I just got back from hospital where I received a new dose of fresh blood. My hgb was at 8.5 yesterday so they descided to give me a new dose of blood today to prevent my hgb from going lower.
They got results for my erytropoietin level, which is to high to start any Epo/Procrit. It is 144.0 and should be between 4.3-29 to have any effect of the Procrit. The doctor says that it won't do anything for my hgb level as my levels for this hormone already is so elevated. So I will have to continue with getting transfusions...
What they also mentionned today, is that my Lk-Neutrofile gr (don't know what you call it in English but it has to do with the white blood cells) is low, at 1.11. If it goes below 1, they will have to reduce the Interferon doses.
They haven't reduced any of the meds yet so I'm still hoping to continue and stick to the plan, but if they have to reduce both the Riba and the Interferon will I have to go for a 48 week tx instead of 28 weeks? Are the SVR rates diffenet for those who have to reduce on the meds?
I will take my 11th shot tomorrow and hope to be able to continue for a full 28 weeks on tx. The transfusion gives me some energy back and hopefully that means I can "enjoy" the weekend a bit more :)
Willy, I was still detectable at 4 weeks but UND at 8. I know I'm not the only one struggling with anemia here...it's just that I had the impression that Procrit could save me from some of the problems, but as my doctor now says, it won't do anything for my hgb level, so transfusions will be the solution till now.
I know I can't "afford" to be picky, but having several transfuions makes me somewhat a little stressed. It's as safe as it can be, so I just have to lean back" and trust that it's ok.
Loosing control and having to trust others when it comes to tx and health matters is new to me and a bit of a challenge. I notice that being treated outside of the U.S. is different and that doctors have different ways of handling the side effects.
Ya ya..enough of worrying from this side of the world - for now :)
For what it's worth, Procrit hasn't done much for me. I was at 9.2 and dropping when it was added at week 18 and now at week 25 (of 28) it's at 9.5. Briefly went up to 9.9. Very weak and anxious to finish this treatment.
Sometimes they reduce the Ribavirin and that can help, have they discussed that with you? My Neutrophils have been between .6 and .7 for over a month, my doc says that if ti gets to .5 they will consider rescue drugs, but there ahs been no mention of reducing interferon. Which 3x med are you on, I forget, is it Inc or the Vic?
From clinicalcareoptions slight dose reductions did not seem to impact SVR rates, and no your treatment time will still be 28 weeks as you were und at week 8..... Hang in there.
In the SPRINT-2 trial, the SVR rate in boceprevir-treated patients who did not become anemic was 58%. For patients who became anemic with boceprevir treatment, the SVR rates were in the 70% range. The SVR rates were 74%, 78%, and 71% for patients who used erythropoietin, reduced RBV, or did both to manage anemia. Thus, RBV dose reduction did not impair the likelihood of success with boceprevir treatment. However, only 37 patients reduced RBV, whereas ~ 80% of patients used erythropoietin.
80mecheng: I guess I was hoping to get Procrit/Epo by now and that the anemia could be stabilized by this rescue drug. So I was a bit dissapointed when it came out that it won't do anything for my hgb. Sorry to hear that you don't benefit much of the procrit. Have you had transfusions? It really helps and I feel the powers from it right away. But it doesn't last for long.
1oftheclub22: I don't know why the nurse told me that below 1 they will consider reducing the Interferon or dropping one shot. No rescue drugs was mentionned as an alternative. I don't know why they consider mine as low, if yours are down at 0.6. Maybe because of other results from my blood tests. What she told me (the nurse) is that when it goes below 1 the risks of other infections increases and that the immune system can't resist as much as it should. I'm on triple tx with Vic.
Can-do-man: Thanks for the information. Good to hear. So I won't fear the eventual Riba reduction so much. Being here on this forum with most of you guys being treated in U.S. makes it sometimes frustrating for an outsider like me (from Norway) to handle that my doctor and nurse seem to treat in a different way than most of you. As mentionned before, our health system is different from yours and it seems like the doctors in US have more experience on hcv tx in general and that you have more rescue drugs to reduce side effects of tx.
I can drive the nurse and doctor crazy with all my questions and always comparing and argumenting with them on how it's done in US..lol..I'm a pain in their as..
It might just be different because we are in different countries and the insuanace requirements/ medical protocols are different...
I have noticed that when i get a cut or something it takes much longer to heal, and becomes infected sometimes, that never use to happened before...don't know if it's related to treatment or not, but maybe...I have gotten other infections as well, but not any lung infection...which would be what I would be most concerned about I think.
I agree with 1oftheclub222 regarding the neupogen. My absolute neutrophil count (ANC) is often down to 0.2-0.4 prior to the neupogen shot and rebounds quickly. There have been several studies to show there is no direct correlation to risk of infection and low ANC for HCV patients. The risk of infection is high for cancer trt patients which may have been adopted from their trt regimen. Most of the experience hepatologists will use 0.5 or lower for the threshold of using neupogen or dose reduction. My ANC has been low for over 30+ weeks and have not had any infections. However, I am a bit cautious with washing hands, staying away from those with the flu, etc.
Flcyclist: the more I learn from you people in this forum, the more questions I have for my nurse and doctor. It seems to be some differences in the way they treat over here and it's frustrating and makes me question their decisions. It's good to hear from you that neutrophil count down to 0.5 is ok.
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