procrit neupogen questions

[snapplecandy]

Yee haw blood? Is the IVP Lasix, platelets? Mine seem to be ok. At least one less complication.Prednisone...I hate that stuff. Can make you nuts too.

We do have a wide screen tv but no movies...just basic cable. I had to tolerate football all day on Saturday. My daughter gets regular IVs and their infusion room does have access to full video library (next to hyperbaric chamber area) and wireless headsets. I told them they better keep up with the competing medical facility!

My daughters doc suggested I might need 3 units of blood (rather than 2) to allow the procrit to get ahead of this. So far, by the end of the week after transfusion, my hmg is barely above where it was before I got the transfusion. I dont understand the whole mechanism of how this all works but learning. Appreciate your insights as well as want full report on the facilities you visit!

[DougV]

SC,

IVP means intravenous push, or injecting into IV catheter.  Lasix to prevent fluid volume excess.  I was surprised.  Usually given when more than three units.  Just 20mg which is small dose given after each unit.  I went bathroom six times while unit two was infusing.  Is 35 minute from hospital to home.  Managed to make it to store near my house.  Ran in only to discover they had stretched the distance to the bathroom by several miles.  Managed to make it without running or embarrassing myself.  Forgot how fast that stuff works.

Older smaller hospital.  Put me in room with older gentleman, 83, kept passing out and was in for test.  His wife was 91.  She drove up to see him, had to park and walk from a block away.  Muscle tone, skin tone, mental sharpness of a much younger woman.  I would have to say she was healthiest and youngest looking 91 year old I have ever seen.  They live by themselves and she is primary caregiver.  I would have put her at 70 and only that if you told me she was older than she looked.  Anyway...

Small old tv, didn't turn it own, but free and very fast wi-fi (had ipad with me) and they fed me twice including pretty dang good pot roast.  Nurse had same instructors as I when he went to school and there were student nurses also from my school so they took good care of me.

http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/ care.

For now, still no reduction in treatment drugs, no Procrit, no neupogen or other rescue drugs, and no change in living style. 

Doug

[snapplecandy]

Thanks doug. Ill watch out for that IVP! Maybe that was why the guy next to me kept getting up every half hour to pee? Nice to visit with fellow professionals while there. Its alot of hours to sit there doin this. 91 and primary caregiver? that is amazing.

I dont have an ipad my and my damn kids spilled hot chocolate in my lap top. Im glad you got fed well....but no masseuse huh?

So you are just doing transfusions only now? Id rather just do that to be honest too. getting a few extra side effects with the add ons.

[alice]

i've been traveling and just getting caught up....
Sorry to hear you guys are going down the infusion road but it sounds you'd rather do that than Procrit! i gotta admit, i am NOT a huge fan of Procrit for a variety of reasons but at least it's still sort of working.  i went to the lab again this afternoon so should find out just exactly how well this little science project is working.  I feel pretty lucky to be squeaking by with 2 shots of neup this round and 1 shot procrit a week, which is less than I had to do last time, so maybe I'll be able to cut back some on the procrit too. I hope. As much as infusions creep me out, procrit and neuopgen aren't far behind. In 8 weeks of use,  the Procrit has only raised my hgb to 10.4 and produced the usual aches, pains, and headaches plus messed up cycles with accompanying migraines but definitely not as bad as last time. My mantra: it's not as bad as last time. Repeat repeat repeat....

Glad to hear you folks are handling the infusions/transfusions. Good job!

alice

ps-- what's the difference between a transfusion and infusion?

[DougV]

Shalice,

Well of couse they are different things  Transfusion is yesterday, infusion is today.  Oh plus of course infusion is far more expensive.  I hope that makes the difference clear.   

There may be some subtle linguistic difference, but they are interchangable.

Don't blame you on preferring the injections, transfusions got some of us here and blood screening is not perfect and receiving blood hasvits own risk.  But the simple fact that I reduced twice and relapsed twice will not leave me.  Receiving infusions allows me not to reduce and that is a huge psychic boost for me.  And of course Procrit twice has been less than effective.

Glad you are hanging in there.  Life gets so much better post Incivek. 

Doug

[snapplecandy]

Ok, Doug...I am confused about the difference between "transfusion" and "infusion". If I get blood today it is an "infusion"? and if I got the blood yesterday it is a "transfusion"? Infusion is more expensive? My brain just isnt working.

I agree with Doug, use whatever works for you and what you feel comfortable with. Unfortunately if the procrit isnt working and you dont want to dose reduce, you dont have many options and do what you need to do. Im doing both and not liking the additional aches and pains that the procrit and nuepo causing but will bear with it. I did not realize that procrit can cause migraines and now you have me wondering.

I had this horrible eye thing happened to me at work yesterday and I couldnt work anymore because of the kalidiscope effect in my eyes. It then followed with a headache. I never had this ever happen. I was worried about the interferon effects on the eyes and went in to see eye doc. She said it was a classic description of a migraine. Well my headache wasnt all that bad to describe as a migraine. I have been waking up everyone morning with weird eye stuff but it usually goes away after I am up and about.

I get my labs today too alice....so we will have to compare science projects....

[alice]

Doug-- re: dose reduction: tried it first time with riba and inf and it didn't work; tried tx again full doses and then some and it still didn't work so i am right there with ya on the no dose reduction-- it just ain't happening and i'll do whatever i have to do to stay on tx.

Snapple--- I should clarify my statement about migrtaines, tx and Procrit. Riba is notorious for causing migraines. I am unlucky and suffer migraines under the best circumstances and riba just makes them worse. i have estrogen-related migraines and Procrit makes my cycles (and migraines) more frequent. When I read your post referring to ''kaleidoscope" I immediately thought "migraine". if your doc thinks you're having classic migraines, I'd be all over this like white on rice. no joke. You do not want to let this one get out of control. I take several medications specifically to prevent migraines and I also have a variety of meds to take when I get the migraines. If you only experienced visual disturbances you are lucky but still I'd keep an eye on this one. Also, I recently saw a post of Hygeia's where she mentioned that Incivek affects estrogen metabolism. based upon my recent personal experiences, I have to agree with her! This has been a whacky few months.

Four more days of incivek... four more days...

alice

[DougV]

Alice,

8 more days then.  Four days post.  Least it was for me.  Woke up and Incivek, it's diet, and all sx, gone.  Having done this before the rest is gonna be easy in comparison.

Hopefully you will be the same and feel a lot better really soon.

Doug

[alice]

Doug-- re: dose reduction: tried it first time with riba and inf and it didn't work; tried tx again full doses and then some and it still didn't work so i am right there with ya on the no dose reduction-- it just ain't happening and i'll do whatever i have to do to stay on tx.

backtracking a little here... since I already briefly reduced my riba dose, I should should say that even so, I still was taking the full WBD of riba for my size.

[inquiring mind]

Soo close Shalice! I hope being off the incivek gives you a boost.

[DougV]

Oh good idea.  i did that as well my second time, started at higher than should have to give wiggle room. 

Is this going quickly for you?  For whatever reason this roundis zipping by.

Doug

[alice]

Oh good idea.  i did that as well my second time, started at higher than should have to give wiggle room. 

Is this going quickly for you?  For whatever reason this roundis zipping by.

Doug

yessiree, Doug, this round IS going quicker than last time. That last miserable mess is a very fine point of reference. I can always say, "It's better than last time!" 

[sista sue]

Alice-Hang in there! Soooooo close. 

My doc added Neumega today (4 more shots weekly for 2 weeks) in addition to the Procrit.  Is anyone knowledgeable about Neumega? She says this is not Nepogen but does more bone marrow transfer. So for the next few weeks I take 5 separate injections along with all my other meds??? Shoot me.....seriousley. Ya'all know I hate shots. Sigh *

As for the Procrit I am starting to feel better after 4 weeks....not huge but I can open a jar now and I am not as winded going up the stairs. Also energy has improved.

I still am not thrilled about injectibles. Doc says trans is in my future if my labs don't improve. But really what I want is the spa treatment like Doug and SC. A facial scrub, peddie, mannie and cucumber slices over the eyes please....no really, please!

[alice]

My doc added Neumega today (4 more shots weekly for 2 weeks) in addition to the Procrit.  Is anyone knowledgeable about Neumega? She says this is not Nepogen but does more bone marrow transfer. So for the next few weeks I take 5 separate injections along with all my other meds??? Shoot me.....seriousley. Ya'all know I hate shots. Sigh *

Sista-- Neumega is used to increase platelet counts-- not neutrophils.
http://www.rxlist.com/neumega-drug.htm
I never heard of anyone taking this while on tx for HCV and would definitely ask Hygeia.

alice

[snapplecandy]

Yeah between the transfusions, procrit, neupo, blood draws every few days, Im feeling like a pin cushion too. Ill ask the hematologist about this drug on Monday when I go in. Doug may know more about it too.

I finally saw a spike in my Hmg a few days ago after 3 weeks of procrit and 2 blood transfusions. Its up to 10.6 from 8.9 one week before. I didnt feel the same energy jump after the 2nd transfusion but mid-week my energy started picking up and seems to be getting better although I am still winded coming up the stairs. I feel like I can actually function again and not having to sleep so much. However my ANC tanked to super low 0.30 and they are bumping my neupo back to 2 x week. I saw this coming last week and warned them but they didnt listen.

I did learn something this week while there...if you are dehydrated your Hmg will show higher that it actually is because it is more concentrated. I am wondering how well this Hmg will hold since I did not get procrit this week since I went over 10.

Thanks for the info alice on migraines,etc. i will keep close eye on that.

I opened my 2nd to last box (1 week) of Incivek this morning...13 days and counting down. Doc said 2-4 weeks to totally clear the system. I so cant wait! I was thinking with all the itching I am getting, a nice salt scrub on my entire body followed by a nice massage would be nice........