Aa
HGB 3.6 to 7.9 after transfusion
I did get 4 units of blood transfused wednesday nite since my hgb
was 3.6, but I was disappointed that after that they did a blood test
and I'm only at hgb 7.9 now which is still low ...ain't it?
The said each unit of blood raises the hgb about one point.
Now I have to hope the procrit WILL WORK!
I had taken 6 shots of Procrit...is it gonna be like starting from shot 1 now
with the "new blood"?
I feel like a new man after transfusiooon!
was 3.6, but I was disappointed that after that they did a blood test
and I'm only at hgb 7.9 now which is still low ...ain't it?
The said each unit of blood raises the hgb about one point.
Now I have to hope the procrit WILL WORK!
I had taken 6 shots of Procrit...is it gonna be like starting from shot 1 now
with the "new blood"?
I feel like a new man after transfusiooon!
Yeah that is still so low but it has to be so much better for you than it was!
I bet the tranfusions wasn't that bad either was it?
I hope that is a good start for you to be cured of this. I really, really do!
I bet the tranfusions wasn't that bad either was it?
I hope that is a good start for you to be cured of this. I really, really do!
It wasn't bad at all...pain in da butt...about three hours for each unit but
pretty much painless...thanks!
pretty much painless...thanks!
Good morning,
See I told you it would be a piece of cake. So glad you feel like a new man and it will get better, you'll see. The procrit should work now. I am so happy for you, march on to SVR.
The Beagle
See I told you it would be a piece of cake. So glad you feel like a new man and it will get better, you'll see. The procrit should work now. I am so happy for you, march on to SVR.
The Beagle
That is just great news. I can only imagine how much better you feel. I'm thrilled that you're back among the living. Now stay with us for a while. Good luck, Mike
Thats good Mauka,your blood count is better.While you were in the hospital did they check out why you became so annemic? Anyway hopefully your hmg. will continue to raise and you can continue tx.Hope the best for you!
Dyce
Dyce
New York - Adjusting the dose by spreading the days seems to be the best approach for me. I'm on a 5 day cycle, or 60,000 units/wk. That's the max on label dosing. My Docs have never dosed higher, and they are pretty aggressive in their tx protocols. I've had to remind the nurses on a couple occasions that the fact that my weekly CBC and my procrit injections are on a different rythmn isn't a problem - since the procrit acts so slowly.
Friole - I was maintaining for a while at 40,000 every 9-10 days. That was my idea -the Doc's plan was 40,000 weekly. Once hgb started dropping though, it was really hard to get it turned around. My experience says to stay in front of it.... and react quickly to any slight downtrend.
Cuteus: Geeze! You can't give that stuff away!
Folic Acid: I mentioned my troubles in dropping hgb and difficulties in turning it around. The drop seemed to coincide with my stopping my daily multi-vitamin, and the eventual turn-around coincided with me introducing 1 gram of FA daily.
Friole - I was maintaining for a while at 40,000 every 9-10 days. That was my idea -the Doc's plan was 40,000 weekly. Once hgb started dropping though, it was really hard to get it turned around. My experience says to stay in front of it.... and react quickly to any slight downtrend.
Cuteus: Geeze! You can't give that stuff away!
Folic Acid: I mentioned my troubles in dropping hgb and difficulties in turning it around. The drop seemed to coincide with my stopping my daily multi-vitamin, and the eventual turn-around coincided with me introducing 1 gram of FA daily.
It is nice that you feel better, finally. I am worried that after 6 shots of Procrit your hgb continued downward instead of improving. How much did they give you? You might need 80,000 units a wk to get out of the danger zone, plus they need to find out if there is an underlying condition, like occult bleeding somewhere, that is keeping you from returning to normal.
best to you
best to you
I've been following your situation and am very glad to hear of your progress. You have a lot of people worried out here in forum-land. Good luck, I hope things continue to go in the right direction for you.
Well this is sort of on topic.
My hgb is dropping one point a week (down to 11 now from 15 four weeks ago - so still tolerable completely).
Did Epogen 40,000 when I was at 9 and it didn't raise it so I went to 2 x 40,000. Then it raised it too high (went to 15) so he put me back to once a week 40,000 but now it is sinking....
What options are there that might help me maintain a good old fashion 13 or something? If it keeps on going next week I'll be back to 10 and after that is very uncomfortableness land....
Any ideas?
My hgb is dropping one point a week (down to 11 now from 15 four weeks ago - so still tolerable completely).
Did Epogen 40,000 when I was at 9 and it didn't raise it so I went to 2 x 40,000. Then it raised it too high (went to 15) so he put me back to once a week 40,000 but now it is sinking....
What options are there that might help me maintain a good old fashion 13 or something? If it keeps on going next week I'll be back to 10 and after that is very uncomfortableness land....
Any ideas?
maybe taking the shot every 5 days instead of every 7? When mine went too high, I tried to cut back to every two wks. Bad move. Then I found that every 9-10 days was enough for a 12 or 13.
run it by your doc, the every five days bit.
be well
run it by your doc, the every five days bit.
be well
Oh that sounds PERFECT (except about having to take the shot so often ;-)
Excellent advice. Going to call him now and get that approved.
I do NOT want to deal with going any lower you know?
Excellent advice. Going to call him now and get that approved.
I do NOT want to deal with going any lower you know?
Yes, I believe the procrit will work. The Dr. may have to give it more for it to work, talk to him about it. Some people get it every few days, some once a week, etc. You need to talk to him about, It's the only way to get to the bottom of this and help you finish tx.
Good luck,
The Beagle
Good luck,
The Beagle
Mauka
I am so glad that is over. I am so glad you have gotten the transfusion. I do hope they can discover the reason for your drop. I can't remember exactly what week you had to quite tx, but it seems apparent that the ribavirin just ate your bllod cells at an alarming rate, and your body could not recover after you quite tx. I know you had an extememly high viral load, and that you never cleared, but I don't remember the damage to your liver. If you feel like giving your stats again, I would like to know.
NY girl -Cuteus, - all -- on increasing the hgb with Procrit
Cuteus, you are the only one (woman) besides me I know that started on Procrit when your hgb dropped to the 10's and I was wondering what you got it back up to. I am only taking shots every 14 days and mine is hovering between 11 and 11.5 and I seem to be fine with that now that my body has adjusted. When it first dropped I thought I would die at 11. THe hemotologist nurse asks me if I am okay with it every week, and I have to admit that I am but she would probably allow me to increase my hgb if I wanted to.
I have been reading all the fine print on the info that comes with the Procrit. It is recommended that you do not increase your hgb by more than 1 (is it gram) in a week. It also seems that about 12.5 is a happy number. Seems to me, NY that they allowed your hgb to go too high too fast - maybe even to your endangerment. I think that we need to be really careful with this stuff, as it is nasty. NY -- you are about where I am at 11. I too do not want my hgb to drop into the 10s, but if I were you, I would not shoot for the 13s if you are feeling okay.
Question - how often are you getting CBC's. I get them every Monday. I tried to get the nurse to let me go every 2 weeks, but with my ANC hoovering at .6 she won't allow it. Actually, I do like the weekly monitoring so it is fine -- just tired of all those sticks. Had one tech use a butterfly on me a couple of weeks ago, and that was so cool - so smooth - I wish they would use it all the time.
I am so glad that is over. I am so glad you have gotten the transfusion. I do hope they can discover the reason for your drop. I can't remember exactly what week you had to quite tx, but it seems apparent that the ribavirin just ate your bllod cells at an alarming rate, and your body could not recover after you quite tx. I know you had an extememly high viral load, and that you never cleared, but I don't remember the damage to your liver. If you feel like giving your stats again, I would like to know.
NY girl -Cuteus, - all -- on increasing the hgb with Procrit
Cuteus, you are the only one (woman) besides me I know that started on Procrit when your hgb dropped to the 10's and I was wondering what you got it back up to. I am only taking shots every 14 days and mine is hovering between 11 and 11.5 and I seem to be fine with that now that my body has adjusted. When it first dropped I thought I would die at 11. THe hemotologist nurse asks me if I am okay with it every week, and I have to admit that I am but she would probably allow me to increase my hgb if I wanted to.
I have been reading all the fine print on the info that comes with the Procrit. It is recommended that you do not increase your hgb by more than 1 (is it gram) in a week. It also seems that about 12.5 is a happy number. Seems to me, NY that they allowed your hgb to go too high too fast - maybe even to your endangerment. I think that we need to be really careful with this stuff, as it is nasty. NY -- you are about where I am at 11. I too do not want my hgb to drop into the 10s, but if I were you, I would not shoot for the 13s if you are feeling okay.
Question - how often are you getting CBC's. I get them every Monday. I tried to get the nurse to let me go every 2 weeks, but with my ANC hoovering at .6 she won't allow it. Actually, I do like the weekly monitoring so it is fine -- just tired of all those sticks. Had one tech use a butterfly on me a couple of weeks ago, and that was so cool - so smooth - I wish they would use it all the time.
Mauka,
Talk about waiting until the last minute, John. LOL. Glad you're feeling better. Hopefully you won't need it, but don't be shocked if at some point they want you to do a second transfusion, partner :) Meanwhile hopefully they're checking out your iron stores (Ferritin and transferrin sat) to make sure you have enough fuel for the Procrit to run on. I remember you posted it before but it's easy to get people mixed up here -- was this transfusion mid-treatment or post-treatment and if the former did you have to go off/reduce meds and what is the new plan.
New York, New York,
It's a helluva town and Procrit is a helluva difficult drug to dose correctly. I've dosed 40,000 units every 5-14 days. The 14 day gap was a complete disaster with a steady drop. What works best for me is 40,000 units every 5-7 days. That keeps me between 11.4 and 14.3. I's also like to fine tune it to stay around 13 but to do so takes some discipline as I've found a six week delay in dose change and hgb change. So it's not as simple as upping or lowering your dose based on your last test. You really got to chart your historical hgb against Procrit dose -- and, of course, discuss with your doctor before making any changes. One fellow (forgot who) goes to a hemotologist with weekly CBC's in the office and immediate Procrit adjustments. I'm sure the hemotologist is using some formula.
-- Jim
Talk about waiting until the last minute, John. LOL. Glad you're feeling better. Hopefully you won't need it, but don't be shocked if at some point they want you to do a second transfusion, partner :) Meanwhile hopefully they're checking out your iron stores (Ferritin and transferrin sat) to make sure you have enough fuel for the Procrit to run on. I remember you posted it before but it's easy to get people mixed up here -- was this transfusion mid-treatment or post-treatment and if the former did you have to go off/reduce meds and what is the new plan.
New York, New York,
It's a helluva town and Procrit is a helluva difficult drug to dose correctly. I've dosed 40,000 units every 5-14 days. The 14 day gap was a complete disaster with a steady drop. What works best for me is 40,000 units every 5-7 days. That keeps me between 11.4 and 14.3. I's also like to fine tune it to stay around 13 but to do so takes some discipline as I've found a six week delay in dose change and hgb change. So it's not as simple as upping or lowering your dose based on your last test. You really got to chart your historical hgb against Procrit dose -- and, of course, discuss with your doctor before making any changes. One fellow (forgot who) goes to a hemotologist with weekly CBC's in the office and immediate Procrit adjustments. I'm sure the hemotologist is using some formula.
-- Jim
I took the shot weekly, and cbc's were done monthly. After about 6 to 8 wks, I was in the 'high' range of my lab work, so, after looking up the danger of high hgb, I started experimenting with length, and my hgb dropped to below 11 at every two wks. So, I kept the shot at around 8-9 days for a 12-13hgb. It never went below 11 at that protocol. I really felt anything below 12 every wk at the Y, or when climbing the stairs. I could have lived with it, but I did not want to, I needed to keep up my schedule at the Y. My shot seemed to work within two to three wks. I responded quickly to the booster. I hope you find your happy medium. My hgb before tx was 14-15. Six to 8 wks after starting tx, it was 10.2. I was not keeping copies until then, so I have no idea it was dropping, since the PA kept saying "everything looks fine". Typical doc talk.
If you are functioning ok at your level, maintain the dose. Or you could do every 10 to 12 days for a hgb of 12-13. Try and see which one is better for you. If you need more Procrit, I got those vials in the fridge...up for adoption. do you still need the interferon? someone was asking if you could use another vial.
If you are functioning ok at your level, maintain the dose. Or you could do every 10 to 12 days for a hgb of 12-13. Try and see which one is better for you. If you need more Procrit, I got those vials in the fridge...up for adoption. do you still need the interferon? someone was asking if you could use another vial.
Hey dude...having CBCs every other week since most of my numbers are pretty level (in fact my abs neutro's went up a whole tenth point! LOL). Ast/Alt mid 20s (down from 31).
While I can tolerate the 11 I have started to hear the "ringing" and have some trouble when running around at work on stairs and such. I can't afford to get too much lower because after I get into 10 and lower...I just have too much trouble working. My body can't handle it at 9 it's so HARD.
But 11 isn't that bad at all really - I'm just concerned about dropping because it DOES take a while to raise again and I dont want to have to spend a few weeks coming in to work like THAT you know?
While I can tolerate the 11 I have started to hear the "ringing" and have some trouble when running around at work on stairs and such. I can't afford to get too much lower because after I get into 10 and lower...I just have too much trouble working. My body can't handle it at 9 it's so HARD.
But 11 isn't that bad at all really - I'm just concerned about dropping because it DOES take a while to raise again and I dont want to have to spend a few weeks coming in to work like THAT you know?
Speaking of HGB, 2 weeks ago, I dropped to 10.1, That's 8 weeks into TX, pretx I was 14.7. So I went to my hematologist for procrit, well he drew the labs, I was 10.4. This week I'm 10.8. Does it actually go up on it's own in TX? I guess so. The other thing is my WBC's are also going up, from 8.8 to 10.5.
I'm telling you I have the weirdest blood. Oh well, as long as my mood is better, I can deal with anything.
Mauka: So glad to hear you got your transfusion. Hopefully you won't need another one, but if you do, don't wait so long, it's not that bad...right.
Debby: Don't know about the Procrit question. I will follow your question, so I can learn.
Best to all...Silver
I'm telling you I have the weirdest blood. Oh well, as long as my mood is better, I can deal with anything.
Mauka: So glad to hear you got your transfusion. Hopefully you won't need another one, but if you do, don't wait so long, it's not that bad...right.
Debby: Don't know about the Procrit question. I will follow your question, so I can learn.
Best to all...Silver
Thank you...I remember that you said that is what you are doing. I have to talk to the doc and see if we can do the same. I do NOT want to fall under the ominous delerium of H3ll that going to low brings again no matter what. That is the ONLY time it's not "doable".
I'm on the Epogen and I am not sure if that is why the max he had me on was 80,000 - instead of the max 60,000 Procrit. Maybe? I do not think it really makes sense that I should go higher than anybody else on the stuff though. I would think that 60,000 twice a week 2 x 30 would be better than 2 x 40.
I'm on the Epogen and I am not sure if that is why the max he had me on was 80,000 - instead of the max 60,000 Procrit. Maybe? I do not think it really makes sense that I should go higher than anybody else on the stuff though. I would think that 60,000 twice a week 2 x 30 would be better than 2 x 40.
I know!
If i was giving $4000, I would have more takers. I guess liquid $ is not as appealing.
If i was giving $4000, I would have more takers. I guess liquid $ is not as appealing.
I think that is awesome that you were running in the summer of 05 --wasn't your finish date in the spring? That is good to know that your energy came back that quickly. The Procrit - that stuff is like gold. There may be some whose insurance is not as good as mine that might benefit more than I so hold on to it. As far as the interferon, I did have an offer of some by one of our friends, but it had expired 02/05 and we both decided to wait and see if I could resolve this "hot peg" issue another way. Now it looks like my new best friend, my insurance case manager, will be able to replace it for me with no problem. He has come through already on the Neupogen by telling me my doc needed to rewrite the prescription and when I picked it up last night, it was for 12 vials instead of 10 (hooray) - a 3 month supply.
Cuteus and Goof, you both give me pause to be watching those blood counts. Cuteus, my excercise level has definitely reduced since November, and maybe if I got my hgb in the 12s I would be more likely to increase it. Goof, I think I will ask about changing to every 10 days next Monday.
Cuteus and Goof, you both give me pause to be watching those blood counts. Cuteus, my excercise level has definitely reduced since November, and maybe if I got my hgb in the 12s I would be more likely to increase it. Goof, I think I will ask about changing to every 10 days next Monday.
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