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
Hi tiger108,
My goodness you have been through hell!
All the best for you.
Regards
Rabbit
In the context of multiple myeloma, IgD refers to immunoglobulin D, one of the five main classes of antibodies produced by plasma cells (the others are IgG, IgA, IgM, and IgE).
IgD myeloma is a relatively rare subtype of multiple myeloma, accounting for about 1–2% of cases. In this form, the malignant plasma cells produce excessive amounts of IgD antibody.
Regards
Rabbit
Hi Sammy65,
I would agree to disagree with you on CAR-T: I would describe it as personalised immunotherapy.
I agree with you that CAR-T has the big advantage of being ‘once and done’ with implications for everything from the side effects being shorter term to easier logistics (fewer hospital trips).
I have been looking at papers from the latest ASCO (cancer conference) in Chicago. Phase 1 results of in vivo CAR-T treatment KLN-1010 are looking promising: 18 patients all MRD negative (no myeloma cells detected although – before readers of this get too excited – some are probably lurking) so far and side effects have not been too bad.
Regards
Rabbit
Hi Sammy,
I was about to reply to your previous email when it disappeared! I was puzzled – there is so much spam on this forum, and then the moderators delete a genuine post? 😀
This is a slight change of topic, but still relevant to this forum. You said “As well as its strong clinical place, I tried to buy time for a possibility of a CAR-T which is still not available in the UK on NHS today. I am aware that clinical recommendations are that a patient should have a CAR-T first and then bi-specifics in the further relapse and not the other way round.”
I will explain first in a bit more detail, as us patients and carers should I think learn this stuff (I am simplifying a bit below).
Many of the newer treatments are immunotherapy: they enhance the body’s normal immune system so that it attacks myeloma cells. As myeloma cells are basically mutated forms oh healthy cells, the immunotherapy gets the immune system to attack bits (antigens) of myeloma cells that are not in the healthy cells.
Three of these differences have the catchy names of CD38, BCMA and GPRC5D. For example, Daratumumab and Isatuximab target CD38.
Many of the new treatments, including the CAR-T ones and the bispecific antibody treatments Elranatamab and Teclistamab target BCMA.
The issue is that myeloma cells can develop ‘resistance’ to a treatment: one reason why it generally comes back. With a treatment that targets an antigen, the myeloma may adapt over time by having less of that antigen.
Therefore, if you have a treatment like Elranatamab or Teclistamab that targets BCMA, it can make other treatments targeting BCMA less effective.
Background over!
Sammy65, you are right that no CAR-T treatment is approved in the UK yet. However, if you have a BCMA-targeting bispecific, the myeloma do seem to reverse their adaptation after some time. Also, the MajesTEC-3 and MajesTEC-9 clinical trials are showing that Teclistamab – with (MajesTEC-3) or without (MajesTEC-9) Daratumumab – is a very effective treatment (though with some unpleasant side effects). Maybe CAR-T simply isn’t such an important option anyway.
Meanwhile, Talquetamab is an approved bispecific treatment which targets GPRC5D, so is unaffected by being refractory to BCMA.
Then there are the treatments that are not immunotherapy…
Regards
Rabbit
Hi Peter,
The sequence of my treatment went:
– ‘Induction phase’. 4 cycles (a cycle is 4 weeks) of Daratumumab weekly, Revlimid = Lenalidomide daily, Velcade = Bortezomib weekly and Dexamethazone (‘Dex’) twice a week. Thalidomide is similar to Lenalidomide, with a week off for each cycle.
– Break in treatment, then stem cell harvesting.
– ‘Consolidation phase’ the same treatment as in the induction phase, for 2 more cycles. Apart from not having a transplant, this is the normal treatment.
– Maintenance. This was originally Daratumumab and Dex, once per cycle, and Lenalidomide daily (with a week off per cycle). The Lenalidomide dose was reduced from the start (because maintenance is about preventing/delaying myeloma returning), the Dex likewise. The Lenalidomide was further reduced and then stopped due to side effects. Daratumumab is ongoing.
I am ‘high risk’ (= my chromosomes are messed up) which makes my myeloma more aggressive than most so this is more maintenance than usual.
Despite that, I have just celebrated 3 years in remission.
One thing that probably helps: I am doing what I reasonably can in terms of healthy lifestyle: lots of exercise, vegetarian and eating healthily, don’t drink much…
Regards
Rabbit
Hi Larry,
If you are saying that you have smouldering myeloma, then I can help on that one.
If that is the case, that would mean that you do not have active myeloma.
https://bloodcancer.org.uk/understanding-blood-cancer/myeloma/smouldering-myeloma/
Normally, smouldering myeloma is only monitored. However, in a few cases, patients are just starting to be given preventative chemo. It’s early days on that, though.
Regards
Rabbit
Hi Larry and welcome to the forum.
You have been through a lot: first shingles, then a myeloma diagnosis.
It sounds as though you were only given Dexamethazone at first, even though you had paraproteins (which are a major indication of MGUS, smouldering myeloma and active myeloma), which is puzzling. Do you know what myeloma treatment is being planned? The NHS standard is a combo of 4 chemo drugs: Daratumumab, Velcade (also known as Velcade), Thalidomide and Dexamethazone. However, some patients are given alternatives to that.
There are also likely to be other drugs, possibly including Acyclovir, to prevent a shingles repeat.
The vomiting is concerning. Any idea what is causing that?
If you have any questions, please ask away. Many of us have had myeloma for years.
Regards
Rabbit
Hi cjleeds,
No problem: I was simply quoting one of our new AI overlords 😀.
However, I will tell you my plan, although it is subject to change, as new clinical trials and treatments come out, and depending on what is most suitable for me at the time.
For me, the belantamab side effects relating to eyesight are offputing. I had, like you, the experience of eyesight deterioration from Dexamethazone already. Once bitten, twice shy, especially as much of my semi-retirement involves reading, looking at nature, watching videos etc. I even use my eyes on the little work that I do these days!
The MajesTEC-3 trial showed that Teclistamab and Daratumumab are a very effective combo. It can come with its own side effects, such as cytokine release syndrome (CRS) and neurotoxicity and they could be tough going in themselves. CRS would be likely to be for just the first few days though. The biggie for me might be infection risk, and I have heard of cases where reduced immunity goes on for years. However, I have done lots of holidays over the last couple of years, so if I have to tuck myself away with lots of books and Youtube in my garden, then so be it.
First, though, I have to hold out for Teclistamab and Dara to be a second line treatment instead of fourth line and later. The MajesTEC-3 results were so good that maybe that will come sometime soon. I can hope!
Regards
Rabbit
Hi cjleeds,
It feels strange to be mentioned in posts 😀.
Anyway, I asked Chat-GPT whether BVd or BPd is better. Here is the response:
“BPd is often stronger for: Patients previously exposed to many therapies; lenalidomide-resistant disease; deeper/longer responses in some relapsed settings.
Main downside: More low blood counts, infection risk, fatigue.
BVd is often stronger for: Faster disease control; patients who still respond to proteasome inhibitors; sometimes easier to tolerate initially. Main downside: Peripheral neuropathy from bortezomib.
Here’s the practical comparison:
Important points about each:
BPD (Belantamab + Pomalidomide + Dex)
Pomalidomide is an immunomodulatory drug often effective after lenalidomide stops working.
Commonly viewed as a very active regimen in relapsed/refractory myeloma.
Often preferred when:
disease is resistant to lenalidomide,
patient previously benefited from pomalidomide-class drugs,
neuropathy makes bortezomib less attractive.
BVD (Belantamab + Bortezomib + Dex)
Bortezomib can reduce myeloma burden quickly.
Sometimes favored if:
rapid control is needed,
the patient previously responded well to proteasome inhibitors,
blood counts are already fragile and pomalidomide may be harder to tolerate.
Neuropathy can become limiting.
One major issue with both
Because they include Belantamab mafodotin, both regimens require close eye monitoring due to corneal toxicity/vision changes. Eye exams are a standard part of treatment.
In current practice
Many myeloma specialists consider BPD potentially more durable, especially in heavily pretreated or lenalidomide-refractory patients, while BVD may produce faster cytoreduction.
The “better” regimen often depends on:
prior exposure to:
Lenalidomide
Bortezomib
Pomalidomide
whether the myeloma is refractory to any of them, kidney function, existing neuropathy, blood counts,and cytogenetic risk.”
Regards
Rabbit
Hi Loubella,
Thank you for sharing your and your husband’s experiences.
You said that “We also felt there was little information about the prognosis without the transplant but I am guessing that is because in the UK, there is not much research data available as most patients have the treatment.”
There have been lots of clinical trials testing the effectiveness of different treatments. Although some of these trials do involve UK patients, they are done all over the world and the results shared globally. There is therefore plenty of data (it’s a bit of a mishmash of inconsistent trials but that’s a different matter).
I think that the reason why UK myeloma patients get nudged towards DVTd plus stem cell transplant as the first line of treatment is that it is the NHS standard. Although the NHS occasionally gets called “the UK national religion”, it can be somewhat dogmatic in its approach.
Regards
Rabbit
Hi psg32 and welcome to the forum.
I went through treatment in the first half of 2023. However, I didn’t have a stem cell transplant.
The short reason why was that, although young enough and superficially fit enough to have one, I have a dodgy heart and a transplant would have put an extra strain on my heart.
However, I did my reading up and discussed it with the consultant. I could have pushed for a transplant but didn’t. Stem cell transplants were originally done when other treatments were relatively ineffective: we are now in an era where patients and doctors are almost spoilt for choice: bispecific antibodies (such as elranatamab, teclistamab and talquetamab), belantamab, celmods, CAR-T (though the last two are not approved yet in the UK)…
The DETERMINATION clinical trial showed that the advantage of a transplant is not so much.
[Now quoting Chat-GPT]
‘There is evidence that some U.S. myeloma patients are delaying or avoiding upfront autologous stem cell transplant (ASCT) more often than in the past, though transplant is still considered a standard option for eligible patients.
Several trends are driving this:
– Highly effective induction regimens (especially daratumumab- and RVd-based combinations)
– Greater use of MRD-guided strategies
The [DETERMINATION] results showing no overall-survival advantage for early transplant versus delayed transplant
– Expanding use of CAR-T and bispecific antibodies in relapsed disease
– Older average age at diagnosis.’
However, in both the US and the UK, transplants are still part of the official first line standard treatment.
Personally, my priority too was quality of life. My response to treatment was ‘very excellent’, and within weeks of going into remission I was off on holiday (though with fatigue and a weakish immune system). I am still in remission.
I am not trying to sell anything to you: simply giving my experience, together with information.
By the way, my stem cells were harvested: I could always have a transplant in some time to come.
Regards
Rabbit
Hi najmah,
I have been trying to keep quiet, as I might have been taking over this forum 😀.
However, you asked me a couple of questions, so here goes…
So I just wanted to ask Rabbit how he felt getting back into exercise and was 6 months the kind of benchmark time that you felt it was right? Did you build it up gradually?
It felt good being back in the gym, psychologically. Up until then, I had been a regular since 2004 (so 19 years up to 2023), give or take a couple of Covid lockdowns. I even went in on the first day lockdowns ended: 12th April 2021!
Although I hadn’t been in there for nearly 6 months, having stopped a couple of weeks into treatment due to fatigue, I hadn’t suspended my membership. It was a matter of principle for me to be able to walk in whenever I wanted.
However, I had gone from being very strong for my age to pretty weak. I had little stamina, cardio fitness or muscle! Physically, it was hell. I started with very light weights and a low cycling gear, but I was still in and out in a matter of minutes. My legs looked so spindly when I restarted squats that they looked like matchsticks. Likewise, my arms were (my wife’s description) ropey.
It took one hell of a lot of effort and willpower to keep doing the extra reps and increase the weights, as well as to keep increasing the gears and time cycling.
Therefore it was necessarily gradual. As for the 6 months, that was simply how long it took. True, I was enjoying remission during that time by going on holidays, so maybe it could have been done in 5 months without trips. However, after spending the first half of 2023 either getting treatment or at home, I was pretty desperate to get on with life 😀
So apart from walking and cycling have you any advice on what I should start with on going back to the gym?
There is a saying that the exercise that is best for you is the exercise that you actually do! Prioritise what you like and are used to. The memory and muscle memory will help enormously.
I must give caveats: these are only my experiences, it may go differently for you. Also, I suggest getting approval from your consultant and/or a physiotherapist before doing anything that could put a strain on your bones.
Regards
Rabbit
Hi Beaming,
I am cheating by copying and posting from another post that I did a few minutes ago 😀
You asked about why I didn’t have a transplant. It wasn’t my age: I am still in my fifties, which is plenty young enough. A couple of years before, I was diagnosed with a dodgy heart. It’s genetic, I have had a healthy lifestyle for decades. My cardiologist and my haemotologist discussed me and agreed that the transplant would put strain on my heart.
In addition, as chemotherapy has been improving, the advantage of a stem cell transplant are less than it used to be. However, it is still the standard UK approach.
Regards
James
PS I was still offered a transplant if I had really wanted one. However, after a few months of reading up on medical papers (I am a science geek so used that background to learn a whole new vocabulary 😀) I agreed with the reasoning, risk/reward etc. My stem cells were collected and are on ice somewhere.
Hi Beaming,
I won’t give you false hope, but when I was diagnosed, my prognosis was not great, but I am doing far better than expected. Meanwhile, so many new treatments have been approved and are in development.
If he can maintain as healthy a lifestyle as possible, that can help. However, no pressure in terms of diet or exercise during treatment, as that can be difficult or simply impossible (voice of experience here, even without having had a transplant 😀).
Regards
Rabbit
