Like xtina asks here in another post, I'm wondering if anyone knows of people stopping triple with Victrelis earlier who svr'ed? I'm in week 24 and have had 9 transfusions til now. I'm having my last VL test on Friday and the results come back about a week later. That means I will be in end of week 25. If still UND I plan to stop. I can't handle the anemia and transfusions any longer. So far I hear so many happy stories about UND/Svr on triple tx, so I feel pretty good about my prognoses.
I know nobody but myself can take this descision..
The only story I've heard of, was one patient treating at the same hospital as I am. He was still detectable week 24 and therefore taken off tx (Victrelis).
Any opinions would be very much appreciated. I have been UND since week 8 and if still UND end of week 24; does it really make a difference if I go htrough the 3 last weeks (2 more shots)?
Puh! Exhausted. Sorry to ask these kind of questions out loud, but I feel this is the only place where I can be really open about inner thoughts concerning tx and sx. Has been a tough journey, this one..
Nine transfusions?? I am sorry to hear you have had to go through this. If I remember correctly(and forgive me if I am mistaken) you were not a candidate for procrit or they did not use it as a modality where you are from.
As far as ceasing all therapy at the 25 week,,that as you say is an individual desicion you would need to make in consultation with your doctors ,however what is the latest HGB reading and when was that done ?.
With your history of "anemia" how long does it hold post transfusion.
In other words,. will it possibly hold for the remaining properly prescribed time?
There is no statistics to give you on the success stopping 3 weeks early,,however I would just mention ,getting an RVR(Und. @week8) your chances of overall success would seem extremely high..
Thanks for your respons, Will. I had my last bt last Wednesday when my hgb was at 8.1. I had my bt before that one, 3 weeks before that. So, the transfusions seem to last for at the most 3 weeks. My hgb has been kept stable in the 8' with these bt's. Being treated in Norway, and having a doctor not wanting to give me epo/procrit because he said it wouldn't help much, this is what I've been doing to be able to continue tx til now.
I could, of course, go for one more transfusion and try to last out the full 28 weeks. But I just don't have the forces any longer. I have my 4 and 6 year old to take care of and now that they are about to start their holidays I must build up some extra energy to be able to give them what they need from me: me being a mother 100% again. This has been a tough ride. I have been really low mentally and physically and blame most of it on the anemia. So so tired..and at the same time, so so happy to finally see the end.
Being und from week 8 and probably also week 24, I am about to take my own descision to quit. I take the full responsability for it but have a good feeling about it; I did all I could to beat the dragon down - if it isn't dead now I don't think it will by me being on tx 3 more weeks.
I will wait for the 24 VL test though...
I am not proud of telling this out loud and I do not get full support for my descision from my husband and my nurse + doctor. But at the same time they say, and I say: it's my descision and my body. I've been through the hardest months in my life. Maybe I'm not as tough as many on here treating for 48 weeks and even more...but I can only be myself - and in my case enough is enough now.
Bovary, try not to beat yourself up over this difficult decision. Your husband and treatment team are giving you encouragement to try to complete tx to give you the best chances for SVR. Will stopping short 3 weeks affect your outcome?? Unfortunately, there's no data to support your decision as Will mentioned. And this is really a numbers game anyway. Sometimes those that cut tx short go on to SVR, while those going through full tx don't.
During tx my Hgb never went below 10, so I can't imagine what you must feel like being in the 8's. And going through 9 transfusion is remarkable. I give you lots of credit for getting this far. All you can do is to give it your very best and if cutting tx short by 3 weeks, then so be it. That's all you can do. Wish you the very best in your decision and best results.
Oh hunny...9 transfusions, how awful!! I keep shooting to 8 myself, but not nearly as quickly as you seem to be. I really feel for you...I know how terrible 8 feels, and what a burden the transfusions are. I'm sorry:(
As for quitting 3 weeks early....you know your body most..If your inner voice says this needs to stop, then I would consider stopping.
Once again, I am so sorry you have to deal with this, and I wish you all of tge success in the world!
After you posted that you have had your last transfusion just last Wed. and that they seem to hold you over for approx. three weeks(which is about normal for trans.) then it would logistically figure to at least hold the HGB. steady till the end of the prescribed time (24Wks.)
I may be wrong ,however I hear in your post that it may not be that the HGB will not hold ,however that you are just at the end emotionally and physically with how you are feeling.
Yes..the desicion is totally yours to make ,however let me just say this .
. You are 90 %finished. If you do happen to relapse( will you be beaten up more by saying to yourself "I wonder what the outcome would have been had I of finished , or be beaten up more by crawling on all fours if need be to the finish line )
I empathize ,and I only wish you the best with what you decide..
Oh my God, I'm always overwhelmed by the support you guys here come up with! I have no words...thank you. I take every single word from you and read them carefully. Your opinions mean the world to me. You are the only one that truly know what tx and sx are about. You make me less lonely. Also when it comes to taking a hard descision. Though it's mine, and I can't get any 100% approval from anyone on this - I feel taken care of, and taken seriously by you guys.
I feel I need to pay back. I'm not being supportive to others, I feel I have enough with my own struggles...and that's what impresses me so much, that being in this battle you even manage to help others, give advices, information, education...I really have no words. There are some suppressed tears building up in me, and thinking of this whole tx and you people in this forum, has given me a journey in life that I'm 100% sure will change me, my perspective, in the future. There's always something good coming out of struggle and pain, right?
Have you read this post ?
It's not a miracle that he stopped early and is und. It's the fact that we all probably need a different amount of time on tx, to succeed. Doctor's encourage us to do more than some of us might need because more people will become SVR that way.
It's a crap shot whether stopping will make a difference or not.
Yes, I read it :) amazing.
I don't know what you mean by "It's a crap shot whether stopping will make a difference or not. " (not that steady in English..).
So far, after spending time on this forum the last 6-7 months, I still haven't heard of anyone not achieveing SVR on triple tx that have been on tx for 20 weeks or more and was und throughout tx...so I tend to think that this maybe have done it for me....hopefully.
"After you posted that you have had your last transfusion just last Wed. and that they seem to hold you over for approx. three weeks(which is about normal for trans.) then it would logistically figure to at least hold the HGB. steady till the end of the prescribed time (24Wks.)"
The prescribed time for Boceprevir is a total of 28 weeks. I will need one more bt before end of tx (20 July)...if I last that long..
I have been reading your posts now for a few months. Sometimes I felt worried for you, always I have felt admiration for you. You have been through so much and to be going through this with two small children is astounding.
Good luck to you and all the best to you, dear.
Hey girl, congratulations on making it to week 24!!! You are truly amazing. We all have to make tough decisions while on tx. Just signing up for this was a big process. Just the other day I had to remind myself I would see this thru to the end no matter what obstacles I faced. And I'm only on week 11. I actually fainted at work and the seriousness of it all hit me emotionally. Only you can know what is best for you. I tear up a bit, thinking about your struggles. Good luck to you.
In other words, we really do not know until 6 months after treatment how we will do. We also have no idea at the beginning if we need treatment for 3 months, 6 months, 12 months, or even longer, if we will clear the virus, or if we will reach SVR. Some people do the full treatment and relapse. Others do less treatment and SVR. So we are all treating and hoping that we reach SVR, but we really do not know if we will.
Hey Lady! I asked a moderator to remove my other post :)
I wish there were statistics to show the likelihood you will attain/maintain SVR by stopping early. I understand summer is right around the corner and you need to go back to being a mom again. My heart just sunk when I read that sentence. You must feel so drained. I can tell you have put much time and thought into this decision. I hope you keep us posted on what you decide as well as with your future lab results.
Whatever you decide, we will be here to support you. You have been through a lot with the anemia and transfusions. Think about what willbb said above, if you stop 3-4 weeks early and then relapse later, will you always wonder if the additional 3-4 weeks would have made the difference? You're the only one who can make the decision, but you've got those two little darlings who want you to have a long, healthy life.
Hey! Where have you been? How have you been? It has been a week now. Just wondering what you decided to do. My Hgb tanked again and I thought about you. Just how you have felt this way the entire time you treated. I swear you are Super Woman to hang in there by sheer determination. If I felt this way all the time I would have 911 on speed dial! Guess it would be 113 where you live!! I hope you are OK♫
wat a difficult decision...Only somebody who went trough the treatment can know this. Every day makes a difference when you feel like dying from inside and outside. I must tell you that I had the same and wanted to stop the last weeks of treatment. I did't; I sad to myself: just 1 more week and than I wil stop. And than next week again...and so I reach the endline.
I am now 2 months post and I started to veel better. All the terrible things from the last 48 weeks look to me now a little (I don't know how to describe) softer...
Hang in there Bovary
Love from Holland
Hi! I'm still on tx. I don't seem to dear to quit, as long as nobody can give me the approval for it. But I take one week at a time.
Now that it's holidays from school and kindergarden and we have plans for our vacacion, it makes it more tempting to quit just to feel a littlebit more energetic. I don't want to dissapoint friends that we have made plans together with + our kids. I know it sounds strange, not thinking longterms. I would be bitter and sad if going off tx too early caused me to affect tx results.
I'm having inner discussions every day and it takes a lot of energy and focus. And I have invited 13 kids for my 4 year old daughter's anniversairy on Saturday..I want to much to be able to do all those thinks..I'm just so sick of feeling sick all the time.
But I'm still on tx and the days seem to pass. I had my last BT on the 13th of June. Refill will be needed about in 1 1/2 week. I feel so sick thinking about having another BT...this has really not been a pleasant solution to the anemia. And I can't stop feeling frustrated and angry over how my doctor / our health care manages this side effect...
I felt for a long time that me being so weak when it comes to finnishing a 28 week course - that it is a shame, compared to you handling 48 weeks, or even treating for the second, third time and even more...that my thoughts are not helping others in here, not giving hope and courage to others. That's also why I kept away for some time. Of course, also because I need to think about other things. Things are busy with my business + my kids as well.
Just want to thank you. You are all in my mind, and what you say mean a lot to me. I really appreciate you all, my dear sisters and brothers :)
I will keep you updated and in the meantime, I wish you all good luck with your own struggles.
Oh Bovary, I can feel it in your words how much you must be struggling at this point in tx, trying to stay focused on finishing the last few weeks. At the same time running a business and raising children, you should be very proud of getting yourself this far. I believe you are very wise to attempt to go through the full tx, giving yourself the best opportunity for SVR, then never having any doubt you did all you could.
Try to minimize your activities the next few weeks since these might be the most challenging, both mentally and physically, as you come to the end of treatment. Hosting a party for 13 kids??? I hope you have lots of help. Try to stay focused in conserving what energy you have to get yourself through. I'm still amazed at the number of transfusions you've endured.
Once you finish your energy will come back and you'll be able to tackle all the things you've had to put off for now. It will happen very soon. Hang in there. We are all hoping and praying for your SVR. Good luck.
Just wondering Bovary if, you made it through to week 28. And how long did it take for you to start feeling better. I'm at week 20 (viral load was 0 @8 and 0@12) and now I've got the flu so the progress I've experience over the past weeks seems to be dissapating. I have not had and transfusion or epo but the doctor reduced my Ribaviron 3 times from 5 a day now it is 2. After 3 weeks my Hemoglobin moved up to 97 from 84. Anybody else have experience with a prescription reduction.
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