[misterboyParticipant]

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.

[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

[trishanannyParticipant]

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.

[terrysParticipant]

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

[trishanannyParticipant]

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.

[daveprParticipant]

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.

[trishanannyParticipant]

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.

[misterboyParticipant]

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.

[trishanannyParticipant]

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.

[nicoleParticipant]

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.

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