Forgive me if this has been asked previously, I did not see a way to search topics in this specific CLL group.
Does anyone get B12 injections? It is my understanding most CLL patients are deficient (?) because we don't absorb it properly (?) I've recently started taking Sublingual B12 and feel a little less tired lately. Anyone else experience this with b12?
Is anyone using good probiotics? Feedback appreciated.
I am of the mindset that supplements are not a cure all, but can't hurt.
I'm not sure that all CLL patients are B12 deficient. Probably no different from the deficiency levels in the general population.
I don't have B12 supplements or injections and have had CLL for 15 years now without any deficiency symptoms.
I don't know what it is that prevents absorption in some people.
B12 is an important nutrient for the formation of red blood cells. While the primary reasons for anaemia with CLL are generally bone marrow infiltration, a swollen spleen or perhaps an auto-immune condition (AIHA), inadequate B12 can be an issue, particularly if your diet largely excludes meat and dairy and you aren't adjusting your diet/supplementing accordingly. Even without the effect of CLL or dietary choices, it's possible to have difficulty absorbing enough from what should be an adequate diet, such as lacking intrinsic factor in your digestive system. Sometimes taking a supplement is all that is needed, but some of us need B12 injections.
Checking whether your serum B12 is adequate is best checked by your GP/PCP doctor, as they request the relevant blood tests all the time to check for the common causes of anaemia, namely your iron, ferritin, transferrin, folate(B9) and B12 serum levels.
I'd say what is a good pro and prebiotic is very individual. There's also a risk if you are neutropenic.
Neil
I take B-12 tablets since my levels were low. Suggest you have yours checked. Not necessary to take if yours are within normal range. I do not take a probiotic. I did for awhile when I had gastroparesis. During chemo it is not recommended. Or if you are on a daily BTK - basically any treatment- it can wipe out/eliminate the meds/chemo. Always check with your doctor. 💕
Have your B12 and D monitored. If your B12 is deficient sublingual tablets usually are sufficient to get it into a healthy range. Some people lack "intrinsic factor" and need injections instead (thank you Chris Dwyer - wish you were here to explain that).
Chris is watching over us. Go to the pinned posts under this one - down on a phone - and there is Chris (Canadian Maple leaf icon) explaining things,
Hi, yes I am sure I'm among many who have 3 monthly subcutaneous B12 injections. Designed to boost my energy but because of other things fatigue still drags me down. Hope it works for you, do have it. Stay safe Mick.
B12 is absorbed by the gut via a substance called intrinsic Factor which is produced by the gastric parietal cells in the stomach.
If you don’t have enough intrinsic factor production to absorb B12 then sublingual B12 won’t be absorbed by the gut and im injections are needed.
Sublingual is fine if you’re just not eating enough B12 rich foods and want to supplement but any other B vitamins supplements would likely work just as well.
Jackie
I only heard about B12 and other B vitamin deficiency as a side effect of veganism. Animal foods contain plenty of it and even if absorption is somewhat inhibited it should still be enough.
Hi I use a good probiotic and prebiotic. I did start them prior to diagnosis so was encouraged by my consultant to continue. I am not neutropenic so I guess he thought they we good for me.Everyone is different what probiotic work for one person may not for another. I would check with your haematologist they are ok for you and ask your GP for recommendations.
Good luck
Ann
I was advised against taking probiotics due to low lymphocyte counts. There is some risk of infection especially if your neutrophils are low.
CLL patients tend to pay more heed to diet in later stages and treatment, which for you I hope is many years hence.
While on chemoimmunotherapy I was advised to avoid probiotics and even live yogurt because they allegedly increase the risk of neutropenic sepsis. However, there's uncertainty around this advice, see bda.uk.com/uploads/assets/f... in which:
"Therefore, the recommendations to avoid probiotic cultures if patients are immunosuppressed have not changed. This approach is endorsed by the product manufacturers themselves. The advice is based on uncertainty rather than robust evidence of harm and these recommendations will require on-going review as further evidence becomes available".
The abovementioned guidance covers a range of food issues (and non-issues) for neutropenic patients.
I have been taking B12 injections for several years now. My levels are checked regularly were so low at first that I was injecting 1ml every week. I am now on a 10 day to 2 week schedule which keeps my levels within the normal range and does help with fatigue. Now if I could just figure out how to inject myself without bruising that would be a relief.
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