[rabbitParticipant]

Hi everybody,

I have posted a couple of messages in other areas of this forum, but I haven’t got around to introducing myself.

I am a male in my mid fifties. I was diagnosed with MM in December 2022. I went straight into chemo a few weeks later. Since then I have had 6 cycles of VRD-Dara (Velcade = Bortezomib, Revlimid = Lenalidomide, Dexamethasone and Daratumumub), at least in theory. In practice, my platelets went very low, so my consultant withheld the Lenalidomide for most of those cycles.

I have not had an SCT for multiple reasons: a genetically dodgy heart (my cardiologist and haemotologist have assessed that an SCT would put significant strain on my heart), my chemo progress having been very excellent (so less need for an SCT), and it was only possible to get enough stem cells from me for one SCT.

Despite that, I am currently in remission, but on maintenance chemo, which is Revlimid most days plus dexa and dara once every 4 weeks.

I have two chromosomal abnormalities: t(4; 14) and 1q+. This makes me ‘high risk’. In plainer English, it means that the cancer is expected to come back sooner than for most peopLe with MM.

Meanwhile, I am managing to work full time, exercise and spend time with my family – not necessarily in that order of importance!

[squirrelParticipant]

Hi Rabbit

Thank you for your replies on my post – Much appreciated.
I see you had 6 cycles whereas I have only had 4 cycles.
You received Lenalidomide as part of your cycle but I had Thalidomide.
I had a break from medication, apart from Aciclovir, for 2 weeks before I then started the priming and harvesting process which has now been completed.
I have now been on Aciclovir only since 22nd September.
My Consultant appointment is 3rd October so I am assuming the suggestion will be for the first SCT date to be agreed.
I am assuming that I must also be in some form of remission or I would be on more medication!!
So hard to know what the Consultant is thinking!!
Glad to hear you are managing to carry on so well – I unfortunately struggled through my induction cycles. Makes me wonder if side effects were linked with Thalidomide.
Keep in touch and stay safe.

[mulberryParticipant]

Welcome to the forum rabbit.
There are some new types of myeloma treatment tantalisingly close in the UK, available to some of us in trials, CAR-T cell therapy, bispecifics & cel mods. These may really extend periods of disease stability for all myeloma patients, inc those diagnosed with higher risk variations. Keep hope alive!
Jane

[rabbitParticipant]

Hi Squirrel,

Thank you for replying. All the best with your SCT.

Rabbit

[rabbitParticipant]

Hi Mulberry,

Thanks for your reply.

I know that new treatments are on their way. Car T and bispecific antibodies have great promise, but I am aware that:
– Car T can be very tough to go through due to cytokine storms (is it similar for bispecific antibodies?)
– As far as I am aware, no drugs based on either of these technologies are approved yet in the UK, although there have been approvals in the EU and US.

I hadn’t heard of Cel mods before. Time for some more researching!

Rabbit

[mulberryParticipant]

Hi Rabbit

It’s true that CAR-T & bispecifics aren’t approved in UK yet, but once production is ramped up by the pharmaceutical companies producing CAR-T products, the pharma companies are likely to seek health technology assessments to allow NHS to use them, and several myeloma consultants have said bispecifics may be approved sooner, perhaps within months.
My understanding is that CAR-T treatment now is a lot less risky than in the early days, that cytokine release syndrome can now be dealt with effectively. In one trial it’s being successfully used for patients too frail to have stem cell transplant, patients in their 80s.

[rebeccaRParticipant]

Hi Rabbit, Sorry to hear your diagnosis but it is not all doom and gloom – tho at this early stage hard to imagine otherwise. I was 50 when diagnosed with renal failure. I had high risk translocation 14:16 which tends to range kidneys rather than bones- it did – even tho my light chains were only 1120 when diagnosed. However, altho statistically I was seen as high risk this Xmas I will be 10 years post Sct, drug free, and 11 years since diagnosis. We are not a statistic, we are all very individual with very individual MM – so whilst my MM damages kidney quickly it was very easy to treat with just velcade/dex (I didn’t have anything else as kidneys too damaged at the time). Because of the translocation/high risk they were prepared to SCT me , despite low kidney function. I was young, fit and I have far exceeded expectations. High risk does not always mean you will fit the high risk narrative/statistics – trust your gut in all matters MM. Tbh with the array of different drugs they can make high risk be standard risk without SCT – we/our myeloma is highly individual. I would have saved myself a lot of heartache if I hadn’t initially listened to the statistics/probability and trusted how I felt instead. Stay positive, fit and mindful and you’ll have a good life living with MM.
Rebecca

[squirrelParticipant]

@rebeccaR
What a lovely reply to Rabbit.
I am awaiting final consultation before being put forward for a tandem stem cell transplant due to the fact my MM has been classed as Ultra High Risk.t(4.14) + 1q.
I believe my Consultant has already pencilled me in for 9th October.
Reading your reply has given me hope that I may also be that one that can DO this.
I hope you have many more years post sct.
You are an inspiration – Thank you.

Squirrel

[rebeccaRParticipant]

Thank you Squirrel – I hope all goes well. When I was diagnosed (with a 14yr old daughter) I couldn’t contemplate what they were telling me tbh. I sought out the success stories (back then myeloma beacon US) and other forums and clung on to those with 20 yr remissions etc – albeit bucking the trend but then..it is just a trend. I met an elderly lady whilst I was having treatment and never had an SCT but after 12 yrs in remission had done chemo then had another 6 years and was back for a little bit more. My kidney function after SCT was low 20s and was told, naturally, kidneys don’t regenerate so will stay the same/decline. I sought out the success stories that led me to believe there was hope. 5 years later my kidneys got to a stable 40 and today a stable 45. Perhaps it took them a long time to be rid of the chemo effect I don’t know. I don’t eat/drink differently so now not diet led (tho early on I tried to help them as much as possible). I was always more concerned of my kidneys killing be and tbh resent how my Hope was tried to be extinguished by consultants trying to be realistic- based on statistics. I read ppl saying they have gained an extra 3 years as on maintenance (based on stats) but I wasn’t eligible for maintenance due to kidneys – if I’d been on a trial with maintenance I may be posting today saying I’m nearing 10 years because of the maintenance – but I didn’t have it – so posting 10 years, drugs free! The best second opinion I obtained before a hospital would SCT me was one who said he felt he was sat there like a book maker guessing the odds. Well I prefer to guess my own odds thank you and err on the side of luck, optimism and how I feel. If I’m wrong then at least I’ve lived with my mind in a state of Hope and positivity and that goes a long way – as we will all hit rock bottom early on in the diagnosis and nothing is worse than living in that state.

[rabbitParticipant]

Hi Rebecca,

Thank you very much for your messages and information.

Much as I appreciate your comments about not trusting statistics, that’s difficult for me to do – I am a mathematician / statistician!

However, the percentiles beyond the median overall Overall Survival period are high (in plainer English, people can live far, far beyond the life expectancy quoted), and the new treatments coming in can change everything!

All the best, Rebecca. May you continue to defy the stats for many decades to come.

[rabbitParticipant]

Hi Squirrel,

Thanks for your messages. After being told that I had high risk myeloma, I also went through serious depression. However, I have bounced back both physically and mentally. Now that I am in remission, I am rebuilding my strength and cardio fitness, I have had holidays and am generally getting on with life.

All the best, Squirrel.

[spk2021Participant]

Hi Squirrel

Sorry this is a delayed response but I have only just registered to participate in this forum, having steered away in the past due to sometimes getting information overload!

By now, you will have had your SCT and I really hope it went as well as it could and that you are recovering well.

I searched for ‘high risk’ and came across this thread. No doubt there are other UHR people in the forum, but you are the first I have come across. I am also UHR with not two but three high risk markers, which isn’t great and constantly fills me with fear, even though my wonderful consultant doesn’t really believe in the UHR classification and has drummed into me repeatedly how individual MM is, regardless of genetic markers.

I wish you well with your ongoing treatment.

Best wishes

SPK

[squirrelParticipant]

@spk2021

Hi SPK

You are right about information overload and I feel that there is so much that I still don’t understand.
Every so often the fear gets to me too.
I also believe that a lot of people write on here when they are at their worse but there are quite a few positives here too.
You say that you have 3 high risk markers but I don’t even know if I have more than one. The only one I know about is the (t4-t14) chromosome and of 1q by FISH which was why it was classed as UHR and I only found that out by chance on a clinic letter sent to my GP. My Consultant also doesn’t believe in the UHR classification.
I believe there is so much information to take in on Myeloma that the Consultants try to give as much as they feel you need to know at each stage of treatment. Maybe because as they say MM is so individual.
SCT didn’t go as well as expected and I managed to get an infection while in hospital so I had to stay an extra 7 days. It took a lot out of me but I am very lucky to have a wonderful husband who has helped me tremendously.
Again though, others have found the SCT very easy going – some even going back to work. It is 8 weeks since my SCT and only now have I started to feel a bit more like myself.
I start chemo cycles again at the end of next week and I am also booked in for the second SCT due mid January which my Consultant said is recommended for UHR Myeloma although others have said their Consultants don’t agree.
I hope this helps you.

Best wishes

Sandra
Squirrel

[squirrelParticipant]

@spk2021

Hi again
I see in one of your other posts that you are being treated in Royal Bournemouth hospital.
I am being treated in Southampton General hospital.
Best wishes

Sandra
Squirrel

[spk2021Participant]

Dear Sandra

I am so sorry to hear that there were complications with your SCT. That’s awful for you. I guess in the grand scheme of things, mine went reasonably well. I suffered really bad mouth and throat pain and couldn’t swallow at all for four days — not even my own saliva! Unfortunately I also had a severe lower back flare-up while in and it course a haematology ward is not prepared for that!

It’s interesting to hear that your consultant also doesn’t believe in the UHR categorization and I’m starting to wonder how widespread that opinion is (unless by chance we have the same consultant!)

I’ve been very fortunate to join a trial for my first line treatment which I started in January. The trial was amended this year to add a high risk pathway which has meant I only needed one SCT with a 100 day recovery period followed by 4×3 week cycles of consolidation treatment has (I’m about half way through that) before moving on to maintenance.

Re. information from consultants and other medics, I ask a LOT of questions! My consultant is always making fun of me about it and always puts me at the end of her clinics! There was a point where I read too much (including research papers) and that just got scary, so I stopped. But I do think it’s important to be well informed so that we are involved fully in the treatment process and understand the outcomes and implications. Consultants are there to support us and that includes answering all our questions, however annoying they might be!

Re. markers, I’ve have to look back at clinic letters to remember what mine are, but I’ve basically let go of those details as I don’t think it helps to dwell on it. I know I have three HR markers, one of which is associated with progression, but I prefer now to try to not focus on what they are as it just kind of adds to my anxiety.

Again, I’m really sorry you went through such a difficult time. I do hope the same is not repeated. It’s such a lot to go through. Tbh, it hit me as hard mentally as it did physically. Be proud that you’re getting through this and that you’re already started to feel a little more ‘normal’. The SCT knocks the stuffing out of us and the fatigue, brain fog etc is impossible to describe to anyone who has no idea what it’s like.

Best wishes

S

[Author]

Posts