procrit neupogen questions

[alice]

I suppose we should start a thread on use of procrit,etc.

Alice I had labs drawn yesterday and this past week we pulled back to one shot of neupo instead of 2 x week. My platelets go up when I have 2x a week, they drop when just one shot a week. I may have found my sweet zone with nuepo) Dont know if you have seen this effect with nuepo?

I've never seen neupogen affect platelet levels. neupogen is called "granulocyte colony stimulating factor" (granulocytes = neutrophils) it should not affect platelets. Interferon causes platelets to be low. Mine are 50 now and I'm still doing 2x/wk neupogen. Eltrombopag is an FDA approved drug used to increase platelets. It can cause liver damage and has significant side effects. My doc was involved in some of those clinical trials and I'm she told me last tx that she'd put me on Eltrombopag before yanking me off tx. She said she'd let me get as low as 25 (that is really dangerously low.) Like all blood counts, it's often more important to look at trends than the absolute number. Platelets very often stabilize, just like neutrophils and RBCs will.

My Hmg was 8.6 (could barely function) last week when the gave me both shots (EPO and Neupo) and a transfusion.I had a good weekend and on Monday started to feel my energy wain again. My Hmg was at 8.9 yesterday where I was two weeks ago before I crashed to 8.6. I dont think the procrit is doing anything for me and its been three weeks. You would think it could hold the Hmg at bay with a transfusion after 3 weeks?

max effects for procrit are seen between 4-6 weeks Until it starts working, you are still going to experience the effects of anemia. Regardless, the riba is going to continue killing your RBCs. Don't give up yet. After 4 weeks of procrit weekly shots. my hgb  was at 8.5, I cut my riba dose, and did an extra shot of Procrit, then the next week I was then 8.6 then 10.1, and now 10.4. (I get weekly blood draws.) This is pretty much what happened to me last time and then I hung between 10-11 hgb for a year+. It seems that I actually get kinda used to being anemic-- I just move real slow, don't stand up fast, don't really do much of anything and feel kinda stupid most of the time.

You might benefit from another shot of RBCs but don't exp[ect it to last long-- I think Doug was getting weekly infusions last time he did tx.

alice

[inquiring mind]

Good thread. I'll be joining the Procrit train hopefully next week, so prepare to be bombarded with questions Shalice 

One thing I'm a little worried about: blood clots. I quit my oral birth control pills already (not advised to, I just feel more comfortable not taking them since they can up risk for clots as well) but the fact is that I sleep like 12 hours a day and I know it says to tell your doctor if you are going to be traveling or less active...hard to get less active than I already am! My platelets are at 186 so maybe it isn't something I need to worry about too much.

[DougV]

IM,

Your platelets are within normal limits so yeah scratch those off the list.

Shalice,

I was infused every third week with three units.  RBC last 30 days but at that time my counts fell 1.0 weekly.  Platelets last 10 days max so are primarily used if you need surgery and not for daily living.  I am finding out they don't worry too much about them until 20/20,000 or less.

50/50,000 or less bleed risk and for females your monthly cycle can be a problem.  Extra soft toothbrush, no flossing. 

Have appointment with hematologist Monday and if something changes I will post but appears we are ok with platelet counts being pretty dang low.

Doug

[hope life]

As you should know Alice procrit doesn't always work enough on some people 5.2 was my lowest on hmg  I think I had 10 transfusions give or take. call me

                                     hope life

[inquiring mind]

Yeah Doug, not worried about platelets being low. Worried about side effect of clotting caused  by procrit. Thinking that maybe since 186 is on the low side of normal, maybe I won't have to worry about clotting too much?

[alice]

As you should know Alice procrit doesn't always work enough on some people 5.2 was my lowest on hmg  I think I had 10 transfusions give or take. call me

                                     hope life

Hope I was thinking about you when I wrote that post! Man, you've had the lowest hgb I ever heard (not that I'm any expert) but God, I just don't know how you did that. A couple of weeks ago I  was starting to get worried that I might be like you and Doug and not respond to Procrit--- that had me really worried, actually. I sure hope I can stay where  I'm at now  for the rest of this little trip.

alice

[sista sue]

Good post Alice....

Dang HL you make the rest of us feel like woosies. 

I am feeling no better after 4 injections of Procrit (did I mention I threw away 3 of them @1K$ per?....oh well, my bad) I will keep plugging away for now, begrudgingly.

I am going to really question whether or not more Procrit is indicated after labs results next week. Some of our Hepa brothers and sisters swear by the trans option....

I just want to walk up a flight of stairs without being so winded that I thought I did a marathon or spend most of my weekends in/on bed. Not sure Procrit is the answer....

Boring, tired, bitchey and the rest of those nasty dwarves.

[snapplecandy]

5.2? Yeah I do feel like a whiner now! Were you even moving at that level?

Bored, bitchy & tired....im there with ya sista! Cant believe you thru those away!

I did have my 2nd transfusion yesterday (2 units) and the nurse said that she was surprised I hadn't seen some effect from the procrit by now. Ill give it a few more more weeks. The transfusions do help the winded feeling although only temporarily and then it slowly creeps back. Something is better than nothing and I try to get stuff done while I have a small window of opportunity. I suspect I will get weekly transfusions for a few weeks until I stop incivek in 3 weeks. Im at 800mg riba and dont want to dose reduce or consider any changes until after I stop incivek. I cant seek doing these transfusions weekly for the duration of treatment so I will have to re-evaluate.

Which begs to question what others in our situation are doing after stopping incivek and riba still kicking there butt. Do you consider another dose reduction? I was hoping after incivek it would get better and I could go back to 1000mg of riba. others have thoughts, experiences on this?

Yes, these drugs we are on keep driving down our numbers and then we have to use something else to push them back up. I thought it was odd my platelets went back up after neuopo but it did happen. Ill test that theory again to see if it was just my body trying to regulate it on its own.

[DougV]

SC,

Dose reduction never had impact on me, never even impacted rate of decline.  On Procrit, make sure you are getting iron, folic acid, and B12 as appropriate.  Gotta have building blocks ya know.

Remember as you go through this...

Throughout time women have paid a fortune for the anemic pallor you get for free.

Doug

[sista sue]

Doug-Hilarious! 

[alice]

Which begs to question what others in our situation are doing after stopping incivek and riba still kicking there butt. Do you consider another dose reduction? I was hoping after incivek it would get better and I could go back to 1000mg of riba. others have thoughts, experiences on this?

I will continue tweaking the Procrit dosing as long as it's working before taking another riba reduction--- but I *am* banking on the Hgb going up some after the incivek (and only 8 more days of that!). I did two procrit shots in one week and it was doable so if I have to increase, I will. I confess-- I am seriously weirded out about receiving blood. I know that even with the very best managed anemia possible, we're still going to be dragging. Procrit is specifically used to reduce the need for RBC transfusions and dose should be maintained at minimum level to avoid that. it's not intended to maintain Hgb at normal levels. http://www.procrit.com/

alice

[snapplecandy]

yes that is very funny Doug...

Thanks for the tips on other vitamins to assist the procrit. Honestly taking any more pills turns my stomach as I feel my whole life seems to revolve the taking of these drugs. I have had problems with taking iron supplements before and have little stomach tolerance for many supplements. I hate to push my nausea and stomach and disrupt the balance...I used to like chopped liver...I was thinking about heading down to the jewish deli to find some. I do have some liquid B12 and will seek out some other ways to get these supplements. How much folic acid do U use? Perhaps a good multi might be helpful?

Alice, I guess I am hesitant to use more procrit (more than 1 x week) in addition to neupo because of the sides. Although I understand your fear of transfusion, I guess Im not so much. I tend to want to keep more drugs out of my system if possible.
Unfortunately, procrit does not appear to reducing my need for transfusion. So far. It cant even maintain un-normal levels in my Hgb. I plan on talking to doc though about additional procrit as an option going forward. I agree, even with best managed anemia, we will be dragging no matter what.

Im banking on Hgb going up with incivek ending....2.5 weeks to go......

[DougV]

On hgb decline post Incivek...

I am sitting in hematologist office now, ten days post Incivek, to arrange for infusion. 

At least so far stopping incivek does not help. 

Thet want me type and match today, infuse in am.  Think I can swap clinical so should be good.

Doug

[snapplecandy]

Not nice to hear of course Doug. Are you on full dose riba? Still using procrit?

Im setting up regular weekly transfusions for awhile. Im beginning to like the infusion room at the hospital. We have nice views, they bring me warm blankies, and I can have all the room service I want. Now if I could just get them in to do a spa pedicure and massage....

[DougV]

What, no pedicure? What kind of barbaric infusion lab do you go to? 

I'm going new place tomorrow.  Small regional hospital in Dade City.  They just give you a private room as they don't have an infusion lab.  I get two unit PRBC with IVP Lasix.  Yee haw blood and urinating, oh joy.  I am assuming wide screen TV with first run movies and deep tissue massage.  Dang I have to skip the champagne.  Will let you know if facilities disappoint. 

We are anticipating two units every four weeks based on current trends. 

Got prescription for prednisone for platelets if needed for bleeding.  She said if platelets drop below 40 and I see any sign bleeding, call and start taking on a four day descending dose.  Have to look this one up, can't figure mechanism of action.  She said they work fast.

Time to go eat.

Doug