[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.

[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?

[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.

[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.

[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…

[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!

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