Hi Everyone,
As I haven’t done an update for a while I thought I’d do just that.
The news is all good. My paraprotein levels continue to stay below recordable levels and even the itchy skin issues I had, have reduced to very manageable levels. I have to apply Cetraben cream every 2-3 days to keep it that way but thats it!
I continue to have Elranatamab every 2 weeks without issue and the only time I have any side effects is when I have my monthly “helping hand” treatment of immunoglobin. It seems to make me feel exhausted and “under the weather” for 24-48 hours after treatment. Of course it might also have something to do with it taking about 4-8 hours from start to finish!
So for anyone worried about this treatment, I can only speak from my own experience, but compared to the 4 previous treatments I had, this one for me has been extremely effective and with minimal (easily manageable) side effects.
I wish everyone the best of journeys through their treatment and hope you all have similar outcomes to mine.
Dave
Hi Anne
I had SCT in October 2022, and only finished my main inoculations in August 2023.
Although I still have to have some further “boosters” at I think 5 years.
I effectively had all my childhood vaccinations again! Flu and covid were treated as separate issues.
This was in England and was all done by my GP surgery nurse.
Good luck
All the best
Dave
Hi Penny
Sorry to hear about the rash. I too have some skin problems but I’ve been able to keep them in check through creams.
Mainly Cetraben, which I had as a legacy from skin problems I had after my Stem Cell treatment a year or so ago; I’ve also been using Hydrocortisone cream around the injection site, prescribed by my GP to minimise the itching sensation.
With regard to my treatment “holidays”, once I
was well enough they just recommenced treatment as usual with the same weekly dosage.
So far due to illness I missed two weeks last year but they weren’t consecutive and then I missed two consecutive weeks over the Christmas period.
After each break I simply restarted with treatment as usual without any ill effects. It also seems from my paraprotein results, the two single weeks had little effect on the effectiveness of the treatment. Of course I don’t know if it would have been even better had I not missed the 2 weeks!
I won’t know if the two consecutive weeks I missed over Christmas will have had an effect for a couple of weeks as I’m not due a blood test until February.
What I can definitely confirm is restarting after missing 2 weeks had no effect on me and certainly I didn’t need to be admitted to hospital to “start from scratch”.
I’ll let you know when I get further information on what happens to my paraprotein levels.
I can however tell you I feel very well (for me) at the moment and certainly don’t feel like I’ve gone backwards.
If you want any further details from me please don’t hesitate to let me know. I’m only too happy to help if I can.
In the meantime good luck with sorting the rash and I hope you can simply restart as I have done.
All the very best,
Dave
Hi Trish/Penny
So pleased to hear both of you have great news, it certainly seems from our very small sample that Elranatamab is proving to be a “wonder drug”.
Unfortunately I managed to catch a cold that developed into a chest infection and cough a couple of weeks before Christmas; this then meant I missed treatment on Xmas eve & New Years eve as, despite me feeling OK, they wouldn’t risk it while I was taking antibiotics.
I managed to shake the infection and I restarted treatment last Tuesday.
They assured me this shouldn’t really have any effect on the efficacy of the treatment but I’ll find that out at the next blood test results due in a couple of weeks time.
If it doesn’t have any effect, it does then beg the question, why do we need to have weekly treatment?
Will wait and see results before raising this with my Consultant but Trish, I’ll be interested to hear what your experience is around having a treatment holiday for your husband?
Certainly my team have told me to miss a week or two won’t make any real difference.
Good luck with everything.
Best wishes
Dave
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
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 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 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.
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
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…..
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
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.
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.
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…..
