after a week of no procrit, hemo down 1.3, Dr says continue, without procrit, I say use the procrita

My nurse just called about my bloodwork with my dose of riba upped and procrit discontinued for a week, She said hemoglobin had dropped from 12 something to 10.7 according to the doctor and I don't care what the numbers say, I can feel the same symptoms not as bad yet, but can feel it them on the way.

I can see where this is going, I get down to 9 or so and after being miserable they start me back on the procrit.

I really, really, don't won't to go through that again and feel it is unnecessary, this is the same dr that filled out my disability for my retirement that made it sound like we just have a cold when going through tx.

I am thinking that I am going to continue the upped riba, and do the procrit injection also.

Any opinions or experience on this is welcome.

Peace and Health

[Fl_Gator]

what week of tx are you on and how long have you been UND?

[nygirl7]

Unfortunately this is what 99% of us have had to do.  By 9 you are pretty well miserable but doctors just don't want to start you until you are under 10.

Procrit costs about $6,000 a box of ten.  I was using two a week so it was 6k for only 5 weeks.  Insurance doesnt' like to pay it so they make us suffer.

It will take you about 2 - 6 weeks for it to work so it's really not fair.

I would advise that you get that docs office on the phone with the insurance company NOW to start getting your approvals through in advance.  My company wouldn't pay for Procrit they would only pay for Epogen. Then they had another problem. Thank God the pharmacy I used figured out how to make it go through. But still more days had passed and I was well under my 9 and into the 8s before I finally got it.

also, you have to make sure after you do get it you are getting frequent PCRs. AT first the one shot a week only kept me at 9. So we had to go to twice a week @ 40,000. Then it went up way too fast and I had to cut back. So we figured it out and every 5 days kept me right at about 10.5

You will be surprised.  The number that is hurting you now will seem just FINE later on.  Going down it's bad but going back up..........even to a 10.5 your body adjusts and thinks that is just great.

(PS I did double dose riba for most of my 72 weeks - THAT is why I needed to so much epogen and had a six point drop in ten days. I don't know what would have happened if I hadn't used it since I barely made it to SVR as it was so it is a big gamble and not so easy to do).

Good luck headshop!

[jdwithhcv]

I agree with your plan.  I took procrit for a while, got my hgb up a bit, stopped procrit and had it tank again really fast.  The second time it took much longer to respond to the procrit and my doc just said take it for the duration.  Just watch hgb, if it gets too high (not likely) there's danger of clots.

jd

[can-do-man]

I take it your already on procrit??? If you are then to stop it at 10.7 seems low. Around 12 is when mine would have stopped it. But i never got even close to that.

Now my hepo wouldn't start procrit till i got down to 10. Good to hear from you and best going forward.

[headshop]

I am on tx week #19, I was on Procrit for 3 weeks felt better almost immediately. I was at 9hemoglobin when I started. I looked back my normals were around 15,

I haven't had any for about 2 weeks, my riba was upped 200mg towards my regular 1000.

I was UND at 5 weeks and up until 7 or 8 I was just taking 1000mg of riba when I took my interferon.

I received a shipment of procrit this Tuesday.

I can feel the sx of anemia coming back, headaches, insomnia and irritability.

[can-do-man]

My hepo started me on procrit early on in tx. Never dosed reduced and stayed on procrit weekly even 2 weeks past my 86 weeks of tx.

You were und at week 5, thats a great sign. And one i would use with your doctor. I would work very hard on my doctor to stay on procrit and no dose reduce.

[Fl_Gator]

my understanding...
you are wk 19
und at week 5
at some point took a riba reduction
at some point started procrit
after your hgb came up they took you off procrit and increased your riba?

can you keep your riba reduction? won't it give your hgb a chance to rise on it's own.

Since you have been UND for so long now, What would be the ramifications of leaving your riba low while your HGB comes up...

I took a riba reduction when my hgb hit 10.4. Because I am in a study that doesn't allow procrit the guidelines were clear cut NO Procrit...but my hgb did rise to 11.something. Then I was taken off the meds at 24 weeks according to trial protocol...

I know that I have an added medication but my point is that the virus has been und for so long now wouldn't it be hard for the virus to replicate while you still have a daily barage of riba? or would you still be at risk for relapse?

Gator?

[can-do-man]

I guess then i'm confused as to why any doctors give rescue drugs??? Once one becomes und then why not just reduce the dosage then add on another drug? And why is it important that they say we stay on full dosage thur out tx???

Just wondering out loud here

[headshop]

I was down from 1000 to 6000 riba a day, They also reduced my interferon from 180 to 135, but I just got worse, I had to go over their heads or rather to someone that would act on it to get my Procrit.
Now I am on 800 of riba a day, still 135 of interferon, when down real quick to 10.7 fro 12 something hemoglobin.
The main thing is I can feel all the symptoms of anemia coming back, which I'd have to say was the worst time of my treatment, and also missed a lot of work. I'd have to say it was really horrible.
I am going to inject procrit tonight along with my interferon and riba.

[Fl_Gator]

I'm sorry to hear you feel so bad...I can relate a little.

is the procrit issue with the dr or the insurance?

I hope you get this straightend out...I am off tx for a couple of weeks now but I don't feel any better...probably because of the bronchitis I found somewhere.

anyway...I wish I could offer solutions...I'm still trying to figure out about the riba from my own dose reduction.

Hang in there...I hope that by bumping this up that one of the more knowledgable members will offer some solutions.

Gator

[geterdone]

Sorry to hear feeling so bad and am wondering are you self injecting or do you have to go to the doctors office for the procrit?

Jasper

[Marcia2202]

I see that you still dealing with the same dang doctor... That place has been giving you so much trouble, I thought you were changing doctors?

You have the procrit at home right? I would resume using it.

I remember you cleared at 5 week, even though you were practically on mono therapy due to having misunderstood the dosing instructions. You were taking 1000mg riba once a week, instead of every day, right? So obviously you are responding very well to the interferon.

[headshop]

I am injecting myself,  I injected interferon and procrit tonight along with ribavirin.

Yea I was and still am UND since week 5, they were actually supposed to test me for my VL at week 4 but that was messed up.

I have contacted and dropped all and I mean all my records and correspondence to another Dr. and will see him this Wednesday hopefully to continue tx there.

[Marcia2202]

good news!!!!

Good luck with the new doc!

[geterdone]

This is the second time here recently that I have heard these doctors jerking people around with the procrit and I will tell you it is a damn shame to make people suffer needlessly. It is quite obvious that some doctors do not understand or are inexperienced themselves in treating people with Hepc and do not pay attention to their patients when experience is presented to them first hand and the symptoms associated with these drugs we take. It is even worst when hearing they follow protocol so stringently as to cause more pain and injury to the already ill patient.

I had a doctor who was more interested in skirts than pants but was proactive enough to keep me a head of the curve and started the procrit at week five because of the tanking blood work, maybe not as extreme as others but he did say, you will be on this until the end of treatment or until something changes for the worst. In time my cbc’s found a comfortable range in which I could continue to work, very slowly but stayed active enough to keep a head of the depression.

You are on week 19/20? And you have been on the procrit long enough to feel better only to have it pulled out from under your feet and the cbc’s prove that so now it is time to take a little charge of things yourself. You as I have been on the board for some time and have read the many differing views surrounding the use of the procrit, I was given the prescriptions including procrit for X number of weeks so I had “What I needed” to keep me steady during treatment and am sure your scipts are the same. So what is stopping you from… Feeling Good… Real Good… that’s a fact jack.

http://www.youtube.com/watch?v=rEm6B1AXEso&feature=related

geterdone

[geterdone]

and the Procrit will have you back up on your feet and the reds will have you doing this in no time, Good Luck!

jasper

http://www.youtube.com/watch?v=oZPIU0wGVkQ&NR=1

[Isobella]

At this point, with the problems you have had with this doctor-I'd be sticking my tongue out at him-while injecting the procrit and telling him "you're not the boss of me!!!"

But then you are probably nicer and more mature than me, lol!!

Good decision on the procrit....I hope it keeps you up where you need to be.

Best of luck with the new doc, too.

Izzy

[Xenigma]

IMO
I would resume the Procrit BUT do NOT inject the same day as
the interferon.  Always space the shots 3-4 days apart.  (Like Interferon shot on Friday and Procrit either Monday or Tuesday)
The sx's will be better.  When you hgb get's up to 11's
take the Procrit ever other week (as long as you donk tank reall fast)
Drink a lot of water and feel better
enigma

[geterdone]

LOL! good advice to follow. Here was my take on the procrit and the additional side effects that came with it when I first started using it and the correlation between each of the meds being taken. It would seem that taken both the interferon and procrit at the same time defeats the purpose of the procrit because it is hammered before it gets started, jmo.

jasper

Always space the shots 3-4 days apart.  (Like Interferon shot on Friday and Procrit either Monday or Tuesday)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

5/03/07
Something to think about and talk over with your doctor and if you have to start procrit as well, read on.

Is it better to take the two shots, (interferon and procrit) on the same day or the day before, or the day after the other or spread them apart by a couple of days? I started the interferon on March 12th and slugged through along with ribavirin until April 14th when I started the Procrit as well. I do not know how many here do them both at the same time or separate them as I have now done. I would like to know if this has ever been discussed on the board. The reason I’ve brought this up is, is it better to take the procrit say on Wednesday so your body can build up the red blood cells, and then take the interferon on Friday which knocks down the red blood count along with the daily intake of Ribavirin in between the interferon shots.

5/03
I looked at the more common sx of each drug listed below and it is no wonder were half crazy. I’m looking at it this way, in the beginning I was and am now taking 600mg of the ribavirin at 7am and then 600 more at dinner around 6pm. Then once a week a shot of interferon in the evening after my last 600mg of the day on Friday. Now, because I’ve been ravaged, beat up, shot up, and left for dead after a triple dose of pure hell on Friday, I passed out some where between the couch and the bedroom and wake up somewhere in the beginning of the next week, lol.

Ribavirin /
nausea, vomiting, headache, trouble sleeping, fatigue, diarrhea, mood changes, flu-like symptoms cough fever.

Pegasys /
nausea, vomiting, headache, trouble sleeping, tired-weakness-fatigue, diarrhea, mood changes, flu-like symptoms cough fever, sore throat and weight loss.

Procrit /
nausea, headache, diarrhea, fever and cough.

Ok, after saying all that I guess the point I’m trying to make is after being on all these heavy drugs with the same side affects and working just wasn’t cutting it (I needed a way at least for my own sanity) to started pulling the Ribavirin  and the Procrit apart. I’ve been able move the procrit back three days before taking the interferon and am in the process of moving it back one more day to Tuesday. It is starting to work I feel better and less hung over, less anger management and am able to make it through the day better as I proceed forward.

5/05
I guess the point I was trying to make is, yes we all have to do these Meds in order to get better and the sx ***** but is how we take the Meds. The frequency and side effects of each make up the whole. So instead of having all the side effects hit us at once or in a short duration and in sometimes triple doses, spread it out as much as possible to lessen the sx to a minimal. To smooth out the ups and down.

[geterdone]

Correction: should have been pull the Interferon and Procrit apart... in second to last paragraph.

jasper

[lmr28]

No recommendations on the procrit.  I dropped down below 8 and still did not get it from the PA!  
I did want to comment on this total lack of understanding by the doc's and PA's working with us during this very REAL CHEMO therapy...  I, too, was treated as if I did not "tolerate" it well.  Like I was somehow "over-reacting".  Struggled with pain mgmt.  Was treated- as you said- as if I had a common cold, and was just a big baby.

I am looking at another round, but will definitely go to another provider this time!!!!
hang in there, and do what I couldn't- ADVOCATE, long and loud!!!!!!  Make yourself heard.  or have someone else help- but get YOUR needs met!
good luck,
~lorraine

[lmr28]

No recommendations on the procrit.  I dropped down below 8 and still did not get it from the PA!  
I did want to comment on this total lack of understanding by the doc's and PA's working with us during this very REAL CHEMO therapy...  I, too, was treated as if I did not "tolerate" it well.  Like I was somehow "over-reacting".  Struggled with pain mgmt.  Was treated- as you said- as if I had a common cold, and was just a big baby.

I am looking at another round, but will definitely go to another provider this time!!!!
hang in there, and do what I couldn't- ADVOCATE, long and loud!!!!!!  Make yourself heard.  or have someone else help- but get YOUR needs met!
good luck,
~lorraine

[lmr28]

No recommendations on the procrit.  I dropped down below 8 and still did not get it from the PA!  
I did want to comment on this total lack of understanding by the doc's and PA's working with us during this very REAL CHEMO therapy...  I, too, was treated as if I did not "tolerate" it well.  Like I was somehow "over-reacting".  Struggled with pain mgmt.  Was treated- as you said- as if I had a common cold, and was just a big baby.

I am looking at another round, but will definitely go to another provider this time!!!!
hang in there, and do what I couldn't- ADVOCATE, long and loud!!!!!!  Make yourself heard.  or have someone else help- but get YOUR needs met!
good luck,
~lorraine

[lmr28]

No recommendations on the procrit.  I dropped down below 8 and still did not get it from the PA!  
I did want to comment on this total lack of understanding by the doc's and PA's working with us during this very REAL CHEMO therapy...  I, too, was treated as if I did not "tolerate" it well.  Like I was somehow "over-reacting".  Struggled with pain mgmt.  Was treated- as you said- as if I had a common cold, and was just a big baby.

I am looking at another round, but will definitely go to another provider this time!!!!
hang in there, and do what I couldn't- ADVOCATE, long and loud!!!!!!  Make yourself heard.  or have someone else help- but get YOUR needs met!
good luck,
~lorraine

[headshop]

I took the procrit last night with the interferon, and do think I will move it to the middle of the week, an actual caring staff member from my present provider , I leave out the care part, told me that the interferon actually peaks on Tuesday if you take it Friday.

[can-do-man]

Its the Neupogen my hepatologist told me not to take on the same day as the interferon. He said procrit was ok but suggested i take it the day before. If you do some reseach here you will find many that was told that also. Either way you will be fine... Best of luck

[can-do-man]

by jmjm530


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jmjm530
Male
Member since May 2005  



, Jul 27, 2008 01:35PM
I took my Procrit injection right after my Peg injection. Logistically, a lot easier to do it that way because you only have to remember and "set up" once with bandaids,
sterile field (paper towel :) ), etc.  That said, if your Procrit arrived on Monday and your Peg shot night was Friday, then you might want to inject the Procrit Monday so it would start to work sooner. As to maximizing its effect by taking it in some relationship to the interferon, Im unaware and my medical team gave me no instructions in that regard.

[can-do-man]

by indyjo


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indyjo
Member since Feb 2003  



, Jul 27, 2008 05:40PM
My nurse said take the day before peg. Says it "won't work" with any other schedule. Don't ask me why

[geterdone]

Correct, but when does the interferon peak if you also took it Friday night? So if you took the procrit on Tuesday you would have it in your system for three days and close its maximum peak before your next interferon shot which also hits it peak around Tuesday. Sorry, it has been awhile since I had blinders on and totally focused on the micros of the meds but times has passed and memory has closed some doors. I am sure merryBe or others will chime in with the more specifics about the maxc's of the meds.

jasper

[headshop]

Another reason to find another care team, my doctor said when she wanted me to take the procrit to take it the same night. My nurse offers no help advise or concern wise. She takes blood and tapes up my whole elbow, ouch. She seems to be more of a  forgetful message taker and giver. Never communicates with any advise or tips.

[geterdone]

I am wondering if this is why all the up and stop of the procrit?

jasper

Medscape Alert
Safe Dosing Revised for Procrit Based on Hemoglobin Levels


Yael Waknine
Information from Industry
An important therapy in the evolution of cancer treatment.
Xeloda (capecitabine) offers proven efficacy in the treatment of adjuvant stage III (Dukes' C) colon cancer, mCRC, and mBC.
Important Safety Information. Prescribing Information.  


Dec. 9, 2004 — The U.S. Food and Drug Administration (FDA) and Ortho Biotech Products warned healthcare professionals via letter of important information regarding the safe dosing of epoetin alfa (Procrit), according to an alert sent yesterday from MedWatch, the FDA's safety information and adverse event reporting program.

The new prescribing information advises of safety changes regarding hemoglobin rate of rise and target levels when epoetin alfa is used in the treatment of anemia resulting from concomitant chemotherapy in patients with nonmyeloid malignancies, or to reduce the need for transfusions in patients requiring a minimum of two months of chemotherapy.

The FDA recommends that dosing be interrupted and modified if hemoglobin levels increase at a rate greater than 1 g/dL over a two-week period. Patient-specific hemoglobin target levels may range from 10 to 12 g/dL but should not exceed 12 g/dL in men and women. Dosing should be withheld at hemoglobin levels of 13 g/dL or greater. These recommendations apply to both the 150 IU/kg thrice-weekly and the 40,000 IU once-weekly epoetin alfa dosing regimens.

These safety changes were approved based on the results of recent investigational studies showing an increased incidence of adverse outcomes (including increased mortality and thrombotic vascular events) in patients treated with epoetin alfa or other erythropoietin products to achieve high target hemoglobin levels (>12 g/dL) beyond that required for correction of anemia. The FDA deemed these results to be relevant to the dosing and administration of epoetin alfa based on the similarity in mechanism of action among erythropoietin products as a class.

The FDA has also provided additional guidance for administration of the once-weekly dosing regimen for epoetin alfa, noting that the initial dose of 40,000 IU may be increased to 60,000 IU after four doses if, in the absence of red blood cell transfusion, the hemoglobin level has not increased by at least 1 g/dL. The FDA notes that patients not responding to four weekly doses of 60,000 IU are unlikely to respond at higher doses of the product.

[IAmTheWalrus]

Man, do I relate to you. I have the same thing going on. The procrit really helped, and my HGB came up fast, so the doc discontinued the procrit. Since then my HGB has dropped back to about 10, but as long as it is not below that, the doc says no procrit. I even have one of the 40k unit vials left in the fridge. I have all the old symptoms back, breathlessness after 3 stairs, dizzyness on standing, orthostatic hypotension (86/63 when standing). I feel like krap. I have 10 more weeks to go.

Best luck to you,
Brent

[nygirl7]

My doc was very caring and concerned and saw the reason not to quit the procrit but to manage it in a different day order so it would not go too high (as per black box warning) or too low.  It took us a while to figure it out but when we did it kept me at 10.5 which was fine.........I just don't understand the doctors that say "ok now stop and when it goes under ten you can start again", not at all.

I seriously don't think it matter which day you take it.  It's not like an energy shot which will 'peak' at a given time........it has a huge job to do getting to the bone marrow and growing new reds.  When I went to the once every five day schedule.......the day varied week by week and it worked just fine.

Make sure you are getting frequent PCRs though so you can monitor in case it does go too high and then cut back if you have to. Twice a week @ 40 was too much for me and once a week at 40 was too little.....that is how we came up with 40,000 every five days.

Good luck.

[Deb_c430]

ditto here,  i am still on it it but stopped working in a great way.  they lowered my riba to 800, from a thousand, that has seemed to help! I still have till May/June to go

good luck