[rabbitParticipant]

Hi Twinz,

This sounds a lot like bile acid malabsorption (although I am no doctor). It sometimes occurs when someone has been on lenalidomide for a couple of years.

It would, for example, be consistent with the urgency when you go to the toilet and with the stomach cramps.

Quoting Google Gemini, “Bile acid sequestrants (such as Colesevelam / Welchol or Colestyramine) are remarkably effective:

​- Clinical studies show that over 80–85% of patients experiencing lenalidomide-associated BAM see dramatic improvement or complete resolution of symptoms within 1 to 2 weeks of starting a bile acid binder.
– ​Crucially, treating the BAM with a binder means patients usually do not have to reduce their dose or stop taking lenalidomide, allowing them to maintain their oncology treatment safely.

Timing is crucial when adding bile acid sequestrants (binders) to your regimen. Because these medications act like “chemical sponges” in your digestive tract, they can trap other oral medications and prevent your body from absorbing them properly.”

Regards
Rabbit

[rabbitParticipant]

Hi Sophiesgran. That’s interesting: both academically and because I also started on Dara in January 2023!

I hadn’t heard of mylodisplasia. I asked AI (specifically Google Gemini):

“Long-term exposure to daratumumab itself is not typically considered a direct cause of myelodysplastic syndrome (MDS). However, the broader picture involves several important nuances:
​Combination Therapies: Daratumumab is almost always given alongside other myeloma medications, such as lenalidomide, alkylating agents (like melphalan or cyclophosphamide), or autologous stem cell transplantation (ASCT). Certain traditional chemotherapy agents and immunomodulatory drugs (especially lenalidomide, particularly after alkylators or stem cell transplants) carry a well-documented risk of secondary primary malignancies, including MDS.

​Underlying Disease and Prior Treatments: Multiple myeloma itself, along with the bone marrow environment in myeloma patients who have received multiple prior lines of therapy, carries a baseline risk for developing marrow disorders such as MDS.

​Clinical Trial Observations: In clinical trials where daratumumab is added to backbone regimens (e.g., Daratumumab + Lenalidomide + Dexamethasone), cases of MDS or secondary cancers are tracked. While MDS is occasionally reported in these trial populations, research indicates this risk is primarily driven by exposure to lenalidomide, alkylating agents, or prior radiation/chemotherapy rather than daratumumab’s specific mechanism of action (which is a targeted CD38 monoclonal antibody).

​Long-Term Safety Monitoring: Daratumumab can cause prolonged cytopenias (low blood counts, such as neutropenia or thrombocytopenia), which can mimic some signs of bone marrow stress. Your care team routinely monitors full blood counts and will investigate with a bone marrow biopsy if persistent unexplained drops in blood counts occur.

​If you or your oncology team are concerned about persistent low blood counts or changes in your bone marrow function, discussing a formal bone marrow evaluation is the standard next step.”

[rabbitParticipant]

Hi Najmah.

It was a relief to be in remission for the first few months, especially as it meant that my fatigue eased gradually.
(However, I am high risk so I didn’t expect remission to last anywhere near as long as it has).

That meant the Bortezomib/Velcade stopped, but the rest of the DVRd has kept on going in maintenance (although the Revlimid/Lenalidomide was stopped 2 years later due to increasing side effects).

My reading up suggests that your Isa-VRd is similar, that the Velcade would stop on your remission, with the rest continuing as maintenance. Is that right?

Regards
Rabbit

[rabbitParticipant]

Hi najmah. My treatment started in January 2023. I was told in June 2023 that I was in ‘effective remission’. However:
– Unlike most people, I didn’t have a stem cell transplant.
– My haematologist said that I responded unusually well to treatment. Looking at my past blood test results, I suspect that I was actually in remission a month or two before, but nobody told me!

Regards
Rabbit

[rabbitParticipant]

I am pretty lucky in not having bone lesions. I started resistance training over 20 years ago, and that meant that I built up a lot of bone as well as muscle.

I was also a runner (5k to 10k was pretty routine) and cycled regularly in the gym.

When I was being diagnosed and had my first bone marrow biopsy, the doctor commented “you have strong bones”, but as I had not even heard of the word myeloma at that point, I didn’t realise the significance.

During treatment, I was too fatigued to exercise beyond struggling to walk a little. By the time I got into remission, I had lost a huge amount of weight and a lot of it was muscle.

I restarted proper exercise as soon as remission started, but I was so weak! Rebuilding my strength and stamina took so much willpower, but week by week I made progress.

Nowadays I lift weights* and cycle as much as before my diagnosis. For example, the cycling these days is typically an hour flat out, while reading (generally health magazines to ‘brainwash’ myself into keeping going 😀) and listening to music.

* I had the explicit approval of a specialist physiotherapist before I progressed back to the heavy weights.

Meanwhile, on non-gym days I aim to walk at least 10km.

Coincidentally, I ran around the town centre today. It’s only a small town, but it’s progress!

Regards
Rabbit

[rabbitParticipant]

I read it just a couple of days ago!

It was a bit of a shocker coming across a mention of myeloma (which I have) while reading during a cycling workout in the gym. I did have to put it away for a few minutes while mentally getting myself together again.

I used to be a runner – trying to will myself into getting back to it again. I am not really succeeding!

Regards
Rabbit

[rabbitParticipant]

I developed dry skin towards the end of treatment. I used cocoa butter, but I’m not sure that it helped much. Anyway, it cleared up within a couple of weeks of remission and maintenance starting.

[rabbitParticipant]

Hi Phil,

I don’t have experience of Seliexor, but there is a US based forum called SmartPatients. A few people there are on it. I suggest that you go to:

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

I hope that that helps, especially if you can get suggestions that might ease the side effects.

All the best.

Rabbit

[rabbitParticipant]

Hi Leelynn and welcome to the forum.

I can do a hopeful story or two about high risk chromosomal abnormalities. 😀

I have an abnormality called +1q, which is a bit similar to del 1p in that they both affect chromosome 1. I also have the t(4, 14) abnormality.

Having 2 abnormalities is worse than 1.

Hopeful story 1. I was diagnosed in 2022. I am still in remission. My consultant talks about it being “functional normal risk”. In other words, my body is sort of ignoring the chromosomal abnormalities. My prognosis has therefore significantly improved.

Hopeful story 2. New treatments such as Elranatamab, Teclistamab, Talquetamab and Belantamab have all been approved in the UK and work pretty well for high risk patients such as your partner (and me). Further treatments such as trispecifics, in vivo CAR-T and CELMoDS are being trialed at the moment. If you are reading stuff onlne, you may be seeing out of date data on life expectancies etc. Things are improving rapidly.

Regards
Rabbit

[rabbitParticipant]

Hi David,

One extra thing to mention and then I will shut up 😀.

I don’t know if this will provide you with any reassurance…

I have done a lot of reading up on treatments and clinical trials of them. Although I am currently in remission, I have pondered my thoughts about my next line of treatment: I am currently hoping to persuade my consultant when the time comes to give me a bispecific antibody treatment.

Regards
Rabbit

[rabbitParticipant]

Hi David,

As an ex-scientist, it is relatively easy for me to find data (I generally know where to look) but I also know that that isn’t always the point.

Two issues come to mind in terms of bispecific side effect data and its relevance:
– As you said yourself, there are 3 bispecifics. Although I have stated above why I think that the relevant one for you is Talquetamab, your consultant may think differently.
– The clinical trials were done a few years ago. Since then, things have moved on for the better, so the data on side effects is more adverse than what you would face. The “step up” that is now being done was developed to reduce the probability and severity of cytokine release syndrome (CRS), for example. Tocilizumab, a drug that blocks inflammatory signaling and can rapidly control CRS symptoms, is now routinely given. Also it happened that some trials were done when Covid 19 was at its worst, so there were a lot of severe infections: hopefully you are vaccinated, and Covid has subsequently become much milder anyway.

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

[rabbitParticipant]

Hi David,

My sympathies: you have been through a lot of treatment and now face more.

I have not had bispecifics but I am geeky enough to read a lot 😀.

Belantamab gets the immune system to attack the BCMA antigen. Since that has stopped working, that probably means that your myeloma cells have adapted their BCMAs (similar to bacteria getting resistant to an antibiotic). That would make the bispecifics teclistamab and elranatamab less effective.

The other approved bispecific is talquetamab, which targets the GPRC5D antigen instead. It’s my best guess that that is what your consultant is thinking about.

The regime for bispecifics is that you would be given a few “step up” doses over a couple of weeks to see how you get on and to let your immune system respond steadily. Then you would get regular doses, typically weekly for some months then less frequently.

Side effects: Warning you may not want to read the rest of this!
Unfortunately, people also have GPRC5D antigen in cells on the tongue, skin and nails, so a metallic taste and skin rashes are common, (as well as changes to nails such as brittleness).
Then there is a lot of infection risk.
There is cytokine release syndrome, where you body attacks myeloma cells too enthusiastically and your body struggles to cope (that’s why the step up is important – the attack is more gentle on your body).
Then there is neurological toxicity. Less common but can include confusion and brain fog.
Blood counts can become low, although transfusions can help with that.

Regards
Rabbit

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

[rabbitParticipant]

Hi Chellem and welcome to the forum.

I am curious: going on to maintenance after 4 cycles is unusually soon. Around 6 months of treatment is more typical (with or without a stem cell transplant about 4 cycles in). Is there any reason? It could mean that you have responded exceptionally well to treatment!

Anyway, I was on dara and lenalidomide maintenance for over 2 years. The side effects of lenalidomide weren’t too bad for a long time, but I had to reduce the dose (semi-diarrhoea, fatigue and low platelets) and then come off it (low platelets). I am still on dara.

I am still in remission: 3 years now!

Regards
Rabbit

[rabbitParticipant]

Hi Najmah,

You mention a few different things.

– Yes, Zometa is a routine infusion that people usually get.

– The advice that I got from my nurse was that it often causes “flu like symptoms”. Fatigue is consistent with that, and it caused me fatigue. Nausea is not a Zometa side effect that I am familiar with, though.

– I just read up on Adcal using Chat-GPT. It contains both Calcium and vitamin D3. Chat-GPT then went out of its way to say not to take it within 4 hours of a bisphosphonate (such as Zometa). I am just passing the message on.

– Yes, Bortezomib can cause constipation. You are doing pretty much all the right things. The only extra thing that I can suggest is – if you are able to – is to exercise. For me, constipation came and went a bit.

– Another thing to mention. If you are taking vitamin C supplements or green tea extracts, don’t take them close to (within a day of) Bortezomib, as they can stop it from working.

I hope that this is some help.

Regards
Rabbit

[rabbitParticipant]

Hi steviej73 and welcome to the forum.

You have clearly been through a lot, and have to go through more.

What treatment are you going to have?

Regards
Rabbit

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