I know I've seen this info before but I can't remember it. At what point do most doctors start prescribing rescue meds for anemia? I think my hemoglobin is still too high for any help (11 to 11.3), but I'm feeling SO tired at this level that I don't know how I could manage getting very much lower! My hemoglobin before tx was 14.7, and I'm at about 23 weeks out of 48, on Incivek triple tx although I finished the Incivek quite a while ago. Thanks for your help!
The threshold for Hgb is 10.0 - anything below is when most doctors consider either a dose reduction of Riba, Procit, or a combination of the two. Some insurance companies won't approve Procit unless it is below 10.0. It is good to discuss with your doctor a plan to address anemia, since it often takes a few weeks for the Hgb to respond to Procit. Best of luck to you.
My HGB dropped to 7.4 and I had a dose reduction on the Riba and finally I had to stop it completely. My Dr also put me on Procrit but like flycylist said it takes a few weeks for the Procrit to start working. I believe that below 6.0 is considered life threatening, but I'm sure that willbb or bill or one of the other more knowledgeable people will chime in. BTW I am 12 weeks post tx and still UND. Best of luck to you and all.....Fred
You still have a lot of weeks to go so you should try to formulate a plan with your doctor. How often are you getting CBC's? If it is only once a month you might want to ask to have them done every 2 weeks. You have done well, getting off the incevik without dropping critically but it is no fun to be tired all the time. Like flycyclist says, it takes time for the procrit to start taking effect, so watch for that downward trend.
When my hemoglobin was at 8.9, my doctor lowered my Ribavirin to 800 mg per day, and started sending me for weekly blood tests to monitor my levels of hgb. The decrease in Riba seemed to do the trick, but it took about a week and a half to start feeling better. I still don't feel normal, but I can function. I'm still waiting on the results of the last cbc. I was really feeling sick by the time I went to see the docto, though. I could not even stand up long enough to brush my teeth, I felt confused and upset, and forget about driving. I think the mental confusion was the worst, though.
Ceanothus: I know how frustrating it is to hover above the intervention threshold -- that happened to me in 2009.
If you send me your hemoglobin data (all test dates and all test results), I will model it for you. That will give us a better picture of how your hgb has been reacting during treatment and how it is trending.
During my current round of treatment, I was very proactive and as soon as I started treatment I told my doctor I wanted epoetin alfa (Procrit/Epogen) when first eligible. The hospital's hematologist then made the request with my insurance company. My insurance company denied the request because my hgb was still too high, as expected, but in their response they indicated they would authorize the intervention once my hgb dropped to 10.5 hgb. That made me feel a lot better because I knew the threshold that they would approve the intervention.
Every insurance company is different. If possible, as your doctor to find out what your insurance company's threshold is for authorizing an epoetin alfa intervention. That way, you can plan better.
I believe the Incivek treatment protocol indicates a riba dose reduction if hgb drops too low. So, there is no guarantee your doctor will first try a Procrit/Epogen intervention -- my doctor did, so I never had to dose reduce the riba, which is what I wanted.
Please understand that Procrit & Epogen are powerful drugs that can cause serious side effects. I know you are feeling really poorly right now, and you want a rescue drug, but don't forget the old saying, "Be careful what you wish for, you may just get it." Regards, GB
To add to the thoughts above, Procrit (epoetin alpha) was listed in a FDA black box warning in 2007. Targeting Hgb values at or above 12 g/dL can result in "serious and life-threatening side-effects and/or death.":
“...The agency ordered a black-box warning for the drugs that recommended the lowest possible dose to slowly raise the hemoglobin concentration to the lowest level that will avoid the need for a blood transfusion.
Moreover, the FDA said that there has never been any evidence to support claims made in direct-to-consumer advertising that treatment with darbepoetin (Aranesp), epoetin alfa (Epogen), or epoetin alfa (Procrit) could increase energy or ease fatigue in patients undergoing cancer therapy...”
It’s unlikely your doctor would prescribe epo unless your hemoglobin values dropped significantly lower; unfortunate but understandable. Try to take it easy, don’t expect too much from yourself and be sure to keep in touch with your doctor in the event your situation continues to deteriorate.
At week 23 and your HGB is still at 11.3, you can't ask for any better then that. Your odds should be good about never reaching 10 or below... Not sure those "charts" would have predicted that one.... Hmm
Mine went from 14.5 to 11 and my doctor reduced my RIBA from 1000 to 800. She said although it is still in the normal range, it isn't my normal and she wanted to try and ease the shortness of breath and chest tightening sensation. I don't feel much better, but at least I don't feel worse, yet! She said the reduction does not change the chance of SVR.
My Hgb started about the same as yours and hovered around 11.0-11.3 throughout most of tx. Even though I never approached 10.0, I still felt out of breath and tired much of the time. Just rest when you need to. I can't imagine what it must feel like to be in the 7's and 8's as many have on the forum.
As cando says , your HgB is doing fine. I also don`t believe it is the reason
you feel tired. 11.3 is not that low. There are usually two scenarios in which
you get tired from HgB. One is you get close to 10 the other is when you
experience a fast drop. With a starting HgB of 14.7 being at wk23 with
11-11.3 neither is the case.
Thanks for all the great responses everyone. I did realize I'm still doing great on paper, but I sure have noticed an increase in fatigue over the last 3 weeks, so I was mostly wanting an idea of how much worse that might get and whether it was common for doctors to consider one's personal normal range in addition to the published normal values. I did follow your suggestions and sent an email to my doctor to find out at what level he would take action. My insurance usually goes along with my doctor, so I'm choosing not to worry about their cutoff so much as my doctor's, or at least I'll wait until its a problem before I worry about it. So far I've been getting the biggest drops in WBC and ANC, and my doctor has told me his cutoff point for prescribing neupogen is if my ANC levels drop below 600 (they've dropped to 600 a couple of times but always go back up to 700-900 again all on their own the next week). I'm getting blood tests done every 2 weeks except whenever the ANC has dropped really low then he has me get another CBC in one week. A few weeks ago I asked for (and received) an extra test because of my fatigue, but I don't want to make a fuss too often. Thanks again to all!
Hi Ceanothus. I've never had an issue with really low WBCs on treatment so I won't directly address that portion of your latest comment, but I will indirectly address it. I'm guessing it's likely there are other things contributing to your fatigue instead of just the dropping hemoglobin.
I will address your comment about doctor's considering "one's personal normal range in addition to the published normal values." My doctor did. I live at 7,200 feet so my hemoglobin tends to run on the high side (17+) -- it's the body's way of compensating for living at high altitudes. As a result, my doctor was willing to intervene more expeditiously with the Epogen because my body is used to higher hemoglobin. That said, the caution that Bill1954 wrote about still applies. Cheers, GB
Thanks again! I do very much appreciate the hazards of the rescue drugs, and have actually been hoping I won't need them. I guess I'm really just trying to understand why I'm suddenly so much more tired, mostly wanting to make sense of it in order to better predict how things will go over the next few months. I do also remember that during my previous tx I did fine for a long time but developed anemia after about 8 or 9 months of tx (I was on 15 months that time), to I think there is a good chance that it will keep dropping more over time. To Sentinel13: I'm sending you a separate message with the hgb data.
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