Tagged: Elranatamab
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Hi sj2909,
Although I have no experience of any of the bispecifics that you mention, I have been reading up whilst in remission. Simply planning ahead.
Anyway, I came across this study stating that Elranatamab is significantly more effective than Teclistamab.
https://pubmed.ncbi.nlm.nih.gov/38347747/
Regards
Rabbit
Thanks so much for your reply, that’s really good to know. I have now got a telephone appointment with a regional advisor next week so I will post any info I get from her.
Hi. I’ve been on Teclistamab for about a year now. For me it’s working 100% against my myeloma, few side effects and talk of going from injections every 2 weeks to every 4 weeks as soon as that protocol is approved for Scotland.
I’m also not sure about the longer term prognosis but I hope it will cheer you on to hear I am currently on a 3.5 week holiday in New zealand, with the blessing of my consultant who is very relaxed about me missing treatments now and again. So in no way has Teclistamab taken over my life! Good luck…and thanks for the link to the study Rabbit. Penny
Hi Penny
Thanks so much for your post, it has really lifted me and I am so happy to hear that you are enjoying an amazing holiday. I feel very reassured by the posts on here, I can’t tell you what a difference it has made. I wish I had joined this chat two months ago when I knew I was going to have to progress with treatment.
Hello all. I’m reaching out again to see if anyone is willing to share their experience of Elranatamab. My husband started Elra on 9 December as his 4th line of treatment. His PP were on the rise and, whilst on holiday overseas he had an uncontrollable nosebleed as a result of extremely low platelets (just 17). It wasn’t an easy start with the Elra and over the last 11 weeks, a great deal of the time as an inpatient. He’s had a couple of unidentifiable infections, needing IV antibiotics. Until the last 3 weeks, he has needed platelet and blood transfusions. We were told after cycle 1 that as there had been no response, in fact the PP had risen to 71, that the treatment would be stopped. However, our consultant then said that the data had shown that some patients do not respond until cycle 2 or beyond and so the treatment has continued. Amazingly the PP dropped to 16 and as of last week are now down to 8. This all looks wonderful from a stats point of view BUT unfortunately my husband continues to be unwell. He’s lost a great deal of weight, he is breathless, extremely fatigued (needing a couple of 2 hour plus naps every day), is now suffering with tingling legs and feet and has absolutely no desire to eat. He says that if he forces himself to eat, he then feels sick. So currently he has completed 8 of the 24 weekly treatments. We are aware that after week 24 the treatment will switch to every other week. We appreciate that this is a new treatment and that every Myeloma patient is different, but I wondered if there’s anyone out there who perhaps did struggle in a similar way at the beginning but has got beyond that and is feeling well. Thank you.
Hi
I’m really sorry your husband has been so unwell, it’s so difficult when you know the treatment is working but you are not getting quality of life. I am not currently on this but I am due to start it or Teclistamab in the next couple of weeks and there are a couple of things to pass on I think.
Firstly, I asked about the amount of treatment and hospital time and my consultant (who has just been to some sort of myeloma conference in London) told me that they are realising that the drug doses can be tailored so it may be that they can be altered sooner than the 24 weeks you mentioned.
The other point is that I have spoken with regional myeloma specialists because I wanted to assess all options. You might have done this but I would definitely question your consultant on specialist advice if they are not a myeloma specialist. I have been told the Teclistamab and Elranatamab are very similar 4th line drugs so I wonder if you could discuss swapping if the symptoms don’t settle down. I’d welcome other opinions on this, I know one of the contributors on this thread was switched. I am also being told that my hospital favours Teclistamab so I may have to take this option.
Good luck, I really hope your husband feels better soon.
Hi Lafleck
Sorry to hear your husband is having a hard time with Elranatamab. I started on it in Oct 2024 as 4th line of treatment but was switched to Teclistamab about this time last year due to a skin reaction. I’ve had no problems since and my free light chain levels are undetectable. I’m very grateful, for me it’s working 100%.
It would certainly be worth discussing the option of Teclistamab with your consultant. There’s another similar drug on the horizon called Talquetamab too, not sure if its approved for use yet but again worth asking.
Wish you the best and really hope things improve soon.
Penny
Penny it is so good to hear how well you are doing, you have really helped me face my next line of treatment. I hope you had a great holiday too! Just on Talquetamab, I have been told that is a 5th line option as it works slightly differently so you might want to keep it in your back pocket. As far as I know it is approved now as I was given info on it as part of my options.
Hope this helps.
Thanks sj. I had an amazing trip to NZ, feel so lucky. I’m now planning to discuss how much flexibility is possible in my treatment so that we can plan more holidays during the year – more along the lines of camping in Scotland or France than longhaul though!
That’s really interesting to hear about Talquetamab being suggested for 5th line, might be really useful for me if and when Teclistamab stops working, I guess the more alternatives the better. It’s fantastic there is so much new research happening for Myeloma.
Keep posting here. I think we all appreciate hearing each other’s stories. x
I have been on Elranatrab now since February, 2025.
My first session was unsuccessful and all treatment was stopped for 6 weeks to recover.
When I restarted it has been a great success. My paraprotien was measured as undetectable and I was officially put in remission. The second phase saw no changes to the regimen and we can only think that the body rejected it initially. Since that time I have been on tummy injections every 4 weeks which is a big improvement for quality of life. Every 3 weeks I have immugoblins to support my immune system. Fatigue is a constant I think on all treatments. For those that are having issues I suggest you manage your time and your expectations. Certainly it has not stopped me travelling in the UK and overseas albeit everything takes a little longer to undertake. A small concession given what we are all going through I would suggest.
This is the only downside.
I have become more susceptible to bugs, in particular chest infections. I started a cough some 5 months ago and have not been able to shake it off. They have suggested this is a consequence of the treatment and identified Pseudomonas as the cause. I am due to have further tests and possible treatment under the Respiratory Team.
We are looking at Talquetamab, which is now approved in England (in Europe since 2023) as the next line of treatment. This works in a very similar way to Elranatrab, but works on a different part of the problem cells so it does not replicate Elranatrab. The protocols are the same as Elra, but injections are weekly.
For now Elra continues to be effective.
On a very practical and obvious note, it will soon be spring and warmer weather with longer days and sunshine is the best tonic of all.
I was diagnosed with MM in Feb, 2013
Thanks for giving us your experience. It’s especially helpful to know that even though it didn’t work initially you were still able to try it again. I was diagnosed in 2014 so have had a similar amount of time in treatment. I am waiting to be admitted to Worcester hospital for the treatment but I have been told that they use Teclistamab as it is easier to administer. I don’t know if I will have a choice but a myeloma specialist said that the average length of time for tec working is 12 months compared to 17 months for Elra. I do find it daunting facing new treatment and trying to ensure I feel I have taken the best option.
Dear All.
I started Elranatamab in January this year with the first three injections being administered during a 10 day stay in hospital.
After the first injection of the second cycle I went down with two viruses one being CMV which I was admitted into hospital for another 15 night stay.
I have now started my 3rd cycle having two injections to date.
Side effects so far is mainly fatigue, aching muscles, unsteady on my feet feeling worse on the 5th day after the injection.
I have also now started Immunoglobulin to help boost my antibodies.
My husband has been hit by several respiratory infections this year, was in hospital twice in January and has been in hospital since 10th February. It was decided to give him his first dose of Elranatamab on 25th February when they felt he was well enough to start treatment. The very next day he was hit with a virus picked up in the ward.
Two weeks later he became very unwell and was given the antidote to Elran. He felt better within the hour. They gave him a bit of time to recover and then administered the first dose again. By the next day he was extremely ill and was taken to ICU with kidney failure.
After two weeks in ICU on dialysis his kidneys seem to have recovered and he is back in oncology. He has lost so much weight and can barely move, he cannot get out of bed. The doctors are saying he is recovering well and will need physio.
A BMB is planned for the coming week to decide the next stage in treatment – his consultant is keen to continue with Elranatamab as “it is working”. We can’t delay treatment for much longer as Dave is high risk and hasn’t been on regular treatment since last summer.
We have the theory that, as Dave’s Myeloma was “rampaging” the Elran got to work and started to kill the Myeloma cells releasing protein into the blood at such a high rate that the kidneys couldn’t cope. This is something the registrar is considering too. His consultant is not one for explaining things so I am looking forward to meeting the registrar to discuss.
We are frightened to continue with Elranatamab but perhaps the worst is over and it won’t have such a devastating effect from the next dose.
Has anyone else suffered in a similar way?
Hello. Sorry to hear that your husband has been so unwell. My husband started Elranatamab as his 4th line of treatment on 9 December last year, at a time when his paraproteins were escalating rapidly. He too has not been well, with multiple hospital admissions through until early February. He’s had a few pauses in treatment as he was so unwell but has now managed to complete Cycle 3. Certainly the paraproteins have dropped substantially and are now single figures. However, this treatment has come at a cost. Life is very much different to how it was pre this line of treatment. Extreme fatigue like never before, very disturbed nights, at times zero appetite. We have asked our consultant about reducing the weekly treatments, but there’s been no agreement to that yet. My husband is 76 and had been fairly fit. Golf and ability to travel overseas. This is completely off the agenda at the moment. But there are lots of success stories out there with this drug. We too are always interested in hearing others’ experiences.
Hi
I am so sorry to hear that your husband’s are struggling so much. It also frustrated me so much to hear that consultants are continuing to ignore the voice of the patient and having the “treat at all costs” attitude.
I am one week out of hospital having had my first doses of Elran as 4th line treatment. I was told most people don’t have a reaction and at worst flu like symptoms from the cytokine release syndrome. However, I experienced extreme tumour flair alongside a huge drop in heart rate. The tumour flair was severe pain radiating from my bones which lasted for around 2 hours and occurred 24 hours after each dose. It was eventually managed by a high dose of steroids. They are aware of this side effect but it isn’t listed in the info on the drug. They did give me the counteracting drug for CRS initially which seemed to help but then they said the tumour flair isn’t CRS so didn’t use it again.
Since returning home I have also had significant fatigue. I am 55 and active but at the moment I can only do small things and spend a lot of time resting. This is completely different from previous treatments. I am due to have an immunoglobulin transfusion next week as my immune system has been weak for a while so they want me to have that every 4 weeks. I am really hoping that this fatigue changes but I am concerned that it won’t s this is not how I wish to live my life.
I am also currently experiencing quite a bad skin reaction to the jab. I think the steroids in hospital helped to control this but now they have reduced the steroid dose my body doesn’t seem able to cope with the irritation. I am waiting to hear back about this.
It does sound like there are still significant side effects with this drug which patients are not told about. I tried to find out as much as possible before I agreed to this treatment but I don’t feel that I was given the full facts. I do know that it is possible to swap from this drug to Teclistamab if you are experiencing problems with it as Penny has mentioned previously. I had the choice of the two and decided on Elran but now I wonder if I made the right choice.
I would urge people to be assertive with consultants. You have a right to have a say, to be heard and to get answers. In the last 12 years I have had great and bad consultants and I have experienced being pushed beyond what I can endure regarding treatment due to them focusing only on the end goal.
I really hope you are able to get answers.
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