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

[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 3 months, 1 week ago by  rabbit.

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