Low White Blood Cell count

debneal

Low White Blood Cell count

debneal

Hi all,

I am new to this forum, so bear with me if I am starting a topic that has already been discussed.   Back in August, there was a "mass" in my lung that 4 doctors looked at the CT and could not tell if it was an infection or cancer.  Antibiotics cleared it up, so my oncologist concluded it was pneumonitis.  At that time, he decided to start testing my tumor markers.  CA27.29 was 48.3 the first time, this week (3 months later) is 40.  However, my WBC is decreasing.  It has been at 4 (low end of normal range) or below since the spring of 2008. My last 3 blood tests it has been getting lower:  Aug 09 was 3.6, Nov 7 was 3.2, Nov 18 was 2.8.    When I expressed concern to my onc, he became very defensive.  He said the only way to tell is with a bone marrow biopsy and that he was NOT going to do that.  He said as long as I am feeling fine and having no symptoms, he said he'll see me in 6 mos.  He then said "the chemo may have caused permanent damage" to which I said I finished chemo June 06, why is it going lower now, he said "I am not guaranteeing you that there isn't cancer, but even if it was, we couldn't do anything about it".  HUH?????   My only other symptom, which I have complained of constantly for 3 years, is fatigue.  Some aches and pains too, but they come and go.  Has anyone else experienced WBC (mine was normal 6.5 before the whole "C" thing) and what might it be? 

Deb

Faith316

Can't help with your question about WBC, but if your oncologist isn't working with you, maybe it is time to find another one?

brena

Deb,

Just thought I would drop u a line because you are describing me exactly. My chemo finished in May 08 WBC was average for the remainder of 08. Jan of 09 it started taking a dive and every three months we would watch it drop little by little, but well below normal 2,7 etc. I tried everything, exercise, vitamins, eat healthy foods etc. but nothing budged it. My last cont finally met the minimum, I will have another done within the next two weeks. I have also had extreme fatigue but am dealing with insomnia so not sure if one is affecting the other.
Fatigue is a different feeling from insomnia, I can differentiate between the two. My Onc said he has seen this before and it usually stems from the chemo, so we wait. I am hoping my next count continues to increase, still fatigue.

Wishing you lots of luck but definitely a Dr; that is willing to work and listen to you, you are the customer/patient.. Maybe someone else will come along who has also experienced and can give some insight good or bad.

take care,

momtobkandsd

The same thing has been happening to me, too. I finished chemo in Dec. 08 and then rads in April 09, at which time my wbc, which had been bottomed out for the duration of my treatments, started to go up. I had a couple of normal counts, but then in Aug. it dropped to just below the "low" number. Last week, even lower. Extreme fatigue -- yes! 

 My onc brushed aside my concerns about why it was dropping, but not to the degree that yours seems to be. We take too much crap from our doctors sometimes. They know they would not want to be treated that way.

Hope you get some answers soon. 

TammyLou

Low WBC.  Yup.  4 years out from my last hard chemo and my WBC is in the ditches.  Yup.

tl 

chainsawz

This may be caused by chemo, but your doctor should be able to communicate better and support you.  If he can't do anything about cancer, then he is in the wrong field.  This is your life - you might consider finding another oncologist and firing his fanny!!  You are paying him tons of money for a service and he needs to earn it!! Good luck :>  lisa

SQK

Hi all,

This has happened to me too.  Before chemo -- I finished 4 rounds of T/C in June 2008 -- my WBC was always in the normal range.  Now it seems like every time I get bloodwork done, it comes back low.  It was so low before one of my reconstruction surgeries last year that I had to take some steroids to boost it up before the PS would operate.  My last test came back 3.2.   I saw my onc for my 6-month checkup yesterday and I asked him about it.  He didn't seem overly concerned.  He asked if I was getting any infections or anything like that.  I answered no, that I've been feeling fine, not even any fatigue (though I've had insomnia for years, even before BC).  The doc said the low WBC was mostly likely a side effect from the chemo.  I'm assuming this is just my new normal.  But I'll be keeping an eye on it.

All the best,

Sue K.

CoffeePot

  Have you ever heard of Myelodysplastic Syndrome (MDS)?  It goes by other names as well, like smouldering leukemia or pre-leukemia.  Most often it is a disease of the elderly or those exposed to benzene or chemo and/or rads.  I finished chemo in Dec. 2005 and my blood counts never returned to normal.  I was extremely fatigued.  My onc said I could be one of the 5% that never bounce back from chemo or I could be developing mds.  There are other blood values looked at in a dx of MDS, for example large MCV and platelets.   My onc was checking by blood every 3 months until recently.  This year, after I switched from Tamoxifen to evista, I feel so much better--almost day by day.  My rbc and wbc are still low, but the neutrophils are ok now and the hemocrit/hemoglobin are ok. I did develop shingles a year ago when my neutrophils were low, though.

I was scheduled for a bone marrow biopsy earlier this fall.  But because even if I had mds, I would still be in the watch and wait category, and because she does bmb in the office with only pain medication, I decided against it.  If my counts go way down, I would have one.   Another positive for me is that my counts are low, but they are stable--they are not going down.  My doc said that most likely if I were developing mds, they would plummet.  I don't know.  I think most oncologists don't want patients to worry--especially about something that is caused by the chemo they prescribed.

So, I think your doc is behaving just the way mine did.  It took her a while to admit that most of her patients didn't have such low blood counts years later.  Yours worry me because they continue to drop.  However, as long as you don't need transfusions or boosters or whatever, there really is nothing she can do.  And I guess they have a point--if you had MDS, there is no cure.  I don't know about anything else, like bone marrow mets or something else--this is just for mds.

Good luck!

debneal

Thanks for all of your feedback, it is very helpful!  At least I know I am not alone.  I mean, you can't make this stuff up, and why would anyone want to :-)  CoffeePot, you made me think too if it's the Tamoxifen that is contributing (at least to the fatigue).  Well, at least I can look forward to switching to an aromotase inhibitor in 2 years!  Amazing the things we now get excited about....  My onc is usually pretty good; I think I took him by surprise when I rattled off the dates & WBCs since 2008.  I do have a really good gynecologist and I know she will give me feedback on this.  I think I'll just wait 'till after the holidays and see how I'm feeling.   I'll post an update if/when I find anything out.  Everyone have a great holiday season!

Deb

brena

I will be getting my next round of bloodwork done within the next two weeks so I will see if it is improving. I am not on tamoxifen or an IA and still experience the fatique, insomnia etc. Am scheduled with an Endrocronologist next week in hope to get some help. Crossing my fingers.

Even though wbc are low I don't get sick, do stay away from everyone who is and always take precuations.

debneal

Brena,

Curious about if you got your bloodwork, and if there is any new info.  I did the whole endocrinologist thing back in spring of 2008.  It all started because some bloodwork pointed to a possible overactive thyroid, but turns out NOT.  Last few weeks, I have a few other "symptoms" that are cropping up, but I am going to just ignore until after the New Year when I see my gynecologist (OH that's right, how often are we supposed to go for that now - every 3 years??).  She always takes the time with me, never makes me feel like I am a hypochondriac.  As I always tell my husband, when I get on my worry wagon with assorted symptoms, "I don't want them to find anything wrong with me, but I know that there is".  To which he replies "Did you take your anti-depressant today?"

weety

debneal, Oh gosh, your husband sounds just like mine.  I had to ask him the other day if I can be considered a hypochondriac once cancer is diagnosed.  I worry about every little thing.  I found this thread because I'm having issues with my bloodwork a few months out of chemo.  WBC are low, then normal, then low.  They're kind of bouncing all around.  I'm hoping my bone marrow is just trying to "regulate" them. 

What worries me is my platelets, though.  Before chemo and cancer I always had high-normal counts (sometimes even slightly over normal by 10 or so points) and during chemo they bounced around a little bit, but always were within normal limits.  Now that chemo is over (3 months ago) they seem to be going in a downward trend.  In 2 months they have gone from 296 to 256, 249, and now 215.  I'm worried about this downward trend since each blood draw was 2 weeks apart.

angelsabove

My last chemo was on Nov. 16th 2009.....I then did 32 radiation treatments. I am 5 weeks post all treatment. I did my first blood work yesterday and my count was 4.5. 

I m so glad I found this thread. I have a CHEMO buddy who has cervical cancer and she had been going and her counts were down to 1.5...then 2.5....but they seem to go up then back down. She was asking me about it and I said GIRL I JUST DONT KNOW. She did ask the Doctor and was told it could take years to get back to normal...UUUGGGGHHHHH not a good answer....

LOVE YA LADIES 

lopsided_blogger

My counts were finally going up after chemo, radiation and herceptin, but then they fell for several months into lower than normal territory again. I asked my onc about it, and he was a little defensive like someone else mentioned. I pressed him about what it could be, and he mentioned chemo-induced leukemia after saying, "You're not really going to make me say it, are you?" So clearly, they don't even like talking about that possibility. I can understand; neither do I. However, he stresses it's most likely just a result of chemo and that it can keep the counts low for a long time, and apparently make them go up and down as well. I've decided to keep an eye on it, but not be too concerned. After all, I have to spread my worry out to cover all the other odd things my body does now or that I notice more now... 

weety

lopside blogger, thanks for sharing about your blood counts.  You are so right when you said that you have to "spread (your) worry out to cover all the other odd things. . ."  I feel like at any given time, there are at least 5 or 6 things that I'm worried about!

brena

Hi ladies,

Stumbled across our old thread, since my last update i have had 2 blood drawn and both have dropped again. This most recent round my WBC is down to 3.1m the ABS also dropped to 14000, below normal and Vit D is down to 25.

Again, told this is not a concern that low is probably a result of chemo. So just wait and watch, would like to know if others still dealing with low WBC. I feel fatigued all the time.

take care ladies,

weety

Mine (WBC) still are bouncing around near the high 3's to low 4's.  Once in a while I hit 5.  My onc still checks them every 3 weeks before my herceptin.

Bibbie

Hello Everyone:

I am happy to say this week is my 3 year anniversary from IDC, stage III, 6 + nodes and ER, PR+ Her negative. I have had lot's of scares but thank God I am still alive. My liver enzymes are always elevated but I have had an MRI and it  was a cyst on my liver. My blood calcium level was high last appoinment  but no problems. This week my blood protein was slightly elevated I am waiting for the results. I am afraid of multiple myleoma. Has anyone had this problem?

All my love and blessings for all of out there with this terrible disease.

Love to all!

Bibbie