[trishanannyParticipant]

Thank you davepr. Treatment given today and consultant happy with bloods . Protein level not back but happy to wait until next week in view of significant drop last week. So hoping for more good news then.
The fatigue discussed and seems it’s not a common side effect with this treatment. From his diagnosis 7 years ago he has suffered tiredness but not on this level. Previous to this treatment he was walking daily with no problems. Plus pottering in our garden.
However apart from this, the important thing is treatment working. And eating really well.
So taking your advice and consultant advised the same, a little every day and build energy up again.
Hope you are all keeping well and treatment doing the job for you too.

[trishanannyParticipant]

Well we got terrific news yesterday. No trace of paraproteins. Amazing result after such a short time on this new treatment.

My husband coping well with the fatigue, making sure he walks every day and being as active as he can be.

So after the initial ups and downs with Elran, he’s now in a very good place. Treatment will continue weekly from here on.

In posting this I trust it gives all who are getting this treatment great hope that it’ll be the same result for them.

Wishing all a very peaceful and joyful Christmas.

[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.

[trishanannyParticipant]

Thank you Pennylaws and great to hear you are coping well with Elran and doing its job.

My husband has no other issues except the fatigue . His haemoglobin , white cells etc all normal readings. At times he has little appetite but to keep up his iron etc he does take three good meals a day.

I’ll keep you posted if the fatigue eases. But this is a small price to pay for a treatment that works .

Regards

Trisha

[trishanannyParticipant]

Just a quick update on my husbands treatment.
He is continuing weekly and is coping better each week. No trace of paraproteins and so different from previous treatments when it reduced slowly.
Despite the weather he has tried to walk every day and building up his stamina. Still quite fatigued at times but finds he improves as week goes on.
All blood results good , white cells etc. He gets IGG every 4 weeks and Nivestim once weekly.
Hope all on this treatment are doing as well as my husband. We can even now consider a holiday and will ask the consultant next week if this is possible as we would have to miss a week.
Best wishes to all.

[daveprParticipant]

Hi Trish/Penny
So pleased to hear both of you have great news, it certainly seems from our very small sample that Elranatamab is proving to be a “wonder drug”.

Unfortunately I managed to catch a cold that developed into a chest infection and cough a couple of weeks before Christmas; this then meant I missed treatment on Xmas eve & New Years eve as, despite me feeling OK, they wouldn’t risk it while I was taking antibiotics.

I managed to shake the infection and I restarted treatment last Tuesday.

They assured me this shouldn’t really have any effect on the efficacy of the treatment but I’ll find that out at the next blood test results due in a couple of weeks time.

If it doesn’t have any effect, it does then beg the question, why do we need to have weekly treatment?

Will wait and see results before raising this with my Consultant but Trish, I’ll be interested to hear what your experience is around having a treatment holiday for your husband?

Certainly my team have told me to miss a week or two won’t make any real difference.

Good luck with everything.

Best wishes

Dave

[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]

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…

[daveprParticipant]

Hi Penny

Sorry to hear about the rash. I too have some skin problems but I’ve been able to keep them in check through creams.

Mainly Cetraben, which I had as a legacy from skin problems I had after my Stem Cell treatment a year or so ago; I’ve also been using Hydrocortisone cream around the injection site, prescribed by my GP to minimise the itching sensation.

With regard to my treatment “holidays”, once I
was well enough they just recommenced treatment as usual with the same weekly dosage.

So far due to illness I missed two weeks last year but they weren’t consecutive and then I missed two consecutive weeks over the Christmas period.

After each break I simply restarted with treatment as usual without any ill effects. It also seems from my paraprotein results, the two single weeks had little effect on the effectiveness of the treatment. Of course I don’t know if it would have been even better had I not missed the 2 weeks!

I won’t know if the two consecutive weeks I missed over Christmas will have had an effect for a couple of weeks as I’m not due a blood test until February.

What I can definitely confirm is restarting after missing 2 weeks had no effect on me and certainly I didn’t need to be admitted to hospital to “start from scratch”.

I’ll let you know when I get further information on what happens to my paraprotein levels.

I can however tell you I feel very well (for me) at the moment and certainly don’t feel like I’ve gone backwards.

If you want any further details from me please don’t hesitate to let me know. I’m only too happy to help if I can.

In the meantime good luck with sorting the rash and I hope you can simply restart as I have done.

All the very best,

Dave

[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]

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!

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