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Hep C Discussion Forum -> General Discussion -> Help Understanding Hep C and Cirrhosis Advice
Post Info TOPIC: Help Understanding Hep C and Cirrhosis Advice
Glenn831


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RE: Help Understanding Hep C and Cirrhosis Advice
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Thanks Malcom! My mother is trying to gather up all her records and we're seeking a 3rd and 4th opinion.

I finally got in touch with her main doctor's assistant and they said the earliest I could get an appointment with the doctor is mid July. I'm probally better off having me or my brother attend a doctor's visit with my mother. The reason they gave for refusal of treatment is a low blood platelet count. I have to do more research but I'm hoping maybe there is a way to raise her low blood platelet count and have my mother begin treatment if possible.

 

Thanks again for your support.



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mallani


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Glen, I can't understand why a transplant would be considered in a Stage 3-4 patient. I was Stage 3-4 on biopsy in 2000, and only 57yo then. The liver has a lot of reserve, and can function normally if 80% of the liver is lost (eg from surgery, or trauma). Find out the liver enzymes, particularly the ALT, prothrombin time, total bilirubin, and serum albumen. If these are normal your mother does not have endstage liver disease. Regarding the new triple therapy treatments, there are criteria that must be followed, but the chances of a cure may be 80%. Find out why her doctor won't try the new triple therapy.  Best of luck.



-- Edited by mallani on Wednesday 6th of June 2012 07:42:44 AM

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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Glenn831


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Malcom, Thank you very much for your valuable information and explanation of the Hep C treatment.

 

Yes, my mother is 60 years old so you were correct that she was under 65. From talking to her yesterday, she was told she's between stage 3 and stage 4 cirrhosis with between 30-40% liver function. I'll be sure to add the genotype questions to my list and find out if the cirrhosis is compensated or decompensated.

 

In the end, my mother and I just want to make sure we make educated decisions and bring a fight back to the disease. When the doctor's said they wouldn't give her drug treatment it was a big blow to her moral. Even if it's not true, we get the feeling the doctors aren't really treating her and making us just wait for a transplant. I'll still trying to get in touch with the doctors. I tried by email and phone but the best way may be going on a visit as JoAnneh suggested.

Thanks again.



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JoAnneh


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Malcolm, I appreciate the time you took explaining Hep C treatments. I learned a lot from you.
I am on Week 4 w Invicek. I am 53 stage 2 chirrosis.
Thankful for opportunity to beat this disease.
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
mallani


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Hi Glen, I'm 69yo and have had cirrhosis for 10 years. I have had chronic hepC for 35 years, and have had previous treatment in 1998 and 2000. As I relapsed after stopping the interferon and ribavirin, I had decided to wait until better treatment became available. I am still well compensated, and am now too old for a transplant. My liver will probably start to decompensate in 5-10 years. However, if I can clear the virus, I will not suffer any further liver damage, and should be able to lead a normal life. That is why I have started triple therapy, with Victrelis. I am at week 12, and the virus was undetectable by week 8. I will continue treatment for 48 weeks, and hopefully achieve SVR ( Sustained Virological Response ).

Your mother's age is important- if she is being considered for a transplant, I assume she is under 65 years. Also, the degree of cirrhosis is important- is she Grade 4, and does she have compensated cirrhosis ? If she does not have portal hypertension (big spleen, varices) and has a normal prothrombin time (P.T.) , normal albumen etc., she should be able to have triple therapy with Peg. Interferon, Ribavirin and either Victrelis or Incivik. She would need 48 weeks treatment. She would need to be checked thoroughly, as the side effects can be severe, with anaemia, neutrapenia etc. Incivik can cause a nasty rash, and I am happy to be on Victrelis which seems to be less severe in side effects.

The HepC genotype is important- Genotype 1 is hardest to treat.

Hep C can be cured, even in cirrhosis, if you can stand the treatment. A transplant has it's own set of problems.

Good luck. Keep in touch.

Malcolm

Geno 1b, Viral load at start 1.28m, on Victrelis, undetected at 8 weeks



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Glenn831


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JoAnneh wrote:

Glenn, I would want copies Of my mothers medical records.
How did they base their decision on her present condition as in what tests did they use to decide. I suggest going to a doctor visit or get ur mom to sign a form giving you permission to talk to nurse or doctor treating her. Bless of luck, JoAnne

Thank you for your advice, JoAnneh! I greatly appreciate it.

I'll be sure to ask the doctor's for the test results and how they based their decisions. She's actually in between 2 doctor's that have conflicting opinions which adds to more of the confusion.



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JoAnneh


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Glenn, I would want copies Of my mothers medical records.
How did they base their decision on her present condition as in what tests did they use to decide. I suggest going to a doctor visit or get ur mom to sign a form giving you permission to talk to nurse or doctor treating her. Bless of luck, JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Glenn831


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Hello All,

My mother was diagnosed with Hep C and Cirrhosis. I respectfully request your assistance in helping me understand Hep C and Cirrhosis with what I should know and what questions I should be asking the doctors to fully understand my mother's status. 

My mother is really confused with the doctor's terminology (English was her second language) and doesn't fully understand what the doctor's are telling her. I work 6 hours away and I am unable to go with my mother on her doctor's visits. I trying to schedule an appointment with her hepatologist because my mother is unsure of her status.

The information I have been told so far is that my mother has been put on the list for a transplant. My mother has been given phlebotomy treatments for the past 9 months. The doctor has told her that she's not strong enough to receive drug treatment for the Hep C currently.

 

From some minor research, I've compiled the following questions:

 

What's her current MELD score?

Does she require the transplant or is there a possiblity to sustain her current liver function?

How bad is her disease? Is the Cirrhosis Compensated or Decompensated?

What's preventing further treatment of her Hep C?

 

Please let me know if I should be asking anything in addition.

Thank you in advance for your generous advice.



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