another quick update

[Hilo13]

I am now back home . My gall bladder has calmed down so the plan is to have it removed in next 10 weeks ( that’s the waiting time )

My biggest concern now is that the CT scan I had on Monday has revealed a 5cm mass in my stomach.

I am awaiting a CT biopsy which my haematologist has requested as she tells me it’s lymph nodes that are fused together? Please if anyone has anything to contribute about this I would very much appreciate it. I am really worried now and this latest revelation has really thrown me .

anyway on a brighter note I get to spend Easter at home and I wish everyone a good Easter .

[mrsjsmith]

Chris so good you are home. A Bank Holiday weekend spent in hospital is very depressing. Reduced staff and visitors who would rather be elsewhere. I have managed to do twice.

Colette

[Newdawn Administrator]

Hi and glad you made it home for Easter even though the low fat diet will keep you off the Easter eggs! 😉

Sorry that the latest scan has thrown up this worry for you. I vividly remember those words too, ‘a mass in the stomach’ but all was fine. Mass is such an emotive word! Frankly, with us CLL’ers, bumps and lumps are more to be expected than not! CT scans are remarkably informative and I think that if your Consultant suspects it’s lymph nodes fused together, then that’s what it very likely is! Small at 1.9 inches but of course they’ll biopsy it for caution.

I see you only finished your O&V treatments 7 months ago. Presumably you didn’t receive testing to see if you’d reached uMRD? Could be these residual problems hadn’t fully resolved and you would have required a bone marrow biopsy for clearer results. Hard to say without knowing your history and you may have the SLL presentation.

Try not to let your imagination take you to places it doesn’t need to be and get yourself stronger for your gallbladder removal.

Enjoy your Easter now you’re back in your own bed and the horrid pain has subsided 😊

Newdawn

[Hilo13 in reply to Newdawn]

Thankyou for your reassurance. I wasn’t tested or had a CT scan after I finished my treatment and it would seem that I have slipped through the cracks in the follow up procedure but we are where we are enjoy your Easter and thanks again

[Skyshark in reply to Hilo13]

I suspect there is a lot of "If you don't ask you don't get".

Did you ask about your remission status? They need a BM biopsy to declare complete remission.

Did you ask about MRD?

Or it maybe down to CDF funding requires the tests for "data collection"?

I check all 3 of those, I've had a CT scan and BM biopsy. They will have results to check off against iWLL remission criteria. I'll be disappointed if they can't tell me a MRD result next month.

[Hilo13 in reply to Skyshark]

Thankyou for replying I’m afraid in Wales our health services are on their knees even if you ask you are sometimes told they are not necessary but I assure you I will be far more vocal in my next appointment Chris

[Newdawn Administrator in reply to Hilo13]

Chris, don’t feel bad about not receiving this because regrettably it’s still not standard practice across all treatment centres across the U.K. to receive MRD testing following CLL treatment. Not everyone understands the technical complexities of what they should be requesting either. It is standard for people with ALL and for those of us who are on clinical trials. Sadly it’s not ingrained as part of the current care pathway even though it’s clearly good practice. Resources do play a big part and I totally understand the obstacles they can put in our way. So often they’ll look at the indicators from the FBC etc. for ‘clinical remission’ but it does mean there can be lingering pockets like enlarged lymph nodes which are not detected without the end point CT scan and peripheral blood testing and BMB.

nice.org.uk/advice/mib278/r...

Newdawn

[Hilo13 in reply to Newdawn]

Thankyou once again for clearing that up

I’m not a very confident person around professionals and tend to nod and accept that they know best . It is a trait I’m going to have to address though even if it’s only to ask relevant questions.

Your advice is invaluable and I wish you and yours a happy Easter weekend Chris

[Skyshark in reply to Newdawn]

That report was for ClonoSEQ which can detect MRD to 1 in a million white blood cells. NICE didn't find a clinical need for ClonoSEQ.

The cost of clonoSEQ is expected to be in the range of £1,100 to £1,400 per unit(excluding VAT). The resource impact would be greater than flow cytometry, which is £300 to £400.

Flow cytometry should be available as it appears in "Costs of standard care". This will be 4 colour Flow for 1 in 10,000 cells and not 10 colour or PCR that can detect 1 in 100,000.

southeastgenomics.nhs.uk/gl...

Immunophenotyping - Measurable Residual Disease (MRD) monitoring for CLL, ALL, AML and MM (5 days)

I can also see MRD testing for CLL on these NHS sites.

uhbristol.nhs.uk/media/4224...

liverpoolcl.nhs.uk/blood-sc...

[CycleWonder]

I was still working when I had my gall bladder removed. I was surprised at how uncomfortable it was to sit at a desk for at least two weeks afterwards. I could only sit for an hour and then I had to get up and move about. The surgeon opted for the laparoscopic removal which leaves four little scars instead of one large one. While it is easier in some ways to recover from, I found sleeping to be difficult. With four little incisions, there were no comfortable ways to lay down. A recliner chair may be of use to you in the first days of your recovery.

I also recommend a warm kitty if you have one. My kitty slept with me every night in the chair and it was very comforting.

Patti

[Hilo13 in reply to CycleWonder]

My hot water bottle is already to hand and I have been using the recliner to try and get some relief keep the suggestions coming please much appreciated