Rescue Drugs required when not needed?

I had my CBC done yesterday and was happy to find that my Hgb was 12.0 and my ANC was 1.1, WBC is around 2. I called my hemo and canceled the Neulasta shot I had an appt. for yesterday. Today I got a call from the office saying that the Dr. wants me to come in for a Neulasta and Aranesp shot since it has been over 3 weeks since my last ones. I haven't needed Aranesp since early July and my had Neulasta 3 weeks ago.

At the beginning of tx, my hemotologist told me to call when my ANC was below 1.0 and/or my Hgb was 11. I have always called when the counts were below what he said and gotten the shots. As many of you  know, the Neulasta puts me in bed for at least seven days in agony. I don't want it if I don't need it. I am really upset that the Dr. is having me get these shots when my counts are above what he stated to me previously. I don't know what to do! He will cut my interferon if I refuse. Just thinking about having to get that Neulasta gives me the shakes.

Any suggestions?

[FlGuy]

If your hgb has been in the neighborhood of 12 without aranesp since early July - why mess with it now?  As long as you stay on the same dose of riba you should not have the expectation that it will go lower, other than some minor fluctuation.  If you mean that your anc's are 1100 (1.1?) doesn't look like you are quart low there either.  If your managing at those levels you should keep on with the meds, have cbc ever two weeks and avoid that stuff if you can.  Until Snidely Whiplash has you (Nell) tied to the tracks there is no need for Dudley Dooright to come to the rescue.

[bobbyullc]

my hgb was around 12 for 48 weeks of tx and my wbc dropped but i was told to just be careful about infections.
ask him WHY.
hgb 12 is fine. you may know more from this board than him.

i am 3 1/2 months post tx. does anyone think a 3 month post pcr will help or just add to confusion????
bobby

[FlGuy]

There is a very high correlation between the 3 and 6 month result - like 98%.  If you have a need to know now, for whatever reason, get the doc to script it.  On the other hand, those five + months after tx when I just KNEW I was clear were some good months.  Then it hit the fan with the pcr.  Careful what you wish for....

[sfbaygirl]

I know my counts are fine on tx. I even feel good! I wonder if he is insisting I have these shots because he does this for cancer patients. I do feel a lot more knowledgable about this issue for hep c.

I get really angry when dr's here don't give people rescue drugs when they clearly need them and there counts are low. Mine ARE NOT LOW enough for rescue drugs. Dang, I am really frustrated. Maybe I can send someone here who can't get them and needs them in my place! I tried to put off going in until Monday, but the nurse was insistant that he wants me in there. YUCK!

Flguy;LOL  You are right my DR. (Snidley Whiplash) is going to have to tie me to the tracks, then I need Dudley Dooright to come rescue me from my DR! I wish I could complain to one of my other dr's but they are all buddies. I am NOT doing the 'lasta though. NO WAY! Also I am not doing the Aranesp and Neupogen at the same time. Did that, it was awful.

People here talk about being proactive with the rescue drugs, but if you don't need them, why take them? My Hgb has been inching down for months. Maybe in a few more weeks I might need procrit/aranesp, but not now!

I guess he can't make me stop tx at the moment, since I have enough drugs for 2 more weeks...gawd, I hate this!

[Forseegood]

I hope this resolves for the better...let us know...

[avidreader]

I can't remember where I read and hear this--it may have been on this board, but I know I heard it more then once and from more then one source. Apparently patients on chemo for cancer are much more susceptible to infections that are folks doing combo treatment for Hep C. For one reason or another, folks with low WBC who have Hep C just don't get as many infections as do people who are treating forms of cancer. Doctors who treat a lot of Hep C patients have noticed that and are slower to intervene with Neulasta because the side effects can be so pervasive. I had low WBC's throughout treatment and my doc never suggested Neuplasta and never worried too much about infection although he was very quick to put me on Procrit when I needed it. I traveled (lots of planes which are incubators for all kinds of nasty things.) I run a homeless shelter and homeless supported housing--our guests come in with all kinds of illnesses--many contagious. I also coach synchronized swimming and am around and in very crowded pools three nights a week with lots of kids, etc. We have lots of kids and babies running (or crawling) around in our shelter and on and on. My doctor knew all of this and never suggested I take any special precautions. I only got one infection the entire year I was on treatment--I think I actually caught fewer colds and viruses then normal. I wish I could remember the sources to back up what I'm saying to you, but perhaps someone else will read this and remember. Given your reaction to reaction to Neuplasta I would assert patient's rights and flat out refuse if I were you. Good luck--I'm rooting for you in the background.

[sfbaygirl]

Flguy;  Yes my lab reports ANC as 1.1, but I believe it is 1100, as well.

Forsee; Thanks! Maybe the hemo will have drag me in there, but I will most likely comply at some point, so I am not taken off of tx. I thought I was lucky getting the rescue drugs early, as I needed them. Now I am not so sure!

[GrandOak]

You are correct in your interpretation.

I know that my WBC as been around 2 and ANC around 1.1 (1100) throughout most of my tx.  It was not until my WBC dropped below 2, and more importantly my ANC fell to 0.7 (700) at wk 25 that I was placed on Neupogen.

Now my RBC and HGB has been dangerously low since wk 5 of tx, which is why first doc cut riba from 1200 mg per day to 600 mg and seriously jepordized my tx.  Which is why I've been on Procrit since wk 8 when I switched to a doc who was more knowledgable in HCV tx and I've been on it in ever increasing amounts until I was able to get to 1400 mg of ribavirin per day.

But all three times that I've done the Neupogen regimen has been when my ANC has fallen to 0.7 (700) and not before.

Now perhaps there is some compelling reason why your doc feels you must have the Neulasta.  It sounds like perhaps you need to talk with them about to better understand since it appears that you have a different expectation upon when you should be taking this med.

[painterlady13]

I agree with you that if the white blood counts are up then there is no need for the neulasta.  I would be very adament about that especially if it makes you feel that bad. Stand up girl for what you need to do for you. and if testing proves you don't need rescue drugs then refuse them.  They can't force you to take them.

I am going to be taking my procrit with me next week when I go to the doc in Pitt, But if my hgb is over 11 I am not doing it. Either that or he is upping the riba to 800.  I know my WBC is still low and unless the Blood tests show diff I will continue with the neupogen, But it doesn't seem to hit me the same way it does you.  So far the worst I have gotten was the first shot of the Neup. and it was severe vomiting.  didn't do that last week either with 2nd shot.  Hopefully the wbc will react soon too.

[goldyn]

My anc have been as low as 800 in the first three weeks of tx, but bounced right back up and been staying at 1.0 my doc told me he woundnt start to worry until it hit .7. now i have 7 weeks to go and it never fell below .8.  Darn it I hope you dont need to take that shot if it causes you so much pain, just make a point to tell them that a lot of people ride on 1.0 thier whole tx, and do ok, the only thing I have noticed just recovering from infections needing antibiotics, is that the allergies seem to be  really hard on me lately...

[sfbaygirl]

Wahhhh! We didn't buy our playoff tix thank goodness, darn! Playoffs are so fun if the Giants are in them. Yeah, I don't think the demise is going to work on this dr.

I was wondering about infection. My segs diff is high, I wonder if this has something to do with this?

[FlGuy]

I think that I read somewhere that ANC will rise in the presence of an infection, like a cold.  Maybe you can find a snot-nosed little kid and pick up a case of the sniffles before next blood test.  Crying over the demise of the Giants won't quite do it.

[sfbaygirl]

You are correct about what you heard. I have the study somewhere. Maybe I need to dig it up for the dr. to show that Hep patients don't get the infections like cancer patients. I have had plenty of chances to get infections with all the kids, planes and stadiums I go to, haven't been sick with a .4 ANC. except a flu that wasn't as bad as my husbands.

In the past my ANC was .4, to .8 before he gave me Neulasta. He has NEVER given it to me above 1000 (!.0) My WBC has been 1.4 and he isn't concerned. I don't get it.

I would rather be proactive with the procrit/aranesp for anemia, since it takes awhile to work. But since I feel good, I don't need it at 12. Believe me, if I needed it I would go get it now. I will get it if I go to 11.

My worry is that he can tell my GI that I refused to do the Neulasta and take me off Inf/Riba, as he threatened to do last time I told him I didn't want to take it at 800 (.8). I took it, but I was below 1000.

The nurse refused to discuss this with me and is having the dr. call me tomorrow. Hope he can be reasonable.


Thanks for all the responces!

[FlGuy]

You've probably already have seen this, or something like it.
http://www.medterms.com/script/main/art.asp?articlekey=20030

On my cbc printout, the tech takes a number (which is expressed as a percentage like 32.7) and labeled on the report as 'GR' and multiplies it by the WBC (like 4.0) and gets 130.8, and then moves a decimal place to express it as 1308.  But since GR is a percentage the accurate way to do it (like yours does) is .327 x 4 = 1.308

[sfbaygirl]

That makes sense to keep up the procrit instead of stopping. That was a big drop you had in 2 weeks. You must have felt awful!

My Hgb has been slowly inching down since my last Aranesp shot in early July. Maybe a .2 drop a week. Nothing major. If it were dropping more, I would go get the aranesp. I sure don't want to go through that anemia again. Aranesp doesn't seem to give me the sx that the Neulasta does. Hope I can work this out with the dr.

[FlGuy]

What a lot of people who use procrit usually do is adjust the frequency of the procrit (ie every 3 days, 5 days, 7 days etc) until they adjust to a point of almost balance.  It seems to take some trial and error to get the timing correct.  The tough part about it is that when hgb seems to drop, it can be fairly quick but when procrit is used its effects are pretty slow.  I'm sure there are procritters here who have actually managed the balancing act.

[sfbaygirl]

Yep, I just have to feel regular ol' crappy, insstead of horribly crappy. LOL Now I have to just worry about when I will have to get that next shot. I always dread those CBC's. I will wait until the day before next Inf shot to do it, hope that helps too. I told him I was not doing Neulasta again. He said that was fine. We will do 3-4 shots in a row and see how it works with Neupogen when I need it. The imitrex should help the migraines, hope the bone pain isn't bad with Neup.

[FlGuy]

Yup, I rather do neup x 3 than 'lasta x 1.  If it wasn't for  the hgb threat, you could put off the cbc - but that's a little too much risk.  So, you do the cbc elsewhere and just phone in results to hemo?  My hemo does the cbc on the spot and has the results in about 2 minutes - and that's making 2 copies of the report.

[aiuta]

I'm so sorry about this recent news from your dr.  It sounds very frustrating, esp. as your numbers seem not to necesitate the drugs (esp. the neulasta which hits you so hard).  I'm not a dr. so I don't know the particulars, but I agree with the person who said to ask your dr. WHY?  You have a right to know.  I am also sorry the nurse won't discuss it with you.  Once a nurse would not tell me my VL results even though I knew she had them.  This was pre-tx.  The same nurse had previously told me she could all but "guarantee" I was going to clear the illness spontaneously when my VL had gone down on its own from 3,140,000 to 143,000 to 3,500.  When it rose from 3,500 to 4,140, she didn't want to convey to me the "bad" news, so she said I had to wait to talk to the dr. the following week.  That was very upsetting.  I felt so left out in the cold about my own treatment.  I seriously considered changing dr's for a while.  In the end I didn't because there is a new nurse there now, and I feel very comfortable with her. I hope you feel you have at least one ally at your dr.'s office.  I think this is important, especially when going through such a difficult tx like this one.  I wish you all the best, Sfbaygirl.  I hope you continue to advocate for yourself.  You are worth it.  A hard lesson I've had to learn since getting sick is that often if I don't advocate for myself, no one else will.  I wish you all the best.  Aiuta

[sfbaygirl]

I do my CBC's at a lab and have them faxed to me and the dr's. So I get them at the same time they do, but of course they don't always look at them right away or even get them! I have to take my own labs in sometimes as the lab doesn't send them to everyone it should. Usually, I am aware of the low counts first, so I call them.

My ANC is dropping quite a bit per week. Last week it was 1.8, this week 1.1, so next week it may be down to 400 or 500? It has gone pretty low, pretty fast throughout, so I do weekly labs. The Hgb only goes down .2 a week. At 12, next week I could be 11.8 and so on. Since I feel okay, I will wait until I don't for the Hgb.

[MissMiss]

Good morning!  I just want to add that after being on Procrit for several months, my hgb bounced up to 12.  My hemo told me if I got above 12 to not do Procrit for that week.  I was on 60 or 80 then, can't quite remember.

So, for two weeks it was above 12 with no Procrit, the next week it plummeted to about 9.5 and kept going down thereafter.  I don't know if you can adjust the amount or Arenesp but in my case, it might have been better to adjust it down rather than skip it.

Sure hope you can talk him into waiting at least til next blood draw to take the Neulasta.

miss

[worrywartwife]

Guys I am just learning-What is ANC? My husband is week 4/24 genotype 2 with vl of 1,790,000 before tx. His last cbc was okay, but I don't find ANC anywhere on the copy. Thanks guys

[sfbaygirl]

ANC is the absolute neutofil count. It is part of the WBC. You should find it as abs neuts on your lab report.

[sfbaygirl]

Just got a call from the Hemo. He said my counts were low and he was concerned with infections. I didn't bring up the study about hep c patients, but I need to find it. He wants me to get another CBC and I told him I would and call him when it was below 1.0 or 1000.

I told him I had no symtoms (symptoms) at Hgb at 12, he said if I did, he would give a shot. I told him it wasn't necessary. He said fine.

He was pretty reasonable! I told him about the migraines and is calling in a script for imitrex. What is it with these people who work in dr's offices that make things seem so urgent! She really had me freaking out. They ought to have more training for these people who call cancer and ill people with news like this.

[FlGuy]

That's great.  Now you only have to feel crappy, instead of real crappy.