Quick Links
About myMPNteam
Powered By
And the answer is:
Things that can lower your platelet count include:
quinine, which is found in tonic water.
alcohol.
cranberry juice.
cow's milk.
tahini.
That's why I always have a nice cold beer or two after a sweaty day volunteering with Habitat for Humanity. LOL. Doctors will tell you no alcohol. I say live and enjoy your life.
alcohol with the cranberry juice too maybe???
Dr. Fleischman is looking for families with multiple cases of MPN's and/or an MPN and other cancers. She is hoping to have some family members participate who do not have an MPN - or another type of cancer - and also have family members who have say skin or other cancer but not an MPN. She will send you everything you need to participate. All you have to do to is give the vial to someone doing your next blood draw so you can send them a blood sample in the all postage paid envelope and submit… read more
Me, me, me, like the donkey from Shrek
I am immensely impressed with UCI, her medical center
Lisa, what’s wrong with your breathing?
I have ET and my mom had Mylodysplastic. I’m thinking about my children’s future
My mother’s brother died of leukemia and one of her sisters has leukemia. I think they both were CLL
Mum is one of 12 kids. My uncle died 15 years ago. My aunty said she had chemo treatment about 7… read more
Many of you were so kind to reassure me about the bmb that was in the planning stages a few months ago. I am 87 years old, diagnosed with PV in 2019, did well on hydroxyurea and aspirin for four years, maintaining hct level within target range, and only two phlebotomies during that time. Stopped taking the HU in January of 2023 due to likely side effects of HU (swallowing difficulty, hoarseness). Referral to ENT specialist with trial of omeprazole and anti-reflux diet because doctors doubted my… read more
I still have not been offered any BMB, 2 MPN specialist, 4 yrs now baby asprin and 500 hu 3 days a week only. HU was bothering my stomach at 500 per day.... so cut back last yr. Platelets under 700… read more
I would also like to add to this
Advocate for yourself! Educate yourself on your diagnosis so that you can ask the right questions to your doctor
Also tell your doctor everything about how you are… read more
I believe I am biologically 10 years less than my actual age of 63 and even physically younger, so why would the 60 plus rule stand for me. It should vary depending on everyones physical health
Also my dad lived to be 90 and did not really take care of his health like I do, smoker etc. Mom is 87 and just amazingly got diagnosed with ET/JAK617 with low 400's platelets. She's been a health nut all her life and never really had regular check ups until recently. The Dr. didn't try to panic her and… read more
Hi Mark,
We are quite different in our illness and most likely an individualised approach is better. Age is a risk factor, whether we like it or not, but applying it rigidly can result in someone… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
For me cold works very good. It is the best antiinflamatory thing we have to have. It is easier and free.
Here are some that I respect:
General Information
National Library of Medicine: medlineplus.gov/healthtopics.html
For general information about a condition, use Google to search for: NIH condition-name patient education
or
condition-name patient education site:*.gov
https://www.mayoclinic.org and then select Health Library, or
https://www.mayoclinic.org/diseases-conditions
https://my.clevelandclinic.org/health/diseases
Specialized Information
https://pubmed.ncbi.nlm.nih.gov/
https://www.uptodat… read more
Hi MaryAnne,
How are you?
Lindy. 😊
Continue with Facebook
Sign up with your email
Your privacy is our priority. By continuing, you accept our
Terms of use, and our
Health Data and
Privacy policies.
