Vitamins/supplements for cll?

[Vivikaye1]

I found out AFTER I was diagnosed with CLL that low vitamin D is a risk factor for getting CLL. I have had chronically low vitamin D even though I worked outside for half my working life. I was haphazard in supplementing the past 30 years. With recent research, I'm seeing all kinds of supposedly helpful supplements, but it gets pretty overwhelming. I have made an appointment with a naturopath to hopefully get more guidance, but they are expensive and not covered under my insurance in the US.

My condition is in the wait and see stage. My WBC count has been stable from 3 months ago, and platelets are normal. Presently I am taking turkey tail mushroom extract, a drinkable serum called Genesis Effect, an organic concoction formulated in Niagara Falls, NY., green tea extract (less than the recommended dose because it upsets my stomach, and 30,000 IU of vitamin D. I am not taking vitamin C supplements, as I only am finding conflicting reports.

[MistyMountainHop]

There are lots of videos about vitamin D, and D3 (new evidence) on YouTube, some are by doctors. Worth a look, but you'll have to make your own mind up.

I take vitamin D3 and K2 MK-7 together. But that is my choice.

[Vivikaye1 in reply to MistyMountainHop]

K2 MK 7? Never heard of it. A kind of vitamin K?

[MistyMountainHop in reply to Vivikaye1]

well.org/healthy-body/compl...

[Joannh70 in reply to MistyMountainHop]

I had never had a D deficiency until 6 years into my CLL/SLL journey. The amazing progress in treating this disease, since my FCR chemo treatment days, is amazing and so promising. I was never watch & wait, likely due to the fact that I was just 40 years old and the CLL was not on the radar. (Sadly more younger people are also developing this form of blood cancer). Sending you health & wellness wishes!!

[MistyMountainHop in reply to Joannh70]

40 years old is very young. You are right, folk are getting this condition, at increasingly younger ages.I wish you well for the future🌞

[AussieNeil Administrator]

Welcome to our community!

I see that you have been doing some research and have found that vitamin D is more likely to be low when we are diagnosed with CLL and we are likely to benefit from improving our blood serum level, particularly given we need to be careful with sun exposure, given our increased risk of skin cancer. Mayo clinic have actually done a clinical trial to see it there are benefits to vitamin D supplementation in patients with CLL and other blood cancers.

You are right about the conflicting reports about vitamin C too! We've had a few members try IV vitamin C infusions, with one member trying it for about a year and reporting no benefit. Blood cancers are rare, and sadly, it's not uncommon for naturopaths not appreciating that evidence for supplements helping patients with a myeloid leukaemia doesn't necessarily apply to those with lymphoid leukaemias. CLL is one of about 80 Non-Hodgkin's Lymphomas, more specifically, one of about 20 of the chronic Non-Hodgkin's lymphomas. Even among the chronic B cell lymphomas, proven treatments vary. This post highlights the difference in training you'll find in naturopaths in the USA and includes a reference to a post where I have collated reports of what evidence there is for commonly recommended supplements by naturopaths, etc

healthunlocked.com/cllsuppo...

Neil

[Vivikaye1 in reply to AussieNeil]

Thank you very much! Very informative, it will be interesting to see what the naturopath says.

[very]

We both take vitamin d3 from October to march.

Jenny uk

[Vivikaye1 in reply to very]

How long have you had cll?

[very in reply to Vivikaye1]

My husband has had CLL since 1999.He had 6 round's of FCR in 2016.He is now 79yrs and doing great.

Jenny uk

[Joannh70 in reply to very]

I also was treated with FCR and it seems those of us who were either remain stable for longer periods (of course I'm not referring to W&W patients), and also respond very well to more modern, pill type of treatments! The strides they've made is amazing!

[Vivikaye1 in reply to Vivikaye1]

I was diagnosed 4 mos. ago

[joed1rt]

I take a daily multi-vitamin, sublingual B12 and D3. Are you sure you are taking 30,000IU of Vitamin D? That seems like a massive amount (30 pills). Could you have meant 3000? I did notice that after taking the B12 for 6 months my RBC went up a bit but I cannot conclusively say it was because of the B12.

[Vivikaye1 in reply to joed1rt]

Yes, 30,000 just for a short time, then I will go to 5000. Dr. recommended that for quick remediation

[Joannh70 in reply to joed1rt]

I also take 30,000 it is a gel type pill. For me, it's every 3 months, every other day for 8 days.

[Vivikaye1 in reply to Joannh70]

Yes, a soft gel.

[SeymourB]

Vivikaye1 -

> I found out AFTER I was diagnosed with CLL that low vitamin D is a risk factor for getting CLL

Just to be clear, I've seen no evidence that low vitamin D causes CLL. Is someone saying that?

=seymour=

[SEH71]

I was diagnosed three years ago. I also read reports about CLL and low vitamin D. Had my levels checked and I was at 28. I take 5000iu vitamin D/K2 and magnesium daily. Levels are now in the 50’s. My WBC continues to rise. I would not say the vitamins do anything for CLL but, keeping your levels up is good for anyone.

[Vivikaye1 in reply to SEH71]

Yes, it certainly can't hurt. We all have to face that there is no cure short of a miracle at this time.

[Teemed]

I researched for years and finally settled on a Harvard nutritionist regime for immune system boost

Tumeric

Vitamin D

Vitamin C

Zinc

I’ve been on Calquence for 2 years and no infections or Covid even though my wife had Covid twice ( I and she are vaccinated) My specialist is informed of my vitamin regimen

[Curling123 in reply to Teemed]

Teemed, could you tell me what dosage of Vitamin D, C and zinc you take? Thank you.

[Teemed]

C 500 mg x2 a day

D1000-2000

Zinc 15-30