Lots of question...Need answers!

Hello All!

I am not sure where to begin...so I'll start at the beginning of my illness(s).

In August 2010... I was a full-time college student (late in life...40 something!) when I discovered breast cancer. During pre-op CT scan doctors discovered that I had portal hypertension and spleenamengally w/varacies. This led to a hepatitis C diagnosis. I'm not sure how long I had hep-C or how I got it , but there it was! I decided to put the treatment on the back burner until I finished cancer treatment. I completed chemo and radiation in June 2011. In July... I revisited the GI doctor to address the Hep-C. He suggested , after all the blood test, 48 weeks of combination therapy. The therapy supposedly is brand new, but does include interferon and ribavivrin?? , plus (2) other drugs. Not sure what they are yet. Based on previous CT scan and current blood work...he was confident that I had cirrhosis of the liver..but I could still be treated. I insisted on having a biopsy so I would have a better idea of my liver condition. I had the biopsy on Sept. 14th. My Dr.'s nurse said it showed "moderate inflamation and scarring"...but I have not discussed these results with him yet! I also have several other medical issues including, fibromyalgia, IBS, RA, (2) previous cancers, lymphedemia and nuerapathy (from the last chemo) and am currently treated for depression. I have so many daily aches and pains I am not sure what is causing what!!! Not that it matters...it is what it is and now I must fight back! So...can anyone give me an idea of what I'm in for? I begin my 48 weeks on the 29th of Sept. Please be as honest as possible.. I do better when I have all the facts...and I am prepared for "round 2"!! I have heard that this treatment will be worse than the cancer treatment...is this true? Oh yeah, can someone tell me what the viral load count means....450,000 was my # in July...not sure what it is now.

R/2,

My partner Mike has Hep C 1a and failed his Interferon/Ribavarin treatement in 2003.

His Hep C and Alcoholism brought him to ESLD in 2010.

They found liver cancer (Heptocellular Carcinoma) during his transplant work up also...so the Liver Disease HAT TRICK!

Some prize!

He finally got a transplant May 1, 2011, without which I don't know that he'd be here to talk about it.

Post transplant, the Hep C, of course, is still in the blood and so it begins gradually to hit on the new liver...yummy...new liver!!!

Mike's Viral Load is currently over 50 million! MILLION. Yup.

So, he will likely need to face a new treatment cycle down the line. His Hepatologiest says not to dispair that the load goes up and down at first after transplant and maybe it isn't as dire as this seems.

His first trip through treatment brought his red and white cell counts so low he had to have injections of Neupogen and Procrit just to keep his numbers up enough to take the meds! His platelets got very very low. He lost a lot of weight. He often had digestive upsets, some vomiting.

And his viral load didn't clear. Eventually, at about 24 weeks, they just stopped poking him with those injections.

He had many of the same symptoms he has had with End Stage Liver Disease...fatigue, cramps, upset stomach, and the crankies REALLY bad. Almost like the Hepatic Encephalopathy he had last year...some rages and some outlandish behaviors. They gave him some antidepressants but he really should have been taking a way higher dosage.

I agree with Connie, talk to them about that before you take the meds.

One of our members has just done a post transplant treatment and took a much reducted protocol of the Interferon and Ribavarin and didn't have so many problems. Maybe he'll pop in and tell you about that.

Maybe when Mike did the treatment they were giving high doses and you shouldn't have so many sides now with the reduced protocol.

I can't believe you ahve moved to a second treatment just after the breast cancer treatment! God bless you! What a burden.

Here's a prayer for your return to better health,

Mama Lama aka Carol

R2, you are a survivor!  Never forget it.  Obviously, the surgeon should have taken your ovaries, also, but what's done is done.  You will beat the hep C, too.  Thanks for the information on the 4-drug treatment.  It sounds like you would be part of a study.  Best of luck!

Hugs,

Connie

Connie,

Thanks for the encouraging words...much appreciated!!

God Bless,

R/2