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.
gcParticipant
Hi. My situation a wee bit different. I was diagnosed 2023 and had stem cell etc but never achieved full remission. At diagnosis MRI and CT showed compressed fractures and lytic lesions. I am on the radar trial and now on a maintenance programme of Lenolidomide 10mg for 21 days and an infusion of isatuximab every 4 weeks. My myeloma markers are stable…long may that continue.
However my back pain worsened. My consultant reassured me it was not my myeloma but it could be another lytic lesion or just the ones there becoming more active. I could have done something to aggravate my back. We decided not to ?have another MRI as if it is lytic lesions they couldnt do anything as my bones are bad.
Having said all that I manage to lead a pretty full life- a bit different from my old one but I do live life.
I hope you can get some answers and wish you well.
gcParticipant
Hi
My situation is different to yours as in I’m older, now 70 and dont have children to worry about.
I had my stem cell transplant in June 2023. I’m high risk so as expected I didnt receive full remission. I have bone damage, bone lesions and compressed fractures hence a bad back…but I’m glad I went ahead with the transplant. Im on the RADAR drug trial so am still under close supervision.
To answer some of your queries.
I had almost shoulder length hair which I got cut short…discovered I had ears!!! I had a wig which I didnt like, it was itchy so got a selection of headgear- theres a big choice online. However when my hair began to thin and fall out I shaved my head and didnt regret it but I can understand that might be scary for your kids.
My consultant isnt keen on supplements as in pills or vitamin pills etc.
However I asked to be referred to the hospital dietician who was very helpful with tips of what to eat etc.
After the recovery time post SCT I went to a couple of nutrician courses at my local Maggie’s centre, again very helpful.
This past while I’ve been making home made smoothies to try and boost my immune system. Personally I dont like veggie/ green ones but really enjoy fruity ones.
I use some fresh fruit but often bags of frozen fruit from the supermarket. I make them with either fruit juice (not from concentrate) or coconut water. I have no scientific evidence they work but I feel good and touch wood my propensity to catch a cold seems to have diminished.
Good luck with your SCT – everyone is different but personally I think if you listen to your own body, that’s a good guide. My only other piece of advice is to take any help on offer either from friends and family or professionals
Take care.
Hi
Thanks for your reply. Sorry for the late response I was waiting until we had his appointment. He is now classed as ultra high risk as he has 2 high risk – gaining of 1q and FDFR which when I have looked is t 4,14, so it sounds very similar. He starts the RADAR trial in 2 weeks.
gcParticipant
Hi Dazz
I am on the Radar XV trial. I am high risk so on that pathway. SCT did not give full remission but it did help.
I was then put on maintenance treatment of 10mg lenalidomide for 21 days and a week off and isatixamub via a drip.
I was given this weekly for 12 weeks then reduced to fortnightly. In November this was reduced again to monthly.
My bloods have remained stable and myeloma markers have also been stable. My back gives me gyp but that’s a separate issue.
I had no significant symptoms other than
The day after treatment I get a bad headache
I sometimes get flushes- bit like the menopause days!
I do have a day- usually 2nd after treatment where I am like a rag doll.
All of the above have been easy to cope with and worth it.
Now, on monthly there was a slight increase in symptoms but the rate of the infusion had been increased. My team adjusted it and so far so good. Not having to travel to hospital so frequently has been great- can plan a wee bit further ahead.
Everyone is different but I hope some of this helps.
ggParticipant
HiBrewy
I had my sct cancelled due to a severe reaction after 4 cycles on the RADAR medical trial. This was supplemented with a further 4 cycles of chemo in which because I wanted have the lenalidomide I had to provide that myself privately as the NHS would not supply it as part of my ongoing treatment.
result was a success, I have now had 13 months of full remission and things are still good.
My consultant was very keen for me not to take any maintenance drugs whilst in remission as the concensus was that the effectiveness of lenalidomide as maintenance will gradually reduce and by the time I get to the first relapse it would be totally ineffective, thus removing an important drug which would be part of the regime for the relapse treatment.
Like you things are good for me at the moment, and long may it last.
Take care and I hope things stay good for you.
Hope this helps,
Graham
Hello,
I was diagnosed completely out of the blue in March 23. No real symptoms other than pain in my sternum that I attributed to cleaning windows and blood tests to check why I was anaemic.
I never considered not having treatment as I was diagnosed high risk from the outset and began treatment within 3 weeks.
I am on the RADAR trial.
The induction phase took getting used to, the side effects did get better, and I had SCT in Sept 23.
I have to say that that for me the shock was way worse than the reality (so far)
I was in hospital for for 25 days and then stayed home for a few weeks.
I went back to work 2 days a week in Jan 24.
My treatment has just gone from 2 weekly to 4 weekly and it is so liberating, life is good. I’ve just booked my dream holiday to South Africa on Feb 5.
This cancer is so individual and no two people go through it the same way.
I’m so good at forgetting tough times and I know there were a few but so many more good times than bad.
Good luck, I firmly believe that being on the RADAR trial means I get excellent treatment and care
Hi Jon,
The home page on this forum has a search function: mentions of the RADAR trial are here.
https://forum.myeloma.org.uk/forums/search/Radar/
Regards
Rabbit
PS I am not myself on the RADAR trial.
PS anyone heard about a RADAR trial?
gcParticipant
Hi
I am high risk MM. I’m on the RadarXV trial. I had a stem cell transplant in June 2023 but there was still some myeloma lurking. Things have been stable since.
I’m now on monthly maintenance which involves Lenalidomide (10mg) for 21 days, an infusion of isatuximab and Zometa both monthly.
Just recently I have been experiencing the most awful rumbling in my stomach. It is very loud and very audible! It’s not sore but it is embarrassing! It’s quite intermittent and I cant work out the trigger. I cant work out which of the medications and which combination if any are to blame.
I will discuss it with the team on my next visit but I’m just wondering if anyone else has experienced this. Just needing reassurance this is another wee hiccup to deal with!!
Thanks for reading.
It took a hospitalisation for my diagnosis despite several trips to GP so seems positive that the GP has been able to get this identified. I’m in the RADAR trial which will likely be explained to you, broader treatment options than standard NHS. Ask about it if they don’t mention it.
