[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 3 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

[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 5 months 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 5 months, 2 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

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