Just diagnosed and waiting for genetic prognosis

[Kerpaka]

Hi,
I'm a 57 YO female and was just diagnosed with early stage MDS. Had a few blood tests, ultrasound and a BMB. My blood work is as follows:
WBC 4.4
RBC 3.37
HB 119
HCT .346
MCV 102.8
MCH 35.4
MCHC 344
RDW 14.3
PLT CT 55
MPV 7.2
All absolutes are in normal range except Absolute Lymphs are a little low 1.4

I called last week & found out I have 0 blasts. The dr said I will have to wait and watch and get a blood test every 3 months. He also said I will probably need Vidaza later on.

I stopped taking my low dose aspirin and nexium because a side effect may be low platelets. I also stopped aspartame because I read of a connection to low platelets.

My next appointment is Aug 12th and I will find out the genetic piece to this disease.

I would appreciate your opinions on my status and whatever questions you think I should ask my dr (hematologist) the next time I see him.

Thank you.

[PaulS]

Hi Kerpaka -- sorry to hear about your diagnosis -

The numbers you report are a little different than I'm used to - but it looks like you are normal or nearly normal in everything except platelets - which look fairly low - but not dangerously so. Am I reading your numbers correctly?

I assume they found dysplastic cells in the marrow which led to the diagnosis of MDS? Its great you have no blasts. Have you had low platelets for a while? Any other symptoms? How do you feel?

If you cytogentetics come back OK and your counts stay stable you could be watching and waiting for a while. The course of the disease varies significantly and some people go many years just watching. Lets hope you are one of them. In the meantime, make sure you have a hematologist you feel good about and who answers your questions to your satisfaction. You may consider a second opinion from a center/doctor specializing in MDS - I believe there is a Center of Excellence in Toronto -

When and if to start Vidaza can be a tricky question - but it seems for now your doctor is being conservative - which is not a bad thing. As long as you feel good and your numbers stay where they are - life is good and enjoy - and try not to worry too much. If things change, there are treatment options that may also work for a while - maybe a long while - The only cure is a transplant - but it sounds like you are a ways from having to think about that route - Stay positive - Best wishes, Paul

[Marlene]

Hi Kerpaka,

I notice you were on Nexium. These types of acid blockers will block or reduce you body's ability to breakdown and absorb nutrients from your food. Especially B12. It is important to know what your B12, folate, copper, zinc, D and iron levels are. A low-normal B12 is suspect and in all blood disorders. Any low-normal or high levels can indicate absorption and utilization issues. Your doctor should have checked this so get a copy of the results. If your B12 is under 500, I would consider fixing it.

Also, it's important to stop all supplements 3 -4 days prior to testing so you don't get a falsely elevated levels.

Most of us are deficient in D. There are many posts on this site addressing D3 and K2 supplementation for MDS. You may want to search on this site for B12 and Vitamin D.

Marlene

[Kerpaka]

Hi Paul and Marlene,
Thank you for responding.

Paul - Yes, those are my most recent CBC numbers. Most of the numbers are either higher or lower than the normal range but just by a bit except the platelets which are at 55. I feel ok and I found out about the low platelets from a routine CBC. During my follow-up phone call, I found out that one Dr didn't see MDS but another Dr who is the head of the department and very well regarded saw, I assume, dysplastic cells. I'm pretty new to all of this and have been educating myself via websites and forums like this.

I will be moving back to the States shortly so once I have my insurance in place, I will see a new hematologist and get a second opinion. Will definitely go to a MDS Centre of Excellence for the 2nd opinion.

Marlene - After my first appointment with the hematologist, 8 tubes of blood were taken so I will assume they checked all of my levels. I will certainly ask for copies of all my reports when I go back. I did read about D3 and K2 and will be purchasing the supplements. Thx for the info on stopping the supplements days before my next CBC.

Thanks again and I appreciate your time in responding to my thread. I am all ears!!

Kerpaka

[bailie]

Kerpaka,

Firstly, everyone seems to have a different experience. My experience was similar to yours with the CBC. That certainly doesn't mean that we have a similar prognosis. They found my MDS with a routine CBC following a kidney stone attack. I felt totally normal at the time. Looking back then at previous CBCs it was only the low platelet count (113) that might have been an early indicator. Then a year later all counts took a nose dive.

The very important thing with this disease is to catch it at the earliest possible time, so you are doing very well by monitoring this at this time. Hopefully, there will be nothing that will show up. I wish you the very best.

[Marlene]

Forgot to mention that they should screen you for the H pylori bacteria that causes ulcers as it too can have an impact on bone marrow. There have been cases where once the h.pylori was resolved, so too was the MDS. It's not common though but should be ruled out just the same.

Many chart their results in order to see trends. Following trends help you track the progression or lack of it.

[tom30]

Hi, While 8 tubes of blood work sounds comprehensive it may not be, I had to ask for many of the tests tests that Marlene mentions, I requested Cooper, zinc and magnesium work ups. If you drink any alcohol it could affect your numbers, it is also toxic to marrow.

[rar]

Originally Posted by tom30

Hi, While 8 tubes of blood work sounds comprehensive it may not be, I had to ask for many of the tests tests that Marlene mentions, I requested Cooper, zinc and magnesium work ups. If you drink any alcohol it could affect your numbers, it is also toxic to marrow.

My record was 23 tubes of at one time. It was good I had a port at that time.

Ray

[Kerpaka]

Thank you everyone for your comments. Just obtained a copy of my diagnosis of the bone marrow biopsy:

- Mildly hypercellular marrow for age (55-60%) with trilineage hematopoesisis showing small, hypolobated megakaryocytes in decreased numbers, increased erythropoiesis and mildly left shifted myelopoeisis.
- no increase in blasts.
Note: Correlation with bone marrow aspirated and molecular oncology/cytogenetics is recommended to rule out melodyplastic syndrome.

Opinions please. Thank you.

Kerpaka

[Kerpaka]

Darn Spellcheck!!

[Neil Cuadra]

Originally Posted by Kerpaka

Darn Spellcheck!!

When the spellchecker changes what you typed, you can click the Edit button after the fact and fix up your previous post.