Recent MDS diagnosis correct? next steps?

[Eric Bray]

Hello Everyone,

My girlfriend was recently diagnosed with MDS. I’m wondering if the diagnosis is correct and what the next steps might best be. Her hematologist wants to wait and see and continue tests every 2 months. She has been seeing him for a year. I know that a second opinion from a doctor is the best idea and we will do that, but I can see that there are people in this group with a lot of experience in this area so I am asking for advice here as well.

Her Background: She is 50 years old, Japanese female. Generally healthy, very thin with bmi of 17 or so. Vegetarian. She takes medicine for hypothyroidism. Has had her heart checked and it seems to be firing ok.

Symptoms: 2-3 years ago she started feeling very fatigued and short of breath upon waking in the morning or after naps. She also says she sometimes sees black or white when she stands up. She wakes at 7 and has a job that requires her to leave the house around 8, walks to the train station, stands on a train for an hour before work. All of which is hard for her, by 1 pm she says she feels better. She does a 20 minute jog at night after getting home around 8 pm but feels pretty tired afterwards. She goes to sleep around 1 am.

Blood Tests: Latest – RBC 3.67 /10 to the sixth ul, WBC 4.2 10 third ul, Hgb 11.5 g dl, HCT 33.9 %

The 4 previous blood tests show a similar range for the RBC from 3.63 up to 3.93. WBC is between 2.6 and 4.2. Hgb is now at 11.5 and varies from there to 12.1 in the past year. Hct 33.9% now and as high as 36.5 in the past 5 tests. PLT are all between 245-269 10 third ul.

There is data at the bottom of the blood test results under the heading DIFF but she does not recall what the Dr. said about that data. In the last test there was LYM 43.1%, MON 5.5%, GRA 51.4% LYM# 1.8 10 to the third ul, MON# 0.2 10 third ul and GRA# .2 10 third ul.

Questions:

1) Looking at what I have written here, do you think the MDS diagnosis is correct?
2) What would be the best next step, or is watch and wait the best approach here?
3) Her doctor told her to stop taking B vitamins and Iron because they will disturb the data. Would it be good to start those up again?
4) I have read that two things determine if a person has MDS. Low blood cell counts and misshapen or immature blood cells in the blood. Does the DIFF data point to the shape or maturity of the blood cells?

I’m worried about her and don’t know what to expect or how to help her. Any advice is appreciated.

Thanks!

[Marie Yeager]

There should be two other results that indicate shape and size of the red blood cells: MCV and MCH. Mean Corpuscular Volume and Mean Corpus Hgb. Are those values normal? As always… get a second opinion from a Center of Excellence for MDS! Her hemoglobin looks great – that’s a big deal.

[Eric Bray]

Thanks for the reply, Marie. Both her MCV (92.2) and her MCH (31.3) are in the normal range. OK, so her hemoglobin at 11.5-12.1 is not so bad. That’s good to hear.

[Sarah Higgins]

Hi Eric I’m sort of hijacking your post but hope my insight helps. Has she had a bone marrow biopsy done? What are they basing her diagnosis off?
Your partner sounds very similar to me whith her blood counts they are pretty much normal my mchc & mch are borderline/below normal still as of last bloods. However my journey only started 4 months ago age 32 with severe bone pain & fever of 41.7 that lasted 62 days while in hospital 6 weeks on & off my bloods had dropped a fair bit mainly my white cells. They have ruled out autoimmune/infections, pet scan showed low activity within bone marrow. Bmb showed slightly abnormal red blood cells, 1% blasts & hypercellular.
1st heamo dismissed me, 2nd opinion concluded I don’t have mds because my recent bloods looked good, my age & I don’t have 10% abnormality. However I’m still fatigued, short of breath & extreme pain I can no longer walk.
I am convinced I may have it, I’m here wondering if I should seek a 3rd opinion. Marie, what do you think?

[Eric Bray]

Hello Sarah, I’m sorry to hear that you are having to deal with so much pain. To me it would seem that in such a case, a third opinion would not be a bad thing.

No, my girlfriend has not had a bone marrow biopsy. She has read that is painful so I guess she will prefer a watch and wait strategy than an invasive test. Her doctor seems to be basing his diagnosis on the symptoms more than the blood test results.

I had to visit my GP yesterday and showed him her blood data and he said she has anemia and the next step is to find out why. He wants to check her blood iron levels, though I’m sure she has had that done already. He also wants to check her kidney function and the thyroid T3 T4 and TSH.

I hope the cause lies somewhere besides MDS.

[Sarah Higgins]

I thought a bmb would be extremely painful but with some sedative it was no more than some pressure & was over fairly quickly- this should show a lot of what’s going on for her. Defiantly sounds like anaemia from what you explained. I actually thought anaemia was just from deficiency but it wasn’t until i started looking into my own health. My type of anaemia is megoblastic (only showed in my bm not really too much in bloods) can be caused by b12 or folate deficiency however from my understanding if this is normal mds should be considered.

for her GP to give a diagnosis he’s probably done all the blood work up, but to really know what your dealing with id push for a BMB you can go down the right path for her.

[Eric Bray]

Thanks, Sarah…I think we will start over with my doctor and do some basic tests to see if there is a cause of the anemia other than MDS. I’d like her to restart the Iron and Vitamin supplements. The hemotologist had her stop because it would effect the bloodwork data, but those numbers are pretty stable over the past year. She tells me she has been anemic since childhood.

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