Pre MF info?- Vitamin D and immune cells stimula... - MPN Voice
Pre MF info?- Vitamin D and immune cells stimulate bone marrow disease
full paper:
ashpublications.org/blood/a...
Hi, hon, been good but I am too overwhelmed with fatigue, atm, what does it mean? Is there anything we can do? Avoid the sun?
I have sent the paper through to my specialist - along with some of my genetic testing results, and asked her to talk to me some more about it. I see her tomorrow, so will let you know - but she may not have had time either.Sorry to hear of your exhaustion.
Thanks, that would be great, hope she has time. I will send it to mine for my appt in 10 days, will compare notes.
Hi, thank you for posting this paper. The question I have is can we, MPN's ET Jak2+ use vitamin D3 supplement ?
This has come up before and I asked Prof Harrison about it. She said that she recommends taking a Vitamin D supplement.
Do you mean she dismisses this and says it’s better to take vitamin D? I find it hard to understand the lingo, I don’t understand if it’s got anything to do with how much vitamin D intake or if it’s all about the signalling no matter your intake.
I am not expert enough to answer that I'm afraid but, given the detrimental effects of Vitamin D deficiency, I am happy to follow her advice in the winter months.
Fair enough, I think it is extremely helpful to have someone that you can trust guide you.
Does this imply that we should not take vit D supplements then ?
That's exactly what I thought about. Because I also read something that recommends taking Vitamin D in case of an MPN.
Or does it make a difference at which stage I am?
🤔
I asked my doctor about this study a few weeks ago. He thought that studies in mice are 10 years away from human results and did not have a medical opinion on vitamin D reduction. I am 65 with p-vera and 88% jak2 burden. I think my disease is putting me closer to MF than I would like. The blood clot threat from p-vera can be controlled with Hydrea and phlebotomy, but post pv-MF is my biggest long term worry. I decided to cut back all my vit D foods, vitamins and sun exposure to reduce any possible post pv-MF transition that might be aided by vitD uptake. I can live with low vitD symptoms easier than I can with MF later. Even if this study does not prove out in humans, I want to be proactive in preventing disease transition to MF.
My understanding of the body's Vitamin D production is that exposure to sunlight makes you produce as much as you need and no more. Any danger would come from taking too much in supplement form. If your levels are too low, you may not have symptoms as such but it can be detrimental to your health and make you susceptible to diseases at least as bad and possibly worse than MF. I wouldn't wish MF on anyone but I am thankful I have this rather than a more aggressive cancer or heart disease. Please note that this is what I have learned as a lay person and I don't have medical knowledge as such.
Otterfield, in my humble opinion you nailed it.
You have to find the right mixture - which can be difficult, especially when you get information pro and con and both make sense.
The most important thing is that you are having a good gut feeling about what you are doing. That alone helps a lot - from my experience.
Unfortunately there are conditions that are associated with an unusually high production by the body of Vitamin D. One of these is sarcoidosis, an inflammatory state where organs (most commonly the lungs, but also the skin, eyes, heart etc.) are affected by the production by the immune system of granulomas, causing all sorts of problems. Granulomas are rich in an enzyme that converts Vitamin D to its active state, so that people with sarcoidosis are likely to have high levels of active Vitamin D and potentially hypercalcaemia (very dangerous). I have PV but have also been diagnosed with skin sarcoidosis. This article has set off alarm bells!! I already keep out of the sun as I am on HU, but I now have another reason for not taking Vit D tablets. My calcium levels are in the norm so far, so hopefully all is well with this low Vit D regime.
I do hope so, too, A, I understand that alarm bell business, I hope your specialist can explain what it all means in that paper…and I hope skin sacardiosis isn’t defined by itchy bumps, like, on the shin that never ever go away.
That's interesting - I hadn't heard of that. I'm sorry you are unlucky enough to have two rare diseases. I suppose this demonstrates the value of having our Vitamin D levels checked.
Some time ago, I heard a nurse on the radio stating that Vit D, being a hormone, can’t be replicated in pill form and that, yes, once your body absorbs a certain amount of D from the sun it leaves it there. I was with in agreement with Flynn2107 (although it’s probably too late for me) but after hearing you mention these diseases, possibly worse than MF I’d be thinking twice.Sometimes I think I’d rather have a regular cancer at least you’d know where you stood!! Always wondering does my head in. Especially at any little weird pain, like in my spleen area, or a twitch of pain in my head, or random palpitations, or waking with a hot flush, like, is that a night sweat, I ask myself….. anyway, I do not want to know, I need as much of break from this dreaded horror as I can give myself.
Not knowing is very stressful isn't it - I too worry about every little symptom. However, I would still rather have MF than, say, ovarian cancer, which one of my friends is battling. I know two people who have died from breast cancer in the last couple of years, one in her early fifties, the other in her early thirties. When I was diagnosed with MF, one very experienced consultant told me "People live for a long time with this." My life has changed and I HATE having cancer, but I am always grateful that I am still here and likely to be for a long time.
I sincerely hope that’s true for you…and me so long as it’s not too painful!My prognosis was that 50% of patients at my stage are alive in 8 years. So very vague…..not helpful!
I find statistics about prognosis to be very unhelpful as we are all so different. The consultant I mentioned said that even if I had wanted to know an approximate number of years, he couldn't have told me. We cannot know but just need to keep ourselves as well as possible and enjoy our lives as much as we can.
You are the voice of reason, thanks, O. I tie myself up in knots sometimes. I think the reason I mainly want to know (and stop vacillating ) is based on when and if I should start therapy…this is the very hardest part for me. I wish I could trust a medical professionals opinion but I have low regard for ours here and must spend hours trying to decipher medical journals or papers….and yet how can one?….when one test results are everything and little is written in the report.
I am sorry I didn’t sympathise with you over your friends earlier, that is so very sad especially to go so young from such a common cancer. From what I’ve heard about ovarian cancer it’s pretty much a death sentence so I very much hope she is one of the lucky ones…..none of this death business is any good!
It’s been nice to chat, O, thanks. Yesterday I was thinking how I could totally relate to your HATING this disease, it’s come to that for me too., now.
I hope you are comfortable, wishing you all the very best.
What a lovely reply - thank you 🙂 Apart from one haematologist who let me down badly, I have always been lucky and felt able to trust that my doctors are genuinely doing their best. In particular the haematologist I see now was the one who referred me for a consultation with Prof Harrison, which demonstrated that she was willing to admit to some gaps in her MPN knowledge. Yes I do worry for my friend with ovarian cancer, although a different friend, an ex colleague, had it about 4 years ago and is doing well. I keep hoping and praying.
I feel reasonably well at the moment and just have the nagging concern about whether or not I should have an SCT (if a donor can be found...)
Best wishes to you, Jennie
It’s nice to hear all that, Jennie, although the SCT would most definitely be worrisome. I dismissed the prospect immediately after realising the procedure and risk and that I already considered myself old, due to, unbeknownst to me, not ‘living’ after dusk due to feeling so tired for years. I’m 63 next month. I think I’d rather risk living with the hope that I’ll make it to 70 and not having a year taken out of my life (or my life itself!) or being put through that what I consider a harrowing experience. My husband agrees. But who knows what will develop in my psyche down the line!
Just thought I’d share another perspective just to confuse you even more 😅.
I am a sensitive one though and sometimes think life is overrated (terrified of dying though)….”life isn’t beautiful until it’s beautiful for everyone”, I saw that quote recently in a photo of some London colour/graffiti and it very much resonated with me.
I think you will know when the time is right. Seems like it may be one of those things where the answer comes if you leave it alone. 🤞Jennie x
Went to my specialist today - no spleen enlargement or kidney enlargement.As to the Vit D receptors - she had not a clue (despite me sending through links to the article) just saying that there had been no presentations on it. End of story.
However, some years ago I had my Vit D receptors tested and they were next to out of action / useless. Vitamin D levels very low. So - what does that mean? Have they shut down because of overuse, worn out or have they shut down as a self-preservation mechanism. That would be interesting to know.
I do not take supplements as such - but do have fermented veges and drinks where vit D and many other goodies are much more bio available. So - in the meantime, I think I will continue down that path and let my body take care of itself if it can.
Glad to hear spleen and kidneys good! Curious, i’ve never heard of having one’s Vit D receptors tested.Oh, well, as with most things there are never any answers. I’ll let you know if my haem proves this wrong.
In case your interested….it’s pretty involved!nps.org.au/australian-presc...
I guess it comes down to everyone being different, but I am now thinking I will stop taking the VitD sent by Dept for Health to help resist COVID. Pity I hadn't read this before the Manchester conference yesterday -I could have asked Prof. Summervaile. It will be interesting to hear what your haem says.
Did they tell you when taking Vit D you have to ensure you are not consuming any corn syrup? That stops the Vit D being useful at all - it stops it from converting into Vit D25 - and only when that is done can the body use it? Just out of interest, now that you are not going to take it anyway - but I would be interested to know if the advice you were/weren't given is as bad as that which I was given.
There are research papers on this - don't have on hand at the moment - there is also a very clear video on you-tube which shows how all this works in some detail.
corn syrup is everywhere (nice and cheap)
No. Certainly not given any instructions about what not to take it with! Fortunately I haven't been taking it with corn syrup.
After regaining some energy I read most of the full paper.The bottom line, folks - “In the clinic, the development of efficient VDR (VitD Receptors) antagonists and/or antimacrophage therapies may be promising strategies to control MPN patients with myelofibrosis.”AND ALSO, throughout the paper it only ever mentions a low dose of vitamin D and NOT no vit D.
Grab that bit of sunshine when you can, I say.
