What prompted the investigation into MDS?

[kemp31]

I have been asked to see a hematologist because my both my RBC and WBC counts have been going slightly lower each year for the past 4 years…not terribly low but not in the “normal” range. I am now slightly anemic. I would like to ask all of you what ‘started’ your investigation? Was it just routine CBC at your yearly physical? One doctor remarked, “you won’t know until someone looks at your blood under a microscope — I think he’s talking about a bone marrow biopsy. I’m just wondering if this is all necessary for me or if I just have a different ‘normal’ for blood counts. My only symptoms would be that I’m cold ALL the time and I need at the very least 8 hrs of sleep a night. (prefer 9-10) Thank you for any incite you can give. I am 60.

[Anonymous]

Thank you for your posting. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

[Aayushi Sharma]

The diagnosis of MDS is typically made by excluding other non-MDS causes of cytopenias in the presence of some combination of dysplastic cell morphology, increased marrow blasts and a karyotypic abnormality

[kemp31]

Thank you, I will go the route of a local hematologist\oncologist — and yes, I will definitely go to Froedtert in Milwaukee for a second opinion if anything at all is found. Thank you for your advice. I appreciated the note to weigh risks vs benefits.

[tam]

Years ago my annual physical showed low RBC, WBC and platelet counts. Every year thereafter my primary physician included a CBC with my checkup. When my counts slipped the slightest bit from my historic average she sent me to a hematologist. After some additional blood tests my hematologist recommended I get a bone marrow biopsy. I had no other symptoms other than low counts identified during my annual physical. The biopsy showed MDS low risk (unidentified). I have been going to Froedtert and MCW in Milwaukee since being diagnosed three years ago on a regular basis for CBC tests. My counts remain stable. I am 63 now and was diagnosed at 60. After my diagnosis I instituted a very strict diet and daily workout regimen. Not sure if any of this is helping but I feel great. My goal is to keep my body as healthy as possible to extend this period where I feel really good. Good luck with your health investigation. If I can be of help by sharing my daily routine please let me know. By the way, I am very pleased with my doctors and treatment at Froedtert and MCW.

[kemp31]

Thank you, Tam, for your reply — and yes, I would like you to share your ‘daily routine’ (strict diet?) etc…
I have much experience with Froedtert and agree with you that some of the doctors are fantastic!

[tam]

Kemp31:
I don’t know how to just message you so I’ll put this out there for general consumption. First the foods that are in my diet everyday.
Breakfast: organic steel-cut oatmeal, smoothie (Fage 0% fat Greek plain yogurt, organic frozen blueberries and strawberries, banana, almond milk) and piece of multi-grain toast.
Lunch: homemade soup (either broccoli, red lentil, split pea, cauliflower, 13-bean, vegetable, green pepper, southwest corn & potato, vegetable sumbar), quinoa, unsalted walnuts and almonds.
Afternoon snack: 20 oz. homemade juice made from organic ingredients (carrots, beet, spinach, kale, cucumber, apple, ginger, turmeric).
Late afternoon snack: 1.3 Tbs of organic chia seeds mixed w/4 ounces of water, fresh organic broccoli
Dinner: wild caught Alaskan salmon (twice per week), chicken breast no-skin (once per week), various other meals that emphasize legumes, beans, vegetables, rice or whole wheat pasta, and spices particularly Indian spices.
Early evening: papaya tea (organic papaya leaves), four oz. of organic tart cherry juice mixed with equal parts water.

There are some rules that we follow in our cooking such as no oil, no butter, no added table salt, zero sodium or low sodium cooking ingredients, no added sugar, no dairy other than zero fat greek yogurt at bkfst, whole wheat or multi-grain pastas and bread, and all organic fruits and vegetables.

I’ve read a lot about diet and health through the years and especially since being diagnosed. My diet is a combination of other diets and includes most designated “superfoods.” While this diet may sound boring I find it very tasty. I consume a significant amount of food each day.

My daily exercise includes the following: bicycling (indoor or outdoor), pushups, step-ups, arm curls, handstands, ice skating and stretching. My daily routine takes 2-3 hours.

Currently my doctors have me in “wait & see” mode. I am convinced the only way to put off the inevitable is to stay as healthy as possible through diet and exercise.

tam

[JBC]

My husband would have a CBC almost every year as part of a routine physical. Around 2003, his white count was lower than it should have been and the family doctor tested for B-12 and it was deficient. So my husband started taking B12, but the white count remained lower than normal and slipped a little each year. In 2011, that doctor retired and the new guy said he would feel a lot better if a hematologist looked at the numbers and told us there was no problem. At that point, I charted WBC, RBC, HGB, platelets, MCV, etc. from 2003-2011. The hematologist suspected MDS when seeing the gradual decline across the years and a bone marrow biopsy (and a second opinion BMB) confirmed the diagnosis. It was hard for us to wrap our heads around it all, since he felt fine, was working, and was playing tennis. Treatment was begun in January of 2012. Best wishes to you.

[kemp31]

Thank you, JBC, for your reply —
I was seen my hematologist this week and just waiting for test results. He believes an evaluation is in order because ‘2 lines’ are low. We’ll see. I am active myself, bmi normal, and if it wasn’t for two siblings diagnosed with blood cancers, I probably wouldn’t be concerned. *I also come from a farming background — no lack of contact with benzene products now that I think about it…I’ve always felt the environment is more causing of issues\cancer than genetics…imho

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