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419309 tn?1326503291

Long-Term Treatment and Quality of Life Survey

Heppers and treaters: calling all opinions.
Many of you have experienced treatment with varying degrees of side effects and success, and I have a hypothetical/philosophical question for everyone who would care to offer their thoughts:  
If you were to get a diagnosis of cirrhosis, and your doctor presented the possibility that full-dose Inf/Riba treatment could possibly delay/prevent decompensation, would you consider treating indefinitely?  
I know many of you have done 72 weeks or longer to avoid further fibrosis... if the stakes were higher, how long would you go?
22 Responses
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Avatar universal
Why dont you start the treatment and go on until you feel you can, if you can see that too many things are going wrong with you, then you can stop, no one will force you to continue, in the meantime you might even cure the virus or maybe they will find some new medication with less side effects
Helpful - 0
Avatar universal
"As long as I've known him, my husband has always found life, in and of itself, an extraordinary quality, finding worth and joy in just about any circumstances, and as a result, he oftentimes takes on and endures much more than he needs to -- perhaps both a blessing and curse common to combat veterans."

Sometimes life is combat, yes? :)  I recall one of the few times I saw a counsellor in my later years after a childhood I've likened to growing up in a concentration camp - due to the nature of it and less to the horrors of it.  Have had suggested more than once to go through PTSD treatment... LOL :)  Rather....I can totally identify with your description of your husband.  I can walk outside.....see a lawn covered with spiderwebs, the sun hitting the dew on them and making them look like so many diamonds scattered across the grass - and my world is suddenly this incredible wonderful place and I feel like I've just been given the most amazing gift...and life is *so good* in that moment.  Doesn't take much to make me happy.  I can just imagine what your smile and your touch does for him, Eureka.  Thinking of you.

Trish
Helpful - 0
419309 tn?1326503291
orleans:  
Thanks for commenting and sharing your point of view.

can-do:  
You did a long-haul treatment, and I respect your viewpoint -- thanks for the good wishes and adding your tally.  When the PIs get approved it may change the course of things, but with HCC he's excluded from all trials and has limited options.

Trish:
Thanks so much for your thoughtfulness and perspective.  The complications presented by decompensation do bring to the forefront concerns about the ability to think clearly and the functions of recognition.  As long as I've known him, my husband has always found life, in and of itself, an extraordinary quality, finding worth and joy in just about any circumstances, and as a result, he oftentimes takes on and endures much more than he needs to -- perhaps both a blessing and curse common to combat veterans.  There's a part of me that never wants him to give up the fight, and then there's a part of me that's afraid he won't stop fighting even when cease-fire is called.   I won't elaborate more at the risk of getting too emotional.  And again, thank you... good words and thoughts of hope and are never feeble.  ~eureka

Keep those opinions coming.
Helpful - 0
Avatar universal
Being cirrhotic and doing 86 weeks my first tx i would have to say NO. QOL issues come into play here.

Looks like ejoli from here who also is pretty far along with cirrhosis and her doctor thinks she still will need a TP has made it to SVR. She was in the Boceprevir trial. Any of these PI's an option for the hubby?

Hoping for the best for you two.

Cando
Helpful - 0
Avatar universal
NO WAY! NO HOW! We all face the certianty of our current bodies dying. (unless we happen to be alive when He returns) There are things worse than death, txing without end would be one of these things for sure, FOR ME. jerry
Helpful - 0
Avatar universal
There are a number of situations where one is forced to adjust the way they live due to health reasons and where the scope of what is truly important gains startling clarity.

That's so difficult to answer when one is not actually facing it so, of course, on a purely hypothetical basis -  it would entirely depend if I was able to adjust my quality of life to be able to find other ways to enjoy life and people in it - and how much it impacted those around me as well.  

As Murariji said - the one thing I'm not willing to lose is my mental faculties.  My ability to survive whatever life throws at me is dependent upon my ability to think clearly and reason and to make the necessary mental adjustments that life brings - if I noticed this was deteriorating to an unacceptable degree for me and I couldn't trust my own thinking anymore, then I'd stop.  Life would cease to exist beyond that point.  I would ask my family to watch for this as well as I might not recognize it. I certainly didn't see my mood changes on treatment to the degree my children did so I would ask my immediate circle to not hesitate to tell me if they saw anything of concern in this regard or others and to talk to me about it.

Beyond that, I can deal with a great many things for the sake of the ones I love and hope is a powerful force for me. However there is a point where my quality of life becomes so compromised that it threatens to extinguish any joy I have to the point where it takes away even the joy of being with the ones I love, it's become so omnipresent. I would want the right to decide enough is enough. That I would rather focus on enjoying and loving the people I care about than have that diverted to just trying to get through another day on an indeterminate basis.

And finally....frankly.....if I noticed that I was compromising quality of life for those around me to a degree beyond which I personally found acceptable....then I would stop.  I would not tell them this is why.  I would just simply tell them it is time to stop.  I would hope they would respect that I am allowed to decide what I personally consider to be a tolerable level on the whole and that simply saying I have had enough for various reasons would be sufficient - and I would make a pact that I would not say it unless I was truly done.  I would want this to be respected, would give my loved ones the chance to say their piece as I may find that last bit of dig-deep if it exists - but the decision truly and finally rests with me.  

I have always admired your grace under the most excruciating of circumstances, Eureka.  Love like that between you and your husband makes me feel better about my world that such love exists.  Always, always keeping good thoughts for both of you.  Rather feeble but it's all I have.

Trish
Helpful - 0
419309 tn?1326503291
Thanks to all who responded.  I should clarify that I am aware that maintenance therapy is not considered useful for active hep c -- hence this is a strictly hypothetical survey regarding people's individual views on tolerating treatment vs accepting end-stage liver disease.

So far:
11 No's
4  Yes and Maybes

It's been a tough question for me and am hoping for many responses, from all perspectives.  The reason I posed the question is that my husband who has HCC is an usual situation.  He has been on treatment for 115 weeks because he has stayed mostly undetected on treatment.  It hasn't been easy, life has changed a lot, but it's tolerable, compared to the possible discomforts that come along with decompensation.  

One of the rationales in this long-term tx is that if he can get a liver transplant, being undetectable may contribute to SVR with a new liver.  So you see, what he has of time now with his own liver he can choose to stay on treatment in hopes of not having to treat after if he gets a transplant, weighted against getting off treatment and the risk of not only relapse but having very low chances of SVR if he gets a transplant (which is not a given, either).  

I don't know if that explanation clarifies the nature of the question, but I do appreciate all your comments and welcome more.  ~eureka
Helpful - 0
545538 tn?1295992017
I'm trying not to have a knee jerk reaction to this question. Seeing my ex husband in the process of dying from end stage liver cancer makes me lean towards yes...anything is better than that. On the other hand I just don't know if I could do it forever. Maybe if I didn't have to work. Maybe if I upped the anti depressant dosage I had been taking. Maybe if I didn't mind being bald, having uncontrollable rages, having to smoke pot just to get any appetite, crying at the dop of a hat, etc. etc. etc. That is a tough question.
Helpful - 0
475300 tn?1312423126
no way here either
Helpful - 0
408795 tn?1324935675
No way Jose, or in this case, no way Josie!! lol      
Helpful - 0
179856 tn?1333547362
Treated for 72 but certainly wouldn't treat indefinitely - they have said that maintenance therapy does not work but perhaps if it were something like that a low dose interferon type deal that didn't cause tremendous sides I would probably do that if I HAD to to avoid losing my liver.

But I'm a wierdo single mom who really wouldn't have any choice, somebody has to buy these two kids all their fun cell phones etc.  ;)

Helpful - 0
Avatar universal
Hi Eureka,
You already know that Joe could in no way tolerate unending TX because his SX are too severe but I just wanted to be in your survey too, because I like you. :>)
Ev
Helpful - 0
1491755 tn?1333201362
Week 23 of 24 starts today.  I'm not sure what I would do to be honest.  I'd rather be alive on Tx than dead.  Somedays are terrible, some days are not soooo bad, but definetly not normal.
Helpful - 0
1477908 tn?1349567710
I don't know how I would feel on maintenance dosing since my tx was enhanced for the 72 week duration because of my Stage 4 status. But coming out of the tunnel on the other end now, no, never would I do it indefinitely. My QOL was pretty abysmal towards the end of 72 weeks and I know now that I could not settle for mere existence. Like meakea says when there is an end point, you have a focus - without one, nope, not me.
Helpful - 0
Avatar universal
No, I would not take those meds indefinitely.  It was mental and physical torture that I was able to put up with for 48 weeks because I knew there was an end point and with the hope that I would feel "great" afterwards...like focusing on the light at the end of the tunnel.  An indefinite course would take away the light and I couldn't do it.
Helpful - 0
148588 tn?1465778809
My body seems to tolerate IFN pretty well and my bood values stayed close to normal, so a maintenance dose would probably be doable. Now, if I could get Michael Jackson's doc to write 'script for the psych sides ......
Helpful - 0
206807 tn?1331936184
No
Helpful - 0
1523804 tn?1316560909
I would never treat indefinitely. I doubt I could complete more than another 24 weeks. When I came to this site and discovered that some people have treated for 72 weeks, I was truly stunned. The physical sx were tolerable even if unpleasant, and I could probably find a way to live like that indefinitely,but the change to my emotions and view of life would make such a life useless. There was no real joy, no real feelings for others or myself, no interest in anything except finishing the course and putting it behind me. I am willing to take on and adapt to physical difficulties and challenges, but  a chemical that eats away at my will and ability to live and interact with others is out of my league.
Helpful - 0
Avatar universal
I did 9 wks of tx and stopped b/c I was going blind (retanitis-riba), some do not re-gain their vision. Since,  I have fatique, brain fog, depression. I have developed fibromyalgia(attacks nervous system) in my connective tissues throughtout my body (deterioating tendons, ligaments,cartralidge)arthritis,joint pain,degenerative spine,muskeletal pain, muscle pain,cervical bone spur.and cryglobulimnia(rare blood disorder and  alot of meds to treat these conditions are hard on the liver..make it go faster or the kidneys...l could not do stadard tx again but everyone is different and responds to medication differently re: chemically& genetic differences. I am geno1A, I am only 51. I wait in hopes of a new n improved less invasive tx, there will be a 100 % cure all eventually, if not! we pave the way for others to follow. Life style is a big key factor in lasting! Blessings n Good luck!
Helpful - 0
Avatar universal
I couldn't do it.  I only did 24 weeks and don't know how that will turn out yet.  If I have to I will do it again, but that firm end date was the only thing that kept me going.  
Carol
Helpful - 0
Avatar universal
Indefinitely?  No, I wouldn't do that.  For me, it compromised the quality of my life. The fatigue and mental anguish treatment caused (for me) needed to end.  Being off inf & riba is like night and day. I would opt for transplant if the time came or take a 6 month break from SOC when the PI's are closer to market and treat then.

I can't cite the studies right now but I know most no longer advise maintenance therapy.

Trin
Helpful - 0
901131 tn?1293744553
I think that would depend on how well you were to tolerate and how bad the sides are.Personally probably not.
Helpful - 0
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