ET Calr Diet Food Vitamins & Supplements

[Mart456]

Recently being diagnosed with ET Calr, i was wondering if anyone had any suggestions or feedback on the following.

• Generally what kind of diet have you found beneficial

• Which foods should be avoided

• which foods may be beneficial

• any vitamins and supplements that are beneficial

• any vitamins and supplements should be avoided

I am conscious that everything has to be in balance, I want to where possible change my diet so that it is beneficial to the condition.

currently, I really don’t have any sugar, fizzy drinks, crisps, snacks or chocolate lol, my food life is quite bland at the moment.

i eat complex carbs, avoid red meat, little chicken, some fish, I eat Blueberries with my breakfast.

I do drink turmeric tea, is that a problem?

I have been taking vitamin C slow release 1000mg? is vitamin C something that is beneficial or bad for the condition?

I take a multivitamin daily?

What about alcohol in moderation? is this something that we need to avoid, is it ok in moderation, like a glass of wine every other day.

Are flavonoids / Flavanols beneficial to the condition?

Are supplements like Resveratrol beneficial? or harmful?

Sorry for the questions, I have just been diagnosed, and just wanting to understand what adjustments I can make to help improve my long-term outlook.

[Nichola75]

Hi @Mart456 and welcome to the forum. It’s great to have you here! There are lots of questions there but in fortunately I don’t have any experience on diet change etc but there might be somebody on here who does. Have your clinical team been able to offer any advice or provide you with any information?

[Erica]

Hi @Mart456 a great big welcome to our forum and you must still be in shock, give yourself some time and be kind to yourself. If you look on the Blood Cancer UK website there is lots of useful information on there.
I am not medically trained but I believe, as you say, everything has to be in balance.
Personally I do not know of any miracle foods.
I have switched to a healthier diet just for my general health, more veg and fruit, less red meat more fish.
I like boiling water to drink during the day, but that is just what I like.
As for alcohol everything in moderation, although personally I don’t drink alcohol.
There are differing opinions of the effectiveness of vitamin and mineral supplements.
But I am a girl for my hot chocolate drink at night and I celebrate everything with shortbread. At weekends we have puddings.
I haven’t got many pleasures in life so I do believe in the odd treats!!!
I do believe in getting 8hrs sleep/rest and fresh air and exercise depending on your body. I am a walker.
So please don’t take this as advice what to do, I just wanted to let you know what I do, ask and listen to your medical team.
I look forward to hearing more from you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk

[DickM]

Been living (happily!) with ET/CALR-deletion for getting on for 8 years now, after diagnosis when I was 69. Took 1000mg hydroxycarbamide and 75mg aspirin daily until a few weeks ago when I had to have radiotherapy for prostate cancer. Because of the suggested increase in cytotoxicity of the RT from hydroxycarbamide, “my” (excellent) haematologist agreed to me stopping it for the first week of RT to see what happened. Platelets went up, so started on 500mg HC, which now seems to keep platelets nearly in the normal range! Which they haven’t been previously!
So I’m probably irrelevant to you, but for what it’s worth, my advice would be first and foremost, DON’T get obsessional or over anxious! Like Erica, I’ve been following a mixed diet for years, much as you suggest. I’m an unrepentant red meat carnivore although only eat about 200g total per week and that’s usually venison which is cheap, “green” and accessible. Plus fish on a couple of days.
One of my foibles goes against conventional wisdom; we never touch chicken, except for an occasional free-range bird from known source. As a one time agricultural scientist, I know rather too much about what goes into cheap chicken and ready meals. Likewise, if you can get it, buy veg from local, known sources. (Sorry, beginning to sound a bit obsessional!)
With the approval of the Prof of haematology when first diagnosed, drink alcohol only moderately (couple of wee drams or half pints of cider in a week plus a couple of glasses of wine with Sunday meal).
Physical fitness is important if you can achieve it; not obsessional gym-bunnying, but regular walking or cycling, preferably with a few hills thrown in (easier up here in Aberdeen!).
The only supplement I take is Vitamin D; we don’t get much sunshine up here in Scotland’s “cold shoulder” and in any case too much exposure to sunshine is not a good idea when taking hydroxycarbamide.
Take things steadily until you’ve got measure of your particular version of ET; we all seem to be different and I’ve been one of the lucky ones!

[DickM]

Forgot to mention what, IMHO, is perhaps the most important thing when newly diagnosed and also possibly the most difficult. Assuming the system where you are is the same as here, you are referred to the local haematology department, and will see one of the specialists, though on successive occasions, not necessarily the same one. Try at the earliest opportunity to establish some rapport with the hospital person; if they see you as sensible and interested, not a pain in the ****, then when problems do arise, are more likely to be helpful. LISTEN to what they say, write it down if you have memory problems like me, and if you don’t understand something, ask them to explain it more simply, or just to repeat it so you are sure you heard it right. Before you go in, have a checklist of any questions or worries that you have, and ASK about these. It can be a tricky balance, being slightly pushy to get answers, but not to alienate them or seem like too much of a hypochondriac. Reading up on reliable literature like the Blood Cancer UK (oops, nearly wrote Bloodwise!) material or that from MPNvoice will help you to understand what specialist says and can prime your questions.
Be careful of other sources; unless you are used to being a critical reader of academic or polemical literature, you can easily get misinformed. If you join some of the Facebook or other forums, be specially careful. Contributors from other countries, especially from the USA, can unnecessarily scare the **** out of you. Their’s are different systems, with different priorities. And again, all of us have different experience of ET. The experience and ideas of the most vociferous aren’t necessarily what your’s will be.