Hello again - updated name and avatar. Previously Dogsta. Well, after a strange 3 or 4 weeks I finally was given a diagnosis of CLL by the Haematologist but after checking on here and elsewhere I am now a bit confused. The flow cytometry came back with MBL (CLL phenotype) but just below the threshold for CLL diagnosis. 4.7 v threshold 5.0 for the absolute B cell count. The consultant went through everything very quickly, speaking very fast and looking at the screen mainly but she used the phrase “well it is below the threshold but I’m calling CLL” apparently based on other results from the FC test. My CT scan was clear apart from a known issue with the prostate. There are no palpable nodes. I was handed a booklet/guide on CLL and given a card with details of the Clinical Haematology nurses who might call me next week.
I did 2 blood tests at the hospital. One on the day of first appointment and then a call back a week laterfor another blood test, apparently for the flow cytometry. (Results attached). There was however a bit of a curve ball thrown in to the mix. The first blood test revealed a low B12 score (130) and I was given Cyanocobalamin 100mcg daily.
I did another B12 related test for Intrinsic Factor I think - and everything handed back to my GP. 6 monthly blood tests, as expected.
Some questions for the experienced and knowledgable on here:
Do I need a review or second opinion?
Will a CLL diagnosis affect things like travel insurance more than a MBL diagnosis?
Do I just go along with the 6 monthly check ups and bloods?
Is fixing the B12 deficiency the most important issue - especially as it now appears to be the source of my recent health issues?
Is there anything in the flow test results that might explain why the consultant “called CLL”?
The fact that I found this forum with its resources and invaluable contributions from members meant that I was able to go in to appointments confident in my background knowledge - this greatly reduced my stress and anxiety levels. For this I am eternally grateful. Thank you.
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Geoff_S
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Thank you Jammin_me. Pic edited to remove a name. I was thinking that it really made no difference if it was MBL or CLL as the 6 monthly blood tests would be the same for either condition and I need regular tests for other conditions anyway.
Without the full test results, I really can't say why your consultant is taking a conservative approach and calling it CLL, given you are bordering on High Count MBL, which has a 1 to 2% risk per year of developing into CLL Six monthly check-ups at least initially, seems appropriate per lymphoma.org.au/types-of-ly...
With respect to your B12 serum level, if you have low Intrinsic Factor, you'll have difficulty absorbing B12 from your food and may need B12 injections to achieve a healthy serum level necessary for blood cell production, so be guided by your specialist on this.
Link to Oxford NHS letter to GP. Make sure you get both of the pneumonia vaccines, Prevenar® PPV13, then 8 weeks later PPV23, Pneumovax II®. There should also be a Shingrix Shingles vaccine. I have yet to find out what other "catch up" vaccines are required (pre Covid the only vaccines I know I've had are TB booster at age 12 and polio sugar cube age 3).
If the recent health issues are recurrent chest infections you need antibiotics as per the letter.
Was that print out given you? Or is it a copy of a letter they sent to your GP? I didn't get anything like that but Leeds is one of the UK hospitals that does clinical trials and has some of the best CLL UK specialists. (But unlike Oxford all their protocols seem to be securely locked away,)
I wouldn't just yet. But I would start thinking about lining up a CLL specialist within your medical system so that if you need a second opinion (much closer to treatment time, which might be many years out yet), you have someone at the ready. cllsociety.org has some resources on this.
Will a CLL diagnosis affect things like travel insurance more than a MBL diagnosis?
Yes. And I'd look over your life and disability insurance right now, because once you have a formal CLL diagnosis your options there will be quite restricted.
Do I just go along with the 6 monthly check ups and bloods?
Probably at this point unless your hematologist thinks differently. Watch and Wait is the standard of care and may go on for many years. Even doubling rates won't be indicative until that 4.7 number gets to at least 30.
Is fixing the B12 deficiency the most important issue - especially as it now appears to be the source of my recent health issues?
I can't speak to your specific issues, but I will say that my hema/onc put me on B12 supplements once I started having more fatigue symptoms. They were quite helpful and not overly expensive.
Is there anything in the flow test results that might explain why the consultant “called CLL”?
I am not an expert here but typically if your flow cytometry markers generally resemble a CLL monoclone, they will likely assume CLL until further evidence presents otherwise. That's the "CLL phenotype" reference. Means they are not as worried for now about subvariants like other non-Hodgkins lymphomas.
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