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Tracy's treatment

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Posted 3/28/2014 1:23 PM (GMT 0)
I may be a Moderator at the moment. But I too find this forum a lifeline. No one knows what liver disease is all about but the patients and their lived ones.

Hugs
Carol
Posted 3/28/2014 6:00 PM (GMT 0)
Second that ML!
As far as heartburn, I did get it really bad one time earlier on in this treatment. Zantac basically killed it the first day, but I took another the second day just to be safe :) It hasn't come up again, but that really did the trick for it!
I told my Dr about it and he was ok with it.
Posted 3/29/2014 2:09 PM (GMT 0)
BIOPSY RESULTS PRE-Rx

=== FINAL REPORT =======================================================

Reported: 03/21/2014 13:37:05:09


A. RIGHT LIVER LOBE BX:

Chronic hepatitis with minimal inflammatory activity (grade 1) composed
mostly of lymphocytes, few plasma cells and few histiocytes.

Ballooning hepatocytes, glycogenated nuclei and mild steatosis.

Bile ducts are preserved.

Trichrome stain shows portal and pericellular fibrosis (stage 1).

B. LEFT LIVER LOBE BX:

Chronic hepatitis with mild inflammatory activity (grade 2) composed mostly
of lymphocytes, few plasma cells and few histiocytes

Ballooning hepatocytes, glycogenated nuclei and mild steatosis.

Bile ducts are preserved.

Trichrome stain shows portal fibrosis (stage 1).
Posted 3/29/2014 2:13 PM (GMT 0)
DAY 7, no complaints. Zantac took care of the heartburn. Hope the new starters first week went o.k. Hope steffie's not having any more panic attacks!
Posted 3/29/2014 2:20 PM (GMT 0)
The biopsy is pretty good. You should do really well after treatment...you caught this before the bad stuff started. Or I hope you did. Of course a healthy lifestyle will be required! That is going to be the next hard part.
Posted 3/29/2014 2:23 PM (GMT 0)
The main reason my liver looks so good after 32 years HCV is that I quit drinking and smoking a long time ago. Now I'm just overweight!
Posted 3/29/2014 2:35 PM (GMT 0)
Are they giving you a hard time about it? Or encouaging you to change that?

If I needed a liver I am sure my wt would be an issue. It is hard to fix wt. Especially if you don't feel well.

I am sure quitting drinking and smoking has truly kept the damage at bay.

Mike continued to drink until he was nearly dead. His MELD was 24 when he quit. His urinecwas coke colored and he was HE addled. He was in the hospital and septic and finally got the message that he was killing himself. Sob since 9/27/10. He wa sober 7 months when transplanted. Post TP his Hep is messing him up again. Hopefully these new trtreatments work!!!!
Posted 3/29/2014 5:04 PM (GMT 0)
Your biopsy is very identical to mine. I have mild portal fibrosis Stage 1/Minimal inflammation activity Grade 1.

I drank very heavily the whole time I've had this virus and never even knew it. All the hepa and gastro docs I've seen since being diagnosed with HCV said I am extremely lucky to have such minimal liver damage.

Glad you got rid of the heartburn. I'm finding upper GI issues are common with Sov/Riba treatment so we are not alone. I'd much rather have heartburn than nausea like some of the others. My morning Prevacid keeps the fires out, but I still have some mild chest pains and belch alot. First labs for me this morning and at day 8 I feel really good.

GOOD LUCK HAVE A GREAT WEEKEND!!

Posted 3/29/2014 5:55 PM (GMT 0)
Hey you dragon slayers!

Just wanted to mention the nausea and taking Omeprazole (David mentioned this and I learn much from David's experience). Omeprazole is less expensive than the brand name. Since themister was already Stage 4 Grade 2 Cirrhosis when he treated with Riba/Interferon the first time, it was obvious he would eventually need a transplant. Well, unless something else killed him first, that is. First treatment was 9 years ago. FAIL.

And such a disappointment he decided to live until he died and not re-treat. BIG mistake. Treated again 2011-12, and as a 3a it was 24 weeks. He already had gastric bleed history in 2010, and he took Omeprazole daily.

He never had the heartburn, thanks to the Omeprozole... but he was quite nauseous most of the days....worse at the end when Riba is full force in your blood. Treat is like a stomach virus. I made a big pot of home made chicken soup and froze in single serving containers. Ginger Ale, soda crackers, chicken soup saved him. Normally, he could eat eggs and toast, not always. And when the water tastes like metal, he added a bit of powdered Gatorade. Drink a lot of water. Having said this, the sodium is high on all things I posted. But the goal at that time was for him to obtain SVR prior to transplant. I hope that helps. Don't give up you guys. Anything you experience from treatment is nothing like ESLD so please hang in there. I am watching all of you process through this. I can not tell you how thrilled I am to see you good people treating with this new cure. Remarkable stuff!

Oh, and you may get a rash from Riba. Your treatment is short enough that many of the sides will not slam you. Tried a lot of creams for this. Best he found was Triamcinolone Acetonide Cream USP 0.025%. It was RX in the USA, worth every penny

Just your cheerleader for a day, here ;) Big hugs....
Posted 3/29/2014 9:01 PM (GMT 0)
Good afternoon KWLAW. I am doing pretty darn good. The anxiety has subsided and I owe it to my son and his girlfriend for hanging around while I take my evening dose. They help keep my mind occupied with conversations and movies. I'm glad I have you guys checking on me and my friends around me that call and check on me. Blood work Monday and look forward to hearing of the results.
Posted 3/29/2014 10:17 PM (GMT 0)
So Steffiecakes and iplaycarvin, you are getting bloodwork after only one week? I'm not getting mine until 2 weeks of Rx. That will be April 7.

As for my weight, they have not said anything, only that because I am 180 lbs., I need 1200mgs RIBA 2x day.

I substituted food for drugs and booze and cigs. It was the lesser evil. However, with some luck, I will get energy back and up my exercising. That has helped tremendously in the past.
Posted 3/29/2014 10:35 PM (GMT 0)
My doc ordered 3 sets of blood work before I go back to the drs. Mon then April 7th and then skip a week and then one more the week after. Drs appt is already scheduled.
Posted 3/29/2014 10:43 PM (GMT 0)
Can't wait to see the results! GOOD LUCK.
Posted 3/30/2014 8:17 AM (GMT 0)
I love hearing despite the sides how well everyone's treatment seems to be going....it is such a Blessing to be able to have a chance at a normal life! This is day 11 for me and I seem to be having a few different side effects, there are two sides that have been pretty much consistent, one is every morning after my dose I get really bloated but Im afraid to take anything. The other side I believe is from the Ribasphere and that is my skin gets sooo itchy...I just can't scratch enough. At first I was having headaches but I was prescribed tramadol for migraines so I take that. I called the # for I guess the Sovaldi helpline before I took it and she said it wouldn't interfere with the Sovaldi, I sure hope its ok to take. Another thing I've noticed is when I wake up my bones pop and crack and I am really sore. These are side effects I can handle any day...its weird because even though the sides make me feel crummy, I really haven't felt this good in years...it seems my head is more clear , I'm not as forgetful! Anyway...I'm so glad to be able to get to know all of you....have a wonderful day!!!
Posted 3/30/2014 1:42 PM (GMT 0)
jessico, start your own thread: Jessico's Treatment: Sovaldi and Ribasphers. Then let us keep up with YOU in particular...the itches, etc. And we'll want to know your LABS ASAP...at least the viral load!!!!! Good luck, Mama Lama
Posted 3/30/2014 1:51 PM (GMT 0)
Hi Jessico,

My study nurse suggested Culturelle for the bloating. I take one every morning.

Hi All!
Today is the beginning of week two. Overall, not many side effects. The last 2 days I have been waking up with severe back aches. I am prone to them anyway, but they just got worse.
Posted 3/30/2014 1:56 PM (GMT 0)
Tracy, You are doing great...day by day you and the others are marching toward the cure! Keep up the good work! My Mike is rooting for everyone too. More labs tomorrow and we see the Hep Thursday. They need to look at his rashes, but otherwise he is doing well also.

Hugs,
Carol
Posted 3/30/2014 1:58 PM (GMT 0)
Thanks ML. I wish you and Mike good news!
Posted 4/1/2014 2:01 AM (GMT 0)
DAY 9, still having an increase in side effects. Now I have a low grade fever and "fuzzy" eyes (if you know what I mean). Also seem to be crying at movies and songs more. Any one else "hyper-emotional"? And by that I mean more than usual.
Posted 4/1/2014 6:31 PM (GMT 0)
I haven't experienced being over emotional nor I have gotten a fever. Dr just called me and said my blood work is normal. They were probably checking to see if my red blood cells have gone down. I feel great today. No headaches today like I did yesterday. I hope you feel better.
Posted 4/2/2014 12:23 PM (GMT 0)
DAY 11 and my spirits are low. I am definitely experiencing some side effects still. Want to start feeling optimistic again... Steffie - great blood work results!
Posted 4/2/2014 1:43 PM (GMT 0)
Tracy,

Many have side effects, especially from the Riba. Low spirits are hard to excuse away, becasue you are feeling low and maybe even grumpy. BUT ......GIANT BUT.

Those who have experienced full blown liver decompensation who are headed toward or have had transplant know that liver disease can kill you, can make you wish you would just get the dying over with because it can be so awful...on the patient and on their loved ones.

The day of Mike's tranplant he told his nurse on the way to the OR that he didn't really care much either way...he lived or died...because he could not go on with liver failure one more day.

So...hold on to the prize...the cure to Hep C...pray for that every minute you feel crappy.

Oh, and I"m sorry you are feeling this way...it is only a few more weeks.

Hugs,

Mama Lama
Posted 4/3/2014 1:48 AM (GMT 0)
WOW, what a great pep talk ML. Thank you. I really mean it. I am so blessed. I could be much worse or not able to obtain/pay for meds. This too shall pass.
Posted 4/3/2014 10:24 AM (GMT 0)
Sorry you are feeling down. Have you tried listening to music? I found plugging in my favorite CD has a great impact on improving the gloom and doom of being down and depressed. If you start having major depression issues while on treatment, you should tell your Doc ASAP. Hang in there!! Just remember the goal is within reach!! You may have to stretch a little to get there, but it's well worth it.

GOOD LUCK AND HAVE A GREAT DAY!

Posted 4/3/2014 11:54 AM (GMT 0)
Day 12. My mood seems to have lifted. How are my fellow travelers doing today? Steffie? Iplay? ML and Mike?
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