Anyone taking Liposomal C

[steve_canada]

Wanted to know if there’s any issue taking Liposomal C as I am currently on Ibrutinib.

Anyone taking it?

[AussieNeil Partner Administrator]

Hi Steve,

Are you taking Liposomal C at the recommendation of your naturopath to hopefully improve your immunity? This recent paper ncbi.nlm.nih.gov/pmc/articl... reports of the influence of vitamin C/Asorbic Acid on lymphocyte function and with regard to B-lymphocytes states:

"In conclusion, it is possible that vitamin C has an effect on the proliferation and function of B lymphocytes but the results until now are inconclusive." (my emphasis)

This paper from 2017, Vitamin C and Immune Function ncbi.nlm.nih.gov/pmc/articl... also notes that "The role of vitamin C in lymphocytes is less clear, but it has been shown to enhance differentiation and proliferation of B- and T-cells, likely due to its gene regulating effects." (my emphasis)

So you might be countering the effect of Ibrutinib on your CLL by taking Liposomal C.

Neil

[steve_canada in reply to AussieNeil]

Hi Neil, when I was diagnosed with CLL in Jan 2019 , I met with a naturopath who had a specialization with oncology.

She had me doing the IV Vitamin C once a week but at $250 a session it became too expensive.

I asked her about Liposomal C which apparently is a lot cheaper and she approved of it.

Like everyone on this board, I’m always trying to find something that can help in the fight.

What meds are you on and do you take any supplements ?

[AussieNeil Partner Administrator in reply to steve_canada]

I'm on a clinical trial of acalabrutinib, venetoclax and obinutuzumab, so I'm not taking any supplements. I can't take any without the approval of the clinical trial doctor, to avoid potentially impacting on the clinical trial results. From all I've read on vitamin C and CLL, it's a supplement I'd avoid in any case.

With specific respect to IV vitamin C, a while back one of our members on watch and wait reported having IV infusions for a year, at a cost of $10,000 I think, which matches your cost. He reported no benefit for his CLL. Did you ever observe a sustained reduction in your lymphocyte count while taking vitamin C before starting Ibrutinib?

Neil

[steve_canada in reply to AussieNeil]

Hi Neil, I started the IV C after I started on IB and I know it definitely gave me a boost of energy, but I couldn’t afford it so that’s why the Liposomal C idea came to me.

That’s one of the issues I have with IB is the drop in energy so that’s why I want something that gives me a boost.

If I feel drained and tired it plays on my mental state.

If I feel energetic then I am much more positive . So I will continue to carefully select my supplements and do my Wim Hof breathing and cold showers and my Five Tibetan Rites every morning because it works for me mentally and hopefully physically.

[JustAGuy in reply to AussieNeil]

Hi, are you saying you would not use a C supplement? I understand C assists with iron absorption in the intestines, which is needed for hemoglobin production...

[AussieNeil Partner Administrator in reply to JustAGuy]

While vitamin C does help with iron absorption, time after time, medical studies on supplement use show that the best way to achieve sufficient essential vitamins and minerals is through your diet. I have at least 2 pieces of fresh fruit daily, including enjoying several kiwi fruit a week, plus I've increased my vegetable consumption since developing CLL.

[Tapps in reply to AussieNeil]

Learning as I go! I’v been taking Vitamin C 500mg. Costco brand. Started Ibrutinib on July 01, 2020.

Is it possible that it could interfere with the Ibrutinib? Oranges are healthy, but full of potassium. Potassium is not on the Kidney friendly diet. I have low GFR numbers. Was at “40” count, got it up to

55 - 59. “40” is considered “Acute Kidney Failure.” So don’t want to do anything that upset my Kidneys. Potassium can!

Thought a Vitamin C would be good?

Be well friend, Tapps

[AussieNeil Partner Administrator in reply to Tapps]

After checking the references for Ibrutinib drug reactions with vitamins in these databases healthunlocked.com/cllsuppo.... plus drugs.com, the only vitamin interactions I found were:

"The metabolism of Ibrutinib can be decreased when combined with Vitamin D.

Vitamin E may increase the antiplatelet activities of Ibrutinib."

Neil

[Tapps in reply to AussieNeil]

Thank you, I’v been trying to research Vitamins, with Ibrutinib treatment.

Vitamin C interaction did show up. The medical terminology made my head spin. I’m taking,

Vitamin D3, Vitamin C, Vitamin B12.

Now I’m concerned, may be doing more harm than good?

Tapps

[AussieNeil Partner Administrator in reply to Tapps]

Are you low in any of those vitamins? Are you able to share the vitamin C interaction reference?

[shazie]

I have been taking LC for over two years. I am not sure of any issues with CLL but I haven’t checked with any of my doctors.