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ANC now at .28 (280), neupogen on it's way and peg reduction

ANC now at .28 (280), neupogen on it's way and peg reduction

Hello Everyone-
I just received a call from my trial nurse and my ANC is now at .28 so I am going to take neupogen and they are reducing my peg from .5 to .3. It may be a couple of days before I get the neupogen and I now have an ear infection and a soar throat. They seem to be taking it seriously, but they aren't acting worried about the throat and ear.

I must say I am a little concerned though, both about the reduction of peg compromising my chance at SVR, and having some infections while my anc is low. I don't like to post things that are focused on my own issues rather then the group, but I am a little stressed.  
Thanks,
Dave
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I don't blame you for being concerned. Have they done a throat culture to see if it is viral or bacterial? If it is strep, you definitely need antibiotics.

You're supposed to post here when you're stressed.... where else can you go for relief?

Hope things get better soon.
Diane
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Hi Dave—

It sounds like intervention was appropriate for you at this time. I think Neupogen acts quickly; much more so than Procrit, so as soon as that goes in, I imagine you’ll be fine. I also think you’re only considered at a moderate risk for infection, although it sounds like something already got a piece of you, huh?

They do dose reduce pretty frequently; how this affects long term SVR I’m unsure of. I think the ribavirin does much of the heavy lifting in that department once undetectable for virus; however, it’s in doubt as to whether even the doctors fully understand all this either.

I think it’s completely appropriate to post questions or statements that revolve around yourself; I surely did while I was treating, let me tell you, LOL! I got tremendous input from this group when I failed to reach some treatment benchmarks, and was able to make some valuable adjustments from that data.

I think you’ll be fine; hang in there, and take care of yourself—

Bill

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The trial nurse just told me it was low, it took my asking a few times to get the number out of her. She doesn't want me to worry. At least they agreed to dose reduction rather then stopping the peg and the neupogen. We are just waiting for the authorization from my insurance because the study does not pay for it (I think I read on the forum that it is very expensive). They only pay for epo if necessary because the study is about anemia. My hemo wasn't too low. started tx at 14.8, now at week 6 it's 11.2. At least they allow all the rescue drugs.
Thanks for everything-Dave
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They already have me on the 2nd tier antibiotics for this ear infection. I've been on them for almost a couple of weeks so far but the infection is fighting for dear life. Hopefully the neupogen will help fight it. I don't feel bad from the lower anc, I don't know if you're supped to. I walked 5 miles yesterday and was wiped out, but still was able to do it.
Thanks for your support-Dave
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Georgian Med News. 2007 Jun;(147):52-5.
IFN/RBV treatment induced neutropenia and its correction with neupogen in patients with hepatitis C.
Sharvadze L, Gochitashvili N, Tophuria A, Bolokadze N, Tsertsvadze T.

Iv. Djavakchishvili Tbilisi State University, Department of Infectious Diseases of Medical Faculty, Infectious Diseases, AIDS & Clinical Immunology Research Center, Tbilisi, Georgia.
Abstract
The aim of the study was to observe the frequency of neutropenia during Pegylated Interferon/Ribavirin therapy in patient with chronic hepatitis C; to compare the efficacy of two strategies of management of neutropenia--with Interferon dose modification and with Neupogen administration; to compare the effectiveness rate of sustained viral response (SVR) in patients with Pegylated Interferon dose modification and in patients treated by using granulocyte colony-stimulating factor G-CSF-filgrastim. (Neupogen). Study enrolled 47 patients with chronic active hepatitis C, aged 23-64. (38 male and 9 female). All patients had HCV genotype 1b. Significant neurtopenia (ANC<750 mm3) and severe neurtopenia (ANC<500 mm3) developed in 41 of 47 patients (87%). 41 patients with neurtopenia were randomized into two groups. The first group--22 patients who received granulocyte colony-stimulating factor (G-CSF, or filgrastim) 300 mcg s/c weekly for correction of neutropenia and the second group--19 patients treated either with Interferon dose reduction or temporarily inhibit of Interferon treatment. In all 22 patients of the first group neutropenia was normalized without reduction and/or inhibit of Pegylated interferon. Neupogen was well tolerated and in all 22 patients the improvement of quality of life (QOL) was observed. It was concluded that dose reduction or temporary inhibit of Pegylated Interferon in the second group negatively acts on antiviral treatment response in patients with HCV genotype 1. In patients with PEG-IFN/RBV therapy Neupogen effectively manages neutropenia and gives opportunity to maintain interferon dose (without reduction). Neupogen has the potential to improve adherence rates, which may in turn improve SVR.

PMID: 17660602 [PubMed - indexed for MEDLINE]
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Hang in there dave, sounds like you got a good and fast acting team there.

can
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Thanks Can
I really don't want to dose reduce though! Did you have to reduce your interferon at any point for neutropenia?
Dave
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No never had to, lets hope they ok the Neupogen fast as bill said it works really quick and this is only a one or two week thing. Once i set the redi-pen at a lesser dose by mistake and emailed my doctor about it, he laughed and said not to worry about it, wasn't going to cause a problem and it must not have.
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I too have always believed that Neup works quickly and effectively and that dose reducing IFN is not that bad at this point.  As it's necessary because you are so low......let's just prove that point, OK?

The anemia would wipe you out much more - so make sure that doesn't go south too........as most of us in here can attest that just *****!!!!!!

Good luck DAVE!
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Thanks for the helpful comments and support, I hope they get the neupogen approved promptly. At least with the anemia it generally means a good response to riba and boceprevir. I don't think the neutropenia means anything good, it just reduces your chance if you have to dose reduce, but sometimes there is no choice. At least these great trial people are working me through it in a very reasonable way.
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What week treatment are you in?
i would much rather reduce the ribavirin then interferon. The riba has a much longer half life and ins't that much of a factor reducing after in the system for a while. Try and get back on the interferon ASAP
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Well they aren't stopping the interferon, but .5 to .3 is a big reduction. I am in week 7. Those were end of week 6 results.
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I meant get back on the full dose ASAP. It is even more important since you are early on in treatment.
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should I try to convince them to use the neupogen and keep the dose the same. I may have a chance especially if I offer to monitor it through my own insurance.
Thanks,
Dave
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I tried to get my trial nurse to not lower the peg, but she said if my anc goes much lower i'm going to end up in the hospital and off the study. She said they will very likely bring the dose back quickly but must see the results first of the neupogen injection and that I will very likely remain on neupogen.
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Gosh, Spectda, this is kind of like one of those JennyPenny experiences I mentioned, with your ANC almost dropping from sight so fast, below 300. :(

Yes, I've read many times that neup is fast-acting but is there any chance you could get a dose from your study team to tide you over until your neup arrives? Maybe less chance of that on a study? Never know unless you ask, though.

(My N/P gave me four free procrits at the begining of tx, leftovers from another patient, just in case I needed them in a hurry before I could do the paperwork. It made me secure, knowing they were in the fridge, even though I never used them.)

I'm not going to wade in about your lobbying your team to stay on full dose at this point, less than 300.  My guess, though, is they'll put you back on full-dose quickly because hopefully the neup will work.

On one hand, it's a risk that noone here can assess, what with you being below 300.

On the other, it's sure going to make you anxious to reduce but REMEMBER many people in your situation have done that and SVR'ed.

I'm trying to think of who reduced interferon on a study?  Was it Newleaf (with cirrhosis) who was on the Boce trial and drastically reduced and even periodically stopped her interferon but SVR'd? I'll check her journals for you.

Kill the virus, not the patient, remember.

And great that you can reach your team so easily and that they really seem there for you.

You had a nice big drop in your hemoglobin, so in a perverse way, you're looking good - that's what Jmjm used to tell me!

Susan

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FWIW my WBC/ANC has also been low, 1.3/320. They reduced dosage to zero, 3 times, each time for 2 weeks. After the second time they ran a VL test, I was still UND. They have finally begun to give me Neup. It worked too well the first set of four shots. Now we're trying to find a 'Goldilocks' regimen.
It's odd they felt it ok to stop tx for two weeks at a time but simply rejected the idea of reduced dose! Haven't figured that one out yet.
Like you, this happened early on, starting at week 10, and continues to now... week 23, i.e., 23 shots, 29 weeks by the calendar.
Everyone is different, but it's possible to completely stop and start up again without detriment. Compliments to you for actively participating in your own treatment. Your idea is a good one. Hope they go for it.
How's your platelet count?
Keep pushing.
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Hi Susan-
They have some neupogen at the trial site, but it is four hours away from here. I live in the San Franicsco bay area, but this was the location that was willing to screen me a couple of times in fact. My nurse told me I will have it tomorrow for sure. None of the pharmacies in the area have it in stock. They all told me it was too expensive to stock and I could have it by tomorrow. I wish I could have less hemo and more neutrophils! I think I am going to have both soon! The nurse in charge of the study is awesome and indeed very responsive and intelligent.
I really want that neupogen ASAP!
I am staying away from the world until I get it. LOL
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Thank you for sharing your experience. what really concerns me is that I have an infection already. Congrats to you on being und, that's wonderful!

Does the neupogen do something weird to your body. Isn't this the stuff body builders take to build muscle fast?
I didn't see the lab results, but the nurse said my platelets were good as well as all my other labs.
Keep going with that und and I feel encourage to hear that you have stayed that way even after having to stop the interferon.
Be Well-
Dave
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I had to reduce my inf during the same time period in my Telaprevir trial, week 7 I think. I wasn't allowed rescue drugs.  my ANC was .7, quite a bit higher than yours. I did research it a bunch during that period and the neuts do bounce back quicker than the hgb, so that's a good thing.  

They reduced me to your same dose for one week, then I was supposed to skip the next week, but I did the shot and told them "oops, I forgot".  At that point I wasn't sure if I was on a placebo or not.  So for the next 4 weeks I alternated between the reduction and full dosing.  Not advocating lying to your trial center, but it's what I did because my ANC wasn't critically low and I didn't have any active infections nor was I around other people during this time.

For the record, I SVR'd.  I had 12 weeks of Telaprevir and tx'd for 48 weeks.

Good luck to you.

Isobella
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SAFETY NET ® Program for NEUPOGEN®
Products covered by program: NEUPOGEN® ( Filgrastim ) Program is designed to assist those patients who are medically indigent (patients may be uninsured or underinsured). Eligibility is based on patient's insurance status and income level. To enroll a patient, providers should contact the Amgen SAFETY NET® Program by calling (800) 272-9376


This is a help line to get the neupogen, if you qualify.  It is expensive but do you have insurance to cover it?  It was $40 with my copay when I was treating in 05 but it all depends on your plan.

Neupogen is fast acting and you can take shots every day for a few days to boost up your ANC.  That is what you may have to do since you are, in fact experiencing infections.  Sorry you had to dose reduce but that is the limitation of trials.

frijole
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isobella and frijole. thank you for the information. My insurance has turned it down twice, and the doctor said they are going to go to the manufacturer if they don't approve it. I guess that is what the safety net program is. Thank you all for helping. I am just hoping I am going to get it by tomorrow. We'll see!-
Dave
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I heard Shiitake mushrooms would help bring neuts up.  Did I eat them...yes.  Is that what helped?  I have no clue, but I was trying anything to avoid further reductions.  

Hopefully tomorrows mail will solve your problem.  

Good luck!!
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Dave, I was dose reduced for low white counts also but further along in treatment at Week 25.  I had my Peg reduced for 7 weeks running and was fighting with my doctor for neupogen the whole time.  He was great about getting me on procrit earlier but had strenuous objections (unfounded in my opinion) to giving me neupogen.  I was also on antibiotics at that point to prevent infections.  Finally after my white counts not coming up at 7 weeks of dose reduction, he agreed to neupogen.  I got one shot in before they pulled all of us from the trial because of chronic low white counts.  Alot of us were in a pretty precarious position.  Despite getting pulled from the trial at 34 weeks, knowing my Peg had been at half dose for the first 12 weeks once I knew what arm I was in and then being Peg-reduced again at 25 weeks for the remaining time on the trial...I got SVR.

Your ANC is very low and I hope they get you the neupogen quickly, I'm glad your doc is in favour of that.  The drug company itself will likely help with that, particularly with the doc on your side.  It's a tough call when your white counts go down pretty low and frankly you don't want your immune system overly compromised.  Particularly in the first 12 weeks, it's important to maintain full dosage but you're in one of those grey areas and you need to get your white counts back up.  So hopefully the neup comes quickly and it's known to act quickly and you can get back to full dose asap.  

To answer your question, no you don't feel much different when your white counts go down, like you do when your hgb goes down....but you are much more vulnerable to infection.  If at all possible, perhaps discuss with your docs to have you put on more potent antibiotics and perhaps a maintenance antibiotic.  That's what my team did with me, not because I had anything like you do but because they wanted to pre-empt anything like that from happening.  I was on some pretty heavy duty stuff at $700/bottle because my CD4 count dropped to a low of 92 at one point.  My trial team went right to Roche who was sponsoring the trial to get them to pay for it.  Until your white counts come up, that might be worth discussing with your docs as a proactive thing, to put you on maintenance antibiotics and/or up the ones you have.

Good luck with this....oh..and on the NOT posting about yourself...you're on treatment.  How else are we going to support you through this if you DON'T post about yourself?  :)  Everybody experiences different things and if you post about what is happening to you it's also good for others who are going through the same things.  

As Bill said...hang in there, Dave.

Trish
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The only weird effect Neupogen has had is to bring WBC from below cutoff @ 1.5 to over twice normal @ 23. Otherwise it hasn't fazed me in the least. I *think* only a small fraction of people have an adverse reaction to Neup. Like any drug if you overdose there are problems. To much Neup could cause blood clots, causing daim bamage, twitch, twitch, so it's important to have your WBC checked regularly until your maintenance level is found.
Neup and body builders? Ha. I wish. Perhaps there is a steroid with a similar name?
When the Neup kicks in, hours after first shot, WBC/ANC goes up and lessens the danger of having the infections.

All the best.
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nygirl: "I too have always believed that Neup works quickly and effectively and that dose reducing IFN is not that bad at this point.  "

Dave is at Week 7 and in the first 12 weeks of treatment where it's particularly critical to maintain full dosage as much as possible.  What makes you say that reducing IFN is not that bad at this point?  That's the first time I've seen anybody suggest that dose reducing in the first 12 weeks is not a big deal.  Later on in treatment it's not as big a deal depending on someone's stats and how much they've been dose-reduced at that point... but within the first 12 weeks?  Can you explain why you think it's "not that bad" ?
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Thank you for your help. I don't have any choice about dose reduction for now, as my trial nurse said it's better then ending up in the hospital and being removed from the trial, I hope dose reduction doesn't destroy my chance at svr, but hopefully the boceprevir will get me through to HCV free.

I don't understand why this happened. I don't get sick very often. I exercise a good amount and try to eat healthy and people say I look healthy. I guess this has nothing to do with that. Perhaps I have a weakened immune system to begin with, but it was never obvious.

I am going to ask for the stronger maintenance antibiotics tomorrow. Thats an excellent suggestion. I think I'll avoid my grandson for little while. At four he's always got something.

Thank you all for helping me through this with your thoughts and experience and advice.
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I thought the nurse told me this is a growth hormone, I some how associated that with steroids! How often does it need to be monitored? Also I thought she told me that I would take it once a week probably for a while and maybe for all of tx. Frigole mentioned taking it everyday for a few days.
Thanks
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It happened because of your WBC count is so low. From Wikipedia ... "White blood cells (WBCs), or leukocytes (also spelled "leucocytes"), are cells of the immune system involved in defending the body against both infectious disease and foreign materials."

Feeling good is nice, I do, but it's wrong to judge the seriousness of this by the way one feels. Avoid kids, notorious germ factories. Avoid people with colds, etc., Avoid shellfish, plus any undercooked foods. Avoid rusty nails, etc., cuts... wash hands often ...

All the best.
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They do a standard blood test called a CBC, prolly where your WBC/ANC counts came from. That's all. Just monitoring the WBC levels via a CBC blood test. Some reading on it ...

http://www.labtestsonline.org/understanding/analytes/cbc/test.html

How often is up to your doc but one would think, starting out they might do a CBC after a week. Judge the effect, adjust if needed, and go from there.

My first course of Neup was every other day, after only four shots WBC went 2x normal. Not good, could cause clots. Now we are trying 1 a week. The results of that is coming up next week.

Neup will help, and this will work out in short order.

All the best

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On the mushrooms...I did those as well although I did a mushroom compound that I got from the healthfood store and goes by the name of Immune Renew as it's not actually the whole shiitake but a component of the shiitake that's been found to be good for the immune system.   Doing this on the fly so will add reference later but pulled it from the Sloan-Kettering Cancer Centre's website which has a terrific compendium of natural products and any findings on them and benefit or lack thereof.

In the absence of a targeted mushroom compound, by all means...I would do shiitakes just because they might help...kind of like why I did folic acid earlier in treatment when my hgb started tanking.  I had read that it doesn't help much and my hepatologist countered me with telling me that it helps in 20% of the cases.  So I took it because I might be in that 20% and it might help.  Did mushroom compound for the same reason when my whites tanked.  Hope that helps.

Trish
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Good morning, Spectda,

Here's hoping your neupogen is almost at your doorstep and that you hole up, hunker down and hang in through this rough patch.

And I agree, stay away from your wonderful grandson. I'm off to see my new grandson now but when I get online again, I hope to hear that your neuts are heading back up.

One thing that struck me in what you just said, "I don't understand why this happened. I don't get sick very often. I exercise a good amount...."  I'm a-wondering if maybe you're exercising too much? I know the hot tip  to raise the neuts temporarily is to jump up and down and as much as I'd personally give this a try, maybe TOO much regular exercise is affecting your counts? I don't have a clue or time right now but maybe someone else could comment on possible impact of more than moderate exercise during tx one way or the other.

Be well and ttyl,

Susan

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Neutrophils are the WBCs that are getting low. There are other WBCs that aren't involved in this such as lymphocytes, monocytes, basophils,and eosinophils. Each one has its own special critter that it attacks. Neutrophils attack bacteria.

Blood clots are caused by platelets and compliment activation as well as fibrinogen and a bunch of other chemicals. There are no WBCs in the makeup of a blood clot, unless they just get stuck in it by accident.
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I am getting the nuepogen at 11 this morning, and I am very glad. I have to pay $500 for 7 vials (this is my share of the insurance) I am out of work currently, almost out of savings, and congress has not yet passed an extension of unemployment. I just finished my 6 months of unemployment. First time in my life receiving it.  

I am going to purchase the 7 vials and then get the doc to help me get the safety net medications. Thanks everyone.

I hate mushrooms but may try to force them down, I don't know if it's worth it!LOL

Susan-I think I will chill on the walking and see if it has any effect, it's the only exercise that I get these days but maybe 3-5 miles a day is not a good idea. It's funny, I find myself getting out of breath walking up the stairs, but when I start walking I sort of push myself through the heavy feeling and it wakes me up so I found myself wanting to do it more. When I get home I am really wiped out and I am able to sleep better.

I appreciate all the kind and helpful people here. I still don't want to lower my interferon dose which is really concerning me more then anything else but I'm going to try and keep the faith!-Dave
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I'm glad you got your neupogen. Your ideas for keeping safe from those nasty bugs are good. Also, when I was having my ordeal with neutropenia they would not allow me to have raw fruits and vegetables.....not even washed and peeled. I sure did miss salad. Hope your counts come up quickly.
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Thanks -I read about the the fruits and vegetables while searching the Internet yesterday. It's a bit tough being a vegetarian for 35 years to not eat them. I am going to eat cooked food only for a while.
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Sorry to have missed your earlier post regarding your ANC and WBC.  I have to say i know very little about neutrophils.  I realized through this process you have to be informed and ask questions and then there are times when you just have to trust the team you are working with.  It sounds like you have a great attitude and that will take you far.  Oh and you are my idol for walking 5 miles, puts me to shame.  Good luck managing this hurdle and hope the throat and ear get better soon.  
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I got my medication so I am good to go and feeling relieved. I'm just waiting to talk to the doc to try to get some stronger antibiotics and set up some blood work to monitor next week since I won't see them for about 10 days. We all get each other through, and you are UND, !!!! Very exciting!
Be Well-Dave
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I certainly defer to your knowledge of things. After some weeks the exact wording of the resident eludes me and apparently I've misstated it. Still though I'm certain it had to do with the blood thickening, becoming sluggish, not circulating well through the brain and heart stressing. Does that sound more in line with above normal WBC counts?
Thanks
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It's kind of a stupid question but I assume cooked vegetables and pasteurized dairy products are okay?
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I sent the information on the safety net program to my trial nurse and they are working on getting me some assistance through the trial or through safety net. Thanks for posting that very helpful information. - Dave
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Sorry to hear this Dave.your ANC is too low.....
Glad you have the rescue drug now....it will help, then get
back on full dose as soon as you can.  
I hope your infection clears up soon Dave and all will go
smoothly from here.
Hugs
Elaine
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Thanks elaine. I am kind of surprised they are starting with only one injection in the first week (I am going to take one weekly for now). I won't have new blood results for about 10 days to know where I am at. At least they are extending the antibiotics for another course.
I hope you are doing well also - Dave
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It will take the neopogen a little bit to kick in, once it does
you will be on your way ! good luck !! Dave !
I only wish these drugs weren't so expensive !!

I wish you the very best
Hugs
Elaine
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It's typical that it's one injection a week for the neupogen, it's fast-acting and they would need to see how you respond.  I'm happy you got it so fast, that's good.  I did mushrooms because I couldn't get the neupogen so you can likely spare yourself from eating them...I'd look for the compound in a natural foods store anyway, particularly since you don't like them!  (I love mushrooms. :)  Between keeping you on antibiotics and putting you on neupogen quickly, sounds like you're getting good care from this team and I hope you are back to full dose quickly.   I think 10 days is not bad for a blood test...you'll be giving it some time to do it's job,  you'll have had two injections by then and that may just put you back to full dose once you get those results.  Hang in there!

Trish
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Thanks, It's been a bit of a ride lately! Have a good weekend - Dave
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I think you are talking about the viscosity of the blood. That does make it harder on heart and kidneys for sure, especially if the RBCs and platelets are normal. Seems like everybody's numbers drop if the tx is working though so it shouldn't be as much of a danger. Definitely need to keep an eye on it though.
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I assume the Shiitake mushrooms have to be cooked to insure there is no bacteria. Anyone know? It's worth a try eating the nasty things if they might help and definitely won't hurt.
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Hi Spectda!

Hope you're feeling better.

I'd scrub and stir-fry mushrooms, although I'm good at peeling them, if you can believe it. (I learned that from a chef at a construction camp.)

Peanut oil is a bit taboo today but if you have no allergy problems, I think it makes for the best-tasting stir-fry. And I add a bit of sesame oil after cooking. Even my husband will eat mushrooms that way!

I'm with you on 'why not' unless you're turned off by them. (I was very fussy and unpredictable about what I could stomach during tx.)

When a friend started her cancer chemo, her sister sent her mushroom extracts from Hong Kong to take during tx. Her sister is a pediatric oncologist and routinely uses it in her hospital practice along with chemo.  

Clinical evidence may or may not be in (and what about concentration and purity levels?) but if you can tolerate the smell, the texture and the taste, go for it. If there is something to this, eating them represents a miniscule amount, anyway.

I couldn't stand veggies during tx and stuck to stranger things than mushrooms (herring!).

Here are some interesting links:
http://en.wikipedia.org/wiki/Medicinal_mushrooms


"In 2008, researchers at the University of California, Davis published a review of medicinal mushroom research and encouraged further research by way of clinical trials. However, the review stated that currently there is not enough known about medicinal mushrooms to begin promoting their use in the treatment of specific diseases.[1] Medicinal mushroom research in the United States is currently active, with studies taking place at City of Hope National Medical Center,[13][14] as well as the Memorial Sloan–Kettering Cancer Center.[15]



http://www.medicalnewstoday.com/articles/29068.php

http://www.ncbi.nlm.nih.gov/pubmed/16702701

Best wishes and happy cooking,

Susan
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Hi Susan,
I read the info on the sloan kettering site and figured why not? I am getting really dizzy and very fatigued the last couple of days. I assumed either the neupogen is doing it, or my HGB is dropping more. The fun begins! LOL
Thanks for the tips!
Dave
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I felt pretty bad when I started the neupogin.  Dizzy, horrible headache, fatigue.  I had 4 doses before I stopped for 10days, then went back on 1x week.  I changed taking the medication to morning rather than evening and I did better.  Perhaps the activity during the day processed it through my body.  Now, I can tell I am feel more fatigued Wednesday, injection day for neupo, which improves by later thursday.  Only to get my peg. shot on Friday.  It's do able though.
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The stuff really seems to knock you out! No problem sleeping since taking it!
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