Tagged: Elranatamab
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Hi Chris and others reading these posts.
I’m glad you’re finding it useful.
Just another update
Thankfully I received my second dose yesterday on effectively my day 7, although it was actually officially my day 4 dosage but due to my reaction on dose 1 it was of course delayed which wasn’t helped by the weekend when they won’t give the treatment as full support networks aren’t in place.
So far so good but then that was the same on dose 1 it was 36hrs before I showed any signs of a reaction.
For those of you interested on dose 1 the exact “recovery medications ” they gave me were.
Both IV
Tocilizumab 8mg/kg
Methulprednisolone
Not exactly nice snappy names that trip of the tongue but as I put in my earlier post very effective.
According to the doctors if I spike on second dose they’ll use the same again.
At this stage they’re reluctant to tell me when dose 3 will take place whether I spike tomorrow or not but I’ll update this post when I do know.
As I put earlier if anyone has any specific questions they would like me to answer (or that I can pose to my Doctors) please just ask in a post…..
“As I put earlier if anyone has any specific questions they would like me to answer (or that I can pose to my Doctors) please just ask in a post…..”
If Davepr or anyone else can help me, I would be grateful.
– Are you in isolation or can you move about the hospital (and beyond?)?
– Is there a plan, maybe some months ahead, to reduce the dose frequency from weekly?
Thank you.
Regards
Rabbit
Hi Rabbit
No, I’m not in isolation in fact I’ve been down to the cafe in the hospital several times with visitors and once on my own to treat myself to a cooked breaky on Sunday for only £2.60….
The only requirement for me to move about the hospital was that I wore a mask as the treatment does mean the immune system is particularly low.
I hope that answers your questions. I’ll post again once I get clarification on that final point and hopefully to say there’s been no reaction to 2nd dose and I’m finally going home.
The plan is, if I do go home tomorrow, I’ll come back on Friday for dose 3 and then commence weekly doses next week.
The treatment plan I have is as follows
Day 1 12mg
Day 4 32mg
Day 8 76mg
Day 15 76mg
Day 22 76mg this concludes cycle 1
Cycle 2 to 6
76mg on days 1,8,15,22
Cycle 7 onwards
76mg on days 1,15
So in summary first 24 weeks treatment is weekly then beyond that it goes to every two weeks.
Then on the notes it says to continue every 2 weeks “until disease progression or unacceptable toxicity” which I have taken to mean things have worked or things haven’t worked and treatment has become toxic.
Having reread it now I realise I should have got some clarification on that. I’m going to double check with the doctors tomorrow on that point.
Sorry I don’t know what happened above but some of the paragraphs are not in the order in which I typed them – hopefully it still makes sense……let me know if not.
Thank you, Davepr. That’s very informative. I am jealous about the £2.60 breakfast!
Just to clarify, are you allowed outside for a walk? I get restless (it’s just my nature).
Regards
Rabbit.
Hi Rabbit
There were no restriction on where I walked, certainly I took the opportunity for a little stroll around outside when I went to the cafe but unfortunately I suffer back pain during walking so it wasn’t far…
Regards
Dave
Thank you very much for the info!
An update on my current treatment
Second treatment was administered on Monday and I had no issues Tuesday but Wednesday I did wake up early hours with some fairly significant back pain from around the kidney area. To the level I found it difficult to walk.
However the doctors weren’t too concerned and it did seem that paracetamol gave some relief although I still had some pain it was greatly reduced by the paracetamol.
One of the doctors I spoke to suggested that this was a sign the T cells were doing their job in attacking the cancer cells.
The end result was they ended up discharging me late in the evening yesterday, so I’m now home.
The good news is the pain levels seem to have settled out overnight and are now livable with.
One other “side affect” that maybe worth mentioning is on both treatments the site of where the injection has been, has looked really inflamed – it isn’t, it is just really itchy and resisting giving it a good scratch is testing my powers of restraint. One of the instructions on the protocol is “DO NOT press or rub the site of injection”.
It isn’t exactly easy to keep to this as the injection is administered around your waist area. I found having elasticated PJ bottoms and trousers allowed me to keep the waistband below the injection site without them falling down! That, combined with a nice baggy shirt left untucked.
I will be going as an outpatient tomorrow (Friday) for my 3rd Treatment and will report back…..
Good evening,
My apologies Dave for not answering your query about the effectiveness of my treatment. I wanted to wait until I had had my appointment, with my Consultant, to review my progress so far. I was extremely pleased to hear that my paraproteins are dropping and I’m doing very well so far. My WBCs and Neutrophils are low at the moment, but apparently that’s very common with Elranatamab. So everything’s looking good.
I hope your treatment is going well.
Best wishes,
Terry
Hi Terry
That’s great news to hear.
After all, reducing paraproteins is our ultimate goal…
I too had a lowering of my Neutrophils down to below 0.2 after just the first treatment. They gave me an injection and they have subsequently gone up to over 3 which the doctors are now happy with.
My treatment seems to be going according to plan and while I have had a couple of minor setbacks it seems that they are all ones that are expected.
I’m just crossing everything that I end up with a similar result to you.
3rd treatment will be later today and then I’m on weekly treatments for 24 weeks…..
All the best
Dave
Hi Terry
That’s great news to hear.
After all, reducing paraproteins is our ultimate goal…
I too had a lowering of my Neutrophils down to below 0.2 after just the first treatment. They gave me an injection and they have subsequently gone up to over 3 which the doctors are now happy with.
My treatment seems to be going according to plan and while I have had a couple of minor setbacks it seems that they are all ones that are expected.
I’m just crossing everything that I end up with a similar result to you.
3rd treatment will be later today and then I’m on weekly treatments for 24 weeks…..
All the best
Dave
I’m now on day2 in hospital. Got my first dose of 12mg yesterday pm. So far no ill effects except that ‘dex’ feeling from the 20mg in the pre-med mixture. It’s been a while since I took steroids but it all comes back to me now…
Only other moan is the tiny breakfast. One weetabix won’t keep me going long!
Hope the rest of you are doing well. Interested in any updates.
Dave, Penny, Terry et al, thank you so much for your openness regarding your experiences to date.
I was diagnosed in 2015. I am coming to the end of my current line, with elran being mooted as the only option now available to me. I have been in two minds whether to take this treatment – to explain, all decisions I have made throughout my myeloma journey have been that quality of life is more important to me than quantity. I absolutely hate being in hospital, my anxiety goes through the roof, so as you can imagine any treatment requiring more hospital attendance or the prospect of it due to side effects are big negatives for me. So with little detail out there, your detailed experiences have been particularly useful to me and any continued updates in the coming weeks will continue to be invaluable.
I wish you all the very best with your Elran journeys.
Hi All
Update from the Highlands on my Elranatamab start up. First dose gave me a grade 2 CRS, sudden vomiting and big blood pressure drop, but well dealt with and stabilised quickly. Felt grotty for next week with bad headache and not eating. Once I’d recovered, helped hugely by a few days at home, I was back in on Monday to start again. No reaction this time, nor to second dose received yesterday…so far so good! Hoping to be done with this phase by middle of next week.
Weekly trips for injections wont feel much of a price to pay if it gives me a couple more years of relative normality. So grateful for this drug. Have you seen how much it costs!!
Hope everyone doing OK.
Penny
Hi and thank you for these updates on all your journeys with elran.
My husband started his today and we’re trusting that it will do the job on knocking those paraproteins.
Would this be seen after the completion of cycle 1 or earlier? I’ll update on his progress as time goes on.
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