[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, 4 days ago by  rabbit.
• This reply was modified 1 week, 4 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

[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 Goffy,

Responses to myeloma treatments vary so much. This was my experience:

After 3 months of chemo, I had read about zoledronic acid (also known as Zometa) but it had not been prescribed. They had forgotten until I reminded them!

Zoledronic acid – not sure if you know this from your post – is a bone strengthening drug. Myeloma cells damage bones. However, standard advice is to see your dentist first.

A day or two after my first dose, my energy levels disappeared in an instant. I learnt that that was the side effect of it for me, lasting about 24 hours. After a couple of monthly cycles of this, I negotiated with my consultant to have Zometa only every 3 cycles.

After 2 years it was stopped: this is not unusual, depending on how the patient is getting on.

[rabbitParticipant]

Hi Rosary,

Starting locally, Myeloma UK runs events for patients and their families. Upcoming events are here:

Patient and family events

Upcoming ones are in Newcastle, Birmingham and Stirling.

The International Myeloma Foundation (despite being ‘international’ it seems to be pretty US-based) also has events, some of them patient oriented. For example, there is one in November in Chicago.
https://www.myeloma.org/news-events/multiple-myeloma-events

A couple of suggestions:
– I know that you say that you are happy to travel, but some events can be accessed online (live or recorded): easier, more convenient and cheaper.
– Being well informed is great, but there comes a point when doing so requires learning the jargon, instead of sticking to the patient-oriented events. It will make the networking better, and means that you can read medical research papers and form your own opinions on (for example) one treatment compared to another. I have been going through that learning curve, but I don’t pretend that it is complete. If you want to go down that route, I suggest searching for ‘myeloma’ on X. In terms of networking, you can easily then contact people online.

Regards
Rabbit

[rabbitParticipant]

Hi Goffy,

Welcome to the forum.

You ask “what’s the normal time to get into remission?”

In varies so much from one person to another, so I don’t think that there is a “normal”.

More importantly, your blood test results have overall been moving in the right direction, and the chemo side effects have pretty modest and managed.

Although there is a lot of focus on remission, it is not the be all and end all. I know of MM patients who never get to remission but who go on for decades.

Regards
Rabbit

[rabbitParticipant]

Hi mf1,

I should provide a bit more detail.

There are currently two bispecific antibody treatments which have been approved in the UK: Elranatamab and Teclistamab. They are similar in that they both target part of a myeloma cell called BCMA. Therefore the side effects are broadly similar.

A third bispecific antibody may be approved soon, called Talquetamab. This targets a completely different part of a myeloma cell called GPRC5D. The side effects are therefore pretty different.

Other bispecific antibody treatments are in development. You haven’t provided detail, so for all I know your husband may be going into a clinical trial for one of these.

[rabbitParticipant]

Hi mf1,
I don’t personally have experience of bispecific antibodies, but there have been many posts on patients’ experiences of Elranatamab (which is a bispecific antbody).

See: https://forum.myeloma.org.uk/forums/topic/elranatamab/

Regards
Rabbit

[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.

[rabbitParticipant]

Hi Anne,

Private medicine does allow patients the chance to get treatments earlier than the NHS would give them. However, I can’t say whether a private medical insurer would pay for it, and according to Chat GPT the private cost of bispecifics is often over £250,000!

There was a discussion on this forum about Elranatamab, which covers peoples’ experiences:

Elranatamab

Regards
Rabbit

• This reply was modified 1 month, 4 weeks ago by  rabbit.

[rabbitParticipant]

Hi Dennis,

My situation is similar in some ways, different in others.

I have been in remission since 2023 and have been on lenalidomide as maintenance. That was until a few months ago: my platelets have been too low to have it. I had a biopsy last week, currently waiting for results and discussing next steps.

According to the blood tests, I have been anaemic throughout remission. However, that has not stopped me exercising, so that is where we differ.

In terms of the rest of my immune system, my neutrophils are shockingly back in the normal zone for the first time in years as I have stopped taking lenalidomide for now, and the rest is on the low side but manageable.

Regards
Rabbit

[rabbitParticipant]

Hi dciphone,

It’s great that you are in full remission!

Your situation is nonstandard, so tends to need the personal touch rather than a standard algorithm.

This has been a recent topic in one of the other sections of this forum. See:

Travel insurance

Also, the Macmillan forum has a lot of posts on travel insurance for people wih cancer (not specific to myeloma). See:
https://community.macmillan.org.uk/cancer_experiences/travel-insurance-forum

Regards
Rabbit

• This reply was modified 2 months, 1 week ago by  rabbit.

[rabbitParticipant]

Hi nemoetomnis,

Looking after your partner could be challenging in its own right while they are at home.

Therefore, when – as you say yourself – it is simply impossible for you to help your partner for weeks, I suggest this: look after yourself!

Take some time, although I obviously don’t know what other commitments you may have (work, family etc) to look after your own health (rest, exercise, eating healthily). Maybe pamper yourself too! Your partner will be in excellent hands.

You deserve it,

Regards
Rabbit

[rabbitParticipant]

Hi tbd,

Much of what you mention is very consistent with the link in my post above.

The one thing which I am surprised about is turmeric: in large doses it can be problematic

https://www.nbcnews.com/health/health-news/liver-damage-turmeric-supplement-woman-hospitalized-rcna217578

[rabbitParticipant]

Hi darkside,

I didn’t personally have experience of cramp during chemo, but some patients do get it.

I suggest that you:
– Tell your healthcare team. They may prescribe or advise that you take electrolytes. In the meantime you could try a bottle of Lucozadw (which contains electrolytes) and see if that helps..
– Keep welk hydrated

Regards
Rabbit

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