[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 2 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 4 weeks 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

[rabbitParticipant]

Hi darkside,

Welcome to the forum.

Fatigue is a very common side effect of the chemo. As someone very active myself and only in my fifties, it was likewise very frustrating to be too fatigued during chemo to keep up much activity at all.

As someone who has been there (I am now in remission), all that I can advise is to do what you can – especially as exercise is good for people with myeloma in many different ways – but don’t beat yourself up if that isn’t much. Your body is having to deal with both myeloma and chemo, so try not to be too frustrated and give it time.

Once treatment finished and I was in remission, I gradually became more active. I cycle away flat out in the gym, lift weights* and walk many miles. It took a while but fitness can be regained.

*I am relatively lucky in not having bone lesions. I checked with a physiotherapist and doctor first before restarting with weights as bones in myeloma patients can fracture easily (so this is an area to be very cautious).

Regards
Rabbit

[rabbitParticipant]

Hi blobgob,

A good question. According to Chat GPT, the boost to neutrophils is only for a matter of some hours, but that’s not too bad in the context of a daily dose (there is also of course scope to nibble the stuff over the course of a day). The bigger the dose, the longer and greater the effect (within reason).

There is also a boost to ‘activation’ of neutrophils, but the highest possible cocoa percentage that you can handle is recommended to keep sugar consumption down.

Regards
Rabbit

[rabbitParticipant]

Hi Lablady,

I have been there. For a few months – I think it was around the time I was in consolidation – I wanted mostly rice pudding, yoghurt and ice cream. The ironic thing is that I had never liked ice cream until then.

Taste buds, appetite and nausea can really affect what someone with MM wants and can eat. Based on my own experience (although of course everyone is different), it should ease off over time.

Nowadays, my only food related issue can be keeping up with my appetite! Somehow maintenance chemo has increased my hunger, so I eat a huge amount (two lunches a day is routine) but my weight is stable.

Regards
Rabbit

[rabbitParticipant]

Morwenna, thanks for the feedback.

Regards
Rabbit

[rabbitParticipant]

Hi myelomamum,

You have mention that you would like info on food and supplements.

Firstly, are you taking bortezomib (which is also called Velcade)? If so, then I would advise a lot of caution about taking supplements. Some supplements, such as green tea extract and vitamin C tablets, interact very badly with it and can stop the bortezomib from working. However, you may be prescribed vitamin D tablets: they are fine.

You mention that you want to lose weight. Be careful what you wish for – an SCT can cause some loss of appetite or nausea. It will pass, though, of course, but you might lose weight from it.

For a while when I was going into remission, a dietician was advising me to stuff myself with biscuits to keep my weight up (and I didn’t even have an SCT), as I had been nauseous and had lost too much weight

In terms of healthy eating in the long term, here is some high level advice:
https://healthtree.org/myeloma/community/articles/what-to-eat-if-you-have-multiple-myeloma

However, don’t beat yourself up if your diet is not perfect. It took me around 18 months to slowly, bit by bit, move over to a healthier food lifestyle.

Regards
Rabbit

[rabbitParticipant]

Hi Newscan,

I had swollen feet. I didn’t have noticeably swollen legs, but that could be because they were huge in the first place!

My feet went up a shoe size.

I found that the diuretic did work, but it simply took time. I can’t guarantee that that will be the case for you. Perhaps you could use a tape measure around a specific part of your leg to track if it is starting to work, even if it is 1mm at a time?

Regards
Rabbit

[rabbitParticipant]

Hi paulcjw,

I haven’t heard of FDFR before, and neither has ChatGPT.

OK, assuming that your husband and I have the same cytogenetics, I hope that I can reassure you. I was diagnosed in 2022. I didn’t have a stem cell transplant, and went into remission in June 2023.

Now, in May 2025, I am still in remission and getting on with life. Currently on holiday in Greece!

I won’t pretend that it is easy. For example, yesterday the fatigue from my maintenance chemo was pretty bad, so I didn’t go far from the hotel, but overall the holiday has gone well.

Your husband’s age helps with the prognosis, and so would a healthy lifestyle (eating healthy, exercise etc).

Happy to discuss further.

Rabbit

[rabbitParticipant]

Hi paulcjw,

Welcome to the forum.

I can understand your worries. Please bear in mind that a lot of material online relating to myeloma is old: treatments have been improving, as indicated by the possibility of your husband having a trial – in other words new – treatment. Therefore the situation may not be as adverse as you have read.

As you have probably read, about 25% of patients have cytogenetic abnormailities: I am one of them. Could you please provide more detail on your husband’s cytogenetics, as there are many different kinds? For example, mine are t (4, 14) and +1q.

Regards
Rabbit

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