[znabParticipant]

Dear all,
I’m new to this forum having been diagnosed on 6/7/22.
I’ve been invited to participate in the RADAR (Myeloma XV/15) study and I’m not decided if I should have the standard NHS treatment or the study treatment. The difference is some of the drugs used and use of genetic risk results for treatment after SCT.
Has anybody chosen to be part of this or another study? What did you feel the benefits were?
Thank you in advance.
Zainab

[mulberryParticipant]

Hi Zainab, welcome to the forum and to the unwelcome world of myeloma.
The RADAR study as you know is looking at more personalized treatments for myeloma. In the UK at the moment all myeloma treatment follows a set protocol determined by NICE. It isn’t a poor set of treatment options by international standards, but many of us feel a more personalised approach would be better for some of us, especially those who have less favourable responses to standard treatments, but perhaps ultimately for all of us since myeloma is a particularly heterogeneous disease, and there are, perhaps, countless different variations.
It’s very difficult being asked to take part in a trial when you have only just been diagnosed with a disease, and you are on a steep learning curve about the condition and how it is going to impact your life.
However you are about to embark on what is likely to be the most important myeloma treatment, the first one.
People taking part in myeloma trials have access to the very latest drugs, and are monitored by very experienced clinicians. The drugs will have been tested initially on myeloma patients who have no other treatment options, after becoming refractory to all other myeloma drugs, so you can be confident that the drugs used in the trial are known to work well against myeloma.
Taking part may, or may not help you personally, but it is very unlikely to give you a worse outcome than the standard treatment.
From what I’ve read, RADAR trial participants will be given induction treatment comprising of 5 drugs. The current standard is 4, when I was diagnosed in 2018 it was 3, before that it was 2. It’s now known that average ‘remissions’ are longer the more drugs that are thrown at myeloma at the start of treatment, whereas a few years ago it was thought that it may be better to hold some back for treatment later on. Overall survival times are improving, and that’s down to these newer drugs, and better combinations of them.
Whether or not to take part in the trial is a personal decision. After finding out as much information as possible, you must go, ultimately, with your gut feeling on what is best to do.
I’m really pleased for the myeloma community that trials like this are taking place, but participation is voluntary!

[znabParticipant]

Dear mulberry,

Thank you for your detailed response. It’s very much appreciated. Yes, it’s been so much information to take in in a short space of time. I think I know which way I’m inclined now but will ensure I have as much information as I can before making a final decision.

Best wishes,

Zainab

[mummymoParticipant]

Hi Zainab, I was also diagnosed in June this year and have been offered a place on the RADAR trial. I’m 59 years old, otherwise disgustingly healthy and this diagnosis came as a terrible shock. I have low levels of myeloma cells in the blood (10%)and one suspected lesión on the rib which can’t be biopsies as the position makes the procedure tricky. I am struggling with the need to have treatment at all if I’m totally honest, but have come to the conclusion that, if I’m to accept treatment at all, I am better off with the closer scrutiny and newer drug combination that RADAR offers. I have never been on any medication before and this regime does seem to be using a sledgehammer to crack a nut but the standard treatment is no kinder. I’m just really struggling with the idea of being so brutal with the body that has served me so well up until now. Feels like a betrayal and just find it hard to believe there isn’t a Way to help healing without tying the body down and beating the hell out of it. I’ve signed up for the trial and am due to start treatment in two weeks …. but I certainly wouldn’t say I was utterly convinced. I think we are very early participants and it didn’t make me feel any easier that my trial nurse really doesn’t seem too knowledgable and that even my Consultant didn’t have the answer to some questions …. Made me feel a bit like a pharmaceutical company’s guinea pig. Was your experience better? Did they seem to know their stuff? More questions than answers I’m afraid! Please let me know what you decide and the reasons for your decision. Bless you on your onward journey
Mo

[znabParticipant]

Hi Mo,
Thanks for your response. It is a disease that takes a while to understand but everything has just moved so fast – information overload! This forum really helps 🙂
I decided to participate in the study. I was told that none of the drugs are new, they have all been used before, just not in this combination, so from that point I wasn’t more worried – either route will have unwanted affects. I’m being treated at UCLH in London and feel that they are quite knowledgeable about the trial, the nurses are amazing and if they are not sure will always check with the doctor before advising me.
I’ve just finished cycle 1 and started cycle 2 today. I had my 3 week review with the doctor and he’s pleased with how it’s going. So am I, paraprotein has gone from 47 to 8 in cycle 1!!! It’s different for everyone but it’s a great start for me. Side effects wise, nothing major but: tingling on hands and feet the first day but that went away (keep hydrated and I drink coconut water now too), swelling in legs and ankles (elevate legs during day/night), constipation (eat more fibre, drink warm water), tiredness/fatigue (be kind to yourself and rest when needed – I have found this hard as I don’t sleep during the day so I need to be kinder to myself!). Everyday is different.
I have bone lesions, some in the sternum so I have to wear a brace – it’s uncomfortable but with more wear I should get used to it.
I hope this helped and happy to answer any questions. I wish you all the best xxx

[mummymoParticipant]

Hi Zainab, I’m just finishing the lenalidomide on my first round and it hasn’t been too bad. Fatigue and tiredness some days but I’m managing to carry out most things I want/need to do. I’m interested to see how I feel this week without the chemo drugs. I hope you are continuing to cope well.
Kindest blessings
Mo

[znabParticipant]

Hi Mo,

I hope you’re well. Just wanted to let you know that I’ve finished the 12 week induction chemo, it’s gone well and my doctor is pleased with my response. I feel so much better being off chemo – still a bit tired but that’s okay.
I hope you’re doing well with it all.
All the best,

Zainab

[mich05Participant]

Hi zainab and Mo
Thank you for sharing. I am just starting cycle 2 , cycle 1 was a bit rocky but hoping things get better.
I hope all goes well with your next stage.

[znabParticipant]

Hi Mich05,
Everyday was very different. I kept a diary of my side effects and noticed when certain things might happen (e.g. bloating – usually in week 2 of a cycle) but I also found my side effects were worse at the start.
Wishing you all the best x

[tony642Moderator]

Hi Znab,

Unfortunately, I do not know anything about the programme you have been on, but I just wanted to say that I am really pleased for you that it has gone well for you. The tiredness will probably reduce as the chemo reduces in your body and you readjust to life without it. This is just another success story for the new lines of treatment being made available to those with the disease. Although there is no cure for it, there are many lines of treatment now authorised, or studies taking place with new treatments to help those with MM live relatively normal and productive lives, and you are a good example of that.

Stay positive and keep your chin up, and let us know how you get on.

Regards, Tony

[mich05Participant]

Thanks Zanaib and Tony
Yes a diary maybe useful to help see improvements. Definitely feeling better so far with second cycle 🤞. Hoping to go back to work for a period, but will see how it goes.
It’s encouraging to know others have completed the course and done well.
All the best.

[pandabParticipant]

Hello everyone,

I’m also on the RADAR study, week 2 of cycle 2. Cycle 1 was rough for me due to a severe reaction to Dexamethasone, my Doctor halved the dose to 20mg for cycle 2, the first week of which was much better. Unfortunately on the first day of week 2 last week I had a Zoledronic Acid infusion, this had knocked me out for the past 3 days, very much like flu but without the high temperature. Not sure I’ll be having this again any time soon!

Best wishes to you all,

Dave

[mich05Participant]

Hi Dave
Sorry to hear about your reaction . I also had the zoledronic infusion 2nd week 1 st cycle and I think due again soon. I am unsure which medication causes me the side effects. I hope you are soon feeling more yourself , I am also week 2 of 2nd cycle tomorrow. I am hoping things keep getting easier , we’re nearly half way there.
All the best.

[znabParticipant]

Thanks for your message Tony and all the best to you all.
I’ve had my results from testing (bloods and biopsy) after the induction treatment and I’m blessed to say that the chemo has done it’s job well for me. Next would be the SCT, I thought it would be 4-6 weeks after induction but looks like it might be in January. This is a long road!
I hope it goes well for you all… let’s keep each updated via this thread.

[mich05Participant]

Brilliant news Zanaib, I’m so pleased the induction has worked and spurs me on. The dexamethasone days are a little strange for me .
I was thinking how you were getting on and when SCT would be. I hope you are now feeling well though off the treatment. Waiting is tough but maybe Christmas will be a distraction . I’m trying hard to find things to keep me busy and lift spirits.
All the best.

[Author]

Posts