CLL and B12 injections

[john133]

Hi

Can anybody give me any advice on whether or not it is safe to have B12 injections. I have Been living with CLL for five years now. I get pretty lethargic and run down at times and wondered if anyone can give me any information on this.

I am male and 76 years of age.

Thanks

[PlanetaryKim]

I had one B12 injection once, and it made me sick. But my body and health was very knackered at the time and my immune reaction was easily triggered by anything. I suspect any injection would have made me feel the same way.

I subsequently read that taking B12 orally (sublingually so it goes directly to your bloodstream, bypassing gut) is as effective as B12 injection, but will take a while to build up in system to level provided in a single injection. I normally take oral B12 daily but have recently stopped.

HOWEVER... before you start anything like that, it would be best to have a blood test to see if you even need B12. Can be many reasons for lethargic run-down feeling. B12 may or may not help.

best of luck,

kim

[TimHB]

I've been giving myself B12 injections every 3 weeks for 30+ years due to pernicious anemia resulting from a bowel resection, unrelated to my CLL. My clinical trial docs know about it and approve it with no conflicts with my CLL or my treatment with ibrutinib and Gazyva. I still struggle with CLL fatigue, however. Not sure it helps with that.

[MsLockYourPosts Passed Volunteer]

I agree with Kim. Have your level checked first. Also your vitamin D level. Mine were both very low when first tested. D3 pills and sublingual

(look for that on the label) B12 brought both into range. It took some time, with checks every three months, to find the right doses for me. Don’t go by anyone else’s dose.

I recently found myself struggling to get through the day. While my levels have been checked regularly over the years and my dose has been consistent, my b12 had crashed. Changing the dose took care of things. There are some people who don’t benefit from B12 pills and need injections. Your primary care or your hematologist should be able to help you determine doses if needed.

[Cllcanada Top Poster CURE Hero]

Have your B12 and folate levels checked then monitored... if B12 is low then have your instrinsic factor IF, tested.

I have had monthly B12 shots for 12 years due to pernicious anemia, that everyone thought was anemia caused by CLL.. which it wasn't.

People switching diets to become Vegans or whatever sometimes need B12 injections .. as always see your doctor.

vegansociety.com/resources/...

~chris 🇨🇦

[starsafta]

Have you had your thyroid levels checked?

[pkpayne]

While I was taking Folate, D3, and giving myself B12 injections is when I was dx with CLL - which is a couple of years ago now. I'm in treatment with Ibrutinib/Venetoclax and my specialist knows what other meds I'm taking and is okay with them. But by all means have them all checked first.

[Rmorales10]

Hi John,

I have been living with CLL and I was extremely fatigued. I ended up finding a functional medicine doctor that has been awesome. All CLL patients are low on vitamin A. Also I did some additional tests and found I have elevated Cadmium, Lead, and Thalium in my body. I started doing chelation therapy and UV blood treatments and I feel amazing. I also found that going on a sauna (far infrared heat) helped my lymphatic system along with bouncing on a bouncer for 10 minutes helps the lymphatic system. I had a spike in my white blood count and lymphocytes when I stopped. I want to give you hope. NEEM leaf extract also causes cell apoptosis and will help to get your lymphocytes down. Make sure you don’t use antiperspirant so you give your system a chance. Eat lots of leafy vegetables, and you will feel better!

[AussieNeil Administrator in reply to Rmorales10]

Rmorales, I'm not aware of any general vitamin A deficiency correlation with CLL, so I think you meant vitamin D, which is definitely the case.

UV blood irradiation used to be fashionable in the 40s and 50s, but is now highly controversial. "The American Cancer Society lists blood irradiation therapy as one of many types of ineffective cancer treatment fraudulently sold by alternative cancer treatment clinics in Mexico."

en.wikipedia.org/wiki/Blood...

Wikipedia also notes that "The U.S. Food and Drug Administration (FDA) has approved a modified use of this treatment for T cell lymphoma.", noting that the process first involves separation of the lymphocytes and that "This process uses a photosensitizing agent which enhances the effectiveness of the light". CLL is a B-cell lymphoma and a similar process of leukapheresis, where the lymphocytes are filtered out of the blood and the rest of the blood returned to the body did have some use 40 years ago, but only provided a brief response, before the CLL cells were replaced from enlarged nodes. The American Cancer Society mentions its use here: en.wikipedia.org/wiki/Blood... but I've never heard of anyone actually having it for their CLL in approaching 12 years of reading CLL support forums, probably because leukostasis (symptomatic hyperleukocytosis) or "sludging" in the capillaries, is extremely rare in CLL and modern treatments quickly reduce high CLL counts.

With respect to Neem leaf extract, check out SeymurB's well referenced reply on this post

healthunlocked.com/cllsuppo...

Neil