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1280753 tn?1367757932

Week 26/48 and hitting the wall at 80

Second round of treatment, relapsed 1 month post TX. I'm at week 26/48 now. UND at 4 weeks. did 12 weeks of Incivek and am on 600 mg of riba (reduced cuz of HGB)  and full dose of INF. doing 1 shot of Procrit a week and my HGB is at 9.8 and seems to be holding. WBC is 2.4,  Lymphocytes Absolute 154, platelets at 73k.

my sides are unbearable, with extreme nausea (doing zofran and prochlorperazine), weekly infections and fevers; 3 days ago it hit 103.4 and is back down now. i was on 1 course or Z pack, prednesone, advair (for asthma) and it helped, but they don't want to do it again. that was before this weekends fever. I called the DR and no go. The vertigo is still killing me, i am on Antivert. I saw an ENT and he prescribed it. a ton of fluid in my ears. taking sudafed and MusinexDM. helps some. they think i am allergic to the riba, so they switched producers and same thing. i lost 25 pounds and i can't eat much. ya i drink the stinkin water; but not enough.

so i am limping along and want to stop now, but i am trying to get to week 36 and throw in the towel. i will have done 3/4 of tx. i know that i am taking a risk but sometimes ya gotta say wtf..(shat the friggg)
I'm thinking if i hit SVR, i'll be a happy dude. if I don't, then the new meds will most likely be out soon after and i will jump on them at the time.

I have to get my life back. i haven't worked or done anything in 6 months. i am willing to take the risk and stop treatment. i can't do the full 48. even if i do, being a previous relapser and at stage 4, my chances of hitting SVR suk. so why prolong the agony. i guess i'm just venting and looking for the holy grail...anyone have it?
ok, dumb plan or does it make sense? i don't see any other options for me. sorry for the rant.
20 Responses
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Avatar universal
I have followed your reports of treatment for awhile now. You are not a whiner, you are not a wimp. I have admired you so much for enduring this hell.
I hope you can make it to 36 weeks uncledude but you do what you have to do. You are of a handful of ppl treating that I believe will take it to the limit for SVR. You know how far you can go.
All the best to you dude,
Riv
Helpful - 0
4670047 tn?1375730401
Well dude what can I say, I feel so bad for you. Hang as long as you can!!   Kitty
Helpful - 0
Avatar universal
Like Riv I have read your previous posts.  You have been through hell and back but only you know how much your body can take.  This tx is brutal!  I was wondering if I could throw you a "hail mary" and revisit the thoughts of quitting another day?  

Jules
Helpful - 0
1840891 tn?1431547793
Wow, you are having one hell of a rough time. Usually when people write about wanting to quit early they haven't given it nearly as much effort as you have, and we can usually tell them to try Zofran or some other helpful drug and stick with it. Your case is a much harder one, as you've already taken advantage of most of the assisting things and you've already done a lot of toughing it out. I hope your body starts to make some degree of peace with the meds and you can continue the tx, but I think you are pretty much beyond all the usual kinds of helpful modifications.

I can think of two suggestions, both in the area of self-healing and both kind of moderate measures. One is that you should try to lose that negative attitude about your SVR chances. You reached UND at 4 weeks, and that is awesome! If you weren't cirrhotic you would have only needed 24 weeks of tx, and even with the cirrhosis that early response gives you a better chance of SVR at whatever length of tx you can manage. The other suggestion is if you aren't already doing it, you might get some benefit from a meditation practice, such as the "Mindfulness Based Stress Reduction" programs being offered now through many hospitals. I've started one recently and am finding it helpful with my chronic pain problems. It might help you with nausea and it might help calm down your body's agitated responses to the meds. Whatever happens, be assured that most of us here will respect how hard you've tried already and will support you in making your own best decision, even as we hope you can go far enough to achieve SVR.
Helpful - 0
1669790 tn?1333662595
Unc, so sorry to hear what you're going through.  It was disappointing to hear you relapsed after the last round and even more disappointing to hear of your current struggles.  As you know some days and weeks are better than others and you will hopefully have a good week to get another week of trt under your belt.  We can encourage you to continue, but only you know how much you can endure.  Your call Unc, but hang on as long as you can.  Wish you the very best outcome in this trt and hope it works out for you this time.
Helpful - 0
Avatar universal
So sorry to read about your Sx. You've done so well so far so you are stronger than you realize. UND at week 4 is a great thing and worth continuing the tx for the svr prize at the end!! I  hope you can find a way to persevere but only you know what your body can handle.
Can you find a way to drink more water? I think it really really helps
Helpful - 0
Avatar universal
Stupid phone!
Also as important as the water is the nutrition you are feeding your body. You must make an effort to eat properly with wholesome nutritious food. Thankfully you have finished with the incivek so you dont have to worry about getting in the 3 x 20 gms fat per day
Please don't give up just yet.
Take it a day at a time - even an hour at a time.
All the best to you and hang in there. You have achieved so much already.
e.
Helpful - 0
2114467 tn?1358210256
Unc, just wishing you the best for now. What a battle?! Tough decision. I blew out a birthday candle today, an early celebration. Looks like you need the wish, so it's yours. Cheers,
C
Helpful - 0
Avatar universal
Unc, try, try, try to give it one more day. Take it one day at a time. I know you already know all of the facts, that w being UND at wk 4, your chances are improved, and that being cirrhotic, makes it critical to continue as long as you can! You can do this! If you relapse, you might not get another shot, so please try to continue unless your doc says you're too ill or tx is damaging your liver... Give it one more day and think about it again. Tomorrow will be a better day.
Helpful - 0
2029713 tn?1373041104
Uncledude, I know you're feeling overwhelmed and you want to quit, but you've gone this far with good results, try to see it through to the end of treatment. I did 48 weeks as well, and I remember that the middle part of treatment was the worst part. I would read about people ending treatment at 24 weeks, and although I was happy for them, it was so discouraging for me to know I still had 24 more weeks to go. I understand the guilt of not feeling well enough to work. I think alot of the negative feelings I was having were from the Interferon...the Interferon really does a number on our spirits! Try to keep going if you can. I'm so glad I didn't quit! I was undetected at the end of treatment, and at 12 weeks post treatment. I'm glad I tackled the problem when I had the chance, even though it was a pain in the *** to go through. We never know what the future may hold for us...You are at stage 4, and there is no time like the present to heal yourself.



Helpful - 0
766573 tn?1365166466
Wow I am really sorry all this is happening. I don't get all this respiratory and sinus stuff though. You must feel miserable. That ear stuff alone can cause nausea . Either way no matter what you decide if it lingers I would see another EMT and ask about other ways to deal with the fluid in your ears. I wish there was a better way to manage these crappy side effects - and handle these drugs.
Like everyone says we aren't you & only you can determine how to proceed. I would want people to tell me to hang in there and that is why I am encouraging you to do so - if possible and your doctors think you can.  I know what you mean about wanting your life back ~ especially since you treated again so soon after relapse.  
I really like what TexSunflwr says. I feel like the world changed while I have been dealing with this disease. You have come so far. Whatever you decide I hope you know you have support.  
Helpful - 0
789911 tn?1368636783
yeah, just take it one day, hour at a time.  Hang in there as long as you can. Sounds like your responding great!  You'll beat it!
Helpful - 0
2111792 tn?1342704627
All you can do is your best and only you know what your best is!!  Hang tough!
Helpful - 0
1280753 tn?1367757932
I want to thank you all for responding. it means so much to me to know that you kind people are with me. I'll give it my best to get to 36 weeks and I'll do another system check at that time. and I will try to eat better, drink more water and work on my attitude....thanks again
Helpful - 0
1669790 tn?1333662595
I think this is a smart approach.  The half way point is an important milestone.  Each additional week is a bonus and if you can get to 36 wks, even better.  Once there, you can do your system check, and see if you can hang in for the remainder, knowing that the finish line is not far away.  This is such a mind game and it helps to break it down into segments to make it seem an easier goal to reach.  Best of luck to you Unc.
Helpful - 0
1747881 tn?1546175878
Hang in there as long as you can unc, I know it has been a long time and I feel for you.

Wishing you all the best
Helpful - 0
Avatar universal
      Oh, that sounds bad. I dreaded getting the infedtions you are describing, during my Tx, and ended up getting one 4 months post Tx, a respiratory thing, that started with a fever. I also used the Advair, and felt like the fact that it was a powder inhaler, and also that it has steroids in it, may actually have prolonged my wheezing.  I kind of wished I had just used the Albuterol rescue inhaler, instead.
    I hope your fever has passed, and you feel a bit better right now. Takin git 24 hours at a time is a good idea. You are doing a great job Uncle-D
Helpful - 0
Avatar universal
Thats great news unc. We are on a journey that changes every day, every hour even. The human spirit is stronger than we know. This forum is fantastic for knowledge and moral support
Helpful - 0
Avatar universal
That's great Unc.
Helpful - 0
1477908 tn?1349567710
Hi Unc, I haven't been around posting for a while, but saw your post and needed to chime in for support. Sounds like a rough go this time around. Know that you CAN call the shots on how much you can endure - only you know that limit. I was a stage 4 cirrhotic like you when I did tx and the last year (this was back when we did 18 months old tx) was brutal. Sometimes I could only look ahead as far as the next day, sometimes only the next hour - at other times the immediate future were so bleak, I had to keep my eyes on the long term goal of getting thru the dang tx. 36 weeks is definitely something to shoot for - and sometimes when you reach that milestone, another couple of weeks is do-able. Use whatever mind-tricks you need to get where you want to be. Life is good on the other side, bud - hang on as long as you can........
Helpful - 0
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