New Here - Anyone else start out with Neutropenia before MDS dx?
 

First of all - I am so glad I found these forums! Thanks to the Cuadras for starting them and for everyone who posts info and encouragement here!:)

I just received my dx on 3/27/15 at age 57. Here is a brief chronology:

Jan 2014 - get full blood panel done - just wanting to check blood sugar and cholesterol because I just turned 56 and it had been awhile. WBC comes back at 2.3, RBC slightly lower than range, Platelets normal. GP says will test again in Feb. - Feeling fine- asymptomatic.

Feb 2014 - retest comes back with almost identical results. GP says retest in 3 months or so since I am healthy adult otherwise. Same results in May 2014.

7/30/14 - after having mild odd pains in abdomen, sent for CT scan - admitted to hospital for burst appendix that has abscessed. Develop bladder infection in hosp. Finally released after a week. Sent for hematologist referral because of low WBC.

9/14 - Hematologist visit - sets up BMB 2 weeks later - BMB is dry tap, but bone marrow results comes back normal. Dr. schedules blood test in 3 mo.

12/14 - CBC done - results about the same as before. I am still in good health. Dr. schedules next blood test in March.

3/15 - CBC done - 1.7% blasts in blood test, BMB done 2 days later - finally have MDS diagnosis - RAEB Int 2, blasts at 14% in marrow. WBC 1.9, RBC 4.15, HGB 11.8, PL 217.

4/15 - Met with BMT Specialist in L.A., approved for BMT and donor search started. First round of Vidaza started this week. 7 days on, 3 weeks off until donor found.

Still feeling good, drs. are optimistic because I am in relatively good health otherwise except for a swollen lymph node that I would happen to get the day I start chemo after not being ill for months which is going away. Chemo still started because I have no fever.

Still working full time until BMT prep starts.

My main question is, is there anyone else who had neutropenia/leukopenia with the other blood counts being in the normal range or just under normal range before MDS diagnosis?

Thanks,
Tracey

Here are some of my blood tests. First col is test name, second is value 6 months before diagnosis when the doctor declare that I had a minor problem that would probably never need treatment, third is when I was told I had MDS RAEB2 and that it was serious, 4th col is the standard range.

ANC 1.0 0.3 (1.6-7.5)
HCT 40.7 36.2 (42-52)
HGB 13.6 12.1 (14-18)
RBC 4.36 3.85 (4.6-6.2)
WBC 1.1 2.2 (4-10)
PLT 150 248 (150-400)

So to answer your question WBC and ANC were low even 6 months before diagnosis and the others were in range or slightly below range. At diagnosis ANC was critical while the others were not too bad.

Hopes it helps. Wish you success with your BMT. I had a SCT 1 Jul 14 and after some minor bumps in the road am doing pretty well. If you search on rar you will find some of my story.

Ray

Thanks Ray. I did search on RAR and your story sounds a lot like mine.

Glad you are doing pretty well, even with a few bumps in the road.

I am terrified of what is coming, but realize I need to focus on being as healthy as I can for the BMT. I will be getting the BMT at City of Hope. I have 2 teenagers and a husband I want to still be here for!

Thanks,
Tracey

Hi Tracey. I'm sorry you've been diagnosed with this strange disease. Sounds as though you have a good basis for a successful transplant, but no doubt you are aware of all the associated risks as well. I wish you all the very best as you prepare.

I was diagnosed in 2011 after 6-7 years of chronic idiopathic neutropenia and lymphopenia and hence low white cells. A biopsy in 2008 didn't show MDS but one in 2011 after a severe bout of bacterial bronchitis did. See my signature block below for more info.

The good thing about me knowing I had the white cell problem for all those years was that I already knew how to avoid and to fight many threatening infections by the time the MDS diagnosis came along. The other good thing is that also being diagnosed with hypogammaglobulinaemia has necessitated having 4-weekly Intragam infusions, and I think they have made a tremendous difference to my vulnerability to infections too.

Interestingly after a few months break this year from taking vitamin D3 my platelets started dropping (from avg 130,000 down to 117,000) but now that I've started back on the D3 they are back up again today to 132000. Perhaps D3 also influences other cell lines as well as all my other results are also increased today and FYI are as follows:

Hb 11.8
WBC 1.9
Neut 0.9
Lymph 0.5
Mono 0.4

This is the best ANC I've had for ages.

Hi Cheryl,
That is great news about your ANC!

I have seen some of your posts here and was amazed that you were able to cancel your planned BMT.

I have no idea how long I have had low WBC and ANC. I did have my gall bladder out 10 years ago and requested my med recs from that - everything was normal then.

What other supplements do you take other than the D3?

Thanks,
Tracey

I don't take any other supplements besides the D3 regularly, Tracey.

When I feel the slightest hint of a sore throat I take a 1000 mg capsule of Echinacea and continue to take it 2-3 times a day until the sore throat goes - most times it does if I catch it early.

I'm vulnerable to UTIs so I keep a good supply of Cranberry capsules 15000mg on hand and start taking those at the slightest hint, plus drink heaps of water of course. I break the capsules into water and drink that for the fastest effect.

Sucking on cranberry capsules (sour) is also excellent along with the Echinacea to help fight sore throats.

As far as wounds go, I just soak a dressing in hydrogen peroxide and apply it for a day or so.

I also avoid dairy foods and foods containing cane sugar. Honey is fine. Occasionally I indulge in something dairy and/or sugar sweet and I always regret it because those things give me a lot of phlegm, which creates a wonderful environment for a respiratory infection!

Having said all that, I still have to have antibiotics every now and then and the effect is always to drop my white cells afterwards for a month or so.

Vitimin D3?
 

First TracyN11, to answer your question.

My GP raised questions about my declining ANC round about 2008. At that time was slightly below normal range, about 2, but a review of my annuals shows a many year gradual decline. By 2011 it was .6. Following a full workup my DX was idiopathic neutropenia. Neupogen brought it back up. Having no symptoms I chose to ignore it until the skin abcess parade of 2014. Then the DX? MDS. ANC .28. 1/2 year ago, ANC .08.

I am startled at your very rapid progression and seeming rush to BMT. But if I understand things correctly, MDS is a spectrum of disorders, and maybe what makes sense for you does not for me.

OK. Cheryl. My question. What is vitimin D3? What hypothesis if any supports its use against MDS? Remission is fantastic, but how do we know it is due to D3?

Hi akemwave - I wasn't implying that D3 caused my drop in blasts back in 2012. Even though I normally get sufficient sunshine my body doesn't make sufficient D3 and that's why I supplement. An added bonus is that it seems to keep my platelets a bit higher than they normally would be. It's worth having your vitamin D level checked if you have MDS.

Some info for you: http://www.pdsa.org/treatments/compl...pplements.html (read right down to the experiences)

Also see http://www.hopkinsmedicine.org/heart...the_heart.html

D3
 

Hi Cheryl C ( Alfacalcidol) D 3 was the first thing my haemo put me on to never heard of it goggled it and found that it was V.D3 I have a question Last week Wednesday I had my Vidaza Thursday I had my injection as usual later on in the evening I was so sick Garry rang and I was admitted into hospital The E.D. treated me as a neutropenic they transfused me with all the antibiotics took bloods and sent me of to ward 26 single room. Now I got the results of the first lot of bloods before I start Vidaza they read Hgb 109 WBC 1.6 ANC 0.7 Platelets 63.. After I was admitted and before going to the ward they read Hgb 116 WBC 1.6 ANC 1.2 platelets 68 When I was discharged they read Hgb 100 WBC 1.1 ANC 0.44 Platelets 59 why the huge drop in the ANC I'm only having half the amount of Vidaza now due to the side effects won't stop having it and I'm trying to make my body except it.:

Faye, that's a common side effect of Vidaza. I commonly had neuts of zero while on Vidaza. Luckily, although I almost always got a fever, I was able to be managed on IV antibiotics through a pump that I was sent home with. This happened every cycle for the entire six months I was on it and my haem actually increased my dose from 70mgs to 140mgs when it wasn't helping my RBC to improve. I think all haems work and think differently. By the way, I was also started on Vit D3 due to low blood levels but despite years of replacement my blood levels have never risen to anywhere near normal values. It seems as if a lot of MDS patients have Vit D issues.

Hi Faye - just a thought - do you have complex cytogenetics? From reading posts on this forum I gather that sometimes medications work differently for different people because of the added complication of their cytogenetic status.

Hi Chirley - was just about to post to you to see how you're going!