[tam]

Lois,
Forgot to mention that I’ve also switched to Cetaphil Gentle Cleansing Bar soap for showers. I used Dove for years but found that Cetaphil is more gentle and results in less dryness and itching. (Full disclosure: I am no way associated with the makers of Cetaphil.)
tam

[tam]

Lois,
I have naturally dry skin and experience itching during dry winter months on legs and occasionally on back. I have found that Cetaphyl Cream (in a large tub) works best. I apply it to my shins after showering and that takes care of it. If I don’t apply it the itching during dry months is unbearable. I never associated it with MDS, however. I thought the dryness worsened with age. Good luck.
tam

[tam]

I am 64 and was diagnosed with MDS in 2013 based on a bone marrow biopsy. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time brought the low counts to my attention and attributed them to possibly my training for marathons. He did not order follow-up monitoring or a biopsy at that time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. My counts have changed very little over the last 26 years. In 1991 my counts were as follows: platelets 134, RBC 3.9, WBC 4.0, and hemoglobin 12.8. I am basically at these same levels now. I am in wait and see mode and continue to have a very active lifestyle. It’s possible I’ve had MDS-unclassified for over 27 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness. My goal each day is to stay in good health through strict diet and exercise and try to keep my immune system strong.

[tam]

Gerry,
I was diagnosed as low risk at age 59 about 4 1/2 years ago. I’ve been in wait and see since then and have no symptoms that I know of. When I learned of my disease I committed to stay as healthy as possible through diet and exercise. While I do have aches and pains I’m not sure if its from aging, exercise, or MDS. I go to a Center of Excellence medical college twice per year for blood tests. After diagnosis I was checked monthly then quarterly until doctor was confident that my counts were stable. No mention of drug treatment has come up at this point. My platelets, wbc, and rbc are all just below normal level, but are stable. Good luck.
Tom

[tam]

I also prepare an organic juice drink every day with the following ingredients: carrot, beet, kale/spinach, green apple, cucumber, raw ginger and raw turmeric. It is sometimes challenging and time consuming to find all organic ingredients, but we do. Each morning I also make a smoothie of organic frozen strawberries and blueberries, unsweetened plain almond milk, non-fat plain greek yogurt, and banana. In the evening I have organic papaya tea and 4 oz. of pure tart cherry juice before bed. I will never be able to prove this is working but something has kept my numbers stable for going on five years. We also cook with and consume no added salt, added sugar, or oils. I was diagnosed by bmb with mds-unclassified in September 2013 at the age of 59. Good luck!

[tam]

I am 64 and was diagnosed with MDS in 2013 based on a bone marrow biopsy. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time brought the low counts to my attention and attributed them to possibly my training for marathons. He did not order follow-up monitoring or a biopsy at that time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. My counts have changed very little over the last 26 years. In 1991 my counts were as follows: platelets 134, RBC 3.9, WBC 4.0, and hemoglobin 12.8. I am basically at these same levels now. I am in wait and see mode and continue to have a very active lifestyle. It’s possible I’ve had MDS-unclassified for over 26 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness.

[tam]

Allan,
I suggest you purchase a quart of organic tart cherry juice. Each night a half hour before bedtime mix 4 ounces of tart cherry juice and 4 ounces of water together and drink. No need to gulp it down just drink at a normal pace. You should sleep better and you will have more vivid dreams. We purchase the Lakewood brand which is pure organic with No Added Sugar and not from concentrate. Give it a try for a couple weeks and see what you think.
Tom

[tam]

Amy,
I am 63 and was diagnosed with MDS in 2013. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time attributed low counts to possibly my training for running marathons. He did not order follow-up monitoring or a biopsy at the time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. I’m writing to let you know that I’ve had comparatively low counts for 26 years. Here are my counts from 1991 and 2017: platelets 134 vs 114, RBC 3.9 vs 3.8, WBC 4.0 vs 3.3, and hemoglobin 12.8 vs 12.8. It’s possible I’ve had this for over 26 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness. Hope this helps.
Tom

[tam]

Robert,
I was diagnosed with MDS over three years ago. One of my symptoms was a low platelet count. At the time I found research that suggested papaya leaves tea increases platelet counts. I found an online retailer Starwest Botanicals that sells organic papaya leaves with directions on how to prepare the tea. It is very simple. One tablespoon of leaves in a tea bag in boiling water for five minutes. I’ve been drinking the tea every night since being diagnosed. I noticed a slight gain in platelets in the first couple months. I have been able to hold my platelet count around 115-120 for the last three years. Clearly there are no grounds to conclude a cause-effect relationship because I changed other things in my life related to diet and exercise. Plus I’m a sample of one. However, there are no negative impacts on my health and my counts are holding steady so I’ll continue my nightly papaya tea ritual.
tam

[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

[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.

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