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Taking Procrit
Hello to everyone! I am on week 38 of my treatment. Has not been such a great ride. Just when think it is getting better I am back down again. I am concerned how much procrit is too much? My hemoglobin has just come up enough for me to start taking my rib. again.But they are upping my procrit to 80,000. I am on a study program and have many friends and relatives that dont understand the program- they are concerned that I am more of a ginnypig and should stop treatment altogether. I have come along way to stop the treatment I am so close to the end. If anyone has any info on Procrit please let me know. And are the side affects of the procit bad?
I am amazed that you have been able to do anything but lay on the couch . I do understand what you are saying about husbands and friends. I was pursuing a boceprerir trial for relapsers a month ago without telling my husband. I was only going to tell him if it really looked like I could make it in. They didn't have the trial (in Dallas) where I was trying to go, but the trial coordinator ended up calling my house and talking to my hubby. Then I had to fess up. They just worry about how it inconveniences them.
I hope you are able to stay in the study, but even if you don't you still may clear. You really do have some of the worst labs I have seen listed on this forum. I am surprised you are still in the trial but (I suppose) they know what they are doing. By week 36, tx becomes the routine and it is hard to remember what it is like not on tx.
Take care and stay out of the sun this weekend
Kathy
I hope you are able to stay in the study, but even if you don't you still may clear. You really do have some of the worst labs I have seen listed on this forum. I am surprised you are still in the trial but (I suppose) they know what they are doing. By week 36, tx becomes the routine and it is hard to remember what it is like not on tx.
Take care and stay out of the sun this weekend
Kathy
Yes Frijole they did reduce the interferon some time ago and then upped it again and now reduced again. They had me to stop taking the riba for a two week period. I am now on the riba again only taking 400 mg a day. This is when they raised the procrit, again, when I first started taking the procrit I started at 40000, then to 60000 and now at 80000. The cordinater explained my hgb was still very low but They would have to stop my treatment if I did not get back on the riba. She explained I could only be off the riba for two weeks.
I am sure it was my rbc that were (.1)
and my hgb was a 3 point somthing. They did explain that my hgb should be at least 12.
I have been told that my hgb is at critical levels, but they do test it everyweek. I trust they know what they are doing. As I have said before I do not want to stop treatment. It will not only effect my treatment but will not provide anything for the study.
As for the pills-- They really seem to be the same. The same nasty taste after I have taken them. They tend to make me burp. I know some time in the treatment I have had the real thing or am on the real thing now. I know before I would have a fruity taste on my lips troughout the day and I dont experience that now.But considering how bad I feel now I wonder if I am on it now. Who knows, I try not to give it much thought. lol
This whole thing has kinda put me in a days as far as what week of tx everything has happened. But I am counting down now!!
And thank you for telling me to take it easy- that makes it reasurring that I am not being a big baby. Just doesnt seem like people around me understand why I take it easy so much. They just dont understand what I mean when I say I dont have the energy. I know my husband is getting irritated at the situation like he is starting to loose his patients. I realize it has been a long boring treatment for him too and its not all about me.
Thank you again for your replies it is nice to have someone that understands.
Ronda
Oh and I have only been wieghed twice through my treatment. At the beginning and mid term.
I am sure it was my rbc that were (.1)
and my hgb was a 3 point somthing. They did explain that my hgb should be at least 12.
I have been told that my hgb is at critical levels, but they do test it everyweek. I trust they know what they are doing. As I have said before I do not want to stop treatment. It will not only effect my treatment but will not provide anything for the study.
As for the pills-- They really seem to be the same. The same nasty taste after I have taken them. They tend to make me burp. I know some time in the treatment I have had the real thing or am on the real thing now. I know before I would have a fruity taste on my lips troughout the day and I dont experience that now.But considering how bad I feel now I wonder if I am on it now. Who knows, I try not to give it much thought. lol
This whole thing has kinda put me in a days as far as what week of tx everything has happened. But I am counting down now!!
And thank you for telling me to take it easy- that makes it reasurring that I am not being a big baby. Just doesnt seem like people around me understand why I take it easy so much. They just dont understand what I mean when I say I dont have the energy. I know my husband is getting irritated at the situation like he is starting to loose his patients. I realize it has been a long boring treatment for him too and its not all about me.
Thank you again for your replies it is nice to have someone that understands.
Ronda
Oh and I have only been wieghed twice through my treatment. At the beginning and mid term.
a couple more thoughts
first, you have lost a lot of weight and the joint pain could be related to that. I wouldn't rule out the treatment drugs, but it might be the weight loss
second, - what are you taking - 1200 mg riba a day? The cutoff for 1200 is 165 lbs...under that the standard dose is 1000 - so reducing your riba dose may not hurt your chance of SVR. (when I dropped under 165, I would have put rocks in my pocket at weigh-ins to avoid a dose reduction but it was never suggested)
frijole
first, you have lost a lot of weight and the joint pain could be related to that. I wouldn't rule out the treatment drugs, but it might be the weight loss
second, - what are you taking - 1200 mg riba a day? The cutoff for 1200 is 165 lbs...under that the standard dose is 1000 - so reducing your riba dose may not hurt your chance of SVR. (when I dropped under 165, I would have put rocks in my pocket at weigh-ins to avoid a dose reduction but it was never suggested)
frijole
I think you are speaking of your red blood cell counts and your white blood cell counts, not your hemoglobin or ANC (but I may be wrong). I am pretty sure they would have transfused you if your hemoglobin was at 3 when you went into the hospital. If I were you, I would call or go down to the hospital and get a copy of the report and post the numbers in this thread.
Here are the ranges for the various blood counts. Believe me, all of my counts were in the low low ranges throughout my 56 weeks of treatment but everything came back just fine after tx.
RBC red blood cells 4.09-5.52
HGB - Hemoglobin 12.5-15.5
WBC - white blood cells 4.2 - 9.9
ANC - absolute neutrophils 2.0 - 8.0
The ribavirin and the boceprevir both make the red blood counts go down. The hemoglobin is the number they watch for which is, as I said before, the amount of oxygen in your blood. Yours must be very low to require procrit of 80,000.
They said your white blood cells were at point 1 (.1) ? was that the wbc or the and and was it .1 ???????? Man that is low. My WBC were about 1 -1.5 and my ANC was about .4 - 1.0 all throughout tx. If it was .1 - either wbc or anc, that is really really low and I am surprised they did not dose reduce the interferon.
All I can say is that you only have 10 weeks to go and hang in there and do as little as possible. Eat well, as much as you can and not junk food and rest. You have to watch you don't push yourself too hard. And with ANC or WBC so low you have to watch crowds and be wary of infections. We (hep C patients) can withstand a lot lower threshhold of ANC than cancer patients without being open to infections so that is a good thing but yours is very low even for us. It does sound like you have the real thing (are the pills bitter or sweet? ) and you have cleared.
good luck
frijole
Here are the ranges for the various blood counts. Believe me, all of my counts were in the low low ranges throughout my 56 weeks of treatment but everything came back just fine after tx.
RBC red blood cells 4.09-5.52
HGB - Hemoglobin 12.5-15.5
WBC - white blood cells 4.2 - 9.9
ANC - absolute neutrophils 2.0 - 8.0
The ribavirin and the boceprevir both make the red blood counts go down. The hemoglobin is the number they watch for which is, as I said before, the amount of oxygen in your blood. Yours must be very low to require procrit of 80,000.
They said your white blood cells were at point 1 (.1) ? was that the wbc or the and and was it .1 ???????? Man that is low. My WBC were about 1 -1.5 and my ANC was about .4 - 1.0 all throughout tx. If it was .1 - either wbc or anc, that is really really low and I am surprised they did not dose reduce the interferon.
All I can say is that you only have 10 weeks to go and hang in there and do as little as possible. Eat well, as much as you can and not junk food and rest. You have to watch you don't push yourself too hard. And with ANC or WBC so low you have to watch crowds and be wary of infections. We (hep C patients) can withstand a lot lower threshhold of ANC than cancer patients without being open to infections so that is a good thing but yours is very low even for us. It does sound like you have the real thing (are the pills bitter or sweet? ) and you have cleared.
good luck
frijole
I was diagnosed alittle over a year ago. I dont remember what my viral load was when I started the trial. It is a double blind folded trial and yes it is the Boceprevir. I am geno type 1 1b i believe. My viral load was undetectable at 4 weeks!! They wanted me to take the nuepregen also but they did not provide this and Even with my insurance I could not afford so then did they start to lower my doses of riba. I have went from 173lbs down to 130lbs now.
My hemo dropped to 3 some months back, yes I did go to the hospital concerned with the treatment and my well being, they are the ones that told me it was down to 3 and my white blood cells were at point 1. They offered me a blood tranfusion which I declined. Then the doctor sarcasticly told me if I needed to come back in he would be there all weekend if I wanted to come play checkers with him. Gotta love those er docs.
This is my first time on treatment my biopsy said I was between a stage 2 and 3.
Yes I feel blessed to have been sent to this program and feel that the Boceprevir is a good drug.
I do remember my viral load was somewhere around 1,000,000.
Thanks again for all of yalls support!
My hemo dropped to 3 some months back, yes I did go to the hospital concerned with the treatment and my well being, they are the ones that told me it was down to 3 and my white blood cells were at point 1. They offered me a blood tranfusion which I declined. Then the doctor sarcasticly told me if I needed to come back in he would be there all weekend if I wanted to come play checkers with him. Gotta love those er docs.
This is my first time on treatment my biopsy said I was between a stage 2 and 3.
Yes I feel blessed to have been sent to this program and feel that the Boceprevir is a good drug.
I do remember my viral load was somewhere around 1,000,000.
Thanks again for all of yalls support!
Anemia means lack of oxygen flowing in your blood. HGB of 3???? I am surprised you haven't had to have a transfusion. And I cannot imagine working outside in this heat (I am in Midland so don't have the humidity you do, but....) on ribavirin with your hemoglobin. I don't think the shots would make your hips and knees burn unless you are doing those shots in your knees. I used to do the interferon in my thighs and the neupogen and procrit in my stomach. Losing weight may make your hips burn too (not as much meat around them) and you have probably lost some on tx so far.
Hang in there and stay cool
frijole
Hang in there and stay cool
frijole
Thank you everyone for your replies! Yes my hemo has been really low for a long time. It was down to 3 at one time. They will not give me my numbers right now, not sure why, I have been on the procrit for a while now, started at 40000. They just keep uppping it and I was concerned about the high dossage. I will continue treatment, come along way to stop at 38 weeks. I am just irritated that I have been unable to work. I work outside and with this Texas heat in the 3 digits I am affraid to go to work right now. I just wonder does the hemo have anything to do with my hips and knees hurting so bad. The doc says it is the shots.
Anyhow, God Bless you all!!
Anyhow, God Bless you all!!
Friole is right 80,000 is an awful lot of Procrit and we rarely see a number that high. I can only imagine that your hemo is in the 8s as well. I took Epogen (generic Procrit) which isn't metered the same I don't think way 40,000 x 2 a week. I never had any side effects or problems. We had to down it to every five days because my hemo went to high with that much but then it stayed about about 10.5 for the next 69 weeks.
Just going UP to 10 will make you feel much better. It's not like on the way down...going up it really counts and you go wow this isn't that bad why was I complainning before at 10?
As soon as you do start to go up you should feel some relief. Then you can try metering down. But if the only way you can continue is on the Procrit - it is a life saver so don't feel bad. Many of of us certainly would have to have quit without it. Thank God for it.
Just going UP to 10 will make you feel much better. It's not like on the way down...going up it really counts and you go wow this isn't that bad why was I complainning before at 10?
As soon as you do start to go up you should feel some relief. Then you can try metering down. But if the only way you can continue is on the Procrit - it is a life saver so don't feel bad. Many of of us certainly would have to have quit without it. Thank God for it.
welcome to the forum, from one Texan to another.
If you are in a trial and taking Procrit I am going to guess you are in a Boceprevir trial. Your HGB must be in the 8's or less to merit such a high dose of Procrit. Your friends don't understand and may give you bad advice. Although you may be a guinea pig, you may be a lucky one. Who knows. Tell us a little about yourself and your trial --- genotype, pretreatment vl, when you cleared (if you know), if you are unblinded, if you were treatment naive, and what the trial drug is.
80,000 is a lot of Procrit and if, even with that dose, you had to stop taking your riba, I wonder if you are taking too much riba for your weight. You don't have a lot of stroke in trials, and are stuck with what they tell you. But there are several members who have taken that much Procrit here.
frijole
If you are in a trial and taking Procrit I am going to guess you are in a Boceprevir trial. Your HGB must be in the 8's or less to merit such a high dose of Procrit. Your friends don't understand and may give you bad advice. Although you may be a guinea pig, you may be a lucky one. Who knows. Tell us a little about yourself and your trial --- genotype, pretreatment vl, when you cleared (if you know), if you are unblinded, if you were treatment naive, and what the trial drug is.
80,000 is a lot of Procrit and if, even with that dose, you had to stop taking your riba, I wonder if you are taking too much riba for your weight. You don't have a lot of stroke in trials, and are stuck with what they tell you. But there are several members who have taken that much Procrit here.
frijole
My doc does not want my hb to get over 10 while taking Procrit. Even though 10 is still below normal, he explained having it go too high is worse than having low and getting a blood transfusion.
I did 40,000 per wk too for 76 wks, no issues at all. Now I am on another round of tx and just started 40,000 today. And believe me, I am very happy to take it!!! Hang in there....don't quit....
procrit had no side effects for me, the sides were better than neupogen. but i've recently started seeing a hematologist and he was hesitant to put me on procrit unless hg dropped to 9 he said some studies have shown that cancer patients who took procrit for a long term of period had shorter life span, i know scared me too. but he wasn't too worried about patients treating with interferon, we probably won't be on procrit for long seeing that the anemia is interferon induced. but i would watch over that 80,000 is a double dose. always weigh your advantages and disadvantages, take it over with a hematologist.
First tx was on 40,000 of procrit, In the boceprevir study now went from 60,000 to 80,000 a week. Have never had a problem with procrit. Best to you
I took 40,000 of procrit per week for 40 of my 48 weeks. On that dose I could just barely keep my hgb in the 9.8 - 10 range. I could not have completed treatment otherwise. I got SVR and have had no problems related to the procrit. Your dose sounds high, have you discussed your concerns with your treatment team?
I hope you can get back on the riba so you have the best possible chance to get SVR. As Lynne said, we are all guinea pigs to some degree.
Best of luck,
jd
I hope you can get back on the riba so you have the best possible chance to get SVR. As Lynne said, we are all guinea pigs to some degree.
Best of luck,
jd
I am waiting for answers to the same question. I'm in week 43, doing everything to continue tx. They tell me that I'm anemic. Waiting for Docs. appt. to see if I need Procrit. Don't know my numbers yet, but will take what they tell me to take.
You have come a long way, listen to your Docs. I sort of think that to a certain extent we are all Ginnypigs. Everyone seems so very different!
Please don't stop tx. until you get some medical advice.
Hang in there! Lynne
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