[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.

[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

[mulberryParticipant]

The USA study is the PROMISE study. I’m not sure if any interim results have been published, I can see it is still recruiting though.

[mulberryParticipant]

The question of inheritability was raised at the Myeloma UK Patient Information Day last weekend. Professor Graham Jackson, clinical advisor to Myeloma UK, said it’s like having 3 or 4 tickets in the lottery, as opposed to a single ticket. Having family members with the disease does increase your chances of developing it, but you are still very unlikely to do so.
In USA there has been a study going for the past few years testing family members over 40. This may shed light on the most effective way to catch myeloma early.
The fact that you are aware of potential symptoms of myeloma will help you seek testing should any occur. The crucial test (which doesn’t catch everyone, but does the majority) is electrophoresis testing that shows a spike of Monoclonal protein.

[mulberryParticipant]

I hope your husband is feeling better now.
There should be a myeloma specialist nurse at the hospital who can sort things like getting your husband’s drugs to him.
I hope you are managing to avoid COVID yourself.

[mulberryParticipant]

Thank you scatter05, I am touched by your message. Fortunately I feel fine, and second line treatment is more effective than it used to be, so I remain hopeful.

[mulberryParticipant]

As Gillian says above, plus I took plenty of pairs of old briefs and replaced them with new ones for when I got home- some small thing to look forward to!
I exercised as much as possible (walking outside the ward in a safe place, then on the general ward) until I was neutropenic and confined to my room. I didn’t use most of the things I took in as I found my concentration wasn’t good- partly because my sleep was so disturbed at night (by obs) I often snoozed in the day. I did listen to audio books but didn’t read much, nor watch TV at all despite having one in the room & being given a card for it! I had a pretty constant stream of nurses, ward staff & drs, many of whom liked a natter & the time passed quickly.

[mulberryParticipant]

I am still getting my Dr Reddy s generic lenalidomide from a reliable 3rd party in India, and have been since 2019.
Unfortunately for me I am relapsing, so lenalidomide refractory now, so I won’t be importing any more, but I do credit it with extending my period of “remission” to the average 58 months, rather than 30 months without it.
I can give you the details of my contact if you PM me, but I had understood that NHS is funding patients’ lenalidomide now.

[mulberryParticipant]

Welcome to the forum cjleeds.
Best wishes as you start your treatment, first step towards feeling better.

[mulberryParticipant]

Thank you for posting Phoenix Tom, both now and over the years.
When we are first diagnosed I guess most of us think 10 years would be a good innings for which we would be grateful. But years slip by so quickly when we are appreciating life, and a decade becomes a blink of the eye.
I hope the final chapter of you life likewise lasts longer than you suppose, is filled with interest and joy (not just paperwork), that you’ve had opportunities to say things that should be said, and in the end you are at peace.
Your posts will remain one of your many legacies helping those that are dealing with this disease in the future.
I hope I can face the end of my treatment road with equal acceptance. Thank you Tom.

[mulberryParticipant]

Hi jennya

It’s good that you are over the major hurdle of transplant, and it’s still early days for you. I had a face to face consultation on day 37 and remember feeling distinctly better than I had been for the first 10 days after discharge, then feeling better still by day 60, and pretty much able to resume normal life by day 90 or 100- if my experience is anything to go but it’s unlikely that you would feel anywhere near normal 8 days after discharge.
I had felt dizzy and lightheaded prior to and during induction. This did continue to some extent for a while after transplant, but gradually diminished and was not a problem by day 100 (except very occasionally).
My blood pressure was historically low, and still is, I’m hoping that’ll help avoid some of the health issues associated with high blood pressure?
I hope that your lightheadedness improves over the next weeks.

[mulberryParticipant]

I hope you get answers soon. It’s very stressful knowing something is amiss, but not having a diagnosis or treatment.

[mulberryParticipant]

Hi Missm
Ive just come across a UK paper from last year about ASCTs for MM patients with chronic kidney disease, which looks hopeful that it is a good step to take:
https://www.nature.com/articles/s41409-022-01657-y
Hope you can follow the link.
Jane

[mulberryParticipant]

Welcome to the forum Missm
You can always ask for a second opinion at a different hospital (on NHS) if you remain unsure what to do. Although it can feel uncomfortable for the patient to ask for one (at least it did for me), hospitals are used to this and good doctors won’t take it personally.
The decision to recommend stem cell transplant at this stage has almost certainly been made by a multi disciplinary team meeting in your hospital, between renal consultants and haematologists. It may be helpful to ask why there is a discrepancy between what you were told before, and current advice. I’d try to understand what their reasoning is.
For most myeloma patients, most of the time, there are clear pathways (dictated by NICE anyway) that all UK myeloma specialists would agree on, such as the advisability of having a stem cell transplant if the patient is fit enough. However there are some patient scenarios where there is more of a balancing act, weighing up relative risks and benefits of further cycles of treatment Vs transplant for example. This is more of a delicate balancing act, the art of a good haematologist.
Many myeloma patients have a degree of kidney damage, even if less severe than yours was at diagnosis, and transplant centres have experience caring for myeloma patients with renal issues.
As you probably know, at the moment stem cell transplantation is the only option which enables myeloma patients to be virtually treatment free (maintenance is in tablet form & has easier to live with side effects). Statistically patients will have 5 years of myeloma being in the background rather than centre stage, and for many of us, a good quality of life can be resumed.
Best wishes,
Jane

[mulberryParticipant]

Hi Biffboff, how did you get on with your GP appointment?
My mother in law has symptoms that could have been myeloma, and my husband queried myeloma. The GP said it was at the back of his mind, and ordered appropriate tests. Thankfully my M-i-l was found not to have myeloma, but something ruled out is one step closer to correct diagnosis.
It can be difficult to advocate for oneself, especially when we all know how stretched NHS staff are at the moment, but when we are worried, we owe it to ourselves to push for answers.

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