It's very nearly 5 years since I was diagnosed with CLL or SLL (hospital never bothered to see which it was). Counts moving very slowly in a 'getting worse' direction but 3 months ago, for what reason I know not, the consultant ordered a Vit.B12 test. Normal is 200-900 and I came in at 197. Three months later it was 176, so I'm now waiting for my GP to organise some injections. Doing a bit of research into B12 deficiency I find that the condition can look very like leukaemia. A part of me wonders where I would be now if I had been tested five years ago for B12. Anyone else in a similar situation?
John
Written by
niceone01
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And it seems you are getting better attention from the NHS than some of our other UK members.
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There are several deficiencies that seem to impact CLL symptoms & fatigue, Vitamin B-12, Vitamin D3, iron, and several other blood minerals (e.g.: calcium, magnesium, etc.) should be monitored and supplemented when needed. When these are in the proper balance, we feel better and may live a more active lifestyle, that helps us live longer.
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Determining whether you have CLL or SLL does not make a difference. The monitoring and treatments are the same. Some SLL patients eventually develop enough CLL cells in their blood to be confirmed as CLL blood levels. Others develop large enough lymph nodes and spleen to need treatment without the higher CLL blood levels. So the doctors will just wait to see how your cancer develops without needing to specify which version you have.
If it is helpful to your perception of your disease: My hubby was diagnosed with "Cll/Sll", through a CT scan done for other reasons. A PET scan told them where to biopsy and the biopsy confirmed the diagnosis. Doctors did not differentiate the two but asked him to have his blood monitored every 6 months. Throughout the 6 years of w&w his blood did not go outside any normal parameters, and any lymph node swelling was with infections and somewhat minimal. The year prior to treatment, he started having strong reactions to any health concern... Vaccines, rashes, sinus issues, allergy, congestion. All things he's had in the past, all things he went to his primary doctor and not the hematologist for. Treatment began due to that and swollen lymph tissue in his nose and ears.
So you see, he was rightfully treated as if he had "Cll" while on w&w , and while his diagnosis would have been "Sll" in the past, neither of those labels lead to understanding of his prognosis or treatment prospects. No matter the label, each patient will have a individual course. I wish you great luck with yours!
When I was first diagnosed with SLL and the doctor said lymphoma, then he said CLL and leukemia - my head was spinning. Having never heard of either of these terms, I did not understand how a diagnosis could be both a lymphoma and a leukemia. Through educating myself via the CLL Society (cllsociety.org) and this forum, I learned that he "official" diagnosis just tells us where the cancer cells are collecting. SLL (lymphoma - the cells are collecting in the lymph nodes, and your blood might read normal for years). CLL (leukemia - the cells are in the blood, and the lymph nodes might appear normal size). With either original diagnosis - and as time to treat approaches, the cancer cells can eventually be found in both the blood and lymph nodes - and is the dual diagnosis of CLL/SLL (usually just referred to as CLL for simplicity). Either way, it's the same disease, treated the same way, the challenge with SLL only - you usually need CT scans to see how the lymph nodes are being impacted by treatment, or if they are enlarging while in watch and wait. None of us should be exposed to more scans than absolutely necessary - so with SLL you "fly blind" sometimes, unless other symptoms occur between appropriately timed scans. Wishing you the best on your journey. Onward!
Hey John. I have a similar path to you. My Vit B 12 always hovered in the 300-400's which is still quite inadequate. The B12/B9(Folate) ranges in the US are grossly inadequate. For example, in many countries such as Japan, deficiency is anything below 500. Furthermore, the standard serum B12 test that doctors order just measures B12 in the blood but not in cells which it the determining factor of efficacy. Better tests for B12 concentration are homocysteine, MML and MCV. I believe low B12 (among others) was a contributory factor to my CLL. This B12 deficiency can also leads to high homocysteine (which is an inflation marker) as well as high MCV & MCH which is the oxygen capacity of your red blood cells (check you latest CBC to see if you have MVC over 94'ish). Anyway, once you isolate you have low B12 through serum, MCV, homocysteine tests, you then have to figure out why your's is low. I have a strong sense it is, like me, because of poor stomach and upper intestine absorption or you might have the MTHFR gene which means you are a poor methylater of B vitamins. For me, digestive enzymes and B12/Folate or B Complex supplementation have really helped getting my B12 level up and my homocysteine & MCV down. Go slow at it with sublingual B vitamins as you don't want to go too heavy as you might have other vitamin deficiencies that are interdependent with the B vitamins....No magic bullet here but baby steps and it will take several months to get yourB12 in the high normal range. My CLL journey has been about tackling one or two bad markers at a time and hopefully we can keep our CLL as indolent as possible.
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