Vitamins for CLL

[PJWheeler]

I've always been a firm believer that God provides a means in the natural world to help heal ourselves mentally and physically. Along with my chemotherapy medication Imbruvica, I'm also taking a combination of Vitamin C, E, and green tea supplements. What other natural occurring vitamins have been found to help us with our CLL, our white blood cell counts, and our immune systems?

[caven]

May I clarify a word you used in conjunction with Imbruvica/Ibrutinib, chemotherapy?

"Imbruvica is not a chemotherapy drug but one of what are termed 'targeted therapies.' Targeted therapy is about identifying other features of cancer cells. Scientists look for specific differences in the cancer cells and the normal cells ... to create a targeted therapy to attack the cancer cells without damaging the normal cells, thus leading to fewer side effects. Each type of targeted therapy works a little bit differently but all interfere with the ability of the cancer cell to grow, divide, repair and/or communicate with other cells.

Imbruvica inhibits the function of Bruton's tyrosine kinase (BTK). BTK is a key signaling molecule of the B-cell receptor signaling complex that plays an important role in the survival of malignant B cells. Imbruvica blocks signals that stimulate malignant B cells to grow and divide uncontrollably."

Extracted from chemocare.com/chemotherapy/...

Caven

[PJWheeler in reply to caven]

Thanks for the clarification Caven

[lankisterguy Volunteer]

There is clinical trial evidence that maintaining a correct level of Vitamin D3 has a positive effect for CLL patients on PFS and OS (Progression Free Survival and Overall Survival). And CLL side effects like fatigue can often be improved by testing and supplementing, if needed, for Iron, Ferritin, Folic Acid, Vitamin B12.

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The key message is that testing and titrating to achive the correct level is important. Just taking a random amount of a supplement is unwise, since some of them ( e.g. Iron or D3) can be harmful if the levels are too high. So get your GP or CLL doctor to test for the correct levels in your blood.

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Vitamin E or Fish Oil may be discouraged when you are on Ibrutinib / Imbruvica since they may increase bleeding and bruising. You should check with your doctor.

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High levels of Vitamin C may stimulate Lymphocyte production, not something desirable for CLL patients.

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Green tea supplements can reduce lymphocytes, but can have noticeble side effects when taken at theraputic levels. Plus there are concerns about contaminants in many of the green tea supplements from 3rd world countries.

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Len

[PJWheeler in reply to lankisterguy]

Thanks for the informative reply Len

Best,

PJ

[WinJ3]

Every patient is different. I have a vitamin D deficiency, so my doctor put me on Calcium Carbonate-vitamin D3 600 Mg Vitamin D .

Be careful with supplements, making sure you run them thru your Doctor or Pharmacist.

Win

[Splash24]

Vitamin D

newsnetwork.mayoclinic.org/...

[PJWheeler in reply to Splash24]

Thanks Spash24

[Hoffy]

N of 1 by Glenn Sabin is a good book discussing vitamins and diet.

I drink a lot of high quality green tea.

I do take curcumin tablets.

Be well,

Hoffy

[Canuck901 in reply to Hoffy]

Just curios what kind of curcumin tablets. ?

[Hoffy in reply to Canuck901]

Something like this from doctors best.

High Absorption Curcumin with C3 Complex and BioPerine, 1,000 mg, 120 Tablets

I take vitamin D3 as well.

Vitamin D can be tested with your blood work and you can take an amount to bring it back up if needed. Typically people take about 2000 IU a day. It is not water-soluble so I’m told it’s not good to take too much.

Since I am mostly vegan I take some B12 as well.

Be well,

Hoffy

[Splash24 in reply to Hoffy]

test, 2000iu per day and my number was still very low, I know of many others in the same situation, don't focus on the amount, but rather what said amount does to your serum level, people get hung up on amount and that should not be the focus.

[Canuck901 in reply to Hoffy]

What is your daily meals like if u don’t mind me asking ? Breakfast , lunch and supper ? Thx

Do u eat gluten free as well ?

[PJWheeler in reply to Canuck901]

Hi Canuck901, I still keep a steady breakfast, lunch, dinner routine, and am not gluten free. I have not changed my diet since my CLL diagnosis, and at this time, have not had any ill affects

Best,

PJW

[Canuck901 in reply to PJWheeler]

What type of vitamin C ?

[Hoffy in reply to Canuck901]

Breakfast: I usually have organic Steel cut oats with nuts, raisins, real maple surup or agave. Or a good cerial with Almond milk.

Lunch: PBJ, Asia food with Tofu, salads with good veggies. Rice dishes with veggies.

Dinner: Pasta with vegan meat balls. Beyond Burgers, Asian with tofu.

Watch forks over knives on netflix. The book the China Study is very good,

It is not that meat is that bad it is just we eat way to much.

In the past most could not afford to eat too much meat ... and they would have to manual labor much more...

Be well,

Hoffy

[Canuck901 in reply to Hoffy]

Thanks for sharing the info I’ll have to check out forks over knives and the China study

We eat a lot of organic oatmeal with raisins hemp seeds and maple syrup with milk

It’s just some of the other meals mainly supper to try and stick to vegan and limit meat we do eat salmon Halibut some chicken and elk meat once every 2 weeks

Thanks again

[Canuck901 in reply to Hoffy]

Hi Hoffy

Very interesting

What are your daily meals like as a vegan ? Breakfast , lunch and supper if you don’t mind me asking . Thank you

[Hoffy in reply to Canuck901]

I am not gluten free,

Be well,

Hoffy