Personal Update!

I spent yesterday and today at Mayo to have blood work, an MRI of my abdomen with Gadolinium, and a follow-up visit with my hepatologist.   Happily, there is no sign of cancer (a little over 4 years now since my surgery for liver cancer) and my blood work was stable (for me.)  The only symptom I really have is ever-increasing fatigue.

I'm looking forward to starting the new triple drug HCV therapy when it becomes available sometime next year!  Bring it on, I say!  I'm tired of being tired.

Hugs,

Connie

That's great, Connie! Did they find somebody good to find a vein? I know that's been a sore spot (no pun intended) for you. It's good to here good news in here. Be well. **David**

David, I e-mailed you, but it took 2 members of the PIC team to get a vein...3 different tries...under imaging.

Thanks, everyone!

Hugs,

Connie

:)

Mer, unfortunately the new treatment still includes interferon and ribavirin.  I had been treated for a short time when I was first diagnosed with hep C in '93.  At that time, the only treatment was interferon alone.  I tried 2 separate trials of it, about 6 mos. apart, but each one lasted less than 8 wks.  My white count plummeted so low both times that I was taken off treatment.  I have therefore been reluctant to again try anything with interferon, but with this shorter treatment time I'm hoping I will be able to handle it.  My doctor also said they have meds now to deal with various side effects--although I would think that psychosis would contraindicate interferon in your husband's case.  (I had the same thing happen decades ago with Prednisone and don't do well on steroids of any kind.)

Hugs,

Connie

Dany, I hope FDA approval will come quickly and not be delayed needlessly.  Please let us know of anything you hear through your friend at Vertex!

Thanks and hugs,

Connie

It can be tough to find veins sometimes. When I was 18 they couldn't get me anywhere one time so they had to put an IV on my hand. That hurt like a #($&*

Hi Everyone,

           I will second that Connie. I am sick and tired of being sick and tired and just feeling unhealthy. I saw my hepatologist this past Thursday, 06/17/10 and told him a few days before, I cut the meds in half and within a couple of days gained 3 pounds of fluid or water weight. Thursday, the day of the follow-up I went back to 80 mg of lasix and 200 mg of Spironolactone. Already lost a pound in a half since then, so I need to be on this dose daily or I will gain water weight fast. I told him the meds make me sluggish and in the sun for a little while, forget it. I felt sick for 2 days after going for a walk for a half hour 2 days ago. It was in the 90's. I fall asleep in the morning sitting in front of the computer after sleeping 8 hours. I can lay down and nap anytime of the day and sleep. I try not to, because I do not want to sleep my life away. Sometimes it is mandatory, like the last 2 days just to feel better. I guess seeing my doctor was a reality check. He said I am doing alot better and I agree, but cannot start the new drug until after the 1st of the year. He also said that he would prefer that I had no fluid in my stomach and no edema in my legs, ankles and feet. The cocktail does not work as well he says. I am doing a lot better than a month ago as far as the fluid, but I still have some fluid retention. Enough to make my stomach distended and noticeable as well as the edema in my legs. I am not sure what he means by that. I understand I have to wait like everyone else. Then he said continue the same old; continue taking your medication; continue water restriction and low sodium diet, do not exert yourself and plenty of rest. He scheduled a M.R.I. for July and to see him in 3 months for follow-up. He also said there was nothing much I can do about the wasting syndrome of my upper body. It just comes with the cirrhosis. Oh, yeah, he also confirmed that I have End Stage Liver disease after receiving my biopsy slides from Beverly hospital. I sort of new that anyway. I did not get any bad news, but did not get any good news either. I,m not sure, it might be the Spironolactone. The more I take it the more tired I feel. My doc said it is the Quinnalon, quinine for the cramps, but I stopped that for 3 days and I still felt sluggish and tired. I felt some cramping in my feet and toes last night, so I am back taking my daily dose.  I hope my liver is too far gone to take this new drug they have. HOPE, hey at least I got that for now. You are not alone. Thanks. BostonMike.

Mike and I have spoken about these things before as my symptoms were almost identical a year ago.
I had been drinking over a half gallon a day, but with my legs "blowing up," was told to cut down to a litre a day. However, I had to stay in bed most of the time, with my legs elevated. It helped somewhat. I reached a point, where I learned to sleep with a couple of pillows under my legs, otherwise they'd become incredibly painful. Even an hour on my feet was agony or a couple hours when they weren't elevated. The trick is to not become dehydrated, yet prevent bloating. **David**

 Thanks, Allie.