1st bloods after treatment .

[Guinness4822]

I am seeing consultant next week and having bloods taken after finishing 15 months on Ibrutinib and venetoclax. Should I be asking for any other blood tests other than FBC? I have felt a little tired and had a lingering cold and chest infection but it hasn't hasn't stopped me working or going out.

[Dragonfly2007]

Hi Guinness4822, well done for completing the 15 months, hope the appointment and bloods go well. I'm in week two of the same combination so some time to go!

[Guinness4822 in reply to Dragonfly2007]

Thanks

[Poodle2]

I believe you can ask for a flow cytometry. They can check your MRD status from peripheral blood. You would hope it to be uMRD 👍🏻well done on completing your treatment.

[Guinness4822 in reply to Poodle2]

Thanks

[Guinness4822 in reply to Poodle2]

Thanks 👍

[Skyshark]

If they haven't done MRD testing ask, why not? I know from posts on HU that Guy's, St Barts, UHCL, Royal Marston, The James, Leeds are all doing MRD testing routinely after V+O for NHS patients. (They are all leading well known UK hospitals and have CLL specialists.)

uMRD4 has exactly the same prognostic significance for V+I as it does for V+O.

From what I've seen on my post V+O treatment blood test requests.

There should be at least one Direct Coombes Test (DCT/DAT) for AIHA after treatment. The white blood cells start making antibodies that attack red blood cells causing anaemia.

Serum immunoglobulins IgA, IgG and IgM, these give an indication of ability to fight infections. Serum free light chains, lambda and kappa. Paraproteins - presence is not good.

Ferritin for iron levels.

Liver function tests.

Possibly screening for myeloma.

[Guinness4822 in reply to Skyshark]

Thanks. I'll take some notes.

[Lingwei]

How was your experience with I+V? I'm looking to start it very soon

[Guinness4822 in reply to Lingwei]

Hi Lingwei,

mostly very good I did get a bit anaemic after the higher dose of venetoclax but that got sorted. Otherwise a completely normal life life. I had loads more energy on treatment and this happened almost immediately.

Hope this helps,

Tony.

[Adlucy]

I had bloods taken on two separate occasions after I had finished treatment. One was for MRD and the second the usual FBC etc. The latter I had the day before seeing the consultant for my end of treatment follow up. I had thought this was probably standard in the UK

[Guinness4822 in reply to Adlucy]

Thanks for reply.

[wakewatcher]

I have just finished the same treatment. After a couple of months doing FBC I’ve been asked to do a bone marrow test for certainty about treatment effectiveness and MRD, and an ultrasound of my spleen (since this is where much of my disease resided). This would have been a more detailed scan but they considered I have had lots of scans recently and wanted to keep radiation doses down. A complicating factor for me is I have HCL as well as CLL and they want to check the treatment has successfully treated both. Good luck!

[Skyshark in reply to wakewatcher]

Can I add The James, Leeds to that list of "(They are all leading well known UK hospitals and have CLL specialists.)"

[wakewatcher in reply to Skyshark]

Most definitely, I have the highest praise for the treatment at St James

[Guinness4822 in reply to wakewatcher]

Thanks for reply.

[Guinness4822 in reply to wakewatcher]

Thanks for reply will b asking questions today re your input.