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Viewing 15 posts - 1 through 15 (of 28 total)
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  • in reply to: mds 5q-: does revlimid stop working #49856
    tam
    Participant

    Mary
    Here’s my earlier post about platelets.

    For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for six years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.
    TAM

    in reply to: Diet and nutrition and any help at all #49070
    tam
    Participant

    Hi Azalin. I described my diet in detail in another entry. If you are interested go to “Search Forums” on the right hand side of the page. Enter the word “Fage” in the Search bar and two entries should come up. If you can’t find my two entries or have other questions related to my diet, please let me know. I cannot promise my diet is helping, but I was diagnosed six years ago and my status has not changed since.
    TAM

    in reply to: MDS single lineage dysplasia (Platlets) #48692
    tam
    Participant

    Here’s my response to an earlier post.

    For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for five years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

    in reply to: Recently diagnosed with MDS-EB-2 #46691
    tam
    Participant

    JoAnn: Sorry I did not get back to you sooner, but I was on vacation for the last month with limited access to the internet. In response to your question, I was diagnosed in September 2013 as having mds unclassified low risk. According to my hematologist/oncologist and mds specialist, my status has not changed. My numbers have been stable and I have not had to take any medication or have any other treatments for the disease. I have a blood test every six months.
    tam

    in reply to: Recently diagnosed with MDS-EB-2 #46462
    tam
    Participant

    JoAnn: I have no idea if my diet works, but I do follow a rather strict diet. The diet does not limit my quantity of food, but rather focuses on vegetables, fruits, whole grains, seeds, wild-caught Salmon, lean chicken, beans and legumes. I was diagnosed 5.5 years ago and my numbers have not gone down during that period. In fact, my platelets seem to have gone up which I attribute to organic papaya tea every evening. Let me know if you have questions. If you put “quinoa” in the Search Forum search bar above on the right you will see more detail posted in the second entry down.

    tam
    Participant

    Carol and Monte: Hope your test results show improvement. Great to hear that you found value from my diet and exercise routine. I am more than happy to answer any questions you have in the future. Thanks for writing and good luck.
    TAM

    in reply to: Strategies for dealing with MDS Fatigue #45033
    tam
    Participant

    My approach to combat fatigue is to stay active. I have an exercise schedule that I carry out each day regardless of how I feel at the outset. I have an Excel document that I use to track my progress. I find that it is important to have an exercise goal and to track progress on a daily basis. It doesn’t matter at what level you are currently at just try to set a daily goal and do it. As you progress add a bit more to your exercise routine. It can be as simple as walking up and down the stairs in your house five or ten times per day, or walking around the block each day. Having the goal and tracking it daily gives you something to work toward. I have been “wait and see” for 5.5 years now and have not significantly lost my energy level. I work hard it and continually add/change my goals as I progress. I started tracking my exercise routine the first day after my MDS diagnosis. Daily tracking helps me understand how my body is changing with age and with the disease. Good luck.

    in reply to: Nutrition #44628
    tam
    Participant

    Here’s my response to an earlier post.

    For low platelets you might want to try organic dry papaya leaf. I buy bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for five years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

    in reply to: Low risk MDS patients who opt for no medical/drug treatments #44515
    tam
    Participant

    Good luck Katie. I’m happy that you found my post and it offers you hope. I believe maintaining a healthy diet, exercise, and an active lifestyle is the best way to keep your immune system strong and energy level high. I have a couple posts that go into how I maintain a healthy diet and active lifestyle, in case you are interested. Easiest way to find them is to type “quinoa” in the Forum search box on the right. I realize my diet would be considered extreme to most and there is no way to prove it is working, but I feel really good for a 65 year old with low counts. Maybe there are parts of it that you can incorporate in your life. Hope this helps you and stay positive.

    TAM

    in reply to: rest pain #44379
    tam
    Participant

    Hi Nancee. For low platelets you might want to try organic dry papaya leaf. I buy bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for five years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

    in reply to: Diet for MDS #44364
    tam
    Participant

    Here’s my previous post Laurence. Let me know if you have questions. TAM

    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 organic frozen strawberries, banana, rounded tsp of organic black raspberry powder, almond milk) and piece of 100% multi-grain toast.
    Lunch: homemade soup (either broccoli, red lentil, split pea, cauliflower, 13-bean, vegetable, green pepper, southwest corn & potato, vegetable sumbar, mulligatawny), tbs of chia seed and tbs of ground flax seed mixed in 8 oz water, quinoa w/crushed walnuts and drizzle of lemon juice, unsalted walnuts and unsalted almonds.
    Afternoon snack: 20 oz. homemade juice made from organic ingredients (carrots, beet, spinach, kale, cucumber, apple, ginger, turmeric).
    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 and maintain my weight at 155 lbs (5’10.5″).

    My daily exercise includes the following: bicycling (indoor or outdoor), pushups, step-ups, arm curls, handstands, speed 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.

    in reply to: Diet for MDS #44329
    tam
    Participant

    Hi Mike. I was diagnosed just over five years ago. I try to follow a strict diet that I laid out in an earlier post. Rather than explain again, here’s how to get to my earlier post on diet. Go to the search bar and type in the word “salmon”. Scroll down to the second entry where I explain my typical daily diet. My numbers have been stable for five years. That doesn’t prove that the diet is working, but I feel great and have a lot of energy.
    TAM

    in reply to: Good Dr Visit #44274
    tam
    Participant

    Thanks Allan. Great news for you. Have you changed diet, exercise, medication or anything? Is anything different in your life now from when you were diagnosed? Are you on any medication for MDS? Thanks.

    in reply to: MDS and itching #44183
    tam
    Participant

    I suggest you buy Cetaphil Moisturizing Cream in a tub and apply immediately after you shower or wash your back. It works wonders.

    in reply to: Alternative treatment for MDS #44051
    tam
    Participant

    I second the organic papaya leaf extract for platelets. I have been purchasing organic papaya leaf from Starwest Botanicals for a few years and my platelets have inched up over time. I purchase tea bags and fill them with dried leaves. Steep for 10 mins in water and enjoy.
    (This is not an advertisement for SB)

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