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Talked to the doc today about the new treatment

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Posted 9/16/2011 2:27 AM (GMT 0)
Hello, all!!

We saw the hepatologist today for hubby. Good news, the biopsies from the colonoscopy came back within the normal range. She did say the polyps they removed are the kind that have a tendency to become cancerous, so glad they got those out of there!

While we were in her office, I did ask her if he would be able to take the new treatments and she said that absolutely not because of his issues with interfuron, because the new treatments still include the interfuron.

However, there is a treatment (and I am sorry that I cannot remember the drug cocktail it will involve) that is in clinical trials right now that does NOT have interfuron. Since they are a teaching hospital, and they also participate in alot of clinical studies, she is going to check and see if the can take part in the trial, even with him having cirrhosis. She said the cirrhosis may keep him out of the trial, but we will have to wait and see.

We also had blood work done today, and his GAD MRI. We were told that we should have the results of both of those by tomorrow or Monday, so back in another holding pattern for the moment.

Mer

Posted 9/16/2011 3:37 AM (GMT 0)
Mer, someone on here mentioned that new treatment that doesn't include Interferon. I hope that he can get into the trial!

Thanks for keeping us updated and please let us know the results of his scan and blood work.

Hugs,
Connie
Posted 9/16/2011 3:05 PM (GMT 0)
Mer-I hope that he can get into the trials...
Also good news on the colonoscopy. Thinking about you for good results on the latest bout of tests.

Emma
Posted 9/16/2011 8:05 PM (GMT 0)
I wish they could find a new cocktail for us who have cirrhosis. I am still kicking myself in the butt for not finishing the interferon and ribavarin combo 11 years ago. I was asymptomatic at the time to Hep C and stopped it because of neuropathy in my feet and toes. Wish I had a crystal ball and new what was in store for me. What I've been through in the last 2+ years with this disease is a life second to none, but I really would like to get rid of this virus thats slowly eating my liver. I know many people who have Hep C and are still healthy with no symptoms. I used to get high with them. They say that they will take thier chances. I was the same way. Never had a biopsy done until my gall bladder was removed. I turned down the doctors in the past when they suggested a biopsy. I read that only a small per cent end up with cirrhosis from Hep C. I took it for granted that cirrhosis only happens to  other people and through the last 25+ years I had a lot of clean & sober time. There were many relapses, but they did not last to long. I guess everyone's metabolism is different. I just hope the damage can be undone if they do find a new drug to stop the Hep C virus. BostonMike. 
Posted 9/17/2011 1:25 AM (GMT 0)
Well, not such good news. Because he has cirrhosis, that excludes him from the trial. So, basically, since he cannot take any of the treatment due to his issues with the interfuron, and he cannot get into the clinical trial, he will have to just sit and be a ticking time bomb until his liver decides to give out.

His blood work looked "fine". Meaning nothing alarming, and he feels the way he does because the Hep C is just doing what it does best, I guess.MRI, according to hubby, came back fine, too, which is good. So, it's a vicious cycle....his liver is damaged, he has HepC, but cannot take the treatment, and the only viable option for him at this point is transplant, but his MELD is so low, we have to just sit and wait.......

Sorry, it's just so frustrating sometimes. He's sick, he's tired and feels horrible, we have HE issues from time to time, but NOTHING can be done because he's too far down on the list, and we've been this way for years. I know we should count our blessings that he's not sicker, but he's been THIS way for 7 years and there seems to be no end in sight at this point.

So, we sit and wait

Mer

Sorry, just needed to vent a bit.
Posted 9/17/2011 2:19 AM (GMT 0)
Mer what is his meld score? .....my husband seemed the same way a big vicious cycle ...his meld score was 17 ..then 22 just a month ago ..now it has jumped to a 39 and he is so sick but he will get transplant soon ....sometimes we wish for it to get high so it can be resolved but then When it gets this high its scary ...I guess That old saying. Becareful What ya wish for ....so true ...hope all is well
Posted 9/17/2011 8:44 AM (GMT 0)
sorry for your news mer, i hope things will start to look up, whatever way you want things to go.
xxnatasha,xx
Posted 9/17/2011 2:12 PM (GMT 0)
Thanks, I was just really hoping he could have at least gotten in the trial and gotten a handle on the HepC. Because, it's like the hepatologist said, once he's transplanted, we will still have the HepC to deal with, jut not with a damaged liver. Right now he has cirrhosis, and the HepC is still hanging out there. His MELD is only at 8 right now. But, he still cannot work, etc....that's the frustrating thing about this. He feels HORRIBLE, but there is absolutely nothing that can be done.

Mer
Posted 9/17/2011 2:13 PM (GMT 0)
Blonde, I have been following your posts about your hubby. I hope things are starting to turn around for him. Yes, it is scary when something like that happens! I hope you are getting to take some time for yourself

Mer
Posted 9/17/2011 5:09 PM (GMT 0)
http://www.hivandhepatitis.com/2011_conference/easl2011/docs/0412_2010_a.html
Posted 9/17/2011 5:54 PM (GMT 0)
Thanks for the link, Carol. I wonder how long it will be before this new treatment will become readily available. I didn't see anything about whether cirrhosis patients can take it, but most everyone--by the time they are diagnosed with hep C--also has cirrhosis...or will, in time.

Hugs,
Connie
Posted 9/17/2011 6:55 PM (GMT 0)
Or when they will do studies on those with chronic Hep C POST transplant???

I don't think anyone will be able to convince Mike to do an Interferon based treatment...though maybe those guys at Miami know some magic words.

With his Hep C back so soon and so strong, I don't know what is going to happen.

Have a nice weekend folks.

Carol
Posted 9/17/2011 7:37 PM (GMT 0)

Carol, is Mike still sleeping a lot or very tired?  That's usually my clue that my viral load is climbing--which makes me think my tumor is growing again.  But I guess because my AFP is down significantly, they don't feel concerned about it and therefore won't scan until mid-Oct.

I hope they will be able to come up with some magic words, or a different treatment for him.

Hugs,

Connie

Posted 9/17/2011 8:01 PM (GMT 0)

 Mer,

We understand your frustration.  My husband just talked to the doctor the 6th of Sept about the new treatment and he was told No because of his encephalopathy problem.  He was told the treatment would make it worse and that the treatment itself could put his health in jeopardy.(as in worse than it already is)  My husband is also home and doesn't feel good most of the time and his meld score is 10. We are grateful he isn't in the hospital and he is able to be home:)  We will just keep our fingers crossed that another treatment (that works) becomes available at some time in the future.

Hang in there and know you are not alone, it stinks but what can we do?

Take care,

DDMom aka Kathy and Dennis

Posted 9/18/2011 10:33 PM (GMT 0)
turn  Mer, my meld score is about the same a 8 or 9 in June 2011 and my last M.R.I looked good, according to my hepatologist. Also, unable to work and unable to go on the combo because of decompensated cirrhosis. Hep doc says I would not be able to handle the long term effects of interferon, ribavarin and telpevir or whatever other new drug they give you. After 2 years of feeling unhealthy and sick most of the time, your post gives me hope. I will gladly take another 5 years like this without anything else drastically happening to me. I figure in that time maybe they might find an answer to me and your husbands problem. There is HOPE if I can just hang in there. BostonMike.
Posted 9/22/2011 6:00 PM (GMT 0)
confused Hello ALL! I don't mean to sound stupid, but what is a "MELD" score??? I am starting 48 weeks of some "new" treatment...sorry I don't know which drugs yet or I would say...Anyway, I haven't had a chance to discuss my biopsy findings with anyone but the GI docs' nurse. According to her "moderate inflammation and scarring". I was previously diagnosed with spleenamengally w/varacies, but had to wait to address Hep c , liver, etc. until after I dealt with my breast cancer!!! Thus "round 2"!!! Anyway, does a meld score have to do with the liver-disease, the Hep-C , blood work 0r ALL OF THE ABOVE??? While I'm at it...Can anyone tell me , what I can actually expect from interferon/ribavarin treatment?

Post Edited (round2) : 9/22/2011 12:17:31 PM (GMT-6)

Posted 9/22/2011 6:14 PM (GMT 0)

Hi, Round2!  I welcomed you and answered your original post in the thread Seeking Answer Regarding Treatment.  I suggested you start a new thread of your own (hit New Topic instead of Reply.)

MELD = Model for End Stage Liver Disease.  It is a scoring system used by UNOS (United Network of Organ Sharing) to determine who gets a transplant.  The higher the score, the closer one is to a transplant.  They give extra points for liver cancer or other complicating issues.  I am currently a 22 and expect to go to 25 next month.

This is not something you need to worry about right now, as you are not a transplant candidate.  However, if you want to learn your present score (just to see how ill you are), you can calculate it here:

http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older

Get your base score (for example 6), then add 14 points for cancer and that will be your current MELD score.

Hugs,

Connie


Posted 12/2/2011 5:24 PM (GMT 0)
Hi all - I am in the non-Interferon study right now. I will tell you that one requirement was that I had never been treated with Interferon. As I am only in the second week of the study I can't really give you much. I haven't seen the blood scores yet as they go to the Pharmaset labs, and then back to the Dr. at the lead of the study for his approval before going to my file. My next appt. is on the 15th, and I have asked for a copy of my test results from the bloodwork. If there is any problem getting it I will have my local PA draw blood for the testing and send it out for one.
I can tell you this - my psoriasis is in remission in just two weeks, so my immune system is coming down! My thought process has cleared, so I am not as emotionally swayed by the "fog", in fact it is starting to clear.
Posted 12/2/2011 5:36 PM (GMT 0)
Well - I was going to post on my last post from 3 weeks ago - but I can't find it now. I guess I won't.
Posted 12/2/2011 5:43 PM (GMT 0)
PH, you can post here! We want to know how you're doing in the trial!

Hugs,
Connie
Posted 12/3/2011 12:55 AM (GMT 0)
Good to see you again Connie!
So far I have had NO side effects other than a slight queasy tummy if I smell grease cooking. I was told to continue my daily routine in every way as I do the trial. Trial meds run until Feb. 9th. and the 24 week "watch" afterwards begins to see if it morphs. I am anxious to see some results on paper, and I will post it here.
Only drawback is that the one requirement was that I had never been on PI - so this might be a requirement for distribution in the future. Oh yeah - the trial drug is Quantum.
Posted 12/3/2011 5:13 AM (GMT 0)
Thanks for the info, PH. I'm guessing you mean peg-intron (pegylated interferon) by PI. I had interferon only back in '93 and '94 for a short period...so maybe I'd be eligible.

Best of luck with your treatment. We will be anxious to know the results.

Hugs,
Connie
Posted 12/4/2011 12:17 AM (GMT 0)
Yes Connie I did. With the hep c , 1a's, we all know that it will transfer to the new liver - so I am pulling for you as well as for me - I can't think of anyone more deserving than you.
Middle of week 3, and now I think my system has become saturated. I cannot focus my thoughts as well as last week, and I have given up my keys to my wife, as I can not be sure that my driving will be as I think it is. I taste the meds now when I lick my lips, and my body "hot spots" are showing the onset of what appears to be a heat rash - I am thinking that it might be from the sweating out of the meds, and I will increase my showers to two a day. Hopefully this will clear it up. Major heartburn if I don't drink enough water too, otherwise all is well - I will make another 9 weeks standing on my head!
Posted 12/4/2011 1:17 AM (GMT 0)
PH, very smart to give up driving for now! I was going to suggest more water, also. Hang in there!

Hugs,
Connie
Posted 12/4/2011 2:24 AM (GMT 0)
PH,
I'm pleased to hear the treatment is going well. At least well, compared to interferon/ribavirin therapy. Keep posting, no matter what happens. Any information is important to know about. Be well.
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