Free research trial would be ideal~ good luck
Thanks for all of the help. Hector, I have sent you a personal thanks via a private message as well as some additional details.
To all of you who post on here I would also like to thank you all. I have spent many months reading everyone's posts here and can not begin to explain just how valuable of a resource this place has been. I am convinced that countless others have been helped by the information and personal experiences that you have all contributed on these forums - even if these folks have never posted.
Once again, thank you all!
To all of you who post on here I would also like to thank you all. I have spent many months reading everyone's posts here and can not begin to explain just how valuable of a resource this place has been. I am convinced that countless others have been helped by the information and personal experiences that you have all contributed on these forums - even if these folks have never posted.
Once again, thank you all!
Keep reading about cirrhosis and its progressive nature. If you are thinking about a transplant you should educate yourself first as the general public has no idea what a life changing event it is. It will affect your life every day for the rest of your life. Once cirrhosis progresses past a certain point there is no going back. You should understand that. Your life will never be the same.
I wish you the best of luck with your decisions. Discuss all your concerns with your doctor. It is best to develop a good relationship where you both understand each other. The road to liver transplant can be many years from now so it is important to be prepared for a long haul.
Good luck to you!
Hector
I wish you the best of luck with your decisions. Discuss all your concerns with your doctor. It is best to develop a good relationship where you both understand each other. The road to liver transplant can be many years from now so it is important to be prepared for a long haul.
Good luck to you!
Hector
The choices that all early cirrhotics like yourself have is whether to treat their hepatitis C and stop further injury to their livers and perhaps prevent the need for transplantation or a liver transplant. Or do nothing and prepare for the years of progressive illness and then finally a liver transplant.
There is currently a trial for cirrhotics like yourself recruiting although it may be full. These trials are rare and hard to come by. There will only be 50 patients worldwide (it is a phase 2 trial) but if it is successful, there will be a future phase 3 trial that will include hundred of cirrhotics. I would suggest talking to your hepatologist about the trial or similar trials if he knows of any. There are no sites in Canada for this phase 2 trial but the phase 3 trial (if there is one) may have a Canadian location.
http://clinicaltrials.gov/ct2/show/NCT01687257?term=gs-7977&rank=8
GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation
ClinicalTrials.gov Identifier: NCT01687257
Eligibility
Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Criteria
Inclusion Criteria:
Chronic infection with Hepatitis C with HCV RNA > 1000 IU/mL
Subjects with cirrhosis with Child-Pugh score 6 mmHg
Body mass index (BMI) >/= 18 kg/m2
Naïve to all nucleotides/nucleoside treatments for chronic HCV infection
There is currently a trial for cirrhotics like yourself recruiting although it may be full. These trials are rare and hard to come by. There will only be 50 patients worldwide (it is a phase 2 trial) but if it is successful, there will be a future phase 3 trial that will include hundred of cirrhotics. I would suggest talking to your hepatologist about the trial or similar trials if he knows of any. There are no sites in Canada for this phase 2 trial but the phase 3 trial (if there is one) may have a Canadian location.
http://clinicaltrials.gov/ct2/show/NCT01687257?term=gs-7977&rank=8
GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation
ClinicalTrials.gov Identifier: NCT01687257
Eligibility
Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Criteria
Inclusion Criteria:
Chronic infection with Hepatitis C with HCV RNA > 1000 IU/mL
Subjects with cirrhosis with Child-Pugh score 6 mmHg
Body mass index (BMI) >/= 18 kg/m2
Naïve to all nucleotides/nucleoside treatments for chronic HCV infection
This is a hepatologist working at a liver transplant center I assume.
If so you are seeing the right doctor which is a huge step for any cirrhotic.
Your hepatologist is correct, cirrhotics are usually the last to be treated during trials become we are very difficult to treat. So we have a difficult time hoping for a cure during trials. It does happen but usually only in the fiaml trials before the manufacturer applies here in the US to the FDA for the approval to market and sell the drug treatment. (NDA) New Drug Application.
"there is a 10% chance hat he treatment would kill me in the first 16 weeks. "
I think there is a misunderstanding between yourself and your doctor. For all patients with cirrhosis who treat with current interferon based therapies, there is a small, be real, chance of treatment causing further damage to your liver resulting in decompensation or liver failure. This is a risk all cirrhotics take. That is one of the reasons for being seen at a transplant center. In the very rare worse case scenario they would transplant you so you would NOT die. The risk of injuring your liver further is mostly dependent upon how advanced your cirrhosis is and whether you have other medical issues currently that may increase the risk of treatment. So the statement that it will "kill you in 16 weeks" is not what the doctor is saying. I won't go into all the details, but you will be monitored closely. When blood level abnormalities happen, solutions will be offered to you. In the worse case you will have to stop treatment. The problems that cirrhotics normally have with treatment is that they usually experience more side effects and to a more serious degree. Therefore they drop out of treatment because it becomes too difficult over 48 weeks.
If so you are seeing the right doctor which is a huge step for any cirrhotic.
Your hepatologist is correct, cirrhotics are usually the last to be treated during trials become we are very difficult to treat. So we have a difficult time hoping for a cure during trials. It does happen but usually only in the fiaml trials before the manufacturer applies here in the US to the FDA for the approval to market and sell the drug treatment. (NDA) New Drug Application.
"there is a 10% chance hat he treatment would kill me in the first 16 weeks. "
I think there is a misunderstanding between yourself and your doctor. For all patients with cirrhosis who treat with current interferon based therapies, there is a small, be real, chance of treatment causing further damage to your liver resulting in decompensation or liver failure. This is a risk all cirrhotics take. That is one of the reasons for being seen at a transplant center. In the very rare worse case scenario they would transplant you so you would NOT die. The risk of injuring your liver further is mostly dependent upon how advanced your cirrhosis is and whether you have other medical issues currently that may increase the risk of treatment. So the statement that it will "kill you in 16 weeks" is not what the doctor is saying. I won't go into all the details, but you will be monitored closely. When blood level abnormalities happen, solutions will be offered to you. In the worse case you will have to stop treatment. The problems that cirrhotics normally have with treatment is that they usually experience more side effects and to a more serious degree. Therefore they drop out of treatment because it becomes too difficult over 48 weeks.
Welcome to the forum.
I am not cirrhotic. It would be much better if someone who is more knowledgeable about cirrhosis than I am respond to you question.
We do have cirrhotics who have esophageal varices on the forum. Many are treating successfully. Do you have any other problems other medical problems (heart, autoimmune, etc.) or cirrhosis complications that would make it more difficult for you to treat.
I am bumping you up in the hopes that someone who is very knowledgeable about xirrhosis sees your post and responds.
Best of luck.
I am not cirrhotic. It would be much better if someone who is more knowledgeable about cirrhosis than I am respond to you question.
We do have cirrhotics who have esophageal varices on the forum. Many are treating successfully. Do you have any other problems other medical problems (heart, autoimmune, etc.) or cirrhosis complications that would make it more difficult for you to treat.
I am bumping you up in the hopes that someone who is very knowledgeable about xirrhosis sees your post and responds.
Best of luck.
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