[sachbarnesParticipant]

Has anyone had private MRD testing in the U.K.? I know it’s not really done through the NHS, and NICE still hasn’t approved it for standard care. Our consultant (who is on the myeloma U.K. board) has also said it isn’t possible unless we find a private route.

Cost seems to be around £1,000. But I can’t find any info on where we could possibly get it done in the U.K.

As it’s a significant testing method to show active disease, and treatment direction, would really like to get it done for Dad however possible.

Tx

[mulberryParticipant]

Hi Sachbarnes
Did you find a way to get MRD testing? It’s something I tried to look into, and I would still consider doing for myself, but I did not identify anywhere I could get it done in UK.
Jane

[bearParticipant]

My Sheila had flow cytometry test twice on the NHS when being treated at the Royal Derby hospital…they send samples to HMDS up in Leeds for the test. both came back mrd-.

[bearParticipant]

Damn phone autocorrect….hmds.info

[sachbarnesParticipant]

Hi Jane/Bear.

We have our final consultation on Wednesday so will ask then if there are any options.

I know that bone marrow biopsy/flow testing is done from time to time to give MRD status in the UK, but not to a high level. i.e the range of MRD negativity can be 1 in 10,000 cells accuracy all the way to 1 in 1,000,000 cells.
If you can get MRD negative at 1 in 1,000,000 then its the most accurate measure we have of long term remission. But NHS testing in the UK doesn’t reach this accuracy. In the US they even use it to see if patients need SCT, because the pre SCT depth of response could be at a level where it wouldn’t improve anything further anyway.

I think with dads light chain ratio still outside range, and him being 68, it probably makes sense for us to go ahead with SCT regardless. But for future monitoring, I really want to see if we can get it done.

Will update if I find anything out.

[sachbarnesParticipant]

Hi, saw the consultant on Wednesday. He said Oxford Churchill offer it privately at around £1000, and it’s one of the only places that does. He said it’s still in discussions with NICE for NHS rollout, because if the depth of response is at a certain level, maintenance would not offer any additional benefit.

I told him we will look to have it done ongoing, maybe every 6 months post SCT. In my view, Lenalidomide could always be picked up as maintanence if still at MRD negative but depth of response decreasing.

[mulberryParticipant]

I have been on lenalidomide maintenance for nearly 3 years & am seriously considering MRD testing to inform about the relative merits/risks of remaining on maintenance indefinitely.
I don’t think that MRD testing can give the degree of certainty I’d like, there is still professional uncertainty about which myeloma patients would do well without maintenance, and I know certain renown USA specialists are still recommending maintenance until relapse or side effects prohibit it, despite MRD test results. The depth of testing available is also another consideration- as this is a fast changing field . However, I still would be very interested to know what level of myeloma is detectable within me.
So far I have been told that (as Bear said) samples can be tested in Leeds, and possibly in London, and Sachbarnes has been told Oxford Churchill offers it. Is anyone aware of anywhere else?
Do you know if it’s ‘just’ flow cytometry which is offered or NextGen sequencing too?

[sachbarnesParticipant]

Fyi I asked about MRD testing again yesterday, as when dad has his next bone marrow biopsy, it makes sense to do it when that’s possible if the timing works.

He said apparently it’s with NICE for approval for anyone who has had a STC and is on maintenance, with decision likely to be within the next 2 months. He doesn’t think they will approve it though, and they still have some legalities to have it up and running in Oxford privately anyway. He thinks by March this is hopefully in place.

[mich05Participant]

Hi
I am still relatively new to this , but on the Radar trial which from reading your comments will hopefully give some answers to your questions and show benefits of MRD testing . I didn’t know that MRD is not routinely done and I think my samples go to Leeds. I’m due testing this week after my induction though even if MRD negative 🤞the plan will be to proceed to SCT .

[Author]

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