[rabbitParticipant]

I’m glad for you that the news is (relatively) good!

All the best.

Regards
Rabbit

[rabbitParticipant]

Hi,

Being a geek, I read and watch a lot of material on myeloma. This is a video on Belantamab which I thought might be of interest.
https://multiplemyelomahub.com/medical-information/the-patient-experience-treatment-with-bcma-directed-therapies-in-relapsed-mm

Regards
Rabbit

[rabbitParticipant]

I well understand the urge to make the most of life!

The villa plan sounds good. I can be more specific given that info:
– Infection risk from people: Covid in 2020/21 showed that infection risk during flights is low. Air filtration is a key part of that. There is risk from queuing up at check in, at the gates etc, though.
– Infection risk from food: you and your husband have probably been briefed heavily on this, but just in case: caution (at best) is recommended eating out with much raw food, such as salad and sushi. My dietitian warned me on a few other things (such as raw meat and unpasteurised dairy) but most people don’t come across those much anyway.

Regards
Rabbit

[rabbitParticipant]

Hi and thanks for the update. I am delighted that your husband is MRD negative.

An update for an update: despite being high risk, according to my blood test yesterday I am still in remission (my MRD status has never been tested – maybe it’s expensive to do). Still going on holidays and enjoying life.

I hate to sound a note of caution on holiday plans, but how strong is your husband’s immune system yet?

Two risks:
– Infection from other people. I have been told that neutrophils levels being low – especially below 1.0 – mean that the patient should keep away from crowds (though face masks can help).
– Infection from food. I have come home from holidays a couple of times with stomach bugs. Hygiene standards are critical here. My worst experience was Morocco.

All the best to you and your husband.

Regards
Rabbit

[rabbitParticipant]

Hi icsdam,

That sounds like a difficult choice.

Just trying to explore all the options: what about elranatamab, teclistamab or talquetamab? Isatuximab/Lenalidomide/Bortezomib/Dexamethazone (it’s a first line treatment now, so second line should be possible)?

Regards
Rabbit

[rabbitParticipant]

It is the easiest thing in the world for me to say “don’t panic” but even in the worst case scenario of advanced, high risk myeloma (my diagnosis in 2022 – I am still in remission) there are an ever increasing number of highly effective treatments.
All that I can say is:
– Please keep us informed. People on this forum have a lot of information and experience.
– All the best!

[rabbitParticipant]

Hi Katiep59 and welcome to the forum.

The fact that you have joined a myeloma forum to ask suggests that you suspect that you have myeloma or something related to it.

I must emphasise that (to the best of my knowledge) everyone on this forum is either a patient or a loved one of a patient, not anyone with a medical background.

I fed the data that you gave into Chat-GPT. Its response is:

“What this can be associated with

Abnormal serum free light chains are commonly linked to conditions involving plasma cells, such as:
Monoclonal gammopathy of undetermined significance (a relatively common, often stable condition)
Multiple myeloma
Light chain amyloidosis
Other plasma cell or lymphoproliferative disorders

That said, this result alone does not diagnose any of these. It just raises a strong suspicion that needs proper follow-up.

How concerning is this?

A ratio as high as 9.5 is well outside the normal range, which makes this more than a minor fluctuation. It’s something doctors take seriously and typically investigate further.
However, the outcome varies widely:
Some people are found to have MGUS, which may just be monitored
Others may need more detailed evaluation to rule out more serious conditions

What usually happens next

A doctor (often a hematologist) will likely order additional tests, such as:
Serum protein electrophoresis (SPEP)
Immunofixation
Full blood count
Kidney function tests
Calcium levels
Possibly imaging or bone marrow tests (depending on context)”

• This reply was modified 1 week, 2 days ago by  rabbit.

[rabbitParticipant]

Hi Jackie,

There have been a number of post about Isatuximab. If you log in, you have a search option. Just type in “Isatuximab”.

Regards
Rabbit

[rabbitParticipant]

Hi psg32 and welcome to the forum.

You said that you are possibly having a stem cell transplant. I didn’t have one.

You asked a couple of questions: “is it prudent to isolate throughout the chemotherapy or can I try to do something I normally would if I’m up to it ?”
Isolating for the whole period of treatment is a lot. You will be getting blood tests which will indicate (among other things) the state of your immune system. The advice that I got was to basically isolate when my neutrophils were below 1.0. It is less necessary when your neutrophils are relatively high.
When/if you have a stem cell transplant, your immune system will be at its weakest. It will take some time to recover. Also, past vaccinations will be irrelevant and you will need to be revaccinated (as hinted at above, I don’t know much on the vaccination specifics).

“Also how quickly approximately after the chemotherapy were people able to go on a holiday abroad?”
As I didn’t have a transplant, I was able to travel straight away. However, I waited a month because:
– There isn’t just immunity to consider. The most common single chemo side effect is fatigue. For me, the fatigue gradually reduced over some months.
– Psychologically, I had to get myself around the concept of “travelling with cancer”.
I therefore kept to the UK for the first couple of trips, so that I could join (first) a family celebration and (then) travel around Scotland (I live near London). That gave me peace of mind in terms of ongoing access to the NHS.
My next trip a couple of weeks later – I had been waiting to travel throughout chemo! – was then a foreign trip.
Since then, in 2023, I have done a lot of travelling and am actually on holiday right now!

Regards
Rabbit

[rabbitParticipant]

Hi and welcome to the forum.

As you say yourself, Isa-VRd is relatively new, so not many people have had it yet.

I had DVRd in 2023, with D = Daratumumab, which is similar to Isatuximab (both are immunotherapy targetting the CD38 antigen in myeloma cells). I am still in remission.

What side effects are you experiencing?

Regards
Rabbit

[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 1 month, 4 weeks 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

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