And now, we wait

[hepcandme]

I had a much anticipated consult with my Doc yesterday about what is next for me with Hep C and cirrhosis. A "little" Ascites 3 months ago (though you probably wouldn't notice and not enough to warrant Paracentesis) and Edema that has gone away entirely. 2 months of detox diet, more exercise, no alcohol or Advil. (Most) Blood tests are all close to normal and continue to improve steadily and MELD dropped from 12 to 10. So, the problem is, what to do next? I geared myself up for a Hep C regimen that would include Interferon - hopefully for 12, not 48 weeks but now there are the new drugs that will be out in 9 months or so and new, less intense treatments just on the horizon. My doc says we should wait a few months and do blood work again. Meantime, I am plagued by constant fatigue. Am I just being impatient to have a more concrete plan and timeline? Because of the cirrhosis, I could go from not so sick to Very sick if something were to go wrong at any turn. I know there are people out there who are much sicker than me. I have a consult with another hepatologist next week but no one seems to want to give me what I really want : A LIST -  here are 5 courses of action we could take and here are the pros and cons of each one

[hepcandme]

I did see this and will forward to my doc when he returns on the 6th. Thanks for sending. This is what I am talking about when I rave about how well informed this group is.
I always come to our GI consult with a long list of questions and possibilities but, I dunno, it seems like my doctor is slightly annoyed with a patient who seems so well informed from information that she found on the internet or through her support group. I can't say that he ever has gone into great detail about questions about a test for example (though I have, of course, researched the test extensively) but instead answers with - "looked pretty good. Blood work shows continued improvement." Maybe he doesn't have enough time? I want details and homework too!
In my doc's defense, I have seen him for a consult 3 times. He also performed a colonoscopy and a varices endoscopy on me but there wasn't a lot of conversation going on that day
Wish me luck on his giving me a referral to the liver specialists at UCSF soon!

[hepcat1954]

heocandme,

You asked for possibilities.  Did you see these 2 suggestions?  It's meant as food for thought...

"Have you considered doing off-label Olysio & Sovaldi?  Several people are doing that as both are approved now!

"Ask your doc if you're a good candidate for it.  Be aware, that you should take the new enhanced Genosure test (by Labcorp) to determine if you have the polymorphism Q80K.  It greatly reduces the effectiveness of Olysio as Olysio is a 2nd gen protease inhibitor and susceptible to resistant variants.  Because Sovaldi is a RNA polymerase inhibitor, it has a high barrier to resistance.  

"If you can afford to wait, you might want to wait for the crucial NS5A inhibitors, Daclatasvir or Ledipasvir to take with the Sovaldi. They should be out in 2014.  Also, the FDC (Fixed Dose Combination) of Sovaldi & Ledipasvir (i.e., one pill) has been designated as a FDA "Break Through Therapy" recently.  It should also be out in 2014."

http://orphandruganaut.wordpress.com/2013/08/23/gilead-sciences-receives-19th-fda-breakthrough-therapy-designation/

Good luck,
HepCat
...

[hepcandme]

Thank you
Made me cry but in a good way
I have only been at this for 3 months and I can't begin to express how thankful I am that I found this group. The courage and optimism I find here is just remarkable given the challenges that all of you face every day. It also is reassuring to know that these feelings that I have of despair and longing for an easier path are shared by others.
I do have a great support group of family and friends but, as I said, they don't really want to know the details. Thanks everyone for sharing all the sordid details! And thank you for being there for me

[Advocate1955]

I think everyone living with Hep C and Cirrhosis, especially advanced Cirrhosis, has these feelings.  It's a daily struggle to be optimistic when you feel fatigued and sick, and your future in uncertain.  I think that if I were you, I would ask for the referral the the hepatologist, and then just follow the advice the hepatologist gives you.  He/she is the best equipped to help you take care of your liver.  I'm not sure at what MELD score they are transplanting in California, probably pretty high.  In Washington, they are transplanting at about MELD 16.  That makes me think that at MELD 10, you are doing pretty well.  At this point, it seems as though you have a balancing act between treating your Hep C as soon as you can safely do so (without decompensating your liver further) and keeping your liver functioning as well as it can, until you are sick enough to need a transplant.  There are others on this forum and the Cirrhosis of the Liver forum who are in your situation (mckansas, ejoli, heart_in_the_keyes, bluebird), sick (too sick to take current Hep C treatments), but not sick enough for a transplant.  The sooner you get connected to a hepatologist in the transplant center, the better.  That way when new treatments become available that are safe for your liver, he/she will treat you.  And when you get sicker due to your liver disease, you will already be in the right place to begin the process for being approved for transplant.  It is a long, long process, so being seen by a hepatologist at the transplant center now is the best place for you to be.
Don't be discouraged.  Look at Hector, who has been at a MELD in the mid-30's for a long time and just got his liver transplant 6 weeks ago.  There is always hope, your liver is still functioning, and the blessing is that you are near a transplant center.
Create a support system, whether it be friends, a forum, a formal support group, or family.
Live your life in spite of Hep C and Cirrhosis.
Stay informed.  Knowledge is power.
Advocate1955

[hepcandme]

Thanks for your thoughtful comments Advocate

I go back and forth between thinking I am Really sick and could die soon (being Listed makes it seem even closer to home) and then, maybe I'm not so sick. My GI doc says things like, You are not dying. But then, he says things like, Interferon treatment is not so bad. Sure you can keep working

As appreciative as I am for the support and the Truth I get here from the group, I wish I was not a member of this club. And, as important as I think it is to be informed, I sometimes wonder if spending hours each day researching and worrying about this disease is making it more difficult for me to stay positive. I guess it is something that all of you have faced.

Here's the joke that my son and I share: After realizing in short order when most people ask, How are you? The correct response is Fine, thanks for asking because very few people care to know the sordid details about your horrific disease.

The punch line of the joke is: Well, You look Great! (Always - even from people who know I am sick)

Or, in one instance, when we met with a friend who is part of our hospital insider support network, You Look Great! One would never guess you have advanced liver disease!

Sigh....

[Advocate1955]

Hepcandme, it sounds like your gastroentrologist is doing a good job actually.  Frequently gastroenterologists work together as a team to decide when and if to make a referral to a clinical trial, to a hepatologist, or to be evaluated for a transplant.  That was definitely the case for my husband.  Gastroenterologists who are familiar with Hep C treatments can take care of Hep C patients up to a certain point.  It sounds like your doctor is trying to take care of you, guide you in whether or not to treat your Hep C, whether or not to try to get into a clinical trial, and when to be evaluated for the transplant list.  
1.  He is right in saying that you probably should not treat using Interferon, because it can cause your liver to decompensate further or fail completely.  He is right in saying that you must have been off alcohol and marijuana (and recreational drugs) for at least six months before you can be approved for the transplant list.  I agree with him that it would be best to have gone through the approval process and be approved for a transplant before you try any Interferon based treatment plan, although it would be wisest not to try one, because if your liver fails due to the treatment meds, and you are not already approved for a transplant, you would not be able to receive a transplant, and you could die.
2.  It sounds like he is trying to respect your previous wish to not be considered for a trial, but now that you've expressed a possible interest, he will probably continue to review the trials.  You can also review them yourself at www.clinicaltrial.gov and search for one for which you would be eligible.  My hubby and I have been searching for one for several years, but he has not been eligible because he has Cirrhosis, has previously treated, but is not pre-transplant (not sick enough to be listed).
3.  Your doc is right in saying that as time passes with Cirrhosis, you are likely to feel more and more fatigued.  This has happened to my husband, especially over the past 3 years.  There are currently no medications or trials that he can do to treat his Hep C, and so we wait, and live with the fatigue and other symptoms of Cirrhosis.  There is nothing else we can do, other than make sure he follows doctor's orders for follow up appointments, imaging, and being liver friendly.
4.  He is right in saying stay away from NSAIDS and narcotic pain medications as they can further damage your liver.  You can take Tylenol for pain.

The question is when your gastroenterologist should refer you to a hepatologist.  Since you have Cirrhosis, it would seem appropriate for him to refer you now.  The hepatologist could oversee your care, monitor you for further decompensation and liver cancer, and keep you appraised of any treatment opportunities that become available, but there are none that are Interferon free right now.  The hepatologist could also send you back to the gastroenterologist for the labs, imaging, etc.  If they work closely together, the gastroenterologist can handle most of that, with the hepatologist overseeing until such time as a treatment or a trial becomes available or a transplant is needed, then the hepatologist would be your specialist managing your care.

To be honest, I don't see any errors that your gastroenterologist is making.  It does take some time to get in to see a hepatologist in a transplant center, and it may take a referral from your gastroenterologist.  If you're not comfortable with him, then you should ask for the referral to the hepatologist and let the hepatologist monitor your care from here on out.  Most gastroenterologists are not well enough trained to monitor a patient with decompensated Cirrhosis, so that would be the ideal situation.  But again, I don't see anything wrong with the advice your gastroenterologist has given you.

You need to be on a liver friendly diet, not taking iron, restricting sodium, and monitored for liver cancer and further decompensation, so if you don't like your gastro, ask for a referral to the hepatologist.  That way, if/when your liver decompensates further, you will be in the right place to be evaluated for a transplant, and/or in the right place to participate in a trial.

Advocate1955