Ketogenic Diet

[Searcher56]

I am considering the ketogenic diet. About 16 years ago I went on the Atkins Diet but I could not stick to it at all. But the science behind low carbohydrate high fat diets has moved on and I will have another go this time better prepared. Has anyone out there tried it with success to ease their MPN? I am ET JAK2+ 62 year old female.

[Swede]

Hi,yes I have.I feel good but it hasn't changed E.T any.

I'm 62...E.T jak2+.

[Searcher56 in reply to Swede]

Thanks Swede, are you from Sweden. Watch this space.

[Swede in reply to Searcher56]

Yes,I am😁

[Searcher56 in reply to Swede]

I am from Finland.

[Swede in reply to Searcher56]

Hei

[socrates_8]

Hey Searcher...

I am Steve from sunny Sydney, and yes, I have been using a ketogenic-based, low-carb diet now for quite some time. Actually, I use it along w/ the 'intermittent' fasting (5-2) diet, and that does seem to work well for me, coupled w/ my exercise regime of mainly cycling... I have lost circa 20kgs since I started, thus far...

Best wishes...

Steve

[Searcher56 in reply to socrates_8]

Thanks Socrates. Watch this space.

[Searcher56 in reply to socrates_8]

Hello Socrates,

Has this healthy regime done anything to your platelets? I was diagnosed with ET in November 2016. I went on a diet of no tea, coffee, dairy, gluten and sugar and I lost 20kg quite effortlessly without any calorie counting. I also started walking about 30-40 minutes each day. This improved healthy life style does not appear to have done anything to my platelets. But how do I know, maybe my health could be much worse now if I had not taken action to improve it.

[socrates_8 in reply to Searcher56]

Hey Searcher...

I suppose the first thing to remember is that we are all just a tad different with our 'driver mutations' and many other different variables also in play...

However, in my case; when I was first diagnosed in 2016, my BMB showed Grade2 level of fibrosis (scarring of the bone marrow). Now, I am approaching my second year of cycling and this diet of low-carbs/intermittent fasting.

In May 2018, my BMB downgraded my level of scarring to Grade1.

Initially, I was ET but due to the scarring, I was reclassified to MF, so now Post ET/MF. Nevertheless, there has been an improvement. Originally, I did start on HU but simply could not tolerate well the symptoms and side-effects. After my MPN reclassification to MF I commenced Ruxolitinib (Jakafi), and it was like someone turning the lights back on... quite literally in my case...

My driver mutation is CALR Type2, which is supposed to indicate a higher platelet regime, (according to my own research on peer-reviewed papers of others).

I am also on 100mg of aspirin daily, however, my platelets still persist around the 700s-1M mark, usually. Last count - 881. Next bloods are due next week, and I have had a change of my routines slightly due to a cycling accident c. 8 weeks ago. However, that was just a minor setback, and I am cycling again now...

Searcher, you do also have another option, (in my view), and that is the Pegasys' Interferon... Many here are trying it these days, and so far reports seem to indicate greater satisfaction (some reports also indicate that Pegasys' can create molecular reversals). However, and that said, there are also others here who have been on HU for a long time w/out any real issues... (?)

As I stated earlier, we are all just a tad different...

In answer to your question:

In my view, yes, the exercise, diet and fasting help me a great deal, and also help with continuing weight loss, as well as helps me fight off the fatigue affects of my anaemia, in my view...

Overall, I feel much better than prior to undertaking the exercise/diet/fasting regime etc... But it is hard work at times, and I suppose not something that everyone will wish to undertake.

My logic is thus... If, (when), an ASC transplant ever becomes required, I will need to be as fit and healthy as possible in order to survive the rigours of the procedure. Hence, this is my new reality...

Hope something here helps...

Best wishes

Steve

[Searcher56 in reply to socrates_8]

My next haemo appointment is in December, I could ask about Pegasys, I thought you cannot get it on NHS, that's what my haematologist at the local hospital told me but I am now being seen at Guy's. Another approach on my list of things to try is reducing electromagnetic radiation (EMR). I have already made simple protection with a cardboard box lined with tin foil to cover my wifi router and the solar panel inverter in the loft. And I bought an expensive Geomack Energetic Vitaliser which is supposed to counteract the EMF in my house. Whether these measures help will remain to be seen but I die trying.

[socrates_8 in reply to Searcher56]

Hey again Searcher...

You might be correct concerning the NHS etc. As I am based in Sydney, Australia, and we have a similar health system called the PBS. Pegasys' was recently added to the list of available prescribed drugs etc.

There is another drug called 'Anagralide' (check spelling), however, it is said to cause cardio issues for some as its primary side-effect.

Not sure about your EMF ideas, but one never knows much in this life... You could be right... (?)

Me? I am sticking w/ my dietary/fasting/exercise regime for the moment... and for the moment it seems to be helping in my case...

Best wishes

Steve

[ksos in reply to socrates_8]

Hi Steve -- this is all very helpful. I've been considering the Keto diet and you've given me a lot of useful info here. One question: how did you discover that you weren't ET but MF -- was that the result of a bmb? Or something else?

Thanks,

Kim

[socrates_8 in reply to ksos]

Hi KIm...

MF was suspected at the outset due to the first BMB being at Grade2, then symptom burden and much later I was found to also have another more adverse mutation – ASXL1, which tends to be more prevalent in MF.

However, and all of that said, there has been a slight improvement in my bone marrow scarring (BMS), which is of much interest to me, as delaying the BMS might also be delaying the progression of my MPN. Well, at least according to my own theorising... and anything that increases my longevity is a most positive & welcome intervention...

Nevertheless KIm, the diet I endeavour to adhere to is not something everyone would wish to undertake. As I work to retrain my body not to require as much sustenance as we were all originally taught to want & need; i.e. 3 squares a day etc.

I never eat breakfast, very rarely eat a lunch, and always endeavour to take my evening meal a tad earlier, 4-6ish. I consume plenty of pure water, no added sugars ever (endeavour to avoid all forms of processed foods), no soft-drinks, only black coffee or herbal tea, no farm-fed meats, and try to only eat wild-caught sea-food & organic foods (and that is not always possible), plenty of fresh garden salads, little cheese, and loads of fresh fruit... Rarely any alcohol at all...

I would say my regime is 70% diet/intermittent fasting & 30% exercise w/ loads of cycling, stretching, aerobics, and some light weights.

Hope this helps...

Best wishes Kim

Steve

[ksos in reply to socrates_8]

Very helpful, particularly about diet. That's what I'm investigating right now and I really appreciate the details. Best of luck going forward,

Kim

[Riversquirrel in reply to socrates_8]

Haha this is the exact diet I'm on now: " never eat breakfast, very rarely eat a lunch, and always endeavour to take my evening meal a tad earlier, 4-6ish. I consume plenty of pure water, no added sugars ever (endeavour to avoid all forms of processed foods), no soft-drinks, only black coffee or herbal tea, no farm-fed meats, and try to only eat wild-caught sea-food & organic foods (and that is not always possible), plenty of fresh garden salads, little cheese, and loads of fresh fruit... Rarely any alcohol at all...

I would say my regime is 70% diet/intermittent fasting & 30% exercise w/ loads of cycling, stretching, aerobics, and some light weights."

It's nice to see there are other data points in the world. I'll continue uploading my data here as my dance with MPN continues and perhaps if others do as well, we'll be able to notice some corollaries to what is helping reduce the scar tissue in the bone marrow, and perhaps even reducing the progression of the MPN? How exciting!

[william-Indo in reply to socrates_8]

Hi Socrates_8,

Thanks for sharing here.

Any update of the result of your keyo diet and IF...?

[socrates_8 in reply to william-Indo]

Hey WilliamT...

I am still sticking to my diet as much as possible. However, while still not eating too much that is high in carbs, I am now really more working on the theory of an anti-inflammatory diet, because I need good energy reserves for my long cycling rides etc...

My weight is still good, but my platelets are still way too high at present 900s. Otherwise, I am managing pretty well I guess...

Thanks for asking...

Best wishes

Steve

[Deefen]

Hi!

I’m also a 62 yr old female with ET JAK2 positive. I’m also newly diagnosed - picked up on a routine blood test - I don’t have any of the usual symptoms. I’ve been on a ketogenic diet since February (didn’t know I had ET back then though) and I’ve found it very easy to stick to as you never feel hungry - it gives me heaps of energy, I work out every week day. I’ve also lost about 11kg.

Keto is said to be an anti-cancer diet, so I’m sticking to it now I know I have ET.

Hope it gives you similar results.

Dee

[Searcher56 in reply to Deefen]

Thanks Deefen, will inform if anything new.

[Hidden]

I have just started on Keto diet, have already lost 1.5kg in almost 2 weeks. I am ET CALR, 66years. on aspirin only. I am interested to read by Dee it is said to be an anti-cancer diet so I am for that. Anything to get those platelets down naturally! I feel great!

Lyn

[Searcher56 in reply to Hidden]

Thanks Lyn, I will continue with the search to find a cure.

[Deefen]

I’m in aspirin only too