After reading your discussion guys i am convinced that the Procrit is the way to go, i don't want to have problems that would force me to stop tx.
Thanks all of you for your great support which i really need.
I have been reading for a bit & I'm confused. I have a chronic lung disease, as well as HCV & when I am in the hopsital & my pulse ox drops below 80, they usually do not let me out, & often intubate. So I am confused, isn't that kinda the same thing? How could anyone with such a low hemoglobin be told that they're doctor is comfortaBle with that, especially on trail? I was under the assumption hemoglobin and oxygen levels are closely related
I am very interested in this topic because my doctor wants me to go on the tele trial, & as I said, I have a lung disease, so I am very concerned about my oxygen levels
I just bumped that thread up in case anyone is interested -- sorry, Shehabi, to highjack your thread!
Thanks to you all for the information. Looks like my husband is going to start tx soon and naturally I am worried about him. (I am going to feed him the tomato-based "functional food" that Rockerforlife posted about a few days ago. I actually wrote the guy who did the study and got the recipe. Hope it works!)
While it is true that I required transfusion (once) during tx, and procrit throughout, I had pre-existing damage to my bone marrow from previous cycles of chemotherapy, as well as radiation treatment. I agree with alagirl, transfusion dependent hemolysis is not common.
jd
My impression is that the need to use procrit is fairly common as the majority of people are going to have some level of hemolysis (some of whom will not need procrit). I think that having hemolysis to the extent that you need transfusions is much more rare. In fact, I only knew of one other person on this forum who needed one, but in the past few months, I've seen about three other individuals. Not many considering how many people come through here. My doctors told me its not that common to have transfusion dependent hemolysis during tx.
More often what I do see from posters is that they don't see the blood loss coming in time when they start tx, and they may end up in the ER getting fluids, etc prior to initiating procrit.
My best guess (based on reading in here as well as perusing scholarly studies) is that roughly 30% of patients on HCV treatment will require some sort of intervention due to ribavirin.
Bill
Does anyone have a sense of how common it is, during treatment, to needeither Procrit or transfusions?
I'd talk to your doctor. Typically they upper limit of what they want you to use procrit to achieve is between 11 and 12.
Oh, I understand.
You must half felt 3/4 dead when your hgb went down that far. It sounds dangerous. I cannot imagine having such a low count. Hope you're feeling better now.
Lots of people have queried the use of the word 'comfortable'.
I meant 'safe' , a level that doctor and patient could be comfortable with.
I didn't mean the feelgood factor of the patient.
In cases of haemolytic,ribavirin induced anemia my doctor and I believe others try to maintain the haemoglobin at around 10 during the course of treatment.
I suffer very badly from ribavirin induced anemia and procrit does not work for me so I know all about the physical discomfort.
As I mentioned in an earlier post I have been as low as 5.4 during current treatment so I have been in some pretty horrible territory.
With hgb at 12, I would ask about discontinuing the procrit. My oncologist told me a few years back that the risk of clots begins to outweigh the benefits at about that point.
I don't understand though, that you say that an hgb of 10 is comfortable. Mine was hovering just a bit above that all during tx and I was VERY uncomfortable. I would almost faint in the shower etc. I was so weak, I could hardly get out of bed. Of course it was also the effect of the tx, but the low hgb played a role in this too.
From what I have read and also according to my hepatologist here in DK, procrit is administered when one goes below 10. Blood transfusion would already be administered around 8.
From what I have read on the forum, it should be discontinued, if your hgb is back up at 12. I have no personal experience with Procrit, so I think it is better that someone with the experience replies.
I thought that you meant that the 2 systems had the same values.
The normal range of haemoglobin for a man is 13.5 to 17.5 g/dl and for a woman is 11.5 to 15.5 g/dl.
My results are delivered in g/dl not molar concentration which is what you may be assuming.
Therefore I am using the same reference range as the Americans.
Marcia should i continue to take my procrit as instructed, since i am at 12. I think that when i do my weekly shots, hemo drops. i figure i am staying at same level. i read somewhere that when taking procrit and it reaches 12, it should be stopped. anyone know about this. i go to doc next week. i will ask her is it safe to stop, since my hemo drops rapidly.
The equation is SI units divided by 0.6206 = the old units
I'm sorry, but that is incorrect. The hgb is not the same. An hgb of 5.4 in SI units equals 8.7 in the old system. A 10 in SI units (Système International) would be 16.1 in US terms
I too was uncomfortable with hgb of 10, which is why last night I asked the question, "comfortable, in what sense?" I thought it was a legitimate and courteous question and so, apparently, do others.
Hgb of 10 made me very uncomfortable, and by the time it dropped to 7.4 I was hospitalized for transfusion. The transfusion took care of the crisis and between dose reduction and procrit I got my hgb back up into the low 9s where it remained for 40 weeks. Hgb of 10 felt much better on the way back up than it did during the decline.
jd
I'm another one who felt very uncomfortable with a hemoglobin of 10. Procrit helped me a lot.
I'm a little confused about why people on procrit might not SVR as often as those who just have a dose reduction when those people who are dose reduced are getting transfusions. Don't transfusions ultimately do the same thing? Raise the hemoglobin? Can someone explain please.
Thx your response.
I realise that one maintains the ribavirin dose where possible and that arbitarily reducing it is not a new way of improving SVR rates.
I am quite excited by this shift in perception tho' as there has been a tremendous amount of dogma about maintaining the dosage which could be needlessly demotivating for those who are reduced.
I also suspect that job of ribavirin is pretty much done when the viral load is pushed down to undectable and I have always felt that the drug should be pre-dosed ahead of the interfron.
I think there is still a lot of play in improving treatment protocols.
My doctors actually WERE worried about my heart with my hemaglobin levels. And the lowest mine got was in the six's. I was not allowed to exercise (like that would have happened anyway), and I was taken off my adderall and told not to consume caffeine. Part of the issue, and I don't know if you've had this problem, was that I would become critically low in potassium as my blood count dropped.
I am in the U.K,but haemoglobin values are the same-your 10 is my 10 and so on.
Some other biochemical references are different but not HB.