Can anyone help with some answers?

[billboy]

Hunter Bob,

There are several MDS articles referring to pancytopenia (all three blood lines low). Here’s one"

http://emedicine.medscape.com/article/207347-overview

When you open the article click on "next page" and you’ll see a reference to pancytopenia in the second paragraph. I think the whole article is very informative in general.

I realize I asked for your WBC; however, that’s not really all that important. What is important is the breakout of WBC, namely your ANC (absolute neutrophil count) and your ALC (absolute leukocyte count). The only time I had sustained pancytopenia was during my cycles of low-dose chemo – this is not unusual when receiving such treatment.

If Procrit works for you it may take several weeks before reaping that benefit. Hang in there, you may be close to a significant improvement. And as has been said many times before on this forum, everybody is different and reacts differently to prescribed treatments.

Vasikka,

You’ll want to ask your doctor about this, but since there are no test data for such dosing that I’m aware of, here’s my take. A given dose of Exjade removes a given amount of iron from the patients body dependent on the dose and patient’s weight. I can’t see how the frequency of dosing would change that. If you have kept all your data maybe you can answer your own question, with a review of that data. I have occasionally skipped a dose day for various reasons. Did it make a difference? Don’t know especially since the monitored parameter is serum ferritin, which is an acute phase reactant, which means it increases due to inflammation of infection anywhere in your body. So in the short run it’s really hard to draw conclusions about actual iron stores in the body or the effects of Exjade. Your husband’s platelet counts and ANC (560) are pretty low. Fortunately he’s being closely monitored with CBCs at least every two weeks if I understand your comments correctly.

[Hunter Bob]

Billboy – I got out my recent bloodwork reports: Neutrophils 54%; Neutrophils, 1.4# – didn’t find any reports for leukocytes but did find report for lymphocytes 40% and 1.0#. Guess that proves I don’t know what I’m looking at when reading these reports. Don’t find any wording that says "absolute count" either.

Will read the article you refer to – so much to learn and try to understand.

Thanks – Hunter Bob

[Zoe]

Bob,

Your absolute neutrophil count is the actual number count (1.4). I believe that around 1.8 is normal low end. So unless your counts have recently dropped, you are OK I think (I am not a medical professional). Recent drop may indicate a trend of lowering counts, and should be monitored. I am really tired, but I just read the last post, so hope that helps.

Zoe

[vasikka]

Thank you for the observation on low ANC and platelets. Today they are ANC .490 and 9000 plts.Is it possible that the Exjade could hasten this type of process.My husband is going to get Plts. tomorrow.Maybe Neupogen as well if it would help.I have tried finding answers to questions, but the pharmaceuticals are not very accommodating.I just found out that getting the Exjade through Canada ( 1560 dollars) was not possible because Medicare has exlusive contract with Script at the cost of 4400 dollars and Mayo wont give Rx. to outside source.Would be nice to save the money for Medicare.MDS is a very frustrating disease to get adefinite treatment plan.

[billboy]

Vasikka,

There are guidelines which I expect your doctor is quite familiar with, regarding interrupting Exjade dosing, when cytopenias develop/become more severe. See the following as an example:

http://www.rxlist.com/exjade-drug.htm

It is most definitely possible and has been recorded that Exjade may produce results adversely affecting blood counts, liver, kidneys, etc. All noted in the article above. Wholeheartedly agree that MDS is a very frustrating disease to treat.

Your husband’s counts are very low, hope he soon responds to his upcoming treatment.

Hunter Bob,

Bob I was wrong, I meant absolute neutrophil and lymphocyte counts. So your ANC and ALC were 1400 and 1000 respectively. The numbers you gave were before multiplying by 1000. On your lab report you also have a reference range for these values (different labs have somewhat different ranges). On my report the ranges are 2.2 – 4.8 and 1.3 – 2.90 for ANC and ALC respectively (all times 1000). So your reference ranges are probably similar indicating that indeed your getting low. Here’s a link that provides some assessment of low ANC counts:

http://www.globalrph.com/anc.htm

No doubt you can find one on ALC as well if interested.

Hope this helps.

[billboy]

Vasikka,

I was thinking about how low your fathers ANC was – it would be classified as severe by most accounts. Here’s as excellent link on neutropenia:

http://www.realnurseed.com/t1000.htm

Especially note the paragraph "Prevention is Worth a Pound of Cure" as it identifies steps that can be taken to minimize the risk of infection. Hope your father has a better report soon.

[Hunter Bob]

I’m just curious: Not sure how my bloodcounts fare in the big scheme of things — are they really horrible? Is this just the beginning of a big drop to come?

Any idea how these numbers look to others who have been treating this for awhile? Below are the numbers that are either way above or below the norm:

WBC 2.5
RBC 2.69
HGB 8.8
HCT 25.1
Platelets 25
Gran# 1.2
Lymph% 4.4

Just had my third Procrit shot (1 a week), no blood for 2 weeks, above numbers are fractionally lower than last week.

Thanks for any input – Bob

[Mary4Mike]

Bob,

What was your HGB prior to your transfusion? Your platelets are extremely low.

Mary

[Hunter Bob]

The last transfusion of 2 units red blood was 2 weeks ago. My HGB before the transfusion was 8.1. They measured the HGB 4 days later during the usual CBC and it had gone up to 10.2. Three days later I had another CBC and the HGB measured at 8.7.

I was just on a web site indicating how to calculate the ANC — I don’t know which numbers need to be watched, etc.

Bob

[billboy]

Bob,

You have thrombocytopenia (low platelets), anemia (low HGB), neutropenia (low absolute number of neutrophils) and lymphocytopenia (low absolute number of lymphocytes). A search on any of these "penias" will provide a wealth of info. For example here’s a link on thrombocytopenia:

http://www.mayoclinic.com/health/thrombocytopenia/DS00691

This provides some guidelines on care and resulting conditions in addition to other info.

Your anemia numbers are similar to what I experienced early on, before low-dose chemo. And you seem to be getting the "rule of thumb" increase in HGB for each transfused unit of packed red blood cells, ie one.

The numbers you posted on April 4 suggest that your ANC is about 1200 based on the 1.2 granulocyte number, granulocytes include neutrophils, eosinophils and basophils, but the number of the latter two are usually very low compared to number of neutrophils. However the number lymphocytes per microliter of blood is really low, yielding an ALC of only 110 (WBC of 2500 times the 4.4% or .044). See the following link on lymphocytopenia:

http://www.merck.com/mmhe/sec14/ch174/ch174d.html

In all this though have hope as you’ve just begun to fight – there are many treatments which may be invoked by your doctor.

Lastly the key numbers to watch, from my perspective are HGB,
ANC, and platelets, but check with your doctor to see what he or she is keying on.

[Hunter Bob]

I’m familiar with all the "penias" and have visited several sites. Guess I’m just trying to brace myself for what’s ahead and any indicators that show this disease is headed in a new direction.

Thanks for the advice about watching HGB and platelets – that’s what I’ve had my eye on for the last 4 months before I was officially diagnosed.

Sure puts a damper on what you normally do – I’m a fisherman who enjoys tromping in the bush of Canada, going to back lakes, hauling boats over logs and beaver dams . . .ha – guess that’s not happening this year. . . . planning on changing where and how I fish.

Thanks again – Bob

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