There is a fair bit of interest in diet and its impact on MPNs. For those with that interest, there is a training called "The Pharmacy in Your Kitchen." offered by The Institute for Brain Potential. I took this training a couple of years ago and fond it quite informative. It is a much broader look at the role of food and nutraceuticals, but still might be of interest to some. It is available both as a Webinar and as a Download/DVD - recording. Note: it is not free. Cost = $79.00 USD.
Food as Medicine: There is a fair bit of interest... - MPN Voice
Food as Medicine
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hunter5582
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Cheers Hunter... 
Just heading out now but will be sure to have a deeper scan through a tad later buddy...
Cheers mate...
Steve
Worth a look-see. Not MPN-specific, but had good info when I took the training.
thanks for the info. Hope you’re still doing well. Had to get tested for Covid. Imagine my shock when it came back positive! GP finally took me seriously about my problems and now I don’t know if they’re ET related or have had Covid all this time! Things were getting worse even off of Hydrea so guessing maybe a combination. Stay safe my friend.
I am so sorry to hear you are COVID positive, but glad you found out. I guess you will find out what is what when you kick the COVID. You will be at the top of my prayer list! It really does speak to why it is so important for us to be assertive in managing our healthcare. I am really glad you persisted.
I am doing OK. It is looking like I may opt to begin PEGylated interferon. I am pretty sure the the ocular migraines I had are PV related and PV-related silent migraine triggered the palinopsia I experienced. HCT and RBCs are creeping up pretty quick and I am going to need another phlebotomy (last on 6/17). Platelets also seem to be running a bit higher than normal, with a recent unexplained spike to 903. Suspect the PV may be progressing, but do not know for sure yet. Will be seeing both the regular hematologist and the MPN Specialist to make a determination.
Many prayers headed your way.
Sweet prayers for you❤️
Hope all goes well for you let us know it just doesn't stop with this Mpn will send healing for you
Thanks for the well wishes. I am thankful that there are options to treat. Will have to see what is really going on then figure out the best plan. We deal as we must with MPNs.
What do you mean by PV may be progressing?? Progressing to.MF, or to some more aggressive form of PV??
in reply to Aneliv9
Hi Aneliv9 ... who or what are you responding to?? Just curious because you caught my interest. There’s nothing above or below you that would have brought on the subject of PV progressing....
Referring to possible progression in PV symptoms. RBC and HCT seem to be going up faster than in the past. Platelet levels have been running a bit higher on average with a recent unexplained spike to 903. Have also had recent incidents of ocular migraine, which is something new and likely PV related. The most likely trigger for the palinopsia incident is a silent migraine (which triggered the sensitive area in my brain from the tumor/surgery. No firm conclusions on this, but am reviewing it with my care team.
I actually still feel pretty good overall (hallucinatory palinopsia notwithstanding). I do not have the fatigue, brain fog, pruritis or other more bothersome symptoms others face. Still have never had any thrombosis and the excessive bleeding/bruising stopped when I d/c the aspirin.
We need to come up with a gameplan for dealing with the ocular migraine/silent migraine-palinopsia. The Neurologist was inclined to recommend Topamax, which I am not in favor of due to its significant negative side effects. I would prefer to treat what I think is the underlying problem - the PV. The MPN Specialist confirms that PEGylated Interferon is effective in treating PV-related migraine.
I have also been reviewing the recent research which supports the earlier use of PEG-IFN with PV patients. I was considering shifting my tx plan anyway, but now with the most recent events, I am pushing forward to explore this option. Not exactly something I am looking forward to, but a return to medication is inevitable with PV, even a relatively indolent case like mine. I am carefully evaluating my choices at this point. Planning to make a rational, considered decision based on the best information available. Will take the time to review and make a decision with my care team once we have had time to consult fully.
Hi Hunter5582, I am wondering whether you have an annual checkup of your jak2 mutational status ?
My regular hematologist and the MPN Specialist di not recommend annual allele burden check. They recommend rechecking if there is a change in symptoms. Appears that is not the case.
My hematologist said the same. I had to insist and he changed his mind as it can have an impact on the management of this condition. Theorically, the jak2 mutation doubles every 17 months. It’s important to have it checked annually.
Hello Manouche! I have learned so much from reading everyone’s comments on here! I have had PV, jak2 mutation, and ET for over 5 years. Never knew the jak2 mutation doubles every 17 months. Is that why the condition gets worse and you get more tired?
Hi Buggerbear,
The allele burden is not directly correlated to the symptoms. I’ve got a 83% AB and no (or extremely mild) symptoms. Conceptually, someone with a complete haematological and molecular remission should have no disease activity. No activity = no symptoms ( in the absence of comorbidities) and no disease progression.
It is really complex and allele burden is just one element. I am hoping that they will be able to identify more specifics in the mutation itself and how two people with the "same" mutation present so differently. We see the same thing with the NF1 mutation that causes Neurofibromatosis Type 1 (though it is comparing apples to oranges). There are different variants of the NF1 mutation that tend to have different outcomes. Even within the "same" variant there are significant differences in how the NF1 presents.
I should have my JAK2 quantitative analysis back next week as well as a Myeloid Panel. Will be using the information to inform next steps in my treatment approach as needed.
Thank you Manouche for tge clarification!😊
I had never heard that specific 17-month double allele burden increase either. I do know that the JAK2 mutated hemopoietic stem cells have a clonal advantage over the wild-type HSCs. That is why over time the mutant allele burden tends to increase. Allele burden is an important thing t know about, but very complex. There is more to MPN symptoms and prognosis than just the allele burden, but it does matter. It is just one component of how the MPN will present. There are other factors, like how many of the JAK2 mutated cells are homozygous vs heterozygous (one side vs both sides of the chromosome pair) and the non-driver mutations. Hopefully we will all come to understand more over time.
Wow, I have done a lot of research on PV and ET, but not a lot regarding the mutuation Jak2 V617F itself.....this really goes way over my head even though the analysis was furnished to me. I am glad that you and Manouche can share your knowledge with us. Mutations are mysteries to me, especially when there are so few of us with the Myeloproliferative Disorders. Thank you both!!
« The period of doubling of the pooled data was found as 1.4 years (CI: 1.2 to 1.7 years). This implies that the allele burden grows from 0.01% to 1% in 9.3 years, while the growth from 1% to 33% takes 7.1 years »
« ...This implies a total time from initial mutation to allele burden of 33% of around 16.5 years (CI: 14.2‐19.5 years). This estimate of the timespan of MPN development is in agreement with the literature. »
onlinelibrary.wiley.com/doi...
Thanks for including the reference. Interesting, but weighty reading. I should get my most recent labs back most week. Will see if the allele burden has increased in 1.5-years time. Also going to find out if any of the well known non-driver mutations are present. Thanks for sharing the information.
I like what Prof Kiladjian wrote today : « Please experts, help me... are there hematological malignancies where reducing the driver mutation is not clinically beneficial? I'm confused, this is disputed for PV and JAK2 mutation, so finding another example could be helpful... I can also take examples in solid tumors... »
I certainly plan to insist on JAK2 allele burden quantitative analysis at this point. Was not worried when everything looked stable, but that is no longer the case.
Where did he write that? Sounds like a great quote.
twitter.com/jjkiladjian/sta...
Thanks. I find myself in agreement. Will see what we see when I discuss it with my docs.
Hi, only just been reading your message. See it was 2 months ago. Hope things are much improved now and you are feeling better. Wishing you well.
Thanks for asking. Doing OK. Will be posting a more thorough update soon. No more incidents of visual migraine or palinopsia. While thombocytosis is up a bit, no evidence of progression of PV. Allele burden has only progressed 1% in the last year. The lab ran the wrong Myeloid Panel so waiting the get the correct panel results back.
Hi Hunter -- thanks for this! I'm going to check it out. Did you end up make changes to your diet after going through the course, and if so, did you feel better for making them? Always looking for anything that helps! Thanks,
Kim
Yes I did. I began to include more flavinoids and anti-oxidants in my diet. It also reinforced the value of nutraceutical supplements, some of which were mentioned int he presentation. I do not necessarily endorse or use anything mentioned int he training, but the notion that there a supplements that can have value is worth reviewing. This training was helpful in building a base of knowledge, with a few ideas that were specifically relevant.
Thanks for the link , very interesting.
Thank you very much for the link, everything that helps our health is a gift
Very interesting thanks for posting
It's always interesting to read your posts. I recently have taken some dietary advice from an Ayurvedic practitioner, all carefully working in conjunction with my current state of health, of course. Many years of living in Spain made a Mediterranean type diet my 'normal'. Lots of citrus, tomatoes, olive oil, shell-fish, chilli and rice - and of course wine! - all which turn out to be completely the wrong foods for my constitution at the moment! Anti-inflammatory food is what my body needs, and to be honest, the benefits of eliminating these obvious aggitants, has been easy. The less acidic diet makes me feel better on many levels, (an over active gut, stiffness/pain in bones, prone to small infections, mouth ulcers - the list goes on), and I've shed some unescesary kilos, too.
The increasingly incapacitating side effects of my medicines is what brought me to look for changes that might redress the balance of my holistic health. I took that to mean looking at the big picture, and *everything* I am putting into my body.
Today, I've asked for a medicine review with the hospital pharmacist, the haematologist and the GP, so 18 months since diagnosis for PV (JAK2+) I am trying to (respectfully) become more pro active in finding my way through this and feel the best I can.
I'm not advocating dietary changes are a cure, but my western diet is full of foods I just don't need and don't offer any benefits.
All the best,
P.s. I still enjoy a glass of organic wine now and again!
What you put in your body makes a big difference to your health and your quality of life. There are so many toxins in the Western food stream that are very bad for us. Toxic medications can do more harm than good. My former MPN consultant called it "poisoning the patient." Love his most recent commentary (which I will post below).
I am glad to hear you are finding the changes to your diet helpful. We can't cure the PV with diet, but we can improve our overall health and make ourselves feel better. The impact of the JAK2 mutation on inflammatory process is quite significant and we need to do everything we can to manage it.
Like you, I continue to allow some non-healthy indulgences, but they are indulgences - not a regular part of diet. My two guilty pleasures are bacon (low sodium) and bourbon (occasionally). Other than that, it is a plant-rich, whole grain, mostly organic diet with minimal dairy and small servings of meat/fish. Sadly, I discovered how much mercury is in tuna and no longer consume it (my mercury levels were through the roof when I ate it weekly).
Here is the most recent Spivak commentary.
Late to the thread but excellent information - thank you for sharing! Also interesting info below about allele burden % - doubling over certain number of years/how long it takes to increase. Curious if you found it to be true with your recent allele burden results?
My allele burden has increased form 25% to 26% in one year. Good news for me.
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