[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 ……😉

[smithsterParticipant]

Interesting how people are advised differently. I’m pretty sure I too was in remission before SCT but was steered very strongly to have it because it would give me a much stronger, deeper remission. 16 months later, good numbers but too early to say!

[labladyParticipant]

@smithster similar to my partner he is being steered strongly to SCT even though his last bloods showed his myeloma cells were so small as to be unquantifiable, we have not been offered any alternatives to SCT but have a meeting today as he finished his 4th round of DVTD yesterday. So as you say story continues……..🤞

[sammy65Participant]

Hi Samsonita, it is an NHS treatment protocol to have 2 cycles of consolidation treatment after SCT, depending also on discretion of the treating doctor. I had it after my SCT in June 2022. I am on len maintenance. I would contact the specialist nurse to ask to explain, and if your husband is not convinced that he is receiving the correct treatment, ask for a 2nd opinion.

[lyshz03Participant]

Hi Samsonita,

My husband had a SCT after DVTD treatment & went on to have 2 further treatments (consolidation) & then went on to Lenalidomide 10mg unfortunately he had an adverse reaction really itchy skin & breakouts so after3 weeks & whilst he was on his week break the specialist agreed to stop it for 6 weeks to give him a break & now he’s fine, we’ve got an appointment next week to discuss restarting to see what happens, she may try him on 5mg but would rather do 10mg but he’s willing to try again as she’s advised that it should give him a longer remission. I wish your husband well on this long journey.

All the best
Lynn

[loubellaParticipant]

I am interested to hear from anyone else who declined the SCT after the 4 months DVTD induction treatment. My husband had an excellent response to the DVTD and is in remission. He is 67 years old, generally fit and healthy and very lucky that the Myeloma was diagnosed before any damage to bones or kidneys.
We feel that we have been steered quite forcefully towards the SCT even though our consultant is saying that in the near future the other treatments will make the SCT obsolete and no guarantee that the remission will necessarily be longer with the SCT than without. He is wondering if the risks of the treatment and long recovery period are actually worth it. We are not retired and run our own small business so the logistics of my husband possibly being unable to work for 3 or 4 months are going to be very difficult to plan for. Has anyone else any experience of what treatment is offered instead of the SCT. We possibly have the option of just going through the process up to the stem cell harvest, having the stem cells stored and then and then putting the process on hold.

[rabbitParticipant]

Hi Loubella,

I declined having the SCT. My reasons were:
– As you mention, ‘chemotherapy’ (including immunotherapy) is improving, making having an SCT less necessary.
– I have a dodgy heart (and an SCT would put strain on my heart).
– Like your husband, I responded very well to treatment.
– I didn’t want to go through the grueling SCT process. I had living to do. I can go into more detail on that if you like, but it was not about logistics.
My consultant and I discussed the issues, before agreeing NOT to have an SCT.

I went through the stem cell harvesting. My stem cells are ‘on ice’ ready for when I need them.

After that, I had two more cycles of chemo. At that point the ‘full’ chemo stopped and I started maintenance chemo. That was in June 2023, although I had really gone into effective remission before then. I am still in remission now.

Regards
Rabbit

• This reply was modified 1 week, 5 days ago by  rabbit.

[rabbitParticipant]

Hi Loubella,

These comments are just in from Dr Vincent Rajkumar (a high profile myeloma expert) following papers published at a International Myeloma Society meeting in the last week or so:
“The choice of frontline therapy is now based more on frailty assessment than transplant eligibility. Outcomes are excellent with quads with or without transplant”.

Regards
Rabbit

[loubellaParticipant]

Thank you so much Rabbit, that is very helpful, we have a meeting on Thursday to sign consent form for the stem cell collection. So my husband should expect to have 2 more months of the induction chemo after the stem cell collection, that is useful to know and helps with planning how we go forward.

[loubellaParticipant]

Another quick question for Rabbit please. Did you have the extra 2 months of induction chemo immediately after the stem cell collection process or did you have a gap/break with no treatment? (as you say, living to do and hoping to take a short, much needed holiday).
Secondly, is the maintenance treatment Lenalidomide and if so how do you get on with it, are you able to function normally in terms of wellness and energy levels?

Thanks again for your input

[rabbitParticipant]

Hi Loubella,

No, I didn’t have a gap after stem cell collection. It may be possible to fit in a holiday between collection and any transplant, though.

By the way, the 4 cycles that your husband has had is called the induction phase. The 2 cycles after stem cell collection and any transplant are called the consolidation phase.

“Secondly, is the maintenance treatment Lenalidomide and if so how do you get on with it, are you able to function normally in terms of wellness and energy levels?”

The maintenance that I have been on has been Lenalidomide and Daratumumab. The Daratumumab was probably given to me because I am ‘high risk’ – I have chromosomal abnormalities which mean that the myeloma is likely to come back sooner than for most patients.

How have I got on with Lenalidomide? For a long time, not too bad. Some people get skin rashes, but that wasn’t an issue for me. However, over some time I was increasingly low on energy and getting what I can best describe as semi-diarrhoea*. The side effects of Lenalidomide can be cumulative. Therefore, after 18 months the dose went down from 10mg to 5mg. My blood platelets were taking a hammering too.

(*I don’t mind talking about more personal side effects, but that is why I keep myself anonymous by calling myself ‘Rabbit’! I like some privacy).

That helped with the side effects in terms of day to day life, but 6 months after that (June 2025) my platelet count was too low for me to have Lenalidomide at all. Since then I have been solely on daratumumab.

You also asked about wellness and energy levels. I have had a few infections since maintenance started, but nothing too serious – certainly nothing that needed a GP appointment or hospital visit. I was often fatigued during the consolidation phase, but this gradually eased in remission month by month. I quickly got back to the gym and back into walking. These days I lift weights, cycle really hard and walk many kilometres a day (this was the case even before the Lenalidomide dose reduction).

Regards
Rabbit

• This reply was modified 1 week, 5 days ago by  rabbit.
• This reply was modified 1 week, 5 days ago by  rabbit.

[loubellaParticipant]

Thanks again for the additional information

[Author]

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