procrit neupogen questions

[DougV]

Neulasta maybe?  That might make more sense?  It is similar to neupogen. 

Doug

[sista sue]

Neumega is my new poison, as Alice had posted in her earlier link. I will ask about the need for this med in conjunction with the barage of other injectibles to Hygieia. 

Procrit update: HGB has inched up to 10.7 but platelets are still at 47.

SC-Almost there sista! I am cheering you on!!!!!

 

[DougV]

What, may I ask, are your platelets?  Mine are 43 and falling, but there is no real concern at that point.  Only thing I got for it is a script for prednisone and that only for under 40 and signs of internal or external bleed.  (BTW for those who may not know, platelets are generally counted in thousands, so when you see 45 that is really 45,000.  Normal range is 150,000 - 400,000.)

You are literally the first I have ever seen get a colony stimulating factor for platelets and treatment.  Gotta know more, please.

What was your platelet count before tx?  Any history?  Liver state?  Ok if I am curious?

Doug

[alice]

You are literally the first I have ever seen get a colony stimulating factor for platelets and treatment.  Gotta know more, please.

Me too, please! I've never heard of anyone taking anything for platelets on HCV tx.  My platelets were 50 last week, up to 61 this week. They got down to 40 last tx and, as I've mentioned previously, doc said she'd put me on Eltrombopag if necessary. She said the Neumega is nasty stuff with many, many side effects. (Eltrombopag is pretty nasty stuff, too, but at least it's a pill and not quite as nasty.) Decreasing the interferon dose is the usual response for low platelets. 25 (25,000) is a critical point but lots of docs seem to get pretty antsy around 50. My experience is that platelets-- like the RBCs and WBCs--- bottom out and then kinda bounce around a little, maybe even start to increase after awhile.

Please forgive my curiosity. i'm not questioning doc's ability-- I just have  a pathological need to understand! 

alice

ps-  I have heard of Neulasta being used to increase neutrophil counts. Neulasta is  pegylated filgrastim (Neupogen is filgrastim without the pegylated part-- the pegylated part makes it last longer in the body, just like pegylation of interferon makes the interferon last longer in the body. The benefit of pegylation is that it reduces the frequency of dosing-- you don't have to take so many shots.

[snapplecandy]

Alice,

I didnt see hematologist but I did ask the nurses at the cancer center where I get all my shots. They have heard of something similar but suggested they know it by another name. It is pretty new or not as commonly used. I do see the hematologist on thursday and hopefully will remember to ask him directly. I know it doesnt make sense but my platelets go up after neupogen. It did it again for the 2nd time this past week. These drugs sound pretty nasty...it sure adds a layer of complication I wouldnt want. You are a brave soul!

I didnt have procrit or transfusion last week since I was at 10.6. Yesterday it was back to 10.0 and I assume dropping again. Short lived over 10.

[sista sue]

Boy you guys have me concerned....My platelets are at 47 and have been 47 for 4 weeks. My ranges before tx were normal. Live biopsy was level 1 prior to tx, not too bad (I think) Other stats wbc 1.5, rbc 3.0, hgb 9.7 (this has bumped up this week to 10.7), hct 30.3.

This Neumega stuff was so new they had to scour the country to find it and get approved by insurance...I assume expensive.

I did not ask Hygeia like I should have but will right now....

Yee Gads....

[snapplecandy]

sista,

that is strange your platelets doing this  considering your stage. Why do we have to have all the real "unusual" more difficult problems? Whoa is me.

Im curious about this new stuff you are speaking of. No doubt it costs more than procrit!Forgot to ask hematologist about it today. Darn.

Mine Hmg bumped to 10.6 last week so no procrit. Monday it was 10.0, today down to 9.0. I can feel it coming on. Procrit today and neupo and more labs Monday. I think Im heading for another transfusion. This stuff is hard to keep stable.

[DougV]

SC,

One point in under a week?  How long on Procrit now?  Finally how much longer on Incivek?

Be curious to see what happens when you lose the one drug.

Psst, just between the two of us, I know how many sticks this adds up too, lab, type/cross, IV access... Do you ever start thinking a port would sure be mighty handy. 

Hang in there.  It gets old but they are keeping you high enough to avoid serious issue.

Doug

[snapplecandy]

I only have one arm that then can get blood out of so all they have to do is look at my arm and x marks the spot to draw blood. Hadn't though about a port yet.Hmmmmm.

I am curious to see what happens when I stop the PI. I sure hope it gets better but I always was afraid what the riba would do given my history. I think I have had about 5 weeks of procrit (1 x week) with 2 transfusions (week 2 & 3) and was at 8.9 when I started getting down to 8.6 when I started asking for transfusion. Late in week 4, I finally saw a bump to 10.6 (last week-Thurs) so they didnt give me procrit last week.  By Mon 10.0, Thursday 9.0. Procrit today. Is that common to see that kind of drop so quickly?

[DougV]

Looks like drops of 1+ per week when on Incivek are not terribly unusual. 

I don't know, not scientific, but seems as though lot more than normal are seeing issues with blood chemistry.  I don't recall platelets being problem, lower sure, but now 40's seems common.  White cells maybe not much different.  Hemoglobin too, seems Procrit is popping up a lot.

Love to know what's happening to supplies of Procrit on a national level.  They don't stock it by 55 gallon drums.

This is going to be one expensive treatment when exotics are factored in.

Doug

[snapplecandy]

Yeah, wish I would have bought stock in Amgen a long time ago.

My wbc crashed to 0.3 when I go from 2 to 1 x week nuepo but is managible. My platelets started at 220 and have gone down to about 140. Its the strangest thing, with the nuepo I see a consistent rise now in my platelets up to 170. Go figure. These drugs are doing such weird things.

[Icy]

Hi all!
We are joining the Procrit  party :uncertain:They put my husband on it after a week of reduced Riba(to 400 mg a day)-didn't do any good,his hmg down to 9.5
This drug got scared the hell out of me after I read all the complications and the main one-"can cause death"
I gave him first shot today.He didn't want to take this,because he says he is fine...He says he doesn't feel any different  (the doc said-are you really?) Well,yes really,except when she mentioned if he is out of breath,he said yes -a little...They said they no longer do blood transfusions.This drug is soo expansive!!! :brainfog:Over 2 grand and our co-pay is $200...I don't know how he works 10 hour day(on his feet almost all day long...)
Do you guys work long hours?

[DougV]

I fortunately only do a single twelve hour day per week at clinical and I go to school eight hours a day for two days a week.

Here's the deal on the Procrit.  Your hubby probably doesn't feel that bad excepting out of breath at times.  And you tend to automatically compensate by simply moving a bit slower, BUT, Procrit takes it awhile to have impact, in the meantime his hgb will continue to decline.  Hopefully by starting it now his hgb will begin to recover before it dips too low to be uncomfortable or worse.  If he waited until he was gasping for breath like a fish out of water it would be too late.  Will be almost certainly at least two weeks before it will do anything significant.

Oh while everyone is different, I can function reasonably well, bit fatigued at worst, until hgb drops below 8.  So your hubby is being honest when he says he is fine.

Interesting about the infusions.  That is all I get when my hgb drops too low, had one couple weeks ago.  But I also have a documented history at Procrit being ineffective, and my GI is great at working with me on stuff like this.

Tell hubby howdy.

Doug

[alice]

great response, Doug.

Icy, I have taken a lot of procrit over the years and I'm on it again now-- I am fine. Yes, Procrit does have some scary side effects but they are rare and your husband will be monitored closely while he is taking this med--- if he isn't, make sure he gets his lab work checked regularly. I get a Complete Blood Count (CBC) with a differential every week. that test is simple and relatively inexpensive. When his Hgb starts to rise, his doctor may start "tweaking" his dosage so that he takes as little as possible. For example-- my Hgb has increased from 8.5 to 11.4. It took 7 weeks to get there and this week I am skipping my Procrit shot completely. I have never had a transfusion before but some people around here have had numerous ones. The scary side effects of Procrit typically come about when it is taken unnecessarily. my Hgb target range is 10-11.

I worked all thru my first tx and for 10 months of my 2nd tx. Sounds like your hub is a trooper and is hanging in there. 

Oh yeah... I get my procrit free thru the johnson and Johnson patient assistance program. Send me a msg if you'd like some help with that. It was fairly easy for me to apply. My procrit is delivered to my doc office.

take care.

alcie

[inquiring mind]

Procrit is going to be delivered on Tues. (finally) and I'll be taking my first dose then. No education on the part of the nurse, and she wasn't even going to schedule me for a follow up blood draw until I insisted on it. Cheese and crackers. Still don't know when they are going to up my riba, I have been at 600 for five weeks now and getting pretty nervous about that.