WBC Count Question

[MaryAlisha]

My sister's white count has risen the past few weeks? When would you worry that there might be an infection? She takes Leukine shots daily but has done this for 4 or so months and it's never risen like this. What do you think? Here is the past few weeks of her white blood count:

07/02: 15.09
06/25: 11.07
06/18: 6.68
06/11: 5.36

What do you think?

[Marlene]

You need to look at her ANC (absolute neutrophil counts). The total White Blood Count is made up of multiple types of white cells so you need to look at the lymph cells and neutrophils. There are percentages listed for each as well as an absolute number. It's the absolute count that's more telling. If you are seeing a rise in the ANC, then there's a good indication that the growth factor is working as is the bone marrow. Neutrophils are produce by the bone marrow exclusively whereas lymph cells can divide to create new cells independent of the bone marrow.

If it's just the lymphocytes, then it may indicate a viral infection. But you really need to look at the entire make up of the white blood count.

BTW...neutrophils and granulocytes are one in the same.

[MaryAlisha]

Here is more details: If it's blank for one week, then there was no level given.

I don't understand why her ANC when down this week.


6/18/08 6/25/08 7/2/08
WBC 4.6-10.2 K/UL 6.68 11.07 15.09
RBC 4.1-5.1 M/UL 2.05 2.33 2.48
HEMOGLOBIN 12.0-16.0 GM/DL 8 9.1 9.6
HEMATOCRIT 36-46% 24.7 28.3 29.3
MCV 78-102 FL 120.5 121.5 118.1
MCH 27-31.2 PG 39 39.1 30.7
MCHC 25-35 G% 32.4 32.2 12
RDW CV 12.5-18.04% 15.5 15.3 14.6
RDW SD 35.1-46.3 FL
PLATELET 124-424 K/UL 32 51 51
SEG 50-65% 63 49
NEUTROPHIL 37-80% 51.6
BANDS 11 4
LYMPH 25-40% 21.4 10 11
MONO 4-10% 4.9 1 3
EOSINOPHIL 1-3% 22 15 13
EASOPHIL 1-7% 0.1
ANC 3340 8190 7400

[Marlene]

IMO....Looking at these numbers leads me to believe that your sister did have a response to the ATG. But I will ask for other members with experience with ATG/Cyclo to give their opinion. Her ANC and platelets are up and if I remember, she's not getting any platelet transfusions. Depending on when her last red cell transfusion was, it looks like her red cells are up also. Another way to check red cells is to have them run Reticulocyte count. Again, they should get a percentage as well as an Absolute Retic Count. Reticulocytes are new red cells and this number would be elevated or higher than previous levels if she making her own red cells.

Even though you saw a drop in the ANC this last CBC, I would not try to interpret that as problem at this point. She has a normal ANC with the help of the growth factor. You always have to look at trend and not rely on just one CBC. Counts fluctuate all the time in everyone. That's a normal thing.

Personally, I would wait on a BMT if this trend continues. You can live a very safe life with these counts. At 50K platelets, you can have surgery without needing a platelet transfusion. Her White Count is normal with growth factors. (The WBC/ANC can drop 50 -70% when you stop the growth factor. That's scary but not bad as long as it stays in the safe levels). Red Cells look like they are also functioning.

But again, this is my opinion and it would be good to hear from others.

Marlene

[Neil Cuadra]

MaryAlisha,

Here are your sister's counts, but in an easy-to-read format.

                           6/18/08  6/25/08  7/2/08
WBC         4.6-10.2 K/UL     6.68    11.07   15.09
RBC         4.1-5.1 M/UL      2.05     2.33    2.48
HEMOGLOBIN  12.0-16.0 GM/DL   8        9.1     9.6
HEMATOCRIT  36-46%           24.7     28.3    29.3
MCV         78-102 FL       120.5    121.5   118.1
MCH         27-31 .2 PG      39       39.1    30.7
MCHC        25-35 G%         32.4     32.2    12
RDW CV      12.5-18.04%      15.5     15.3    14.6
RDW SD      35.1-46.3 FL
PLATELET    124-424 K/UL     32       51      51
SEG         50-65%                    63      49
NEUTROPHIL  37-80%           51.6
BANDS                                 11       4
LYMPH       25-40%           21.4     10      11
MONO        4-10%             4.9      1       3
EOSINOPHIL  1-3%             22       15      13
EASOPHIL    1-7%              0.1
ANC                        3340     8190    7400

[sandra]

I am surprised her doctor said nothing. Something is DEFINITELY happening. I am puzzled by the high percent eosinophiles, usually it means an allergic reaction or a parasitic infection. Also, you should stop the Leukine (altogether in my opinion), but certainly until you figure out what's happening. Try to contact the doctor ASAP, say you are concerned and ask him/her to come up with an explanation for ALL the numbers.

Sandra

[MaryAlisha]

She is on growth factors for both white and red. She is on Leukine for the white blood cells and Aranesp for the red. Her doctor said the ATG didn't work and that she doesn't want to do the 2nd one incase she wants to pair it up with the bone marrow transplant.

The doctor said there is no other option and that we need to do the transplant. She'll die without it. It seems from what I read it is fatal without a transplant.

Her energy and physical levels aren't normal. If she even goes shopping or to the mall, she is wiped out for the whole day. It's like her quality of life is so low and I can't imagine her never being "normal" again.

I guess I'll just have to keep an eye on her levels and see what they do in the next few weeks.

Neil,
Thanks for the format. I actually set up an Excel document and have it all neat and easier to read than I posted it.

[MaryAlisha]

I read something earlier about high eos. #'s but don't remember what it said. I faxed the results to the dr today b/c the lab was late in getting them to me. The dr is only in clinic on Wed and Fridays and tomorrow is the holiday. I have lots of questions that I'm going to call on Monday with and hope that I get some sort of response.

[ccartbmw]

Hi,
Just remember it takes 6 months to a year for ATG treatment to work. I had my ATG treatment on April 1,st. My levels are just starting to increase. This is my second treatment I had the fisrt one in Jan 2005.

[MaryAlisha]

Her ATG was in the first part of Oct. 2007. I'm just going by what the dr said w/ it not working.

[Marlene]

I too agree the WBC growth factor needs to be reduced then stopped all together. I also feel you would benefit greatly from a second or even a third opinion from some doctors who have extensive experience with AA. I would suggest either you or doctor consult with NIH, Dr. Neal Young. And Dr. Margois from Childrens Hosp of Wisc. is very well respected by parents whos children have AA. If your doc won't or takes offense, you can contact these docs on your own. There are others on this board who have done that and can help you.

I find it disturbing for a doctor to predict the outcome of death for anyone with AA, especially so early on in treatment.

[Marlene]

Here's a Webinar hosted by Dr. Young that you may find interesting.

http://www.aamds.org/webinar/present_3/qt_holder.html

Based on your sister's labs, she would not be classified as SAA at this point.

Marlene

[Wendy Beltrami]

Mary Alisha,
Oh my gosh, don't let that doctor tell you that she will die without a transplant! Crazy! There are plenty of people here on this list LIVING normal lives with AA every day.

My son has had AA for 10 years. We are only now, moving to transplant. Thank goodness we waited. The progress that has been made with transplants over the past 10 years is phenomenal. There are always pros and cons with transplants and treatments. For us, delaying transplant was the right choice and every patient's circumstances are different. Our son did not have a sibling match, nor does he have a perfect match in the registry.

It has not been nearly enough time for your sister's doctor to declare that the ATG didn't work. Sometimes it takes months and months and with counts like that, you don't need to be in a hurry.
As Marlene said, the wbc is meaningless on its own. The Absolute Neutrophil Count or ANC or Neutrophil # is the important thing to watch for when she gets her CBC done.

It is patients with neutrophil counts below 500 that do not respond to growth factors that run out of treatment choices. These are the patients who will most likely need a transplant. Their inability to fight infection is the concern with these patients.

You still have choices! In the end, you may choose to proceed with transplant but I doubt that any doctor with AA experience would push for a transplant at this point.

It would be a good idea to explore whether or not she has any donors. Have you been tested as a match? Knowing whether she has a matched donor, either related or unrelated, is a good piece of information to have when making treatment decisions.

As Marlene mentioned... Dr. Young at NIH or Dr. Margolis from Children's Hospital of Wisconsin or Dr. Maciejewski at Cleveland Clinic would be excellent for second and third and fourth opinions.

Wendy/ mom to Grant Age 16.5
dx 12/4/98 AA
ATG horse
ATG rabbit
cyclosporine
mycophenolate
prograf
xenapax
danazol
anadrol
acupuncture
herbs
We've done it all!