Anemia Merry go Round

Hello my friends - seems my whole tx is revolving around procrit and anemia. I am as tired talking about it as I am sure all of you are tired hearing me complain but......I went yesterday-HGB at 11.6 no shot needed again. Then nurse told me patients still receiving procrit with a HGB of 12+ we having some problems. so no procrit unless below 11. Wouldn't go into detail. So now I sit and wait and pray when I go back next Monday I am not back to a 9.  Does anyone here know anything about this?

[friole]

They way they are holding back on your Procrit is absolutely absurd.  Even if they don't want to give you a shot today, couldn't they just go ahead an order it for every 10 days?  I can't understand why they don't see that it is working.  How exactly administers these shots?  It couldn't possibly a hemotologist.  I suggest getting a referral to a hemotologist to monitor the blood.
frijole

[DoubleDose]

I think you should just relax a little bit.  The recent news indicated that giving Procrit in order to achieve blood values over 12.0 may be dangerous, both from a cardiac and circulatory standpoint, and increasing risks of cancer.  You are at 11.6, so they do not want to keep pushing your level up, against the current FDA guidelines.  You are in great shape at 11.6, and should feel fine, from an anemia standpoint.  Much of my 18 month tx was spent hovering between 8.5 and 10.0, and that is WITH twice a week Procrit!

I do not think the 11.6 value will plummet overnight, or even in a few weeks.  You should be in great shape until your next labwork.

Read the articles from last week regarding Procrit warnings and strice guidelines from the FDA (which apply to all related anemia drugs as well).  There is reason to play it safe with this drug, so you need to be aware of the dangers as well as the benefits.  Use Procrit conservatively, and according to the new guidelines, and you should be fine.

Relax a little, and enjoy your 11.6 reading.

DoubleDose

[jmjm530]

I guess the "black box" warning is starting to filter into treatment. You might want to read "dPerry's" thread over on the "Community" side.

Why don't you ask to speak to your doctor directly and reinterate that the guidelines are for those over with hgb over 12, and you're still under. The nurse seems to be imposing a stricter guideline than the government, and maybe your doctor will correct the situation. If not, you can try and live with hgb hovering just below 11 but then insist on the twice weekly CBC's as suggested in the article the same warning study suggested, so in case you drop too fast, they can get your hgb back up. Throw that back into their face. Alternatively, you can get a secon consult elsewhere. But as DD suggests, you should be OK between 10 and 11 although personally I never functioned well below 11 on treatment. Again, make sure they monitor you twice (or at least once a week) now because hgb can really drop fast. I assume they're just skipping one shot? What they should be doing is to space the shot every 10 days to make sure your decline isn't too fast. Maybe you can convince your doc to try that as a compromise along with more frequent testing.

Be well,

-- Jim

[nygirl7]

I stayed at about 10.5 doing weekly procrit so I guess they really couldn't take me off.  I'm now glad I never really made it into the 12 range for the entire course of treatment.

I felt ok though - my body got used to it.

No wonder Dr. J. was so against me using it twice a week. Funny how things the docs tell us seem senseless but later DO make sense.

I guess this is why they are always giving us such a hassle - and I was definitely one of the people on the Procrit train without doubt.

[Myown]

My last lab which was collected Feb 2 was 11.1(hemo), but I feel fine. Of course it is lower than my normal, but I don't feel bad at all.

Maybe the tired feeling you are experiencing is from trying to do too much or maybe stress itself.

I know that stress can make me feel as if I am anemic or give me a feeling that a ran a marathon. Totally drains me.

My hemo might be lower than 11.1 at this point. My latest labs are not in yet.

I don't want procrit if I can avoid it. I know your hemo went very low at one point, and wanting to avoid that again is quite understandable.

I hope you feel better soon.

[GrandOak]

Are they doing any adjustments on your dosage?

What dosage have you been talking up to this point?

How long have you been taking it and have you been on again, off again before?

It seems like some folks require consistent rescue meds for sx's of tx, while others only need boosters to pull them through.

For myself, the anemia was a constant battle and required *large* amounts of Procrit, while the neutropenia was not as severe and only required occasional boosts of Neupogen to keep my head above water.

I've also seen postings and heard from people who require a constant regimen of Neupogen to keep their ANC at an acceptable level.

Then there are those who only seem to need an occssional boost from both.

The problem with Procrit over Neupogen is the time period it requires to demonstrate an effect.

The problem, as we have seen in the recent FDA release and postings here, is that the most common danger of using ESA's is when their boost throws one too high!

From the the research and discussions I have had on the risks of ESA's, like Procrit, is primarily what it can do to one's pulmonary/cardio system when Hgb goes too high or climbs to quickly.

If you begin to see a drop occurring once again, you may want to discuss the possibility of lower dosages to avoid a roller coaster anemia ride.

[merlino]

Thank you everyone for your response. I was told to be back next Monday to have my blood checked.I see the hemo on 4/5. If it drops below 11 they will give me a shot. I really should educate myself more on the sx of these drugs. Sometimes its just so very hard to deal with all this.

[FlGuy]

The ride continues, huh? If you go for blood stuff next monday (3/19), I assume it will include a cbc, with an hgb result?  Your next hemo appt is 4/5?  Let's say that hgb on Monday is 11.1, above the procrit line - but still dropping again.  It seems like waiting til 4/5 (17 days) is a a bit long to wait to see if it drops further.  With your history of hgb, it seems a certainty that it will drop further. And, if it drops a lot by 4/5 you'll be back in the ditch for a third time.  Until you get a little more regulated can you get a weekly cbc?

[merlino]

hello my friend. Yes, I will have weekly cbc's. We are closing in on the half way point. How have you been feeling? How is your family doing w/your tx? My children have declared me a total lunatic! I do find I have no patience at all. Home and at the office. As my HGB lowers my temper rises. Kids are doing pretty good - the ex is getting close -

[FlGuy]

Yeah, week 20 sounds pretty good.  Have to imagine, or hope, that you've seen the worst.  Have had a couple of rough weeks myself.  In fact, will probably be on the procrit trail tomorrow.  A drop of at least 1.5 pts in the last month or have been affecting me. More sleep, more headaches, less clarity of thought  But, much more gradual than the coaster you've been on.  Hope they get it solved for you so you can putt-putt on for the next 28. I've though about the ex situation and have thought about the additional drain it must be on you.  Somehow, internal strength comes, even in a time of physical challenege.  Good luck with all this stuff Merlino. At least the tx stuff will be in your past someday.