Thank you for the links, I just joined LLS. I also just got Medicare and a supplement and set up with a GP group that appears to keep all the records and send one for the various tests as needed. No one has mentioned diet but I am sure that must have some effect on it, I did read about doing a low iron diet and avoiding stuff like berries and green leafy veggies.
2 Likes
Hi @Rsie please do check out any changes to your diet with your medical team first.
I am glad that you have joined LLS
Look after yourself and be ever so kind to yourself.
1 Like
Thank you there are so many sites out there and so many opinions, hard to know what is real and what weird people are making up.
2 Likes
Youâre most welcome @Rsie, Iâm glad those links worked. Sounds like youâve really got the ball rolling with joining LLS and signing up for healthcare. I have Obamacare too and itâs so great, hopefully youâll find it so in your neck of the woods too. Not quite as easy to access and certainly not as âfreeâ as healthcare through the NHS, but here we are!
My first haematologist didnât bother sharing anything about diet or food or much else, but like @Erica says do check any changes to diet with your specialists first. My second haematologist is great and suggested I stop taking my multivitamin as it had iron in it. I was told not to change my diet, but also not to add more iron-rich foods as they increase blood cell production which we already have too much of due to our Myeloproliferative neoplasms (MPN).
Something I do when reading Polycythaemia vera (PV) information online is to check itâs been written by an expert, preferably a doctor who considers Myeloproliferative neoplasms (MPN) to be blood cancers. Personally I wouldnât use social media as itâs like a jumble sale of opinions, and I wouldnât trust a doctor again who doesnât think Polycythaemia vera (PV) is cancer, like my rubbish first haematologist.
Sticking to official cancer organisations like LLS, BCUK and MPNVoice means youâll be reading properly researched blood cancer information. Iâm sure once youâve got your own haematologist youâll be able to ask them all sorts. Maybe for now keep note of all your queries and concerns to pass by your specialists at appointments.
Our specialist phlebotomists are great at sharing tips tooâone of my favourite nurses taught me to always stay hydrated, especially the day before phlebotomy (if you need that) as being hydrated helps blood drain more easily.
Anyway Iâve gone on again! Keep us posted about how you get on @Rsie.
1 Like
Oh and @Rsie LLS recently shared this great updated information with lots of current facts about Myeloproliferative neoplasms (MPN) which you may also appreciate: https://lls.org/sites/default/files/2025-03/PS81_MPN_Detail_0225.pdf
1 Like
Thank you, I have printed out and going in my Vera binder. I will be following up with the nutrition section to get the real facts on any dietary modifications that may be needed. Appears my cholesterol is high which is bad and close to being a diabetic which is also bad, so modify diet and get more exercise. Just had blood work done again fingers crossed results are ok after giving blood recently. I hope you are doing well.
2 Likes
HI, I cannot see what I wrote, just the reply. I live in Florida so no NHS for me, but I did just get Medicare and obviously the supplement to help pay for all this stuff. My firs heamatologist, I went to her 3 times and still no clue what she was talking about and when I asked her she got snotty and went all techy so absolutely no clue. Went to the second one (recommended by my hairdresser LOL) very fatherly, but tells me nothing and at this point I am only learning what I need to ask and was not until second visit he actually told me what I had. I was thinking Hemachromatosis from Dr. Google LOL. Thank you for input on calling it by its name and that it is a blood cancer. My 5 year old nephew in England recently diagnosed with Leukeamia, but advised not genetic but a gene mutation on my part, guess we need to figure out why the gene decided to mutate.
2 Likes