[chrismParticipant]

This is a new T Cell treatment that is under trial. I have been granted compassionate access. The results discussed with the consultant are impressive, but it is a very strong drug and as such I am concerned about the side effects and the affect on quality of life given the commitment to regular injections.
Has anyone been on this treatment and can advise what it has been like for them in real life?

I am on my 5th line of treatment. Currently Belantamab which has run its course.

[daveprParticipant]

Hi Chrism
Am new on this Forum but have been living with Myeloma for just over 3 years. I’m just completing my 4th line of treatment that hasn’t worked.

I just returned from a meeting with my consultant re my upcoming Elranatamab treatment that will start in next 2-3 weeks.

She has 3 others who have already started treatment and reports of side effects so far are “flu like symptoms, general feeling of being unwell and tired – one had diarrhoea issues but with meds it was easily managed” of course it’s very early days as the approval is still very recent.

Once I start my treatment I’ll gladly update this post with any information I feel is helpful but as we all know everyone’s journey through treatment is different!

[chrismParticipant]

Many thanks for your note.
Apologies, but I replied to the incorrect address originally.

I am under the care of the Royal Marsden. Currently I am on Belantamab which is my 5th line of treatment. It is holding things, but does drag me down and cause eye toxicity.
Hence the reccomendation of this new drug. It is full on to start with a hospital stay and weekly injections.

Everything I hv heard suggest the results are positive but I am weighing up the commitment against the benefit.

All the very best in your treatment

• This reply was modified 3 months ago by  chrism.

[pennylawsonParticipant]

Hi Chrism and Davepr. I am about to start Elranatamab in a few weeks as fourth line of treatment. Do either of you or anyone else have an update on how you are getting on with it? Feel priveledged to have compassionate access to this drug here in Scotland but the down side I’m most concerned about is the tie of regular hospital visits for injections… for a long time!

[daveprParticipant]

Hi Penny

I will be admitted to hospital next Monday for my first two treatments which have to be done as an inpatient over at least a 5day stay as they need to observe for any side effects.

I’ll update this post as and when possible with the details and try and give you some idea as to how I get on.

Regarding the weekly visits to hospital it isn’t really much worse than treatments I’ve had in the past, at least the injection should be quicker 🙂

My Consultant explained that this therapy can roughly be split into thirds. One third it’s not going to be very successful, one third it’ll work really well and treatment can be reduced in time and the final third it’ll work but treatment will need to be maintained long term to keep it working.

Of course that’s a massive simplification of it as in reality it could be a mixture of each scenario and at this stage they don’t know for sure but personally I like to try to understand what the odds are…

[pennylawsonParticipant]

Thanks Dave for your prompt and detailed reply, really helpful. I too have been lined up for at least 5 days in hospital as they ramp up the dose, and possibly to be in again for the third step-up dose. I’ll be very interested to hear how you get on. Very best of wishes, hope you don’t have the cytokine storm reaction and it all goes smoothly for you.

[daveprParticipant]

So I had my first dose of Elranatamab yesterday at 4pm. It seemed the tiniest syringe and honestly I didn’t feel a thing. Of course the first dose is a low one anyway.

I had a great night’s sleep (although as Steroids are part of the premeds I was up for a couple of hours – but that’s usual for me whenever I take dexamethasone)
So far today I actually feel better than I’ve felt in the last few weeks.
Of course it’s still early days but I thought I’d update you on progress so far which is all good no bad.

As long as things don’t suddenly deteriorate I’ll update my progress through this first phase.

If there’s anything you specifically want to know please post and I’ll try and answer in my next post.

[pennylawsonParticipant]

Thanks for the update Dave and really hope the lack of negative effects carries on, keep posting! How long are they keeping you in hospital? I’ve been told 10 days total, possibly with a break before the last step up dose on day 8. I gad radiotherapy on my crumbling upper arm yesterday. Very painful a few hrs after but ok today, not sure if that was an effect of RT or just normal bone pain.

[daveprParticipant]

Hi Penny

I totally sympathise with you regarding the source of the pain you never know quite what’s caused it. Unfortunately 90% of my pain comes from 6 crumbled vertebrae in my back and I’ve been told there really isn’t much they can do without the risk of paralysing me – I’m very lucky however in that when I get pain I just need to sit in a nice comfy chair for 15mins and it subsides to virtually nothing.

Another update

Having had a good day yesterday and a good nights sleep I woke this morning with inflammation and some low level pain from around the injection site. After about 30mins of being awake I also started feeling a bit shivery and my hands felt very cold. All of this I’m assured by the Ward sister is perfectly normal (mild flu like symptoms) – she actually told me they have quite a few people already on the treatment and they’ve pretty much all had the rash and most have had similar symptoms to me.

So I’m back in bed for the day today – they’re going to give me some paracetamol with my morning drugs and hopefully that’ll at least keep things from developing and at best make me feel better.

With regard to time scales they booked me in late Monday afternoon basically to secure the bed and do the admin.

The first Treatment was on Tuesday pm and then obs yesterday and today. As long nothing else develops I’ll then have second dose tomorrow and 48 hours after that which I’m hoping will be Sunday as long as I’m well enough I can go home. Then I spend Sunday night and Monday at home and come back Tuesday as an outpatient to get the first full dose.

I’ll update you on further developments.

[terrysParticipant]

Good evening Dave and Penny,

I have just received my 10th treatment of Elranatamab. I have been very interested in reading about your experiences on this new treatment. I spent 2 weeks in hospital at the start of the treatment and received the first 3 doses there. I experienced a CRS episode after the first dose, but it was dealt with very promptly. The other 2 doses were fine. I also had daily memory tests but there was no evidence of any neurotoxicity. I was discharged with Covid, but luckily I was given anti-viral treatment and felt fine after about a week. I have my treatment once a week and have a blood test too. So far so good! I feel very lucky to be able to have the treatment.

Best wishes,
Terry

[daveprParticipant]

Hi Terry

That’s great to hear.

Today for me seems very similar to your experience. My temperature has been up a few times I’ve felt pretty rotten a few times but they’ve had a strategy to sort things out involving steroids, a drug I can’t quite recall and fluids etc. I now feel fine but they are still continuing with their protocol to ensure I stay that way.

I was due for second dose tomorrow but it seems that may not happen now until they’re happy I’m fully ready. So it’s looking like I might be here for a while now.

It’s good to hear that you only had issues on the first dose. Hopefully I might be the same.

Can you comment on effectiveness of your treatment, have your paraprotein levels come down or is it too early for that?

[pennylawsonParticipant]

Thanks for latest update Dave, hope you feel OK today. Your back damage sounds a lot to deal with but glad you gave a strategy that works, at least short term.
And thanks for sharing your experiences Terry, really interesting. I too feel privileged to be getting this drug. In Scotland its pending full approval so I’m getting ‘compassionate access’ guessing I’m one of very few lucky folk.
I’m now away on holiday for 2 weeks and won’t be reading this as I want to think about other things, but will tune in again when I’m back. Best wishes to you both.

[rabbitParticipant]

Hi everyone,

I just wanted to say thank you all for posting on this forum. I am in remission for now, but when I need the next line of treatment, my consultant has said that elranatamab would currently be his preferred next treatment for me.

I read technical research papers, which talk about ‘adverse events’ during clinical trials, but my consultant has assured me that since the trials, doctors have learnt how to manage side effects, and your posts are confirming that.

Regards
Rabbit

[daveprParticipant]

Another update for those interested.

Despite me now feeling completely fine they have decided to postpone my second treatment from today.

They are going to “review the situation” tomorrow but I suspect with it being the weekend I won’t now get my second treatment until Monday.

What I can say is while the CRS event I experienced wasn’t pleasant it was very far from the worst side effect I’ve experienced from “drugs various” over the past 3 years and clearly the drugs and protocols they have in place to respond to it work quickly and very effectively.

Of course that does mean the requirement for supervision of initial administration of Elranatamab within a Hospital will probably always be a requirement.

I’ll update again when I get my second dose.

[chrismParticipant]

Dear all

Many thanks for posting your experiences with this drug.
I am finding it very useful.

Currently a PET scan had revealed a growth in my upper back which has to be accessed for possible treatment by radiotherapy or a change in regimen to Elranatamab.

The Royal Marsden are very enthusiastic about his new drug, but I still need to be convinced that a change from Belantamab is worthwhile given the weekly commitment to visits for injections i.e. lifesyle/health balance.

For now I am finding your comments really useful

[Author]

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