Husbands first year cll

[Paula1975]

Just wanted to let everyone know my husband has had his second appointment and his WBC gone from 15.6 to 13.2 and his lymphocytes from 10.6 to 9.....is this normal first year anniversary and his blood results are better than a year ago.

[AussieNeil Partner Administrator]

While the lymphocyte count only measures the tumour in the blood, based on just that result, your husband has very stable CLL. The lymphocyte counts are basically the same.

If you have his prognostic factors, they would probably be consistent with his stable CLL tempo.

Neil

[Paula1975 in reply to AussieNeil]

Thanks Neil in the UK they don't do any further testing until treatment is needed..it will be then we will find out his prognostic markers....thanks for your reply.

[AussieNeil Partner Administrator in reply to Paula1975]

You may be able to gain some insight into whether he is IgHV mutated (which fits with his stable presentation) from his Flow Cytometry results, which confirmed his CLL diagnosis. Irrespective, appreciate the likely very long watch and wait!

[Hidden in reply to AussieNeil]

Oh I tried to get the test for IgHV mutations in the U.K. because I was curious after successful treatment. Told it is not done in the U.K. under the NHS, unless part of a trial.

[AussieNeil Partner Administrator in reply to Hidden]

Same in Australia pretty much...

[HopeME in reply to AussieNeil]

I continue to wonder what the cost of this test is? $1,000, $5,000, $15,000? Many hospitals in the US also don’t do this test upon diagnosis for cost reasons and I suppose under the ignorance is bliss theory. But my question remains what would it cost a patient If he/she paid with personal funds? No one seems to know.

[MsLockYourPosts Passed Volunteer in reply to Hidden]

Do you have your husband's Flow Cytometry results? Some consider CD 38 as an indication of possible mutational status.

[Paula1975 in reply to MsLockYourPosts]

Hi he didn't get one he had a biopsy done from a lymph node in his groin and it came back cll the only other thing on his diagnosis letter was something about his peripheral blood indicated 5.5 and they made the diagnosis b cell cll thanks

[AussieNeil Partner Administrator in reply to Paula1975]

I suspect that if you look at your husband's node biopsy report, Flow Cytometry was used to confirm he had CLL. It's pretty well the definitive diagnostic test used, irrespective of where the cell sample was taken - blood, bone marrow or node biopsy. Look for a string of CD expression numbers including CD38. Showing CD38 negative corresponds with around 60% probability of being IGHV mutated.

Neil

[Paula1975 in reply to AussieNeil]

Hi will ask next time at hospital thankyou

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

My first Flow was done from bone marrow. If he doesn't have Flow results I would ask how they determined his diagnosis.