Hi All,
I go for my 2nd chemo treatment tomorrow...blood work today.
This forum has been wonderful, teaching me what's currently happening to me, as well as what to expect. Yesterday, I pushed myself some and did more walking than usual, and also visited. At the end of the day, I had shoulder pain (which has been ongoing) and realized I might have "overdone it."
I got enough sleep, but today you'd think I'd have 2 thousand pound weights on both feet! This overwhelming tiredness, is new to me.
I want to ask this forum, do you have any tips?
I read where it's best "not" to just lie around (unless you're queasy) and do things...light exercise, walking, etc.
Right now, I feel like I can't even get up off this chair to get ready for the Oncologist. Is it the chemo, or the lymphoma, or the whole-ball-of-wax?
I wish they had "energy" pills that really worked and were good for you! I'd be the first in line for a hand-out!
Tips??? Thanks. Hope all my friends on here are having a good ole' day! Everyone's being a little quiet-------:yawn:
S.

Big waxy ball !!

The way I see it you have 2 options

Option 1 - carry on regardless
Option 2 - slow down and get on with things at your own pace

both good options if you really listen to your body and if taking option 1 take a little breather every so often (you know me, I took option 1 as am a loony tune but still kicked back and slobbed in front of TV when it got a little too much)

Good luck for tomorrow, not that you'll need it. Just think, by this time tomorrow that will be 2 over and done with and out of the way!!!

Ails xx

Thank you, sweetie.
I knew you'd say something reassuring.
I already feel a little better, only after an hour has passed. One thing about these symptoms---you always know they'll subside....when?---don't know...but, they always do. Thank goodness for that!
I'm reading a book, "The Great Physician's RX for Cancer" by Jordan Rubin. I've found it to be very enlightening and making me think. Anyone read that? He, himself, did not have cancer, but did extensive research. Anyway, he SO believes in exercise--- and fresh air.
Yes, I'm ready and armed for round # 2 !!! You're right, Ails---it's moving right along! :)

It's the whole darn ball of wax Singer and when it happens you have to listen to your body. Slow down, take a rest or nap or something until it subsides. It's only been 2 months since I'm cancer free and I still am soooooooooooo tired. I'm back working and come home and :yawn:

I'll be thinking of you tomorrow and sending you good ***** that this one is easier than the last. And don't forget to put that nick in the tree, 2 down. :D

Hi...
I just got back from my blood work. I'm not exactly a "happy camper," because apparently one of my "counts" (not sure which one) is only "300" and is supposed to be around "1000." My Oncologist said we may have to delay chemo, until I'm boosted back up with some drug ...."Neu--something or other." I need to do some research. I'm frustrated, because I want to get this thing moving, but I'm also thankful that my Oncologist is keeping a watchful eye on me.
Anybody encounter this? I was so hopeful to get the ball rolling....
My Oncologist doesn't seem too bothered by it all. Just a kink in the road...you think???
S.

I'm so sorry to hear this Singer. I hope it's not delayed. I think your oncologist is referring to Neulesta. My counts got so low in between I had shots of this. I sure hope you don't need it because it's very painful. It's forces your body to produce WBCs and this puts a lot of pressure on your bones. This is something I could never understand through all this. You have chemo to kill the cells but then you need shots to get the counts up. :confused:

Great. I didn't know it was given in a shot form. I thought maybe pills.
I'm not feeling very positive right now. As you can tell, my tiredness was the reason for this thread---so, now I know why. I just hope I can recover. Does that come in "pill" form?

I'm sorry Singer I didn't mean to upset you anymore. I've had a bad couple days with extreme fatigue and my surgery is Monday and I'm really scared. :eek: I've had so many surgeries but never on my back and this one's really got me down right now.

I'm not really sure if it's in pill form. I've had it many, many times and it was always by shot. Maybe someone else has had pills but I never did.

That's ok, you'd think I'd be used to this at some point.
I'm sorry about your surgery---but, I'm sure you'll be better off after it's all said and done.
I know that "looming" feeling you have before surgery--and the dreading. One thing always bothers me, and it's probably rather stupid, but it's fasting the night before surgery. I don't know why, but when I "know" I can't have food or water, I'm totally fixated on how thirsty I am. Mind over matter, right?
May I ask, do you have a port? I get mixed-up, as to who does & doesn't on here. If you do, could they have administered the "Neu-whatever" in the port?
I'm still dissapointed. I was SO hoping to move this along. I knew I was feeling down and dragging, though.....:(
S.

hi singer,

i don't come here often, but just fell upon your post and can offer a little info. my son had a bone marrow transplant a couple of years back and he had what is commonly known as G-CSF - a stimulant for white cells, or specifically neutrophils. the drug is known as neupogen.

chemo flattens the immune system, which is basically the white cells. i'm trying not to get too technical or complicate it! :dizzy:

but, when neutrophils are low, it leaves you wide open to infections, which obviously isn't a good thing because you won't be able to fight infections without a good white count, specifically neutrophils. this condition is called "neutropenia" a count of 300 is considered very low, but it can also go lower. my son was hovering at around 50-100 for quite some time. i'm surprised your doc hasn't warned you of the dangers of being neutropenic. you should watch your diet, no fresh fruit, veg of shellfish particularly, or take outs - anything that can harbour bacteria basically. you should be strictly following a "clean diet" as it's known and also stay clear of crowded places like shopping malls etc.. i know some people even wear a mask when they go out and pay close attention to hand washing and particular hygiene in the kitchen where your food is prepared.

i felt i must tell you this because you are at risk. your doc is letting you down by failing to tell you! please do a search on "neutropenia" and find out more details.

as for G-CSF/neupogen, please also search for information on that, particularly warnings.

sorry, don't mean to panic you or anything, but had to post when i saw clearly that you didn't understand you were neutropenic and the high risks involved.

take care and let us know how you get along... all the best :)

x x x

My goodness....this is all a little scary.
Thank you for so much information, Mzchief, but it's leaving me in a quandary, wondering why my doctor didn't inform me more.
I'm slowly learning about the white blood count and red blood count, but, obviously, I've got a lot to learn. I knew something wasn't right yesterday when the overwhelming tiredness first started. I couldn't even explain, exactly, how debilitating it was....but, only for a few hours...then again this morning.
I don't believe I heard my Oncologist say the word, "neutropenic," --but, he did say we'll have to take blood again tomorrow and "see." He seemed to feel I need to wait another 3 weeks, before chemo again...which scares me, too. I need to eliminate these cancer cells in me---he assured me we already "whacked" them pretty good with this first round of chemo---putting me where I'm at right now.
When I asked about "diet," he said to eat lots of "calories" since I've been dropping some pounds. He did mention about being smart in crowds, good hygiene, etc.
Hopefully, this is just a minor set-back & I can continue on.
I'm sorry to hear about your son. Is he better now?
Again, thank you so much. You have armed me with some questions for my doctor again tomorrow. God bless...
S.

Hi, everything you are feeling is very normal! Often blood counts are too low to get treatment but there is no harm if it has to be delayed. I know you want to get on with it, but there has to be a balance between getting treatment and looking after your body. The neulasta is often given to boost blood counts.

It is understandable that you feel tired and it is important to listen to your body...yes, keep moving if you can but do not overdo it! I finished treatment six months ago and only now feel really good, so it takes time. You are still in treatment....treat yourself kindly!

I was really careful during the "nadir", which is what they call the low point of blood counts between treatments. Keep away from people with colds and flu and I used to carry around a hand sanitizer in my bag in case I wanted to eat something for felt I should clean my hands! I did not eat out or eat uncooked salads or fruit that I could not peel.

I think some doctors do not want to overwhelm you with information unless you ask. Some people want to know everything, some want to know very little, so the oncologists have to determine how much information you can handle or want to handle.

Take care,

Love,

Thank you, Alison.
Yes, I believe Neulasta is what I heard my doctor say he may give me.
I go today to find out if I'm strong enough for chemo, but I highly doubt it.
I still have that weird "blah" feeling.
Yes, I'm being very careful with crowds, washing my hands, etc..
It's always reassuring to know, other people have dealt with this--the delay in treatment, and other things I'm going through at the moment.
I think it's human nature to jump to conclusions, and fear the worst. That's where I was yesterday. I had no idea what really to expect and I'm slowly becoming informed, once again---thanks to this forum.
My sister has told me to stop searching the internet, too... You never really know if they're "credible" sites, or not.
Thanks for your response. This forum is keeping me sane!
S.

Hi Singer

Don't worry about it - a few of my treatments had to be delayed due to low counts - you guessed it, I spat my dummy out - it's weird that we actually get upset about not being able to have a bunch of drugs that are gonna make you feel like poo for a few days :dizzy: . Are we weird or what!!!:D

The chemo drugs kill the fast growing cells - ie the cancer cells - but they are indescriminate and kill good cells that also grow fast - ie white/red blood cells, hair (hence the loss) etc. The doctors wait until your immune system can cope and you have enough white blood cells for fighting infection etc to be able to afford to lose a few - that's the simplest way of putting it I suppose! It's all perfectly normal.

I even had neutropenia, my neutrofils dropped to 0.3 (if memory serves they were usually about 12) - and I'm still here to tell the tale.

Like I say, this isn't a particularly fun life experience but you'll get through it just fine!!

Take care, Babes

Ails xx

I'm a big baby---Do those shots hurt?
Somewhere I read they do... What a wimp I am, huh? :eek:

Anyway, Hi Ails (& everyone else)
I just got back. My WBC is still low, so they sent me home & said, "Have a good week." I'm off target now...so, I'll go through October with chemo, instead of September. I'll have chemo next Friday, and also a shot of the Neu-whatever it is. They say you have about 2 to 3 days of back & bone pain with the shot---nothing that Tylenol can't help. Apparently, it works like a charm to restore those cells I've lost.
This is like a vacation! I have a whole week of no tests, no driving to the Oncologist, hospital, etc.. And all I have to do, is concentrate on building up those white blood cells. I'm much more confident today, after all you wonderful people filled me in. Last night, I was freaking--- I'm still not exactly "thrilled" about the chemo going longer throughout 2007, but..it could always be worse, couldn't it?
Thanks everyone. You help sooooo much.
:)

I've got NHL and now in remission for the 2nd time. This time though it devasted my Neutrafills sending them to nil. They're gradually picking up and thanks to 2 units of haemoglobin I feel stronger. Don't despair.

Martha,
Glad you're feeling better.
I'm finally feeling better, after 2 shots to boost my red & white blood cells.
It is amazing what they can do, but somehow, it seems you always have to feel "bad," before you can start feeling "better."
Those shots made me feel like I had the worst flu ever--it's subsiding now.
Good luck to you & I hope you remain on the up-swing!
:)

hey, I'm glad youre feeling better now. Do you get pain in your hips and bottom of your back when you do the shots? It is the same pain i was experiencing last year only nowhere near as agonising and i mentioned it to my onc today but she didnt think anything of it. She said the pain is perfectly normal but the point i was making was they thought where the pain was last year was a strange place because the mass was on my spleen and under my arm but my WBC was consistently high (like 30 when its meant to be 1-10) so i thought maybe the pain was my body trying its hardest to fight the cancer? Or does that sound completely crazy? I think i should be studyed.

xxx

These shots are making me miserable again.

Usually Tylenol helps...I don't know what's up with these shots, but, yes, the pain is agonizing & it's basically my "big" bones---lower back. It's almost as bad as when I had my son and had "back labor."

I keep waiting for it to subside---it's been relentless all day. Any tips, all you once-had-low-white-blood-count people? I'm using a heating pad & that helps the lower back, to a degree. I can't take anything with any narcotics in it--it upsets my stomach. So, I'm sounding pretty pathetic. I was SO hoping I'd accomplish some things today.

I can only imagine, Amanda, how exciting it must be, nearing the end of treatment. I have to keep reminding myself, I'll be there, too. Today happens to be one of my most trying days, and from what I understand, I'll be getting those shots every time! :eek: Anyone on this forum: Did you have to have red & white blood count 'booster' shots along with chemo everytime? I'd like to hear from you, especially if you have any coping hints.
Thanks.
S.

Yes I'm very excited thanks. Yeah i haev to do the shots myself the day before i go in for treatment. About 12 hours later the pain starts and I take dihydrocodeine to make it better. It is scary cause a couple of times when i wake up in the morning for treatment I can't move my legs, it's is the exact same pain i had last year and a few times i honestly thought i was paralised. It does go away after about an hour but i honestly can't walk in that time and just lie in bed trying to stretch and wiggle my toes! It's only happened twice though and I'm hoping it's just that I've lay i the one position at night and not moved so I've got kinda stuck.

How are you today?
xxx

Hi,
I guess these shots affect everyone, at one time or another.
Thanks---I'm feeling better today, but very leery of my remaining treatments, concerning the shots. The nurse "on call" yesterday, told me we'd either have to try another wbc booster-type shot, or lessen my dosage. That's been the hardest part of treatment (for me) so far. I was totally useless the last 2 days & went from the bed to the couch, over & over. My husband doesn't realize how agonizing the pain was, and left me for awhile, forcing me to deal with some issues here at home---I was NOT happy about that! I don't think men can relate to certain issues women have---maybe some men, but mine thinks a lot is "mind over matter"---and in some cases, it IS, but not the last few days. Anyway, I'm pretty good, so far. I just got up and if I'm mobile the first few minutes, that's a good thing!
Hopefully, today will be the beginning of a good "2nd" week after treatment for me. I find I miss the mundane, everyday things--like just shopping, visiting, even talking on the phone is not good, when you ache.
So .... I hope you have a good day. You're in England, right? Do you have an equivilant of "July 4th?" We've been watching the World news, (I haven't seen it today yet) and it looks like there's a bit of unrest in England right now. Hopefully, the World's problems will come to an end soon, I pray. :angel:
We have enough to deal with, don't we?????
:) Have a wonderful Saturday.