[rabbitParticipant]

Hi Jared,

You have clearly been through so much, and I can understand you thinking whether it is worth having a 5th line of treatment.

There are many immunotherapy treatments: bispecific antibodies such as elranatamab, teclistamab and talquetamab, the ADC treatment of belantamab and many others (not all approved in the UK such as CAR-T). For example, I am on Daratumumab, which is immunotherapy (though as a monotherapy, only really for patients in remission).

Therefore there is no one answer to side effects and sheer logistics (for example CAR-T is a ‘once and done’ treatment), even if everyone responded the same way to the same thing.

Do you know what your next treatment may be?

I won’t tell you blithely to carry on no matter what, this is a tough path that us patients go through. However, you may want to think calmly about the many options out there and the impact on those around you if you give up.

All the best, Jared.

Regards
Rabbit

[rabbitParticipant]

Hi Jackie and welcome to the forum.

A quick introduction: I was diagnosed with myeloma in 2022, had treatment and have been in remission since 2023. I am NOT a medical professional.

As your Googling indicated, I think that you have myeloma.

Your kappa light chains are sky high (suggesting specifically kappa light chain myeloma – the same as me) and your liver function test results are consistent with bone lesions. Your rib fracture is also consistent with that.

I had even higher kappa light chains (a few thousand!). I don’t remember anything about liver function, but I did have hypercalcaemia (the myeloma leaches calcium from bones into the blood).

The next step would, I anticipate, be likely to be a biopsy. A sample, typically from the hip bone, would be taken for analysis. Also there could be a scan.

You asked about treatment. If myeloma is confirmed, typical treatment is often:
– Daratumumab
– Velcade (also known as Bortezomib)
– Thalidomide
– Dexamethasone.
However, many new types of chemotherapy have been developed and approved in the last few years, so you may get a variation of this.

However, the more important message is this: even though this is a huge shock, and right now it probably doesn’t help that you are in limbo until the diagnosis is probably confirmed, you can get through this!

People live long, long lives with myeloma these days. The treatments can be highly effective (and if one doesn’t work so well then another is likely to work much better).

Since going into remission, I have been working, going on holidays, exercising and generally enjoying life.

You are not alone!

Please feel free to post messages here if you have anything that you want to know.

Regards
Rabbit

[rabbitParticipant]

Hi Goffy,

I don’t have personal experience of this as a patient but my reading up says that this is doable. However, it may not be necessary, at least for a while.

Some background (a bit simplified, partly because I am merely a simple patient 😀). Immunotherapy works by attaching to something which is generally part of a myeloma cell but generally not part of a healthy cell. It then gets the immune system to attack and destroy the attached cell.

There are 3 parts of the myeloma cell that many different treatments currently use.
CD38: Daratumumab and Isatuximab
BCMA: Belantamab, Elranatamab, Teclistamab
GPRC5D: Talquetamab.

If you have been using an immunotherapy such as Daratumumab, the myeloma cells can ‘evolve’ into having less or none of that part (in this case, CD38). That would make Dara and Isatuximab less effective or ineffective.

However, after some time on a different type of immunotherapy (such as Belantamab) the previous myeloma cell part can sometimes return, making the treatment effective again.

However, as you can see, there are plenty of alternatives, since there are a number of treatments that aren’t even immunotherapy.

Sorry for the long and complicated answer.

Regards
Rabbit

• This reply was modified 2 weeks, 4 days ago by  rabbit.

[rabbitParticipant]

Hi Morwenna,

That was similar to my experience. I was on 10mg, but after 2 years the diarrhoea and fatigue got too much. I have heard that the side effects with lenalidomide sometimes get worse over time.

Anyway, the consultant agreed to reduce the dose to 5mg on the grounds of quality of life. Doing that worked for me.

A few months later he stopped it altogether, as it was reducing my platelet count (which has never been high in the first place). The diarrhoea was better with the reduced dose but improved further on dropping lenalidomide completely.

That was some months ago, but I am still in remission. Don’t panic 😀).

[rabbitParticipant]

Hi Kev and welcome to the forum.

You have had such a hard time: not only a diagnosis of MM, and long round trips, but a stem cell collection that failed too!

You ask a few specific questions:

1. How often does stem cell extraction fail in this way?

Definitions of failure vary a bit. I found a clinical paper from Taiwan that mentions 7.7%.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9912005/

2. Could this have been affected by my type 2 Diabetes (controlled with Metformin, by messed by by the Dexamethasone in my chemo)

In a word, no. Metformin (according to my reading up) does not affect stem cells. Dexamethazone is routinely given to MM patients so doesn’t affect stem cell harvesting.

3. Could the Zolendronic infusions I’ve been having have affected the extraction.

Again Zoledronic acid (brand name Zometa) is routinely given to MM patients as it doesn’t affect stem cells.

What did the consultant say about next steps?

Personally, I went through stem cell harvesting but have not had a transplant as I have a dodgy heart. I have been in remission since 2023, so please don’t give up hope!

Regards
Rabbit

[rabbitParticipant]

Hi Lynn16, welcome to the forum.

It is definitely a mental challenge, from the initial diagnosis to – as you say – the side effects and new normal life.

You are getting well through the treatment. Perhaps focussing ‘on the light at the end of the tunnel’ – the prospect of going into remission – would help?

On exercise, I have been there. I lost a huge amount of weight during treatment, much of it muscle. I got back into the gym when treatment finished: it took so much willpower to rebuild my strength, but I got there!

I agree with Rosary about friends. They probably don’t know what to say. At least they are still contacting you: I had ‘friends’ who didn’t want anything to do with me as soon as they heard of my diagnosis 🙃. It can be a time when you find out who your friends really are.

All the best

Rabbit

[rabbitParticipant]

Hi Loubella,

You say that it “… does feel as if he has been pushed down the route of SCT without alternatives being fully explained.”

Not everyone has an SCT. I didn’t, as I have a dodgy heart.

Also, my consultant told me that although remission tends to be longer with an SCT than without, the overall prognosis (to be blunt, life expectancy) is similar. You could mention the DETERMINATION clinical study to your consultant.

[rabbitParticipant]

Hi sj2909,
Although I have no experience of any of the bispecifics that you mention, I have been reading up whilst in remission. Simply planning ahead.

Anyway, I came across this study stating that Elranatamab is significantly more effective than Teclistamab.

https://pubmed.ncbi.nlm.nih.gov/38347747/

Regards
Rabbit

[rabbitParticipant]

Hi David,

Top priority: please contact your doctor or healthcare team.

On this forum, we are not generally medically qualified. In particular, a blood pressure of 170/90 sounds sky high.

I have experience of zoledronic acid, also known as Zometa. For me, it caused flu like symptoms (not unusual) and temporary utter exhaustion (less common but not unknown).

What follows is from reading up, not personal experience…

The pain just above your pelvis could be coming from your kidneys. Myeloma can harm kidney function. Blood tests could indicate whether this is the cause.

You could be low on electrolytes: that would be consistent with being prescribed calcium tablets (calcium is an electrolyte).

All this is guesswork, though.

Regards
Rabbit

[rabbitParticipant]

Hi Boisvert and welcome to the forum.

Also, thank you Pedro16 for the intro 😀.

I don’t have experience of Belantamab yet. However, I have been in remission for longer than expected and am well aware that all good things must come to an end 😀. Belantamab, Bortezomib and Velcade may well be my next treatment when remission ends.

However, I do have experience of Bortezomib (= Velcade). It caused me some constipation and fatigue, but I recovered from both when treatment ended. If I say that it was manageable, that is a relative thing, but I was able to keep up working from home.

A word of warning about Bortezomib. It works using an oxidative pathway. In plainer English, food and drink full of antioxidants can stop Bortezomib from working.

Previously on this forum, I have advised against vitamin C supplements and green tea. Both in particular have lots of aantioxidants.

Having read further, my revised suggestion is both more specific and more general (yes I know that sounds contradictory 😀).

– It is best to have food and drink which contains a lot of antioxidants away from when you are having Bortezomib injections. Bortezomib anticancer action is over a couple of days at most, so when it has done its job for that cycle, antioxidants are OK.
– Food and drink containing lots of antioxidants also include fruit juice.

For more info (and where I got this from) please see this US-based myeloma forum:

https://www.smartpatients.com/conversations/contraindications-with-velcade

Regards
Rabbit

[rabbitParticipant]

Hi Goffy,

A reduction in your light chain (lambda or kappa?) from 1600 to 85 after just one cycle is really good! It looks as though BVD is working well for you.

All the best.

Regards
Rabbit

[rabbitParticipant]

Hi Pedro16,

I am not on Belantamab yet. However, when remission ends, it could be my next treatment, so I have been reading up on it.

You mention in another post that your platelets are at 11! Although protocols vary, there seems to be unanimity that a platelet count below 25 means that Belantamab treatment has to stop for a while.

Please take it easy and try to prevent any bleeding. If you are having turkey at Christmas, maybe hand the carving knife over to someone else!

All the best.

Rabbit

[rabbitParticipant]

Hi Pedro16,

Thank you. I do post a lot on this forum, it is true!

I read a lot about myeloma, as a layperson but one with a lot of skin in the game and as someone with a background in science (not medicine). As a patient, I focus on treatments and anything else which can help (or hinder), rather than looking backwards into causes of myeloma.

There have always been a lot of con artists and scammers, especially when it comes to cancer treatments. Nowadays, there is also lots of online fake news.

In short, everything that I mention comes from:
– Clinical papers, presentations etc
– My own experience (always recognising that others may have different experiences)
– Advice from my consultant which may
help others. He is a leading expert, and not all us patients have access to that level of expertise.
– Occasionally info, advice etc from other forums. I try to include links to these.

In this case, you are posting on a discussion about neutrophils and dark
chocolate, and I put a link above to the source medical paper.

Regards
Rabbit

[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.

[Author]

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