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
Dear ALL ,
I ve read all your threads which explains the problems of getting revaccinated after asct .But it has not been easy for all patients with myeloma to receive advice from their haematologists re when, how to fit vaccination in with treatment schedule ( I have been lucky enough to arrange steroid holidays for my last 2 jabs) etc .
Like Sachbarnes I found Anthony Nolan website helpful and indeed they had reminded both gps and haematologists about a letter in september from nhs ? re the need for arrranging a third vaccination (not a booster and that the 3rd could be given 8 weeks after the second) as part our specific vaccination programme . I ,at last , recieved two letters from the haematology dept (Not my haematologist ) advising where to get vaccinated with the letter itself the mandate for the jab itself . This was just as well .as the later gps invitation lead to a blank point refusal at a local gp flu/covid site ..”its not six months since your second jab” ;thus I went to another site where they recocgnised the letter as a need for a THIRD vaccination .
So like you all, it felt as though nobody was in charge of our care re covid protection. As an ex clinician i feel the haematologists should take on all the complications of the therapy that they arrange for their patients in the first place .( gps fight shy even before covid , 111 and A&E are far from ideal they have enough problems of their own . ) They the haematologists should have been more proactive .
However having had two jabs and being part of the Rudy study I know that my antibody level is regarded as PROBABLY adequate ( at that time) and t cell response probably inadequate .BUT although it could be worse , I do not feel protected to the maximum . Hence the arrival of azd7442 ,which enables passive protection by providing two long acting antibodies given by im injection, is of significance to us all and especially after asct .( the more antibodies you have the better full stop.)
On my other thread re the radar trial; I have pointed out to the trial clinicians that this possible protection against covid may be available after asct, wth a view to adding this option in the protocol .
Best Wishes Michael
Dear ALL ,
First of all TE= Transplant eligible
I am the patients’ representative (put forward by myleoma uk)on the steering commmittteee of this trial
Also for your information I am a retired consultant Physician .I have had myeloma for 13 years (6 years smouldering), had 2 ascts and now in my longest remission on Isatuximab/ Pomalidomide and dex. I have been on this forum many years and learnt a lot from fellow patients and sometimes hopefully reciprocated with advice.
This trial has been delayed because of covid but I think is about to launched not just in leeds or london(as on clinical trial finder) but elsewhere .
There has just been notice of an amendment to the protocol which keeps the treatment up to date and of benefit to high risk patients .
The benefits of this trial compared with Standard available therapy VTD and indeed daratumumab-VTD which nice may sanction
1)Risk STRATIFICATION early on with all high risk patients given more aggressive tx with new amendment if approved
2, multiple treatment arms with escalation for poor responders (MRD+ve) and most arms having MAINTENANCE treatment after ascts and until relapse .
3) most importantly of all LENALIDOMIDE ( not thalidomide which has been exclusively used only in the uk for the past ten years + when the usa /europe abandoned its use as an induction agent ( least effctive/most toxic but least expensive hence nice approved … see hundreds of similar views on this forum over the years )
It is a very complex trial which is difficult to precis in an email but
Every one recieves quadruple induction thrapy RCy BOR D =lenalidomide , cyclophosphamide ,bortezomib( ALSO known as V for Velcade confusing ????) and Dexamethasone ( see many threads on the problems with the bad days on dex )( high risk may have isatuximab at induction quintuple regime if new protocol adapted )
considation regimes include additional isatuximab followed by a mixture of maintenance regimes .
I could go on but I will try to help with the many queries that you will have that cant be answered elswhere on this site or you thought of after speaking to your clinician . It is lot to take in is an under statement !!!!
Best Wishes
michael ashton ( ex docmike)
ps I need to put a thread on AZD 7442 on covid prevention soon
Hi there.
I was diagnosed in November of last year, following a routine blood test that revealed I had just 12% kidney function. It came completely out of the blue, although I’d been feeling a bit ropey for a couple of months and had been suffering from achy legs. I was 47 at the time and was still breastfeeding my 2½ year old, plus I’d had a couple of tick bites in the summer, so menopause, late motherhood and Lyme disease were all on my radar! Cancer was not something I’d considered…
Anyway, my kidney function dropped as low as 10% during treatment (VTD), and dialysis was something I was really worried about.
I had my stc in July, and was petrified that my kidneys would deteriorate, but fortunately they held out. Since then they’ve slowly improved and at my last blood test two weeks ago, they were at 19%. That’s still very low, but any movement upwards is good.
I don’t really have any advice for you, but just wanted you to know you’re not alone. I still feel that I’m on very shaky ground. Dialysis would have such a huge impact on my life (in addition to the myeloma), that it’s always going to be there at the back of my mind. I have a small child and a partner who’s in the Navy, so there are logistical issues to figure out, should I ever need it.
All I can say is hang on in there, speak to your medical team, and do you have a renal consultant on board? My renal CNSs are lovely and very supportive.
Susan
Hi Becky
Sorry to hear that your dad is having problems, hope he gets sorted quickly and makes a full recovery.
The nurses on the Helpline are probably best placed to advise but I think the answer to your question is yes. In our local myeloma support group there a small number ( all men ) who have had similar problems.
I have just started treatment myself and have daily blood thinning injections of enoxaparin to prevent clots. So one assumes that this is something which the medics will have on their radar screen.
I honestly don’t know what the answer is but I try and do as much exercise as I feel I can cope with to keep the circulation moving.
Hope this helps
David
Myeloma Patients Europe (MPE) and Amgen are launching a survey for European myeloma patients to understand their information needs and would be very grateful if you would take the time to complete the anonymous survey.
The results of the survey will provide valuable insight into the needs of patients and will be used to inform the information provision strategies of a wide range of stakeholders, including pharmaceutical companies and patient groups. MPE, and its members, will also utilise the results of the survey to inform their advocacy and campaigning strategies which aim to improve the experience of patients across Europe.
To access the survey please click on this link: – https://www.medicalradar.com/ims/ws/benchmark.php?id=133&code=ws5ce7e5815a65f1.06979506
Hi Richard,
Good to hear your good news on the light chains, and that you sound like you are moving forward day by day.
Doing OK my pp measure has been coming down so haematology doctor seems pleased. In terms of side effects the peripheral neuropathy has improved. Still have some back ache, I think some of it is also psychology in that I worry about getting another fracture.
I am going into the treatment centre on Tuesday to have a Pamidronate infusion (I think it has a similar objective to Zometa in terms of trying to strengthen the bones) which I am to be having once a month. I am into cycle 3, I had one at the start of the chemo when I was in hospital but can’t remember too much as that was a bit of a blur.
Glad you are keeping active, I do sometimes find it difficult going from an active lifestyle (work, running around after the kids, taxi driving service and sport) to being restricted by the impact of MM and wearing my spinal brace and being mainly at home alone. I am trying to do a bit more day by day without overdoing it. I like your idea of setting yourself goals.
My trip into London to UCHL went OK. It was mostly about informing me about the process for the STC treatment though I am at least a few months off this at least given I am starting cycle 3, but it is good that I am on their radar.
Completely agree watching 6 Nations not quite the same without a pint in your hand.
Wishing you all the best
Rob
