Stopping at week 36

[Tekelcat]

Hi, I can't do it any more. 24 weeks of Pegasys and Ribavirin and Gilead GS5885 and Gilead 9451. Didn't UND until week 6 which according to the trial protocols means I must continue Pegasys and Ribavirin for another 24 weeks. Now at Week 36. Still UND, but have spent the last two weeks vomiting and nauseous all the time. I can't go to work, can't do my research and write my book and the sx have been getting worse. Tried Maxolon and Zofran. No effect and just made me really sleepy or gave me blinding headaches. last night at 2 am I retching blood into the toilet and at that point I decided, enough. No more. I'm out. maybe with UND since W6, the TT allele, and the Gilead drugs, I'll stay UND, but if not, that's. Just the way life goes. I don't have serious fibrosis and I need now to get healthy again, get back to my career. thoughts?

[Ironpony]

If you are throwing up blood please go to a hospital!

I understand you are feeling terrible and it has been a long time on what sounds like a harsh treatment. I get it...I have been there.

When I was feeling this way some very wise people said "Do NOT stop"

and I didn't...and before I knew it, I was finishing tx....when I should have and I am so glad they told me, so I will tell you....after all this time...please reconsider.  Go ask for MORE help to treat your side effects...there is always more stuff to atleast try.

You are almost there and will be giving youself the best chance to get rid of this virus.

You have put so much hard work in this, just please before you decide to quit go back and remember why you started tx. Don't let these side effects take your passion to kill the virus away.

I hope you feel better

Best wishes,
Laura

[willbb]

Good post IP

You have been given some great advice by Ironpony.
Yes you need to get these side effects you are experiencing under control.There are other medications beside zofran for nausea .

With only 12 weeks left it would be imperative that you do not stop treatment .,especially given the fact you have the TT allele .With that polymorphism type you need to give your self the absolute best shot at this ,,being that is the toughest to treat.

Also you are taking an NS5A and a Protease Inhibitor and the resistance issues on these are currently  unknown and given that, you may not be able to treat again for many years..

For the sake of trying everything you can to get through the next 12 weeks this  is imperative..

Good luck

Will

[Tekelcat]

I mistyped .... I have the CC allele

[willbb]

Well ..my personaln advice  abovel stands .. The CC allele is the best one ,however  "on treatment response" always trumps this marker. In other words If you got an RVR (Und. @Wk. 4) then this would be significant ,however at week 6 it is a different story.

i hope you can work with your treatment team to continue to give your self the best go at this so,that you may be able to put HCV behind you once and for all and not worry about waiting to treat again ,with the hope that your liver damage does not outrace the pharma companies..
I know from personal experince this is not the best position to be in..

Again ..good luck ..I wish you the best...
Will

[Ironpony]

Whether you are CC or TT  it does not change the recommended time for you to treat.

[Idyllic]

If you are throwing up blood. Go To The Hospital ER Now.
Something is wrong!
http://www.symptomfind.com/symptoms/vomiting-blood/


I am so sorry this is happening - I can just imagine how miserable you must be. Obviously the trial people are unable to manage the side effects of the meds that well - still they should know just how you are progressing and that the sx are intolerable.

I am not sure how Zofran is supposed to work but it doesn't stop nausea for me either. I would tolerate the drowsiness if it worked so I can relate to your frustration. Still, there are all kind of other meds you could try if the nausea & vomiting is your primary symptom. I know it is very difficult to think or motivate yourself to do anything when you feel nauseous and like throwing up all the time.

I encourage you to try to find a way around this. It is not just that you are willing to try again if need be later on down the line; it is the possibility of tolerance or resistance issues as Will suggested. Either way I would hate to see you throw all this away and making a decision of this nature when you are in this state of mind.

My flight response would triggered right now too and I would hope someone would talk me off the ledge if I feel like quitting.

I don't know the kind of demands you have for research and writing but if you have any kind of a Plan B that could kick in until you feel better then now is the time to do it.

I support you no matter what however I would really like to see you find a way to solve the side effect issue. I mean there has to be something or some med that will help. It is a challenge to be sure but there has to be a solution.

Demand the trial people fix this for you!
Hang in there and stay strong♫

[Ironpony]

You are fast

[Steph_MHModerator]

If you are vomiting blood, we urge you to go to the hospital immediately.  Our site does not substitute for immediate care from a professional medical provider.

We wish you the best and please keep us updated on your health.

Stephanie
MH_Moderator

[Tekelcat]

I've tried everything and so has my medical team. Reducing Ribavirin made no difference. I vomit blood because all the vomiting over the past two weeks has put so much stress on the blood supply in my esophagus, they explode easily now. You talk about imperatives to continue treatment. Fair enough. There are also imperatives to live in a way that allows me to take care of my responsibilities and to take some enjoyment from the moment rather than always deferring life until I reach SVR. At the moment, however, and I quote my hepatologist who is also a virologist, the tx is slowly killing you. He doesn't think it's such a good idea to continue. Nonetheless, I have instructed him to come up with some alternatives to cessation. If he does and if they sound doable, I will do. As for the questions surrounding future tx. I will not do interferon and Ribavirin protocol again. Not happening. Nobody knows if the GS trial drugs I took militate using other pi drugs in the future, and GS7977 (is that the right Gilead drug, the one they got from Pharmasett?) is reputed to not have that limitation. Nobody knows either how UND, SVR and futility rules play out with the particular combination of med I took. And in the end, I am nearly 62 years old. I have had an incredible, wonderful, exciting life, and thus face its end without a single regret or note of rue. This tx has already been extraordinarily difficult and I'm just not too interested in living through 3 more months of even more difficulty, not being able to pay my bills, using up my savings, disappointing my students and my editor, and being quite unable to do jack **** Its a judgement call, and not an easy one.

[willbb]

You should always follow the advice of a knowledgeable Hepa.

Good luck
Will

[Tekelcat]

..... And, as always, you've all been lovely to me

[orphanedhawk]

If your hepatologist says to quit, then quit it is.
Mine does whatever he can to keep patients on tx. If he told me to quit, I'd do it.
You may stay undetected. And the treatment could have helped your liver.

Do let us know how it all turns out.

Wishing you the best of luck
OH

[Idyllic]

Wow your Hepa said the treatment is slowly killing you? How slow does he mean? What does he mean? Does he mean long-term effects or how you are feeling right now? I sure wish there were a way you could stick with treatment but I suppose you might very well remain UND. I hope you do after all this.

You still could have an incredible exciting life. I am sorry things have gotten so dire. You must have been really making yourself stick with this for some time now.

I am glad you can work through the reasons why you decide to stop with us as it helps you think through things. No one around me really understands HCV or the meds so I would be making a decision like this in a vacuum if it weren't for the people here on the forum. I hope you feel that way too ~ supported I mean.

I know just what you mean about Peg &/or Riba. I think a lot of us do. I hope you continue to post and let us know how this works out and how you are healing.

[rivll]

You have little to no fibrosis, your Hepatologist says to quit, there are easier and better drugs coming.
You are not naive and I trust that you will make the right decision for yourself.
No matter what, we are with you.

[Tekelcat]

What he means is that the sx are tearing up my body so much that he's worried something really major will happen. For example, the constant dry retching which must be witnessed to be believed is placing a lot of strain on both my heart and on the blood supply to my esophagus. The Pegasys has damaged the bones in my pelvis and my upper chest.They have become very frail, as though osteoporosis has set in, except it has not.

I hasten to add through, that my medical team agrees that I am having one of the worst experiences with sx they've ever seen. As you know, most people have it a bit easier than I have.

Anyway, I've missed one full dose of Ribavirin and the nausea and vomiting has already eased off a bit. I'm waiting for the hepa to call and chat about possible solutions other than ending treatment completely.

[kmatucson]

Little to no fibrosis?  Hepatologist tells you to quit?  I would follow his advice..  The all orals sound promising and it sounds like you have time to wait for something better.  I wish you all the best and hoping for a quick recovery..  Who knows.. you might stay UND.. Sending positive thoughts your way!!

[his3707]

cant you just take less dosage of the riba and peg?  at this point that should be ok shouldnt it? Anyboby?

[Tekelcat]

That's what I thought. We lowered the Ribavirin from 600 BD to 400 BD, but without relief. I'm waiting to hear if we can lower further and also decrease Peg.

[JDB1964]

It sounds to me as if you have already treated too long.Best wishes to you on your recovery from these meds and Svr is still possible for you. Why not? Proctocol is simply an average that worked! So sucess IS possible on the lower end of the curve!

[nygirl7]

I spent the day retching yesterday with a stomach flu for one day and night so hard I fell down a few times. I cannot imagine doing that for weeks on end. I wish you the best telecat........sometimes you know best. I have problems with my esophagus too - it's no fun at all.

[orphanedhawk]

I can't help but wonder if you are actually allergic to the meds.
If you have little to no fibrosis, stop !
The only reason I would do tx is to keep my liver healthy.

[Tekelcat]

Update: missed 3 doses of Ribavirin with hepa's approval. Nausea and vomiting eased almost immediately but not entirely gone.

FYI: Hepa seems to think that we can get caught in a loop with the Riba and nausea. He tells me that if we forget to take it with food more than a couple of times in a row, the nausea and vomiting can start and this begins a loop: nausea and vomiting stop us from eating so the Riba is even more damaging, so we eat even less, Riba gets even harsher, more vomit less eating, more Riba issues. This could be what happened to me as I was out of town for a long weekend 2 weeks ago and it was hard to time the Riba with proper food.

So missing three doses yesterday and early today seems to have broken the loop. I'm now back on a reduced Riba dose.  Still nausea but manageable and no vomiting. Decent food stays down!!!! Yay! Had my 37th Pegasys injection today too, took reduced Riba, ate a decent meal and feel, well, not okay, but kinda like I felt before the nausea started.

I am so very grateful to you all for your good advice, your kindness and patience during a very scary time for me.

[willbb]

Good luck going forward...

Will

[Ironpony]

this makes me smile. So glad you are feeling better too.

best wishes
Laura