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
Hello Matt,
I’m sorry to hear of your diagnosis, I hope you manage to get it sorted.
With regard to swelling of the legs, I’ve not had any swelling at all yet although I’ve had just about everything else!
I’m in week 3 of the first 3 week cycle of the RADAR clinical trial, I can only describe the effects as brutal. I think my problem is a reaction to Dexamethasone which kicks in a few days after taking 40mg of the stuff.
I have a meeting with the Consultant next week with blood tests being done the day before, I’ll be interested to see if anything has improved.
Very best wishes to you,
Dave
So pleased that you have MGUS rather than anything else! There is an excellent chance that it’ll remain permanently ‘under the radar’ , I hope so. Jane
Hi Dave,
I am one of the forum volunteers. I was diagnosed 3 and a half years ago. I know exactly what you mean about the mental health issues as I have been through them. What you have to remember that although it is an incurable disease, it is controllable. I cannot comment on the RADAR trial, but I had complete kidney failure and needed dialysis, then had 6 rounds of VTD (so I know what dex is like!) and then I had a stem cell transplant. I am know in what they call remission (although it is not a true remission) and have been for well over 2 years now.
The important thing for me is that I can live a very nearly normal lifestyle and get on with doing the things I like to do. There is always hope and it is important to be in a good and positive headspace, although I know that this is difficult sometimes. This is where we can help tptry to keep you in a positive frame of mind (if you want us to!). please let us know how you get on and what you decide to do about treatment and the trial.
regards, Tony
My 4-day course of Dexamethasone knocked me out for over a week but I’m feeling better now.
I’ve signed up for the RADAR Trial although I’m not 100% sure I’ve made the right decision. I’ve been told I can withdraw at any time. I’m due to start the drugs on Thursday, I understand the first session is by way of an injection.
Dave
Thank you both for posting. Jane, your post is both reassuring and informative. Mariposa, I hope things work out for you and you get your holiday in the sun!
I spent far too much time yesterday reading about Myeloma and the RADAR trial, I think I have information overload so I’m taking a break today.
Best wishes to you all,
Dave
Welcome to the forum Dave and to the friendly company of myeloma patients and loved ones, an exclusive club no-one ever considered joining….
Getting this diagnosis shocks to the core, and takes time to assimilate. Initially it preoccupies every waking moment, but gradually that subsides and it becomes just one facet of life. One day you’ll realise that you haven’t thought about it for a few minutes, and eventually that’ll turn into hours.
When I was diagnosed (like you with little in the way of symptoms) and was told that it was “incurable but treatable” I only really heard the “incurable” bit, and believed that I was on a gradual downhill slope. That really is far from the truth for most of us, especially those diagnosed before multiple symptoms. There has never been a better time to be diagnosed with myeloma, novel treatments are being approved several times a year at the moment. Living with myeloma is like being in a steeplechase, long periods of stability and near normal life, with occasional difficult hurdles, either caused by treatment or illness. For example I’ve now had 3 years virtually normal life after a year of life turned upside down with treatment.
It’s difficult being asked to take part in a trial early on in your experience of myeloma. If you do a search, there was a previous thread about the RADAR trial.
BTW be forewarned that Dex is not called the dreaded Dex for no reason. It can easily turn night into day, give you up until now unknown ability to spend money online (one of my friends bought a sports car on impulse)and it can turn the most mild partners into volatile, bad tempered beasts. If it affects you in any of these ways, let your Dr know, sometimes doses need adjusting. Don’t suffer in silence.
Best wishes, Jane
Hello everyone, my name’s Dave and I had a Myeloma diagnosis confirmed yesterday. I’m 65 in December and considered myself to be in good health until my urine became frothy 8 weeks ago.
Initial blood tests pointed towards Myeloma, these tests were followed by a bone marrow biopsy, a full body MRI and heart scans. Physically I still feel okay, but my mental health has taken a bit of a bashing, I’ve not had any significant health problems before, so this has come as a shock.
I was given a pile of stuff to read yesterday and have been invited to participate in the RADAR Clinical Trial, I’ve no idea how to make this decision between the trial and the established NHS offering.
Today I’ve started a 4-day course of Dexamethasone to try and sort my light chain problem out as apparently my kidneys are struggling.
Thanks to you all for posting on these forums and sharing your experiences, there really is a wealth of information here.
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
dear all,
I am still on isatuximab and pomalidamide and am now into my third year of treatment (paraprotein Less than one ) last year reduced steriods .This year stopped altogether (consultant agrees no role in maintenance phase). lost alot of weight which includes muscle losss, still got cramps /tremor with pomalidamide .
so clearly my myeloma is more sensitive to isatuximab than melphelan
isatuximab is key drug in the radar trial which i would highly recommmend for newly diagnosed myeloma
best wishes michael ashton
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!
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
Hi Ken,
Hope the appointment went ok.
Just echoing what Rich and Mulberry have said, stay positive and ask as many questions of your medical team as you need to – it always helps to have a notebook handy too as there are so many new terms to get to grips with!
My dad was diagnosed in Jan 2013, and in his 7 years of remission lived a virtually normal life. He’s just going through his first relapse at the moment so we are hoping it won’t be too much longer until its all back under control and he can get back to a bit more normality, though he is still getting away on trips and getting his DIY done in the meantime. It is a very treatable disease, so now the haematology team have you on their radar, hopefully it won’t be too long until your treatments kick in. Good luck with it all and don’t hesitate to drop questions on the forum or to the infoline if you need some support xx
It certainly does. Thanks! I have now found a reference to it in the BMJ and the i, but it’s definitely in danger of slipping under the radar.
Dear Susie .
I started on isatuximab, poma and dex june 2020 under the early accces to medicine scheme and was the first person in sheffield to receive this regime . It is my fourth tx but my first proper triple regime.
I am still in remission at less than 1gm/l and am now in the maintenance phase and hence phasing out the dex hallelujah!!! (better response to my fourth covid jab and possibly makes the pomalidamide more effective ???? and thursdays are much better (TX on Tuesday))
The infusion only takes 90 minutes except in the first few infusions when you do nreed the dex ,antihistamine and paracetamol before each infusion. I had transient nasal congestion and chest felt a ittle tight before the dex kicked in and I felt suddenly optimistic which was weird I know (beginning of a steroid high perhaps??)
I have my usual muscle cramps but I had that with thalidomide and lenalidomide .
So I hope you find that reassuring .
I am a patient representaive on the radar trial for newly diagnosed myeloma patients which involves isatuximab big time and does not involve thalidomide !!
Best wishes Michael
