Hello I am a newbie. I was diagnosed with MM in February 2025. I was put on the Radar trial of ISA-VRD. I had the initial intensive treatment but was lucky enough to only suffer fatigue. I have subsequently had a stem cell transplant and was MRD – after 100days. I am now on maintenance treatment and have ISA every 2 weeks. I am still in remission.
gcParticipant
Hi.
I was diagnosed with high risk MM in January 2023. I had SCT in June 2023. I’m on the Radar XV trial and now on monthly maintenance. I have lytic lesions and compressed fractures in my back so bone pain has always been an issue. I take slow release morphine and pregabalin but am very reluctant to increase the dosage.
I have noticed on other forums and websites people advocating Clarytin as a n aid to bone pain. I haven’t discussed this with my consultant. I’m interested in this and wondering if anyone here as heard/ read about it?
Thanks
GC.
gcParticipant
Hi
I am on the Radar trial and have been on monthly maintenance since October (2025). I too have tolerated lenalidomide and isatixamub well until recently. I found that since October the side effects have gradually increased. I’m not sure but I think it coincided when they increased the rate of the isatixamub infusion.
However my bloods are still good and according to my consultant ” the myeloma markers are stable”. I’m in the high risk group so that’s all I need to know for now.
Last week I had an interim appointment with the day unit. The registrar sent off various samples and swabs to rule out underlying infections. They called yesterday and all ok. My consultant said he would discuss options with me when I have my regular treatment next week and ” there’s always something we can do.”
I feel reassured by the team at the hospital who are always available.
At the moment my inclination is to stick with the maintenance plan as long as it is controlling the myeloma but we shall see.
I’m not sure this is very helpful for you Ian but I guess it shows we are all different even with the same treatment.
Having said all that I try and lead as full a life as I can.
Hi,
Anyone else on the Radar Trial ? I have recently been moved to four weekly maintenance treatment, which is a good thing, I think.
I have always tolerated the infusion of isatuximab really well, but the last three infusions have kind of landed heavy later in the same day as the infusion, tiredness feeling a little unwell nothing to concerned about currently
I was just wondering if anyone else has had the same experience.
Thank you
Ian
I saw the private Consultant today who happens to do some NHS work as well.
The Consultation was the difference between night and day.
He explained everything in great detail including the importance of the biopsy.
He also is organising a full body MRI within two weeks.
My spine one shows lesions, but not serious in terms of the structure.
He said he has many patients who he looks after they have lived about 12 years plus.
Plus he spoke about his RADAR trials.
Hi
Wondering if anyone is in a similar situation as I am regarding travel insurance.
I am on the RADAR trial from when I started Myeloma treatment—-that was in 2022.
After induction therapy,stem cell transplant and immunotherapy I’m now in remission , which is brilliant—and have been for 2 years . Since then I haven’t been on any treatment just monthly monitoring of bloods
We would love to travel more but so difficult getting insurance. The stumbling block seems to be that I’m on a trial,even though I’m well and independent. We last went on family visit to USA when All Clear insured but it cost £2500 for annual cover. Many companies wouldn’t insure as I am on a trial
Has anyone else encountered these problems of being involved with trial and trying to get reasonable travel insurance
Best wishes Pauline
.
Afternoon boisvert.
I hope that you are as well as can be expected.
I’ve got a couple of questions to ask regarding where you are at currently.
1 – What was the trial drug that you were taking with Lenalidomide?
2 – Since leaving the trial and the support given by the Nurse, have you hooked up with any MacMillan Nurses?
The reason I ask about your trial, is four years is good going! I was on the Myeloma XV (RADAR) trial and had to withdraw, after two cycles, as I was refractory to Lenalidomide, which I’m sure you know is one of the main Myeloma maintenance drugs. I then went on to have two cycles of VDT-PACE, prior to two Autologous Stem Cell Transplant (Yes, I like doing things in twos).
When my Paraproteins began to increase again, my Consultant said that she would like me to start Belantamab Mafodotin regimen (One of the first patients to receive this in Lincolnshire County Hospital Trust).
The bottom line is, you must not feel alone! My Consultant, the MacMillan Nurses, Myeloma UK literature, and forums such as this, have all been invaluable and should all be able to support you as needed.
I have just started Cycle 3 (of three weekly trials) and will be keeping people informed on how things are progressing and any challenges I personally encounter along the way.
Several things that I have found is:
My cycles are three weeks long and require several day trips per week, to the hospital.
You will be required to have a baseline eye test and subsequent follow-up checks at the end of each cycle
The Dexamethasone may well play havoc with you sleep pattern (although you possibly know that from your trial.
Kind Regards,
Pedro
Hi Nordic.
Sorry for the delayed response!
I see that like me you had to drop out of the RADAR Trial too. I did, because I am refractory to Lenalidomide, so I’ve not been able to revive this as a maintenance drug, since I received my two SCT’s. You’ve mentioned side effects and a SCT. When did you have this, or have you had two?
I’m on day nine of my second cycle. This started with NO Belantamab Mafodotin infusion, just the Velcade (Bortezomib) and Dexamethasone (understandably, Christmas and the New Year, have also had an effect on what I’m being given) I will say that the Regimen I’ve been given, does vary from the one you’ve referenced Nordic, as mine is EIGHT (8) months of three-weekly cycles including the Velcade and Dexamethasone (if it works) before I go onto cycle nine onwards, which is just the Belantamab Mafodotin, as a three weekly maintenance infusion.
On another note; I have now copied a form that I was given initially for side effects, as I do have a tendency to unintentionally, miss some more minor side effects.
One I am suffering from is a lack of sleep as I’m getting anywhere from two to four hours (if I’m really lucky) a night. I’m now typing this at 02.15! I have mentioned that I’m also getting sore (itchy) eyes to the Nurses proving my chemotherapy, sometimes this is a lot worse than others. This is important, due to the potential side effects of Belantamab Mafodotin and I will talk to the Ophthalmologist, when I see him on the 2nd of January.
Anyway, please keep me and others posted on how things progress. And finally, the best of luck with your future treatments.
Pedro
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This reply was modified 3 months, 2 weeks ago by
pedro16.
I just started on 1st Belantamab Mafodotin along with velcade and dexamethasone over a weekly course of 6 months(if no problems) after Radar trial drugs stopped working for me. Hopefully this new treatment will provide a longer remission time, been told this can be a least 3yrs So far have had no signs of any side effects of this new treatment. I hardly never had much much of any sides effects apart from some fatigue from all treatments chemo and then Stem Cell Transplant since April 23.
Hi Rabbit.
Removing the carving knife from me at Christmas, would entail someone having to wrestle it from me. That said I might invest in a butchers apron and cut proof gloves. 😂
The Belantamab Mafodotin means that I’m having three weekly checks on my eyes and have to have drops in them four times a day. I suppose it’s good news as it has been caught early, but the Ophthalmologist believes that I have the early stages of Glaucoma. Oh well, it’s just another ailment to add to the list.
With the low platelet count, below ten and they said that they would infuse me, but as my last blood test result showed an improvement (24) I was ok. The second cycle there’s no Belantamab Mafodotin, just Bortezomib and Dexamethasone. You could be right with what you said about the platelets and it’s something that I will ask my Consultant when I see her next.
I do know that NICE have been very specific about treatment breaks and when treatment will be allowed to continue, or stop.
I’ll try to keep you (and others) updated as I get further into this second regimen of eight three weekly cycles. Then it the ninth onwards just Belantamab Mafodotin as a maintenance. Well, that’s if it works for me, as I am rather problematic (had to withdraw from the RADAR Trial, Refractory to Lenalidomide, two stem cells transplants giving me eighteen months) it seems never ending, but I’m not about to give up!
Pedro.
Hello, yes I chose to go on the new Blenrep treatment that has just been approved by NICE in June. Unfortunately this didn’t work for me so I am now on a salvage treatment called DT-Pace before I need to choose another line of treatment in 3 months.
It is making these decisions that feels so huge but we can only take advice and do the best we can.
When first diagnosed the shock of it all is tremendous and the more I learn the more pressure I feel to make an informed decisions.
Listen to your team but remember that literally no two people will go down the same road, there are so many good treatment options out there now.
I felt so well on RADAR, I only wish it had kept me in remission longer, as other people have.
I feel supported by a wonderful consultant and specialist nurse team.
Hello, I don’t go on here often mainly because I have no idea how it works!
I did have an email tho with your question.
Yes I was on the RADAR trial right from when I was diagnosed. I felt so closely monitored and the specialist team were absolutely brilliant. I had my transplant Sept 23 and then after the 100days continued on maintenance. Life felt pretty normal for about a year.
Then I was told in June 25 that my numbers had been rising for the previous 3 months and so I’d relapsed and had to come off the trial.
I have to add that I was on the high risk pathway of the trial.
I guess I decided on the trial as I wanted to get the very latest available treatment and I sensed that my consultant and team really thought this was best for me.
It’s so hard isn’t it to make such a decision when you’re still reeling from the shock. I think I went along with what I thought sounded the most promising, and I’d read of people with very long remissions.
I would still join a trial given the opportunity
Hi, this has come completely out of the blue after routine blood test, my paraprotein was 31.14 kappa igG and my mri and bone marrow biouall clear, it’s my FLC that has surprised them at 275,, so they are having a MDT meeting today to see if I would benefit from treatment, I’ve been given booklets for the RADAR trial, and don’t know wether to go for that or standard protocol,, I hear daratumbab is great but it’s not on the trial? And there is more info about survival rates on that, than
On the RADAR, I’m so scared
Hello are you still on here? I’ve just been diagnosed and offered RADAR, I don’t know wether to stay with tried and tested or try the new regime, only found out yesterday
Hello to everyone,
I’m a 53 y/o male who was diagnosed with an MGUS about 18 months ago, after routine blood tests. I’ve since been having regular blood tests and visits to see my consultant.
In August of this year, I started having rib and back pain and a few infections that were difficult to shift. After several tests, it seems things have progressed and I was diagnosed with Myeloma on the 24th October, so relatively recently and it’s all been a bit of a whirl!
I start my induction treatment on 14th November. I’m naturally a little apprehensive as I’m not entirely sure what to expect, but the consultant and nursing team have been fantastic so far. I’ve also signed up to the RADAR trial.
I’ve been lurking on the forum for a while, but thought I’d better sign up and say hello, as I’m sure I’ll have questions in time – although I’ve found lots of helpful information here so far, so a big thank you to all that post here.
I look forward to being able to contribute to the forum as I progess through my journey.
R.
