Aa
Resume full dose riba or reduce procrit dose?
A very informal poll, if you will:
Undetected at week #13, reduced riba from 1200mg to 1000mg since week #30 due to anemia, procrit 2x a week, hgb at 9+ weeks #31-41, 10+ weeks # 42-52, and now, finally at week #54, hgb at 11.3. (Whew!) Question is:
What would you do if you called the shots (no pun intended)? Resume 1200mg riba? Space out the procrit? Reduce the procrit? None of the above?
Two things I keep tossing back and forth in my mind is the risk of relapse vs. the risk of procrit use... and I'm aware that members here aren't doctors, but plenty of you know more about treatment than the average GI specialist, and I'd greatly value your feedback. (And those who don't feel they know much are welcome to comment too :] !) Besides, for the most part, treating hep c seems like a balancing act based on the heaviest data any particular doctor is weighing at that particular moment... please weigh in (and Brain Mass Index is not a factor). Thanks!
~eureka
PS: Additional question for those of you who have AFP readings regularly... what's been your highest reading?
Undetected at week #13, reduced riba from 1200mg to 1000mg since week #30 due to anemia, procrit 2x a week, hgb at 9+ weeks #31-41, 10+ weeks # 42-52, and now, finally at week #54, hgb at 11.3. (Whew!) Question is:
What would you do if you called the shots (no pun intended)? Resume 1200mg riba? Space out the procrit? Reduce the procrit? None of the above?
Two things I keep tossing back and forth in my mind is the risk of relapse vs. the risk of procrit use... and I'm aware that members here aren't doctors, but plenty of you know more about treatment than the average GI specialist, and I'd greatly value your feedback. (And those who don't feel they know much are welcome to comment too :] !) Besides, for the most part, treating hep c seems like a balancing act based on the heaviest data any particular doctor is weighing at that particular moment... please weigh in (and Brain Mass Index is not a factor). Thanks!
~eureka
PS: Additional question for those of you who have AFP readings regularly... what's been your highest reading?
Do everything possible to avoid a second round of treatment. Take the procrit and the ribo--do whatever is possible. I am on my second round of treatment, and it's so much worse than the first. I can't even describe the difference.
Beautifully thought out response Eureka. May you and your husband achieve the success you so richly deserve. Hang in there!
Superb analysis, Eureka. I don't think it's a matter of honour over valour at all - I think you and your husband consistently display both and his decision maintains that.
Oddly...when I read your comments, that scene from the movie "Wayne's World" came to mind where Garth and Wayne suddenly drop in front of Alice Cooper proclaiming "we're not worthy" ... you're Alice and he's Cooper. :)
I hope he very much enjoys his break and his higher hgb. Well-earned. A week at a time. Rooting for both of you in my heart all the way.
Trish
Oddly...when I read your comments, that scene from the movie "Wayne's World" came to mind where Garth and Wayne suddenly drop in front of Alice Cooper proclaiming "we're not worthy" ... you're Alice and he's Cooper. :)
I hope he very much enjoys his break and his higher hgb. Well-earned. A week at a time. Rooting for both of you in my heart all the way.
Trish
Wow, some great dialogue here, thanks so much to everyone for your responses and opinions. And, btw, for those who don't know me, I apologize if I was unclear, but the stats posted by me are those of my husband -- (I'm not on treatment, just a member who is the caregiver/administrater).
Can-do-man, jacksonblue, newleaf09, RCM829:
My thoughts were to go back up to full riba too -- the dosage reduction has been an underlying concern in my head -- but I was voted down by both my husband and his nurse, because...
Joey_M:
My husband is indeed glad to get some QOL back, and for the moment he was told by the nurse that he doesn't need to do anything differently, and he's quite enjoying his current energy level.
FlGuy:
The plan at the moment is 72 weeks -- as you once said, as stage 4, geno 1, he really doesn't have any other good options. However, having tolerated hgb between 7.3 and 10.4 since March, and already on the maximum dosage of procrit the doc will prescribe (2x a week) -- and still punctuated with a couple of transfusions in between -- hubby's quite glad to not whack down his hgb again and be functional, even if it's only for a week.
Trish77: I was hard-pressed not to sneak in the extra riba pill ;), but this time, honor got the better part of valor. Similar to your experience, procrit seems to work slowly on my husband, so my thoughts were to resume full dose riba in hopes that hgb would hold, but nurse has decided to wait one more week due to his having had unpredictably quick drops in hgb (there was one week when he had a drop of 1.3). The biggest concern I have about procrit is the increased incidence of cancer: being one of the rare survivors of hcc, the rx literature is somewhat unsettling, but we were offered reassurances that hepatoma recurrence would not be impacted by procrit.
Mikesimon:
My husband's nurse seems to be of the Schiffman camp, but your link to the JVH article is a most interesting counterpoint. I wonder if the nurse would appreciate the article from you as much as I do, or find it offensive if I offered her a copy...
Of note, though, the current dose is still pretty close to 12mg/kg. In my mind, I'm hoping the current 200mg reduction is counter-weighed somewhat by a loss of some 32 lbs since his starting treatment.
nygirl7:
I've also heard too much procrit for too long is not good... but no one has actually stated to us what is "too long." Although my husband has not been 100% (he's missed a total of 3 doses of riba during the 54 weeks), he's well above the 80/80/80 guideline -- the way his hep doc explained it, if he's able to do at least 80% of the 2 meds for at least 80% of the treatment duration, it's considered "compliant."
jessejames1973:
My husband's former insurance company adopted the guidelines you mentioned: they refused to honor the doctor's prescription for procrit at one point because his hgb was 10.1 -- when his hgb dropped to 9.6 the next week, the delay in getting the procrit approved and waiting for it to take effect resulted both riba reduction and my husband needing blood transfusion. Yes, my husband was coping -- in fact, initially, he "coped" until his hgb hit 7.3, at which point his cardiologist commented "and you're still alive and walking?!?" In his case, the no-procrit-unless-below-10-rule became a life-threatening issue. Because of a pre-existing heart condition, his PCP and hep doc decided they would transfuse below 10 until we changed insurances (which we did). Mikesimon pointed out accurately what research seems to demonstrate about the risk of epo: the warnings of complications were largely in patients with a history of existing conditions before using procrit (lymphomas, leukemias, stroke patients...) -- conditions that are significantly impacted by stimulated bone marrow activity. With low platelets, my husband's risk for stroke is low; and being that his previous cancer was a direct result of his hcv and not impacted by blood cell production, it was considered a worthwhile risk.
My husband wants just this one week of feeling pretty good before the decent New England weather's gone for good this year -- being it's the 1st time since March that he's had hgb above 11, he was glad to get the breather, and plans on resuming 1200mg riba if his hgb is as good or better next week. The added bonus is we received news that his CT-Scan Tuesday cleared up concerns about another hcc suspected on CT-Scan back in August -- it's been a long three months, but this time, it's "No suspicion of recurrent hepatoma." YEAH! It's a great week for us!
Thank you all again so much for your honest opinions, good suggestions, and well wishes.
~eureka
Can-do-man, jacksonblue, newleaf09, RCM829:
My thoughts were to go back up to full riba too -- the dosage reduction has been an underlying concern in my head -- but I was voted down by both my husband and his nurse, because...
Joey_M:
My husband is indeed glad to get some QOL back, and for the moment he was told by the nurse that he doesn't need to do anything differently, and he's quite enjoying his current energy level.
FlGuy:
The plan at the moment is 72 weeks -- as you once said, as stage 4, geno 1, he really doesn't have any other good options. However, having tolerated hgb between 7.3 and 10.4 since March, and already on the maximum dosage of procrit the doc will prescribe (2x a week) -- and still punctuated with a couple of transfusions in between -- hubby's quite glad to not whack down his hgb again and be functional, even if it's only for a week.
Trish77: I was hard-pressed not to sneak in the extra riba pill ;), but this time, honor got the better part of valor. Similar to your experience, procrit seems to work slowly on my husband, so my thoughts were to resume full dose riba in hopes that hgb would hold, but nurse has decided to wait one more week due to his having had unpredictably quick drops in hgb (there was one week when he had a drop of 1.3). The biggest concern I have about procrit is the increased incidence of cancer: being one of the rare survivors of hcc, the rx literature is somewhat unsettling, but we were offered reassurances that hepatoma recurrence would not be impacted by procrit.
Mikesimon:
My husband's nurse seems to be of the Schiffman camp, but your link to the JVH article is a most interesting counterpoint. I wonder if the nurse would appreciate the article from you as much as I do, or find it offensive if I offered her a copy...
Of note, though, the current dose is still pretty close to 12mg/kg. In my mind, I'm hoping the current 200mg reduction is counter-weighed somewhat by a loss of some 32 lbs since his starting treatment.
nygirl7:
I've also heard too much procrit for too long is not good... but no one has actually stated to us what is "too long." Although my husband has not been 100% (he's missed a total of 3 doses of riba during the 54 weeks), he's well above the 80/80/80 guideline -- the way his hep doc explained it, if he's able to do at least 80% of the 2 meds for at least 80% of the treatment duration, it's considered "compliant."
jessejames1973:
My husband's former insurance company adopted the guidelines you mentioned: they refused to honor the doctor's prescription for procrit at one point because his hgb was 10.1 -- when his hgb dropped to 9.6 the next week, the delay in getting the procrit approved and waiting for it to take effect resulted both riba reduction and my husband needing blood transfusion. Yes, my husband was coping -- in fact, initially, he "coped" until his hgb hit 7.3, at which point his cardiologist commented "and you're still alive and walking?!?" In his case, the no-procrit-unless-below-10-rule became a life-threatening issue. Because of a pre-existing heart condition, his PCP and hep doc decided they would transfuse below 10 until we changed insurances (which we did). Mikesimon pointed out accurately what research seems to demonstrate about the risk of epo: the warnings of complications were largely in patients with a history of existing conditions before using procrit (lymphomas, leukemias, stroke patients...) -- conditions that are significantly impacted by stimulated bone marrow activity. With low platelets, my husband's risk for stroke is low; and being that his previous cancer was a direct result of his hcv and not impacted by blood cell production, it was considered a worthwhile risk.
My husband wants just this one week of feeling pretty good before the decent New England weather's gone for good this year -- being it's the 1st time since March that he's had hgb above 11, he was glad to get the breather, and plans on resuming 1200mg riba if his hgb is as good or better next week. The added bonus is we received news that his CT-Scan Tuesday cleared up concerns about another hcc suspected on CT-Scan back in August -- it's been a long three months, but this time, it's "No suspicion of recurrent hepatoma." YEAH! It's a great week for us!
Thank you all again so much for your honest opinions, good suggestions, and well wishes.
~eureka
i didnt say i had a hb of 8.5 i said others,
yes hb is a personal thing some will cope better than other at lower levels , it does not change the fact that procrit can be dangerous if abused, a hb of 11.3 does not warrant procrit it is not needed the risk out weighs the benefit at THIS level.
"ABOVE 10 is a bad idea , yes i know it takes time to work but 10 is easily manageable for a female in particular in fact 8.5 is doable i know plenty of people including men who coped on 8.5!!!!!!!!!"
You know plenty of people including men who coped on 8.5? Plenty? I find that hard to believe. 8.5 hgb is getting dangerously close to blood transfusion territory and a man at 8.5 is even worse than a woman at that low level of hgb. I think once hgb starts going below 10.0 it becomes a watchful concern and moreso in a man.
ABOVE 10 is a bad idea for taking procrit? Above 12 is the known cutoff point for procrit. If you STOP taking procrit at 10.0 , you've hardly begun even to get your hgb level up into safer ranges with regards to healthier levels of hgb and to be able to adhere to ribavirin dosages without reduction. It's reckless of you to keep saying "epo given when Hb IS ABOVE 10 is a bad idea above 11 is stupid and above 12 dangerous, "
The only part of that which is true is the above 12 part - that's the known fact.
As well, procrit for those with, as Mike put it, hemolytic anemia due to HCV treatment are in a whole other category. The duration of our treatment is quite long and adherence to that therapy is critical along with keeping decent levels of ribavirin. The persons in the studies in the following article were mostly and almost entirely above 10.0 hgb and as you read through it all, the benefits of procrit for those on combination therapy are clear when the conditions warrant it - dropping hgb and to assist with maintaining full adherence to dosages as much as possible.
Alfa for the Treatment of Combination Therapy-Induced Anemia: Focus on Epoetin Alfa
Authors and Disclosures
http://www.medscape.com/viewarticle/507060_9
To clarify:
My HGB went from 17.8 to 10.2 three months into treatment. After the initial drop, it continued to fall every month. I am on enhanced dosages and my doctor did not want to risk having to reduce the Ribavirin. I appreicate everyones viewpoint on this.
My HGB went from 17.8 to 10.2 three months into treatment. After the initial drop, it continued to fall every month. I am on enhanced dosages and my doctor did not want to risk having to reduce the Ribavirin. I appreicate everyones viewpoint on this.
Ooops I didn't check when I had my allergy panel run he did my hemo too it's over 13 now......but that is three years post tx.
Normal 11.7 - 15.5
So now at 11 someone would definitely not really be prescribed it as it's in the normal range still especially for a woman. It makes sense I guess why they make us suffer.
Normal 11.7 - 15.5
So now at 11 someone would definitely not really be prescribed it as it's in the normal range still especially for a woman. It makes sense I guess why they make us suffer.
The use of Procrit is at the discretion of the physician. "
PS I think mostly it is the insurance company that says no...........at 6grand a box of 10 I can see how they would feel it should be warranted. I could use a shot now to tell you the truth I'm so tired ;)
PS I think mostly it is the insurance company that says no...........at 6grand a box of 10 I can see how they would feel it should be warranted. I could use a shot now to tell you the truth I'm so tired ;)
I think the point was that the black box warnings say not to let the hemo go rapidly up over 12, isn't that it? I know my doc wanted me to stay right where I was at 10.5 or so and when I had gone up over 12 (from taking 40,000 x 2) he went berserk and I didn't understand why until the warnings came out.
AT 11.5 or 12 one might "think" they needed procrit but really that is almost a normal perfect hemo for a woman. Two years later and I believe mine is 12.3 or something like that............CERTAINLY manageable to anyone.
When Iost six points in ten days from 15+ to 9 - THAT was bad...it's not only the number but how fast you go down that is key to the issue. Going back up 10.5 was tolerable (not pleasant but safe and tolerable).
AT 11.5 or 12 one might "think" they needed procrit but really that is almost a normal perfect hemo for a woman. Two years later and I believe mine is 12.3 or something like that............CERTAINLY manageable to anyone.
When Iost six points in ten days from 15+ to 9 - THAT was bad...it's not only the number but how fast you go down that is key to the issue. Going back up 10.5 was tolerable (not pleasant but safe and tolerable).
Generally a Hgb of 11.3 would not warrant Epo.
But, it is easy to imagine a scenario in which Epo might be appropriate with an 11.3 Hgb.
Say, for instance, a man is 3 weeks into TX and his HGB drops from 16 to 11.3.
Starting Epo might be prudent in that situation. It's always about the individual circumstances.
Mike
But, it is easy to imagine a scenario in which Epo might be appropriate with an 11.3 Hgb.
Say, for instance, a man is 3 weeks into TX and his HGB drops from 16 to 11.3.
Starting Epo might be prudent in that situation. It's always about the individual circumstances.
Mike
I agree that 11.3 does not warrant Procrit but if she goes back to full riba, she will likely end up continuing the procrit. Some people become more accustomed to the drugs as TX drags on but not all of us do. Low HGB is no better for a woman than a man. Below 10 is breathless, exhausted and weak for anyone. Can you keep plugging along just the same? Sure. You do what you gotta do. Do people drop out of TX because they are so incapacitated by low HGB that they can't work? Sure again. In the U.S. 8.5 will get you a tranfusion. The use of Procrit is at the discretion of the physician. If he sees that you have difficulty functioning in the 10's, you'll get Procrit. No point memorizing all the negative side effects of a drug. That's one of the things that keep perfectly sensible people from starting the peg/riba therapy until they are verging on liver failure.
i didnt say i had a hb of 8.5 i said others,
yes hb is a personal thing some will cope better than other at lower levels , it does not change the fact that procrit can be dangerous if abused, a hb of 11.3 does not warrant procrit it is not needed the risk out weighs the benefit at THIS level.
8.5? I don't know what your baseline Hgb is but 8.5 was too low for me. At 9.5 I would sit in my car for 10 minutes trying to get the energy to walk the 100 feet to my office. I guess it's a very individual thing. I was lucky to get Epogen. It made a world of difference and, in my opinion, didn't expose me any unnecessary risks.
The problems I have seen with epoetin alfa occurred in renal impaired patients, cancer patients, patients with cardiac disease, uncontrolled hypertension, clotting issues or a history of stroke or seizures.
I am likely missing some disorders but I cannot recall seeing any of these epoetin issues in patients who treated for TX induced hemolytic anemia. I would guess that some do exist but I can't remember reading about them.
Mike
The problems I have seen with epoetin alfa occurred in renal impaired patients, cancer patients, patients with cardiac disease, uncontrolled hypertension, clotting issues or a history of stroke or seizures.
I am likely missing some disorders but I cannot recall seeing any of these epoetin issues in patients who treated for TX induced hemolytic anemia. I would guess that some do exist but I can't remember reading about them.
Mike
I have already told you...in my case it wasn't a tolerability issue. I was tolerating just fine. I was on procrit to keep my hgb above dosage reduction level as are a number of people. Tolerability is relative as well. If an hgb of 11 as a man lays you flat, then it lays you flat. No point in pretending it doesn't and just looking at a number and treating based on what you SHOULD feel like. I'd be repeating comments I've already made to say more so I'll leave it that we have different viewpoints on this.
balancing correct
i am not suggesting procrit is not used, just use with caution 10 is the cut of hence why i said ABOVE 10 is a bad idea , yes i know it takes time to work but 10 is easily manageable for a female in particular in fact 8.5 is doable i know plenty of people including men who coped on 8.5!!!!!!!!! here in the uk it is not dished out, sometimes to the detriment sometimes for good reason , the OP is und at wk 13 now wk 54 a small drop would not be an issue , also hb tends to stabalise with in a gram so they would not see a big drop, also the OP has a HB of over 11 why do they need to risk a stroke ???? they dont do they
i am not suggesting procrit is not used, just use with caution 10 is the cut of hence why i said ABOVE 10 is a bad idea , yes i know it takes time to work but 10 is easily manageable for a female in particular in fact 8.5 is doable i know plenty of people including men who coped on 8.5!!!!!!!!! here in the uk it is not dished out, sometimes to the detriment sometimes for good reason , the OP is und at wk 13 now wk 54 a small drop would not be an issue , also hb tends to stabalise with in a gram so they would not see a big drop, also the OP has a HB of over 11 why do they need to risk a stroke ???? they dont do they
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