[rabbitParticipant]

Hi ritzygirl.

You are doing really well, especially in terms of energy and exercise – 10 to 14 miles of walking is a lot!

You asked about the benefits and side effects of Lenalidomide.

You are right that people can live for some years without lenalidomide – in fact staying in remission for some years, followed by other treatments.

However, lenalidomide would change the probabilities in your favour. After all, that’s why it’s being offered to you! You could ask your consultant for the median times in remission for patients with and without lenalidomide, to quantify it.

Now on the side effects. These vary a lot. You have had thalidomide, and lenalidomide is similar. All that I can say is that you can try it. If you do get side effects that are too unpleasant to continue with, reducing the dose or stopping it are always options. Then you are no worse off.

My own experience was that I went on lenalidomide on going into remission. Meanwhile (as you emphasise exercise), I got back in the gym and rebuilt my strength and cardio fitness. My immunity wasn’t so bad because I haven’t had an SCT. I stayed on Lenalidomide for about 18 months, but I was developing diarrhoea and fatigue (for some people the side effects gets worse over time), and my platelet count went too low. The lenalidomide dose was therefore reduced for a few months. I felt much better but my platelets weren’t responding well, so it was stopped altogether. Still going strong without (still in remission, still weight training, cycling like a lunatic in the gym, and walking a lot)

Just my views and experiences, but I
hope that this helps.

Regards
Rabbit

[rabbitParticipant]

Hi Bonzo.

Sorry that no one has replied to you until now.

Although myeloma chemotherapy can affect the feet, MGUS is not known to cause itchy feet. Neither is myeloma.

[rabbitParticipant]

Hi Pedro, welcome to the forum.

You have had a tough time over the last 3+ years. Going through one stem cell transplant is a lot, let alone two of them.

All the best with belantamab. I have read up on it (it may well be my next treatment when remission ends). It looks pretty effective, and you are sounding very positive!

[rabbitParticipant]

Hi c,

A new treatment has been approved by NICE in the UK today.

It is called Talquetamab. It is a bispecific antibody treatment, like Elranatamab. However, it is also different: it targets a different bit of a myeloma cell, called GPRC5D. Elranatamab targets the BCMA bit of a myeloma cell. Therefore it may well work better than Elranatamab.

[rabbitParticipant]

Hi c,

Welcome to the forum.

I wish that I could give some comfort. I assume that the option of a clinical trial for your loved one has been investigated.

Myeloma UK has a clinical trial finder:

Homepage

Also, belantamab malofodin has only been approved as a treatment in the UK in the last few months. Your loved one may have had it as part of a clinical trial already, and the approval is for it in combination with other medicines that may not work any more for your loved one.

I hate the idea of giving you false hope, but nor can I keep silent if there is even a tiny chance.

Regards
Rabbit

[rabbitParticipant]

Hi ipg. Welcome to the forum.

I can suggest two alternative ways of improving on the diarrhoea front.

1. I gradually umproved my diet, to boost my health and prognoais. Moved towards emphasising whole foods: beans, nuts, cereals/bread, fruit and veg, some (but not a lot of) dairy and eggs. Very little junk, lots of fibre.

That improved my diarrhoea. If you are wondering why I am not mentioning meat, that’s because I have been vegetarian for decades.

2. The effects of lenalidomide can accumulate over time. About 18 months into remission, diarrhoea returned and fatigue got worse. In response, my doctor cut the dose from 5mg to 2.5mg. That dealt with it again.

Regards
Rabbit

[rabbitParticipant]

Hi Les,

An itchy skin – including/especially an itchy scalp – is sometimes a Lenalidomide side effect.

It is not something that I experienced, but if you go to the Home page of this forum and search for “Itch”, it has been mentioned a few times.

In terms of what seems to have been effective for any itchy scalp, I have had a look to save time and effort:
– Pam said “Now taking antihistamines which have helped.”
– Shropshiremum said “I take loratadine [an antihisamine], and it definitely helps”
– Lilib said “I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names)”. You could ask you doctor or nurse?
. Maidmarion said “I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens”.

I hope that this is some help.

Regards
Rabbit 

[rabbitParticipant]

Hi and welcome to the forum.

I would suggest that it would be a good move, and that you are being very thoughtful for thinking of this.

In particular, if and when he has a stem cell transplant (as not everybody has one), he will come back from hospital highly vulnerable to infection. You reducing the risk of passing on Covid to him at a time when his own vaccine protection has gone could make a big difference.

Regards
Rabbit

[rabbitParticipant]

Hi, welcome to the forum.

I haven’t had IVIG myself. There is a US-based myeloma forum where there have been a lot of posts about IVIG. I suggest that you have a look at:

https://www.smartpatients.com/search?q=Ivig

and ask any questions that you may have.

Regards
Rabbit

• This reply was modified 1 month, 3 weeks ago by  rabbit.

[rabbitParticipant]

Hi Les, welcome to the forum.

It is one hell of a shock to get a myeloma diagnosis. Many of us on this forum have been there – the rest are the loved ones of people with myeloma. In short, we have all been there in getting told something traumatic.

It sounds as though you were handed some booklets, were told you had cancer, and then the doctor walked off. Understandable for overstretched staff, but not a great bedside manner.

I was diagnosed at the end of 2022. Had chemo over the first half of 2023. Still in remission. Going on holidays, working, spending time with family. Going to a rock concert in a few days!

I was traumatised too for a few months, then I snapped out of it. Life is for living!

I won’t pretend that it is easy, whether in terms of treatment (most people get some side effects on the way), or psychologically (I still get low at times), but people can live with myeloma for a long, long time.

Happy to explain jargon, planned treatment, your blood test results, etc.

Regards
Rabbit

• This reply was modified 1 month, 3 weeks ago by  rabbit.
• This reply was modified 1 month, 3 weeks ago by  rabbit.

[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 2 months, 2 weeks ago by  rabbit.
• This reply was modified 2 months, 2 weeks 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 2 months, 2 weeks 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

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