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

[spectda]

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

[bubba225]

Hello my names Joshua when I was a baby I always very sick I would be in the hospital sometimes up to three months at a time. Then in 1989 my mom took me to Loma Linda Hospital, and thats where we met Dr, Antranik Bedros. Dr Bedros is one of the best cancer docters in United States. Shortly after we met him he diagnosed Severe Chronic Neutropenia, and I was the first in the United States found with it. Then in 1991 Dr, Bedros  had me put on a experimental drug called Neupogen I was the first in world put on the med, I have not yet met anyone who takes its besides me. But I do hear they use it for Cancer now but thats all I know. If you might want to know more about me email me at ***@****
Joshua

[bubba225]

Hello my names Joshua when I was a baby I always very sick I would be in the hospital sometimes up to three months at a time. Then in 1989 my mom took me to Loma Linda Hospital, and thats where we met Dr, Antranik Bedros. Dr Bedros is one of the best cancer docters in United States. Shortly after we met him he diagnosed Severe Chronic Neutropenia, and I was the first in the United States found with it. Then in 1991 Dr, Bedros  had me put on a experimental drug called Neupogen I was the first in world put on the med, I have not yet met anyone who takes its besides me. But I do hear they use it for Cancer now but thats all I know. If you might want to know more about me email me at ***@****
Joshua

[spectda]

The stuff really seems to knock you out! No problem sleeping since taking it!

[pcds]

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.

[spectda]

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

[portann]

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

[spectda]

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.

[Diane12855]

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.

[spectda]

Thanks, It's been a bit of a ride lately! Have a good weekend - Dave

[Trish77]

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

[child24angel]

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

[spectda]

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

[child24angel]

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

[spectda]

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

[spectda]

It's kind of a stupid question but I assume cooked vegetables and pasteurized dairy products are okay?

[hcvJames]

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

[spectda]

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

[wtgb]

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.  

[spectda]

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.

[JennyPenny2009]

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.

[spectda]

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

[Diane12855]

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.

[portann]

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

[Trish77]

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