Tagged: Elranatamab
This topic contains 72 replies, has 10 voices, and was last updated by 
pennylawson 2 weeks, 3 days ago.
Hi everyone and hoping you’re all well.
Treatment every two weeks still ongoing with no significant downsides. Pins and needles in his feet and immunity low. Copes with t(e pins and needles which seem to only happen at night when in bed. Has picked up chest infection but doing well on antibiotic.
Planning a trip to France for few days next week and consultant ok with that even though means delaying treatment for one week.
Main message is that treatment working and no sign of Para Proteins.
Regards to all.
Hi Trishananny. Glad things are still generally going well for your husband. I’m hoping to soon reduce to 4 weekly injections of my teclistamab which is still keeping my paraproteins at near zero – amazing! Just back from 11 days in Sardinia, so nice to get away. Have a lovely time in France, it will do you both a power of good I’m sure.
Very pleased to read the positive comments.
As an update I started my Elanatrab treatment in February. After a short spell in hospital I was given early release for good behaviour. However, after just two days I was back in suffering with extreme fatigue, shortness of breath and acute diarrhea. That meant I was taken off the treatment after just 2 doses whilst they stabilised me and got my bloods back to manageable levels.
I resumed treatment after 6 weeks. So far, so good. All positive. I have had a cough however for over 5 months which has been resistant to drugs. Bearing in mind that our levels hit rock bottom with Elanatrab I have taken this as a necessary evil. It is slowly getting better although still there. It is not on the chest or in the head, but in my throat area which makes me croakey. I am still fairly breathless overall and think it time to move to a bungalow.
However, the good news is that for the past few months by paraprotien levels have been undetectable and the consultant has just changed me to a 4 week injection regimen which is a lot more user friendly. Apart from the Elanatrab injections I have been given a host of new anti-biotics to supplement my 3 weekly infusion of Imugoblins.
The take away from this is the threat of picking up bugs remains high and with the colder months kicking in the need to be vigilant, stay active and warm.
Like all of us I just hope that this line of treatment has a longer shelf life in keeping MM at bay.
FYI, I have travelled twice by plane this year to the Med to top up the Vitamin D. The secret has been managing what I do. The sunshine is great, but the heat can wipe you out. So nothing strenuous and nothing extreme. My wife has been great in recognising when we should slow down, take a rest and hide from the sun.
As we all know life will never be the same as pre MM. But managed, this new drug is game changing compared to the previous regimen of chemo therapies.
As an aside if any of you are thinking of travelling and have had little luck with Travel Insurance look at at Staysure, All Clear and Insurance with. They are all on the web. We now keep to just Europe given shorter travelling times. Easier to get home in a hurry and the insurance is far cheaper.
All the best to everyone.
Persevere with a smile!
Hi,
It has been very interesting reading your posts and I wish all of you all the best with your treatments. My mum has multiple myeloma age 75. Elranatamab has just been given to my mum as her 6th line and sadly due to poor cognitive function after the first dose it has been suspended but in that time her kidneys are failing and the renal team do not think it is safe to do any dialysis, so we are now stopping all treatment and discharging her to move to palliative care. If you are in good cognitive state and physical strength then Elranatamab can be a very good option. However, for an older patient, weaker and mildly confused it should never been given. Now she does have much worsening neuro toxicity issues and we are hoping with steroids this could improve when home.
Thanks
Laurie I’m sorry to hear about your mum and reaction to this treatment. Hope she is getting good care and some comfort now.
My husband continues to do well on it and after 1 year,still no signs of PP. His consultant has now said he can go on monthly injections which needless to say , has delighted us both.
He feels really well and the family all commenting on how he has coped with fortnightly trips to hospital and at the same time , looking so well. No significant side effects other than tiredness for few days after the injection. Little tingling in his feet but no big problem with that.
He will remain on the IGG though, as immunity low but he is very conscious still of being in crowds especially now with flu season upon us. The face mask being worn more often now as precaution.
I hope that you are all well and wish the best for others on this treatment too.
Hi there,
Just wondering if anyone has been on Elranatamab? I am looking for some hope. A loved one has only had 8 weeks of this treatment because his myeloma relapsed & his paraprotein started to increase. Since only 7 weeks have gone by his most recent paraprotein levels have increased slightly more. Does this mean the treatment isn’t working & he should stop or should we give it another month?
Hi C
If you go through all the posts here you’ll get an idea of mine and others experience with Elranatamab.
I started last year in September and have been in remission since February of this year.
In direct reply to your query I can only say everyone will be different in terms of their speed of response as this drug uses the bodies own T cells to fight the Cancer. So it kind of depends on your body as much as the drug.
That is my very layman’s understanding of it!
So I wouldn’t necessarily be disheartened just yet.
As you’ll see in my posts it has been a wonder drug for me and others so I’d certainly give it a chance. I’m sure the consultant or nurses should be able to give you more assurances.
In terms of cancer treatment response my Paraprotein levels weren’t even checked until about 10 weeks had gone by from my very first treatment.
Also bear in mind that I’ve been told in the past there is quite a tolerance in just how accurate the Paraprotein levels measurement is, which is why one result in isolation doesn’t define a trend.
Hope this might help. I hope you and your loved one see an improvement….
Sad to read that the Elra treatment has not been successful to date.
In fairness this is the same with all the cancer drugs I have been on in the past. Some work, some don’t.
When I first started Elra I was very unwell and had to be taken off it for 8 weeks. When I restarted it was effective and my paraprotiens are now undetectable. Why the issue? No idea. I can only think my body would not accept the new way of fighting the bug and needed a little help at the outset. Now I am on 4 weekly cycles and hoping that it continues to keep MM at bay.
If your relative is not unwell then I would suggest a chat withe consultant and see if they believe persevering is worthwhile. As I say maybe a break may act like turning off and on a teccie device when it goes wrong.
There are currently two forms of Elra solutions. Both very similar. However the big news is there is a strong chance that NICE will approve a new line of immunotherapy before the end of the year which works on different proteins in the body to achieve the same result. This will no doubt be mine and other Elra patients next step when Elra has run its course.
Please ask their consultant and the Myeloma Nurse service about this new drug.
All the very best
Thank you for getting back to me regarding the treatment. I hope you both continue to do well & it pushes the myeloma back.
I feel so disheartened that the advice we were given for my loved one was to stop the Elranatamab. During the first 7 weeks, his paraprotein did increase twice, after 2 bloods were taken during the first 4 weeks & then after week 6 or 7. And from those they have decided that he is not responding to the treatment. I am gutted & feel a sense of despair. I have heard of others taking some time to respond & like you said they took your bloods after 10 weeks. I just feel it is too soon to stop but I am not a Haematologist. I was hoping to read that for some people Elranatamab became effective after 8 weeks – just to give me hope. There are no more treatments left for him & it is utterly devastating.
Hi c,
Welcome to the forum.
I wish that I could give some comfort. I assume that the option of a clinical trial for your loved one has been investigated.
Myeloma UK has a clinical trial finder:
Also, belantamab malofodin has only been approved as a treatment in the UK in the last few months. Your loved one may have had it as part of a clinical trial already, and the approval is for it in combination with other medicines that may not work any more for your loved one.
I hate the idea of giving you false hope, but nor can I keep silent if there is even a tiny chance.
Regards
Rabbit
Hi c,
A new treatment has been approved by NICE in the UK today.
It is called Talquetamab. It is a bispecific antibody treatment, like Elranatamab. However, it is also different: it targets a different bit of a myeloma cell, called GPRC5D. Elranatamab targets the BCMA bit of a myeloma cell. Therefore it may well work better than Elranatamab.
Thanks for getting back to me. Unfortunately for some reason it hasn’t been approved in Scotland. So disheartening as I am desperate for him to still have a treatment available to him.
Hi c. Been reading about your situation, so sorry it’s not going well. Have you discussed Teclistamab, another bispecific antibody drug? I started on Elranatamab about a year ago and had some side effects so switched to Teclistamab which has worked well for me. I’m in Scotland too and got Teclistamab just after it was approved last year. Don’t give up, always worth asking about all the possible options.
Penny
You must be logged in to reply to this topic.
