[pennylawsonParticipant]

A quick update from me. Because my team were worried about my persistent skin reaction to Elranatamab, they decided to try me on the very similar alternative bispecific antibody teclistamab. I had to be in hospital for step up doses again for 6 days but all went smoothly, no CRS this time, and just had my first outpatient dose on Friday. So far so good and free light chains still at rock bottom despite 5 weeks without treatment. Hope everyone else is doing well, and would love to hear from anyone who has experience of teclistamab. I am the first patient in Highland to have it – yet again I am so grateful for our amazing NHS!

[pennylawsonParticipant]

Thanks for your reply Dave, really interesting. Good to hear you’re feeling good at the moment, and that your missed treatments haven’t made a difference to your paraproteins. Hope your results from your Feb blood test stay fine.
My rash is a bit better and creams help a bit. 3 days on dexamethasone may also have helped but i didn’t enjoy those familiar steroid side effects!! I think because my hospital has v little experience with Elran they are being ultra cautious about both suspending my treatment and also getting me in overnight to start me off again after a break. Plan may change though.
Keep in touch. Good to exchange info with folk in the same boat. X

[pennylawsonParticipant]

Update from today’s clinic. They are concerned about my rash and think it is caused by the Elran, so I’m skipping injections this week and next. Then I’ll need to start back on the lowest dose again and stay in hospital for that for at least 24 hours. Boo! Dave, you missed a couple of treatments. Do you also have to go through stepped up doses in hospital again? I wonder if all hospitals stick to the same protocol.
If it turns out I can’t tolerate Elran in the longer term, there is mention of trying the alternative, teclistamab.
Oh well, they do say it’s a journey…

[pennylawsonParticipant]

Hi Trish, Dave etc
Great to get your updates and so glad things are generally going well. Hope you make a full recovery soon Dave.
I have also been wondering how much it matters to have breaks from weekly treatment. Partly because I’d like to plan a holiday longer than 6 days!! Also I’ve now developed another skin problem, red blotchy rash on limbs and tummy and swollen face, so they’ve suspended my next injection and prescribed 3 days dexamethsone. Think it’s starting to clear up now, alternating sub zero outdoor temperatures with warm indoors not helping though. Planning to ask my consultant about missing treatments at my next appointment so will report here if I get useful answers.
Best wishes ❤️ to all

[pennylawsonParticipant]

Hi Trishananny. So glad it’s good news for your husband. It makes it all worthwhile when you get results like that – the best Christmas present you could wish for.
I’m also doing well on Elran, paraproteins below detection level and just a bit of tiredness. Only other thing now is low haemoglobin and ‘pale’ red blood cells. They gave me iron tablets but they play havoc with my digestive system so I’ve stopped taking them for now.
Best Christmas wishes to all of you on the forum and here’s hoping for good things in 2025.

[pennylawsonParticipant]

Hi Dave
So glad the treatment is working well for you, as it is for me too. Paraproteins down to undetectable levels. I’ve also had skin issues, dry itchy and flaky skin over the top half of my body during around weeks 3 to 7 of being on Elranatamab. My consultant thought it might be the cotrimoxosol prophylatctic antibiotics I’m on so we stopped them. My skin then gradually got better and is fine now, Not sure if it was the antibiotics or the Elran causing it. I’ve now restarted cotrimoxosol so we will see what happens.

[pennylawsonParticipant]

Hi Trishananny
My paraproteins xame down after my very first step up dose! However mine never tend to get very high even when my myeloma is active so maybe not typical.
Hope it goes well for your husband.
I now have an itchy rash all over the top half of my body. Hoping it won’t last. Has anyone else had that?
Penny

[pennylawsonParticipant]

Hi All
Update from the Highlands on my Elranatamab start up. First dose gave me a grade 2 CRS, sudden vomiting and big blood pressure drop, but well dealt with and stabilised quickly. Felt grotty for next week with bad headache and not eating. Once I’d recovered, helped hugely by a few days at home, I was back in on Monday to start again. No reaction this time, nor to second dose received yesterday…so far so good! Hoping to be done with this phase by middle of next week.
Weekly trips for injections wont feel much of a price to pay if it gives me a couple more years of relative normality. So grateful for this drug. Have you seen how much it costs!!
Hope everyone doing OK.
Penny

[pennylawsonParticipant]

I’m now on day2 in hospital. Got my first dose of 12mg yesterday pm. So far no ill effects except that ‘dex’ feeling from the 20mg in the pre-med mixture. It’s been a while since I took steroids but it all comes back to me now…
Only other moan is the tiny breakfast. One weetabix won’t keep me going long!
Hope the rest of you are doing well. Interested in any updates.

[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.

[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.

[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.

[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!

[pennylawsonParticipant]

Just starting on DVd now so very useful to read this thread, and the other two on DVd. My regime is a bit different from the one set out above, guess they tweak it for different people. It is quite complicated so have done my own handy spreadsheet for what to take when, thanks for the tip Rachel.
Will post updates as I go along, great to have the support from this forum.
Penny

[pennylawsonParticipant]

Hi David and others
I’ve just started on DVd regime. Very helpful to read this thread as I know its quite a new treatment, and certainly has only been on offer in the Highlands where I am for a few months, so really useful to hear personal experiences. I’m at first relapse after 8 years remission, and will go on to the maintenance Darzalex after 24 weeks. Injections only, glad I don’t have to have the lengthy infusions.
First session was fine, feeling a bit off today but perhaps not surprising with the cocktail of accompanying drugs they give you – feel like a chemists shop! But no complaints, 6 months ago I was psyching up for a second CDT/HDT/Stem cell transplant so very lucky this alternative has turned up.
Penny

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