MF and exercise

[MKS60]

I’ve been a keen runner, completing a few 70.3 triathlons, umpteen half marathons etc - I am getting noticeably slower now and wonder what experiences people in this group have had in continuing exercise regime with MF. My only symptom at the moment is anaemia (Hb 103) and perhaps some night sweats

[socrates_8]

Hey MKS60...

Sounds to me like I should be welcoming you to our rather exclusive MPN club...

Obviously, like myself, you are a rather unique individual... Not just anybody gets an MPN, after all...

Like you... I also went through an initial phase of denial, by trying to find alternate causes of my higher platelet regime. However, eventually, and after overcoming being overwhelmed by the many implications of what an MPN diagnosis might mean... I came to accept my lot, and started studying all I could about MPNs, their causes, and how things might progress... and what might I do to help increase my longevity... (?)

In a short time, I gleaned much about the importance that inflammation plays in various forms of cancer. Through that research I changed my lifestyle, my diet, and started an new exercise regime – endurance cycling... Of course, none of this happened over night, but that is where I am today, and I have already had a measure of success I believe. My original BMB showed a Grade2 level of fibrosis, a year later after changes to diet & exercise, my subsequent BMB had witness a slight but significant molecular reversal, and my fibrosis had reduced to Grade1...

My specialist Haematologist believes that the Ruxolitinib's anti-inflammatory properties are responsible for this, I am however of the opinion that my new diet, intermittent fasting & exercise regime have a great deal to do w/ it too... In my view...

In any event, I believe that for the better part our MPN conditions can be managed, providing we take good care of ourselves...

It's rather ironic really, in May 2020, it will be four (4) years since my diagnosis, and for the greater part of those 4 years I have now been struggling to create an MPN Voice of my own here in Australia, where currently we have so little research for MPNs, and even fewer doctors... Living in a state of limbo was more or less how I was feeling...

Now, with the advent of COVID–19, the whole world has come to experience something of what it is like to live with a condition that so little know much of anything about it. A condition that doesn't really have a cure, but can be managed, providing we adhere to certain restrictions...

Nevertheless, once CV–19 has passed, we MPNers will still be here trying to improve our own Quality of Life (QoL), and still wanting and needing more research and funding to overcome these rare blood cancers...

Sounds to me like you too could start a Fundraiser (FR) too, to help further the cause for MPN Research in the UK, better treatments, and ultimately – a CURE!

One hopes...

Maz, the coordinator of MPN Voice in the UK is always looking for new contributors, and personally, I really do find it a great way for me to keep myself fully occupied these days...

I started an Australian MPN FORUM website called MATES, which you are most welcome to join and contribute to whenever you like:

mpn-mate.com/forum/viewforu...

And now the website has become a bona fide Australian Registered 'Not For Profit' Health Promotion Charity. Where ALL donations, (in cash or in-kind), of $2.00 or more are fully tax deductible...

Cycling events are my current FR events, but I am hoping that into the future there will be a plethora of ways to contribute to helping continue to fund research into MPNs here in Australia.

Best wishes on your journey buddy... stay in touch...

Stay safe & well...

Steve

(SYDNEY)

[EmeraldA in reply to socrates_8]

Hi Steve, so sorry for butting into your conversation. It's just I'm trying to navigate what can eat and what I cant that I am starting to get into a bit of a muddle. Eg. I'm vegetarian so am used to eating alot of veg but now I'm thinking there is veg I should may be avoid? Also, what about postassium levels in veg as I was reading about this and a link to high potassium levels and ET. Last question for now at least ;). What restrictions should I possibly adhere too? Theres just so much info on the net I'm just a bit confused :/ Thank you for any clarity you can give.

[socrates_8 in reply to EmeraldA]

Hey Emerald...

I will send you a Private Message because this is really a Post from MKS60 on MF & exercise, while I believe that diet is very important too...

I will message you shortly...

Steve

[MKS60 in reply to socrates_8]

Thank you for your detailed reply. A couple of questions... intermittent fasting - do you restrict your calories or the time you eat? Cannot imagine doing 100k ride on 600kcals..... also your riding - would you classify your efforts as moderate or strenuous? I am worried that strenuous efforts would be more harmful than beneficial but I have no information on this and no one seems to know (my haematologist is not ‘sporty’ and my husband who is respiratory MD is advocating moderate efforts only but he is no expert either)

[socrates_8 in reply to MKS60]

Hey there...

Good questions too... (?)

Firstly, we are all different in what might work best for each of us, and each of us may have slightly more or less diverse needs...

Secondly, I am no expert in anything either... Just another Post ET / MF patient trying to find my way through this maze...

My advice would be to locate a Nutritionalist who normally helps cancer patients meet their individual dietary needs. Contact the closest Oncology /Haematology unit near you and ask them if they have a Nutritionalist on staff, or know of one that might be helping some of their patients etc...

Simple answers:

1. I cycle circa 300km pw (for some people that would be intense), however as one's fitness levels improve, consistency becomes easier to maintain, i find...

2. Yes, I do suffer from fatigue, but it's much better with than w/out my exercise regime, in my view...

3. My 'Intermittent Fasting' means skipping meals. I do not have breakfast, black coffee (green tea) & a cookie. No lunch, main meal between 4-8pm. Low Carb's generally, but always have a few more before a longer ride... 150km(?) & plenty of hydration throughout my ride

I am a veggie, pescetarian, (wild-caught seafood when possible), fresh veg' and fruits... No alcohol ever, no soft drink, no added sugar to anything I ever consume. Always try to eat unprocessed foods, and organic again where possible... Loads of water & sparkling mineral water... I do use gels on long rides, & most of my rides are longer...

I am still weaker than I would like to be due to my anaemia, however, maintaining consistency seems to help me most...

Every now & then I take some Vitamin supplements: D & B group

Hope this helps a little...

Stay safe & well...

Best wishes

Steve

(Sydney)

PS. Plenty of more information on our Australian MPN Patient's Forum website concerning anti-inflammatory diet, fasting, and inflammation etc... S.

MATES

mpn-mate.com/forum/viewforu...

Fasting

mpn-mate.com/forum/viewtopi...

Inflammation

mpn-mate.com/forum/viewtopi...

mpn-mate.com/forum/viewtopi...

Ant-Inflammatory Diet

mpn-mate.com/forum/viewtopi...

Anti-Inflammatory Video

youtu.be/FzyoPAGTu-U(Not working as expected?)

[MKS60 in reply to socrates_8]

Thank you again - I am looking for anecdotal stories of how people deal with the lethargy, breathlessness and crazy heart rates when exercising along with diminished performance and longer recovery times and how to adjust expectations and regimes without getting depressed! I try to do 60-90 minutes each day either running or cycling (zwift is my friend at the moment...). I did the Vitality Half on March 1 (slowly) and it took me two weeks to recover 🙄

[socrates_8 in reply to MKS60]

Hey again...

When I first started cycling I could barely manage between 3-5km rides...

I am very serious here! Becoming fit w/ an MPN is/was a very slow and laborious pursuit for me, which in my case at least requires a continual graduation, and then maintaining that level, before moving higher again, if one so chooses etc...

Just start out without over doing things for a while... Create a four week schedule where you gradually build it up, and stick to it! Then multiple it by three (3) tapering off towards the end of each 4th weekly block...

Then take a very short break 4-5 days... Let your body recover from the muscle fatigue, and then repeat the same block again...

Remember, slow & steady... don't rush yourself... And remember that you are also supposed to be enjoying yourself too...

Best wishes

Steve

[katiewalsh]

Hi. Fatigue is common in individuals with anemia. Is your doctor treating your anemia? Do you have a doctor who specializes in MPN? If not, I urge you to get one asap. And ask that specialist what amount & intensity of exercise you can safely do without harming yourself. If there aren’t specialists near you, you can probably find one to see twice a year & have her/him coordinate day to day care with a local hematologist. There are many aspects of our MPN symptom burdens that require advice from a specialist familiar with your unique situation as well as any other health issues you may have. I would advise you be moderate in your exercise until a specialist can decide if it’s safe to do more. Good luck. Katie

[MKS60 in reply to katiewalsh]

Thank you for your advice Katie - this all is still very new to me and I’m still trying to understand all the implications (and indeed believe the diagnosis) -I don’t think there are very many MPN specialists in Australia - I usually go to Melbourne quite frequently so any names down there would be appreciated. At the moment only my bloods are abnormal with grade 1 bone marrow so I’m doing the watch and wait. I do have great faith in my haematologist though.

[katiewalsh in reply to MKS60]

Im pretty certain there are & I think health unlocked website has a list of docs all over the world. You can also post on here,. “LOOKING FOR LIST OF MPN SPECIALISTS IN AUSTRALIA”

I’m in the US so not familiar with Australia. But the MPN FOUNDATION I think has the name of a medical group foundation with info of MPN specialists in Australia. If you can’t find, ask MAZ. If still can’t find let me know. Good news about your labs. Take care!! Katie