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Viewing 15 posts - 1 through 15 (of 41 total)
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  • in reply to: Almost 42 a little over a year since diagnosis #58012
    tam
    Participant

    Shaun,
    You might want to give papaya leaf tea a try for your platelet issue. It can’t hurt. Here’s a previous post of mine.

    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

    tam
    Participant

    I have been on watch and wait for 8.0 years. My hemoglobin ranges from 12 to 13.5 and has been in that range since diagnosed. My wbc is at 2.9, rbc at 3.7, and platelets at 137. All counts have been stable over the eight year period. I bike, jump rope, walk, and long track speed skate. Haven’t noticed any dropoff in performance over the last 7-8 years. Staying active at 68 years keeps me sane and helps me monitor my health. Good luck and hope you remain asymptomatic for many years.
    TAM

    in reply to: COVID VACCINE #54884
    tam
    Participant

    I received my third Pfizer shot on Friday afternoon. No reaction Friday. On Saturday, I was tired and rundown. I had to take several naps throughout the day. My appetite was reduced but I was able to eat at every meal. Sunday morning I was back to normal and carried on with my exercise routine and eating habits. My first Pfizer resulted in no adverse reaction. My second Pfizer was exactly like the third. I was diagnosed in 2013 with MDS unclassified and low risk.

    in reply to: Arthritis #54825
    tam
    Participant

    Here’s another natural pain remedy that works for me every time. Prepare a cup of golden milk with raw ginger, raw turmeric, almond milk(or substitute) and water. Add 1 inch ground raw ginger and 1 inch ground raw turmeric to saucepan that include 6oz almond milk and 6oz water. Throw in three peppercorns and bring to a simmer. Simmer 10 mins on low, strain, and drink. Delicious drink that will knock out pain. Ginger and turmeric have been found to be as effective as over the counter pain relievers. Enjoy!

    in reply to: Exercise and Hemoglobin Counts #54707
    tam
    Participant

    I have been on watch and wait for 7.5 years. My hemoglobin ranges from 12 to 13.5 and has been in that range since diagnosed. I bike, jump rope, walk, and long track speed skate. Haven’t noticed any dropoff in performance over the last 7-8 years. Staying active keeps me sane and helps me monitor my health. Good luck and hope you remain asymptomatic for many years.

    in reply to: Covid-19 #54248
    tam
    Participant

    I have MDS and received 2nd Pfizer dose last Wednesday morning. I felt fine the day of vaccination but had a mild loss of energy on Thursday. It lasted about 24 hours. I was back to 100% on Friday.

    in reply to: papaya leaf extract for low platelets #53963
    tam
    Participant

    I have been drinking organic papaya leaf tea each day for seven years. My platelets have increased slightly during that period. I cannot prove that the tea has had an impact, but my platelet count was heading downward prior to daily papaya tea intake. I will continue to have a cup per day. Good luck. FYI, I purchase bags of organic papaya leaf C/S in 1lb bags from Starwest Botanicals. There are other sources I’m guessing.

    in reply to: asymptomatic mds #53278
    tam
    Participant

    Rod,
    If you’re interested in seeing my diet type the word “salmon” in the search bar above on the right under Search Forums. Scroll down four entries and you’ll see my entry titled “Diet for MDS.” It is kind of over the top but you may pick up an idea or two.
    TAM

    • This reply was modified 1 year, 7 months ago by tam.
    • This reply was modified 1 year, 7 months ago by tam.
    in reply to: asymptomatic mds #53274
    tam
    Participant

    Roderick
    I am 67 now 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 29 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 lead a very active lifestyle. I’ve been able to bike 4,300 miles across America, bike around the Netherlands, exercise 3-4 hours per day, and continue my passion of long track ice speed skating. I know I’m one of the lucky ones with this disease and feel for those who have not been able to lead a near normal life. It’s possible I’ve had MDS-unclassified for 30 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

    in reply to: Papaya leaves #50343
    tam
    Participant

    Carolyn:
    Below is an earlier post of mine about platelet counts.

    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. I 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: DRASTIC PLATELET DROP #50246
    tam
    Participant

    Ian:
    Below is an earlier post of mine about platelet counts.

    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. I 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: RBC dropped ? #50146
    tam
    Participant

    I have used Efudex 5% fluorourcil two times since being diagnosed with MDS in 2013. A couple years ago I applied the cream to an actinic keratosis spot two times per day for two weeks. I did not notice a change in my rbc, wbc or platelets at my follow-up blood test. Six weeks ago I again applied Efudex 5% twice per day for two weeks to the same spot. I have not had a subsequent blood test so can’t tell if it has impacted my counts. My next blood test is scheduled in April. I will report back after my next test. My dermatologist said it should impact my blood counts given the small area that I was treating.
    TAM

    in reply to: Workers compensation #49910
    tam
    Participant

    Hobert,
    Just curious, is there a way to tell definitively that benzene caused your father’s mds? I was exposed to benzene in my late teen years while working at a printer who printed labels on plastic packages. I’ve wondered since being diagnosed if that was the source of my mds. Thanks.
    TAM

    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

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