[samsonitaParticipant]

Hi all –

I am writing on behalf of my husband who has been diagnosed with multiple myeloma (MM). We have received conflicting information on his treatment plan by his haematology team so was wondering if I could get some advice/hear experiences ..

He diagnosed with multiple myeloma in Feb 2025 after back surgery to remove a ‘mass’ from his T9. He has had 4 cycles of DVTD followed by a SCT. Today we had our first post-SCT appt with one of the haematologist. She said that he would be starting ‘maintenance’ in 8 weeks.

But, back during the DVTD phase at one the regular monthly haematology clinic appts the other haematologist said that after SCT he would have 2 further cycles (she used word ‘consolidation’) and then go onto ‘maintenance’.

So now we are all confused. We don’t know which doctor is right, which doctor to trust …

I would be grateful if I could hear experiences … from what I understand, given that consolidation/maintenance is a more recent treatment, for recent MM patients
1) if you had DVTD, did you also have 2 further cycles after SCT?
2) those who did not have 2 further cycles after SCT, were you given a reason?

Many thanks all,
Sam

[rabbitParticipant]

Hi Sam,

Welcome to the forum.

The normal sequence is:
– The 4 cycles that your husband has had.
– An SCT*
– 2 cycles of consolidation
– Maintenance.

(* Some people are too frail or have other health issues so don’t have the SCT).

Skipping the consolidation phase is unusual. If your husband has responded really well to treatment, they may be of the view that the consolidation phase is simply not needed.

One indicator of that would be if your husband has had a very sensitive test for myeloma cells called MRD. If he were ‘MRD negative’ that would mean that the number of remaining myeloma cells is so low as to be undetectable.

[samsonitaParticipant]

Hi rabbit

Thank you for the quick response!

Just now – reading some other posts on the forum tweaked the ‘ol brain cells. At our very first haematology appt in Feb 2025 (after back surgery) the haematologist (the one we saw today) said that his plasma cells were 6% which is below the threshold for offical MM diagnosis but because a scan found a 2nd smaller tumour at his S1 and because steriods that they had prescribed may have ‘dampened down’ plasma cell % (reading) they were erring on side of caution and stating diagnosis as MM not plasmacytoma. And she stated because majority plasmacytoma patients go on to develop MM, he will be treated as MM.

This made me wonder that she decided then not to have the ‘consolidation’ phase and just go straight onto ‘maintenance’ after SCT ..?

He also responded very well to the DVTD phase (light chain/protein levels) quite quickly.

[thejollynorthernerParticipant]

Hi Samsonita

I started with Daratumamab & Velcade in June 2022. 4 cycles later i was offered a SCT but refused it as I was already in remission plus the fact that only one lot of cells were able to be harvested in readiness for the SCT.
Several weeks later after a Haematology group meeting it was decided to start treatment again for two cycles, then my treatment stopped.
There was no guarantee the SCT would work or for how long if it did. My remission could have lasted 2 weeks or 5 years, nobody knew. In fact my remission lasted 2 years 2 months.
It returned in April 2025 my new treatment (Carfilzomib, Lenalidomide & Dexamethasone) began on May 21st this year.
After only 2 cycles I have again entered remission BUT this new treatment is ongoing. According to my consultant it will continue until at least April 2026, where it may then decrease but not stop.

The story continues ……😉

[Author]

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