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Myelofibrosis*

Blood Cancers & Disorders | Last Active: 2 hours ago | Replies (143)

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@loribmt

Hi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅

Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy

You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.

For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.

And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.

And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?

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Replies to "Hi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite..."

Thank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be part of a group that understands the ins and outs of myelofibrosis.
I’ve been dealing with the UTIs for years, taking methenamine twice a day; until this year it has kept the UTIs at bay but I guess with the cancer it’s not quite enough. I will try to follow your precautions more closely and switch to tepid water instead of ice water. And I’ll enjoy the dunes as often as possible - wish you could join me!
Thanks for being a new friend through this.