Tagged: Elranatamab
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Thank you all for your updates, I appreciate it is not easy to update these while going through new treatment.
I need to make my decision re Elranatamab in the coming weeks and your updates have been particularly helpful.
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
Thank you. I’ll continue to follow this link. I’m feeling this treatment is a god send in the myeloma journey and so far I’ve heard mostly positive results from the consultants. Hoping my husband can tolerate any side effects. Only 2nd day but all seems good.
Good evening trishanny,
Glad to hear all is going well for your husband. My treatment experience with Elranatamab seems to be going well so far,after the initial stages, I have described in a previous post. I continue to get on reasonably ok with my normal life. The weekly visits to the hospital for my treatment are not a particular problem and I feel very lucky to be able to receive this treatment. The only side effect that I have currently is that my immunity levels are low. Consequently I have had 2 Covid sessions and I currently have a cold, caught from my lovely granddaughter! It means that I continue to wear a mask when I’m out and about with lots of people around, such as shopping etc. I’m still on strong antibiotics and have received a couple of injections which boost the white blood cells and Neutrophils. Other than that I feel fine.
I hope all goes well for your husband and everyone else who is receiving Elranatamab.
Best wishes,
Terry
Davepr This evening my husband had the same episode as you had after first dose yesterday. Shivering and generally unwell. He had the drips, possibly ones you mentioned and certainly feels a lot better now. Sleepy only. He’s going to have chest X-ray to check lungs clear. How is your treatment going now? Thank you Terry , Penny and Dave. All your posts have clarified the process for me and with this knowledge I feel I’m able to support from a more informed manner.
Hi Trish
Certainly talking to staff at Stoke Mandeville Hospital where I’m getting my treatment, of the few people they have that have started with Elranatamab all have experienced very similar symptoms to your husband and me. I am sure that is why the first treatments have to be done in the hospital under supervision.
I haven’t posted recently as I’ve had a couple of issues that meant I missed 2 treatments from my first cycle.
However despite that the good news is my paraprotein levels went down from 34 before treatment to 14 at the end of the first cycle (despite missing two treatments). This compares to the previous “standard” Chemo regime I was on, where they only dropped from 36 down to 34 in 6 months of treatment.
Of course this is just one result in isolation and I don’t want to get carried away but it can only be seen as something seems to be working….
I should get another update in a couple of weeks.
Other than that I can report that after each weeks treatment the side effects seem to get less and now even my skin seems to be tolerating the injection with only minimal inflammation.
The only other thing of note is that part of my protocol is that they give me some immunoglobin once a month and I did have a reaction to the last lot but it appears that this maybe because they didn’t give me any premeds (antihistamines are recommended). I ended up shivering uncontrollably and with severe kidney pain. Once they administered the antihistamines I made a recovery in 20mins but it was a bit worrying for a while….
If anything else happens of note I’ll post it here. Good luck to all on treatment I hope you see the same positive reaction that I’ve seen so far.
Thanks Davepr. And brilliant news on the paraproteins dropping so significantly!!
It’s so reassuring to hear that my husband’s symptoms are not unique otherwise I would be thinking he wasn’t going to be able to tolerate. I can fully appreciate now why this has to carried out in hospital for closely monitoring these reactions and treating appropriately.
Since his first chem jab on Tuesday he has suffered bouts of high temperature , back pain and shivering. Slight platelet drop. Last night again he was closely monitored and had an ECG. But this morning he’s well settled again. All positive news. The plan now is to get the 2nd jab Monday.
He has been on immunoglobulin monthly since having pnemonia twice. He did have bad reactions at the start but they slowed the administering of it and seemed to do the trick. Tiredness afterwards for a day or two.
I’ll update as treatment continues.
Wishing you all well on this journey.
Trishananny – thanks for keeping us updated. Really good to read that your husband has settled again and can have his 2nd jab on Monday.
Wishing you and your husband all the best on this journey.
Hi again. Just a quick update. My husband got his 2nd dose of chemo on Monday and has had no bad reactions at all. Apart from the usual tiredness. The consultant said his bloods were all showing good and planning his next 3rd chemo on Friday.Its good to see no side effects this time as results from other patients seem positive and obviously hearing this, he’s keen for the treatment to continue. All going well , he should be home next Monday. This allows for any reaction to be treated in hospital.Ill update after Friday. Hope all well and thank you again for sharing your own journeys.
My mum recently had elranatamab as a second line treatment. She had the first 3 doses in hospital, only side effects were a very very mild temperature one evening, she coped exceptionally well. Her light chains to start were 39,000 and 19,000 before starting this treatment after the first 3 doses they were 2.9 and without any further doses over the last almost 2 months it’s continued to drop to 1.8 so the drug has pushed her into complete remission. However it has caused heart damage and this is now something we are having to deal with. Our professor has said that upon speaking to Pfizer he has discovered that 21% of people have cardiac issues on elranatamab however many of those may be minor. Unfortunately for my mum it’s not minor and it’s caused significant heart failure. He is now investigating why cardiac issues weren’t listed with the drug originally and has reported the case to the MHRA. It’s been a wonder drug with regards to the cancer but she is struggling with the heart issues and has been told she can’t have anymore of the elranatamab, so if the myeloma came back it would not be an option.
Hi All,
Just a quick update on my status.
I had some great news yesterday and that is my paraprotein levels have dropped again down from 14 in mid October to 4 at the end of November.
So I can categorically state that the treatment is continuing to work very effectively.
Really the only side effects I currently have are to do with my skin. Around the area where I have my injections the skin is a darker red and is dry to the point it gets very flaky. I’ve recently noticed the skin behind my knees and on the palms of my hands is also very dry.
A good moisturise with some Cetraben cream seems to sort the issue temporarily but I think it’s going to be an ongoing battle.
So in summary for anyone reading this doubtful about this new treatment, I can say that for me it has been a revelation – much less side effects than Chemo drugs and so far much more effective!
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.
My husband restarted his treatment on Friday after a few weeks off it, due to being sick and nil appetite causing significant weight loss. Along with this he has been very fatigued and spending a lot of time in bed sleeping.
However on Friday it was great to hear that his para proteins had reduced from high teens down to 4 and seemed to have stayed low while off the treatment.
So now 3 days later he seems to have no after effects of Fridays treatment.
The only downsides he seems to have are:
1) Extreme tiredness and weakness
2) Reduced appetite
3) Dry peeling skin on hands and feet. Given Dermol 500 lotion to treat this
4) white cells reduced but now on Nivestim injection weekly and continues to get monthly IGG.
5) anti sickness tabs twice daily to stop nausea and sickness
We are obviously delighted with the reduction in proteins . My husband doesn’t complain about the tiredness and believes he’ll get his strength back as time goes on and gets used to Elran. He has been house bound more or less since starting the treatment and not inclined to drive as yet.
Has anyone any thoughts on the weakness/tiredness or given supplements to help this?
Thank you.
Hi Penny,
Glad to hear your paraprotein levels are down too, I don’t know about you but it feels to me that the results of being on this drug are nothing short of miraculous!! After 3 years of being on treatment it seems to be the most effective with the least side effects….
Interesting to hear your consultant thinks the skin issue could be the cotrimoxosol. I’ve been on it for about a year now without issues but of course I’ve also had other meds where I’ve suddenly developed a reaction so it could be that. I’ll be interested to see if it recurrs after you recommence.
However the skin reaction does seem to be quite a common reaction to the Elranatamab…..for me it’s a small price to pay for such an effective treatment.
Hi Trish,
Great to hear your husband’s paraprotein levels are down.
I haven’t had any specific tiredness as a result of my treatment.
I have however been generally much more tired since diagnosis (3 years ago) so I think it’s the cancer rather than the treatment! If I sit on a comfy chair I’m prone to dosing off and I’ve gone from someone who only needed 6 hours sleep a day before diagnosis to needing 8-10 hours now, sometimes more.
All I can suggest for your husband is definitely get him to take in some fresh air every day. Even if it’s just standing outside the back door, I have found that getting some fresh air in my lungs does wonders for me, especially with tiredness.
I’m lucky as we live very close to a field that I can walk to with the dog, and I can just about make it round before my back pain gets too bad. It does, however, mean that I feel so much better afterwards.
I have to dress up in multiple layers and have invested in heated gloves to prevent getting too cold, but the benefits for me are well worth it.
Good luck with it all.
Dave
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