Hi all,
I was wondering if any of you have changed your diet to vegetarian or vegan and if so, have you seen any change in your condition or your overall health? The benefits of a plant based diet are now well documented and I am determined to give it a try and see if it helps with the fatigue/migraines etc. I would love to hear of other peoples experiences with changing diet.
Check out whole30.com
I highly recommend this program. I was able to get rid of fatigue, aches and pains and feel alive again
Hey HelenK... 
I have been a Pescetarian (Seafood vegetarian for quite some time), and well before I was diagnosed in May of this year, (Post ET - prefibrotic - MF).
Until recently, I was also a strict Vegan for circa 18mths.
However, due to my diagnosis, I decided to let the Vegan side of things slide a tad, and recommenced eating cheeses, although, aside from Cheese, I do not have any other form of diary in my diet (I wish everything I had was totally organic nonetheless).
I reflected that a lack of calcium might not be aiding my condition, considering my Post ET/MF diagnoses etc...
I always try to have as little as possible in the way of processed foods. Whole foods only, and most recently, I acquired a NutraBullet juicing machine that is simply amazing...
I find that my (enlarged spleen affected) stomach feels less satiated when I partake in fruit and vegetable smoothies than compared w/ other solid forms of nutrition etc...
Hope this might help a little...
Steve
(Sydney)
Thank you both for your replies. I googled the whole30 but it's really not for me as I want to see how I feel after 2 months avoiding all animal protein. Steve, I am going to get a Nutrabullet😊 Hope you're not feeling too bad. Can I ask what prefibrotic MF is?
PS. The World Health Organisation (WHO) has recently amended and updated its descriptions for Primary Myelofibrosis (MF), and for those who might be considered as Post ET or PV and transitioning to MF.
There is now a suggestion that True ET/PV aught to be distinguished from those who are in transition from ET/PV to MF as a much better way for determining a more accurate prognosis for sufferers.
Happy to forward the article to anyone who might like a copy etc...
Best wishes
Steve
(Sydney)
Hi Soc,
Just found this thread while searching for good reads regarding my enlarged spleen and found it enlightening. Am sort of transitioning to MF or CML from post ET and have tried to be Vegan for more than a month now.
Hope your condition has improved since you've made the response above. Am interested of how you've progressed with being Vegan/Vegetarian.
Would also appreciate if you can still forward the WHO article you mentioned above.
Thanks. Best regards.
Hey Cathie...
Yes, this was from an email of a year ago.
However, I have been able to locate that article but would need an private email address to send it to you...
I stopped being a Vegan, because my Calcium levels were falling badly, and since having recommenced eating cheese, things have improved in that department...
Happy to help if I can Cathie...
Best wishes
Steve
Oh, Steve! Yes, thanks much for this fast response.
You really stopped being a Vegan? Sorry, but just curious. I learned though that one has to supplement with calcium and B-complex (particularly B12) vitamins if practicing to be a Vegan. I'd like to surmise that you've just become a vegetarian though, not necessarily back to the red meats. That's interesting. Nevertheless, I'm just beginning the journey, not the strict vegan diet yet; some slips from time to time. I'm just not comfortable feeling my spleen. It's not that large yet I think but I have a small frame, so ---
You may email me thru cathie_@asia.com.
Glad to be hearing positive developments at your end.
Best regards!
Cathie
Hey HelenK...
Absolutely, no secrets here...
Pre-fibrotic, is a condition that is often described as a transitional state.
Hence, in my Post ET diagnosis, I am in transition between ET & MF, apparently... This type of condition can also occur in Post PV patients too... Meaning that their PV condition can transition into Primary Myelofibrosis (MF).
When I underwent my Bone Marrow Biopsy (BMB), it showed a Grade 2 level (second highest reading) of Reticulin present in my bone marrow that is causing scarring of my bone marrow, and which might ultimately cause a failure of the bone marrow to produce the required blood cells (if I ever live long enough that is...
Whether or not this might mean that I will then transition to Acute Myeloid Leukaemia (AML) or the Chronic version of CML, is still anybody's guess...?
Part of that equation has to be how we all take care of ourselves with our ongoing diet and exercise regimes, but also how long we may have already had our separate but similar MPN conditions must also figure in those calculations...?
However, no one can really advise me at this juncture, of my longterm prognosis for longevity because we all have slight variations evident in our conditions, and I was only diagnosed in May this year (I need to map my history to a more effective level). That is another reason why I now keep meticulous records of all of these tests and their accompanying results etc...
As I currently understand it, the monitoring of my bloods and changes to my BM over time will most likely be the best indicator, and that should include of course my ongoing experienced constitutional symptoms, and my reactions to ongoing medical regimes of drug treatments...
With my diet, I do not eat any farmed seafood products because like as happens with most terrestrial animal farming, antibiotics (in place of growth hormones), are introduced into the feed system to help those animals mature and grow much faster than they might have done naturally. Today, a standard chicken is grown to maturity in 29 days, and many of those poor caged animals cannot stand on their own legs due to the muscles not having developed to the required level before they become slaughtered.
Personally, I believe that those chemicals are harming us too (we are what we eat...)
I do have some eggs, but not very often, and only if they are organically grown, certified and 'Free Range' (I believe that some protein is important and I am not a lover of all lentil style meals
But I do absolutely adore most vegetarian meals, Indian food is so wonderful too...
I will learn tomorrow if my current Interferon dose is to be doubled.
At the present, I am not enjoying the Pruritus it causes and my bone aches seem to be intensifying.
I was offered a working position yesterday, that I would really like to have considered more deeply, however, my condition is directly related to levels of stress too... Whenever I feel any stress I almost invariably start to feel quite ill and unable to cope...
The Position was for a facilitator as a Housing Manager of assets and tenancies.
Part of me wants to try to do it, and another part of me knows that I am no longer equipped to do so... It is such a frustrating condition to be in.
I had a TIA (minor stroke) in August last year when I was under a great deal of pressure. Thankfully, due to my Blood Pressure tablets, my BP now stays bordering no higher than the low 140s, most of the time.
My first TIA was and is a warning, and I probably should not push the boundary too far...
In any event, I hope something here might have helped you a little Helen.
Best wishes.
Steve
(Sydney)
Hi all, interesting to see this thread pop up again! I am no longer a vegan, it was far too restrictive for me. I am now mostly pescatarian with the occasional lapse (classic burger at the Hard Rock Cafe being the latest)😀My vitamin D levels were found to be untraceable and I now take a tablet daily. IBS greatly improved since removing most dairy and meat. Husband has remained mostly vegan and his fussy eating is now driving me mad😁
Motherhood and MPNs
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