I can't remember my last numbers right now, but my Doc and I have been toying with my meds to get the anemia under control. I began Procrit 9 weeks ago, after 2 weeks had to double the dose. We cut my riba down by 1 pill (of 6 taken daily). It seems I've lost so much weight we're having trouble figuring out the "doable" dosage of both. We've now cut the riba by 2 pills @ day and just today I went for labs to see if that's working. Doesn't feel like it........yet. My advice would be to make sure your Doc stays on top of things, and ASK QUESTIONS!
he started me on Neuprogen X2 a week, Just cut it back to one injection a week.
I do not remember my numbers now either, I can look them up later.
I am also on procrit for anemia x2 a week.
I think he gave me to much neuporgen! A lot of Doctors will let your WBC go down to almost nothing. Even in Cancer and chemo patients.
I think and someone correct me if I am wrong, the inteferon and riba is a virus fighter, so any virus based illness will probably get killed by the HCV drugs. Which makes sense to me,
Neuprogen is for the white blood cells, makes me ache so bad!
I think anything lower than 700 ANC...some doctor's will start Neupogen. Mine dropped from 884 to 534 in 2wks...so I'll be taking my second neupogen shot this wkend. Had a cbc done today hope its helping I sure don't want to take 2/wk. I hope your ANC goes back up so you don't have to do the extra meds! The INF alone is to much some times to deal with. I have a problem giving myself the shots. I guess you can call me chicken! lol
best wishes to you medic!
I was on neupogen from months 2 - 16, 2x per month, coz WBC kept going below 1.8 or so and ANC was below 1. I finally STOPPED taking it a month ago. (my Dr. doesn't know) coz I've only got 4 peg injections left. I HATED that stuff.
Some Dr.'s don'ts put you on Neup til your ANC'S are below .5. There's also some evidence that low WBC don't have much of an effect on infections. i dunno.
My neuts just dropped to 800 (same as .80 X10E3/uL) with WBC at 1.7, so I am interested in this also. I have heard some bad things about Neupogen, so I hope I can hang on without it.
I have read that low neuts and WBC in patients on TX are not necessarily linked to infection as much as for patients who have the same numbers caused by disease or genetic disorder. I have heard that some docs will let neuts go below 500 before using Neupogen. 500 seems to be the magic number as the definition of stage 4 neutropenia, and hence the number where many docs will treat.
Good luck. Ditto what Krusing says about making sure the docs stay on top of it. I am going to do the same.
Thanks for the feedback...I did call the Dr asking about the ANC and at what point to be concerned....I was told that my labs were "stable" (unsure what their definition of stable is when I see the ANC on the decline..) Mine is currently 820..so, low, but not acute...Well, at least the HGB and HCT have leveled off for now..
Brent, have you noticed your spleen area being a bit sore when you bend over? I'm suspecting this is from the tx doing it's job...
Sigh, I hate asking the questions...I don't want to sound paranoid, but I have been "blown off" by Drs before, and swore I'd never let it happen again...Even if I'm a pain in someone's backside...Thanks again all...
Every Dr has a different level of ANC they will allow a patient to go down to. My Hemotologist (I had set up pre tx) wanted my ANC (absolute neutrifil count) part of the WBC count to be at a certain level. My hemo wanted me to get shots at 1000 or under. I protested, hid out, didn't answer my phone etc to avoid them. They do cause bone pain in some. The sx are much worse than the Procrit for anemia, your HGB count. Some dr's want us to get procrit at an HGB of under 10, some under 11. Truly, it depends on your dr. There are studies and opinions of the rock stars, of course, that tell us otherwise. My hemo wanted me to get Aranesp (longer acting procrit) when my HGB was 11. I was happy to do this, I didn't have sx's.
The WBC, or its determiner ANC, for when the Neupogen/epo/Neulasta is given is different as well. I was given Neulasta (pegalated version of Neupogen) so I went 10 days on one shot. I was in pain for 10 days as well. People who have done both, say Nepogen is not as bad as Neulasta. I have had both, but only in the hospital. They both effected me adversely. I agreed with our resident experts here that I didn't need the Nep/Neulasta as often as my hemo thought I did at 1000.
From what I heard from Goofy and Jim, we don't need to get a booster shot until we are down to 500 ANC, if there is cirrhosis. If there is no Cirrhosis, then one can go down to 300, before there needs to be concern. I believe this to be true, after reading many things about this. We aren't cancer patients, this is what my hemo tx'ed mostly. He wasn't familar with Hep C. Talking to hepatologists, it is my opinion, that if you do not have cirrhosis, it is okay to go down to 250-300 ANC. 500 for cirrhosis.
As a follow-on to Linda's comments. Neulasta has some nasty sx's. For me, Neupogen was significantly milder. As Linda pointed out, Neulasta is longer lasting, Neupogen requires more shots. Neulasta is much more expensive, if that's a consideration. Even with the more frequent Neupogen, I found that that Neupogen at $400 each is a better bargain than Neulasta at $3000 each. (these amounts are based on what hematologist billed insurance, not my out of pocket). Your mileage may vary.
I was hoping you would pop in here! I was going to mention your name in my post and didn't. You were the person I wanted to say tried Neulasta as I did. We always joked and were perturbed at the Ads on Neulasta on the forum, then the TV commericals, we would yell at the TV, "NO, don't do it!" Lol. Funny now, but it sure wasn't then. At least we figured it out pretty quickly!
How you doing?
That's what ran through my head when I saw your post. Hi to John.
At least we can laugh a bit about it now...John says Hi to you!
Thanks for the info. It squares with what I have read. I am really hoping to avoid any rescue drugs. From most opinions, it is no picnic. I don't want to add to my woes. It will be interesting to see what this week's lab results show.
I am concerned about the cost of the stuff, also. It sounds like the Neup is going to be better than Neulasta from a cost standpoint as well as for SX.
I do notice some pain often when I bend at the middle. I can't tell if it is my spleen or not. There was a lot of rearrangement done durring the transplant surgery and the operation to drain the post-op infection a few weeks later including some spreading/breaking of ribs. So, I am not sure where the pain comes. I like your implication that this might be a good sign for a "working" TX.
It looks like we have similar stats on our lab work. I'll post mine this week when I get them. Plus I am seeing a new doc next week. It will be good to get his take on everything.
Best to you,
Ergh...Hematocrit is down to 30.5 and hemoglobin is at 10.1..ANC has dropped too but I don't remember what...WBC was 2.8...Sigh...I still haven't figured out what my Dr considers "stable"(that was the response I got when I asked)...Maybe to them it means "slowing changes"...Needless to say, I'm feeling like I'm made of lead... Well, next appt is next Thursday...I'm still riding on the good news of being UND at the 4 week mark, though!
Waiting to see your stats, Brent! Hopefully yours are doing good! (((((((HUGZ))))))))
I think your results look pretty good. I have heard of much worse before anyone started growth factor drugs. My tests look pretty similar and I don not feel well at all, so I empathize with you completely, though I am not sure exactly of the correlation between the numbers from the vampires with how one feels :)
My labs improved somewhat this week. There are now about the same place they have been for months. I wonder if the fact that I had the last test from a different laboratory had something to do with the drops??? It seems kind of ironic that everything took a nose dive and then was back to usual when I went to the previous lab.
Anyway, my HCT is back up to 33, HGB back up to 10.9, WBC at 2.6, and neuts back to 1.2. These are all low, but not a big problem.
Hang in there and thanks for your support,
Hmmm...I made a connection last night...I was reading 4C's poop thread (LOL) and it occurred to me to check my potassium level...sure enough, it's a bit low...So I took 10meq of rx potassium that I had from an unrelated event, and lo!, I'm starting to feel less sluggish this AM...I suppose if one drinks too much water, it can dilute their system, causing the potassium to be lowered...Interesting...Well, now I know...One more thing to chat with the doc about...I'm glad your #s are doing good! I do believe the time and manner of storage your blood goes through can also effect the labs results...Was the "oddball" lab draw done just before a holiday weekend? It would explain things a bit more... Well, have a great day! I need to get the daughter off to school...~Melinda
ANC cut-offs for Neupogen intervention vary greatly, but my personal observation is that most doctors prescribe Neupogen (or reduce the Peg) much too early. Studies like this, http://www.journals.uchicago.edu/doi/abs/10.1086/504386, and professional commentary suggest that interferon-induced Neutropenia (low ANC) is not associated with increased risk of infections, as once commonly thought.
My ANC dropped to 320 at one point and the medical team still didn't feel it necessary to start Neupogen or dose reduce. In fact, they said they rarely use Neupogen in their practice and predicted the ANC would rise shortly as it often bounces around a lot. Two weeks later my ANC was over 1000.