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
Hi Debbie, welcome to the forum and I think you had the right approach to ignore the blood tests when MGUS but you appear to be one step further now so, again, you have the right approach to delve (at your own pace) a bit more into the world of MM. Must say didn’t know it could affect your sight so something new for me also. I was diagnosed at 50 with only 10% bone marrow but it nearly wiped my kidneys out so always bear in mind MM is unique to you and no two people are the same. My consultant on diagnosis (in a very critical way) could not get to grips with the extent of damage with only 10% but it is not unheard of so your GP is on the ball to arrange the skeletal survey. If x-ray only you have to have a fair extent of damage to show up so PET scans etc are better – if you can get one. You obviously have light chain MM, like me, and the significance of the ratio is when out of ratio it is a good indicator that the MM is active and can cause damage. The normal ratio is 0.26 – 1.65 so you are out of ratio. If you know your kappa/lambda numbers the normal range is kappa 3.3 – 19.4 and lambda 5.71 – 26.3. You will have one that is excessively over producing and affecting the ratio – that is your type of MM – I have lambda. The good thing is that you are on the radar and they will be testing regularly so you can always start treatment before significant damage occurs – just make sure you get all the tests available. There is a good info sheet on here about the free light chain testing which you will have to monitor your progress. With only 10% in my bone marrow I had a course of treatment followed by an SCT – am currently on the cusp of 3 year s remission. I would suggest you get a copy of your bloods each time and monitor your own progress but bear in mind light chains can bounce around abit so it is the trend you are looking for rather than individual results.
Best wishes, Rebecca
Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in kidney failure for 6 months with all failure symptoms but my Dr diagnosed labyrinthitis (ear infection! tut) – this meant my kidneys could not recover fully and am at 32% now. I am 2 1/2 years post transplant and living life totally as normal as before except with the “dark cloud” following me around- for me MM is more mental than physical. I was diagnosed at such a critical stage and I left the hospital just before xmas, without any literature (my choice) and did not dare look on the internet until xmas night and then the realisation started. I don’t mind saying I spent a long time grieving for my lost future – or the future I had planned, torturing myself about my daughter left motherless (on par to self-harming). It took me a long time before I could start looking up information etc – it was all too raw. This is a natural process, you have had one hell of a bombshell obliterating your life as you know it and it takes time to recoup, accept and move on as best you can. You must allow yourself this time and go at your own pace as it won’t effect anything – you’re not going anywhere and the MM is now on the medics radar so concentrate on you and your families needs now..there is no need for panic mode. What I can tell you is that this is not going away any time soon so formulate your battle plans – and by this I mean you and your wifes coping strategies as this is one rollercoaster ride and a real mind ****. Your MM has responded to first treatment which is a positive sign and you have lots of treatment available as and when you need them. The “double edged” positive is you are young – now this does not sound right because Mm is for the seniors not us young folk and I would totally prefer to have developed it at 70 (ave age) when my daughter is settled and I could accept it more but… you have more choices…you will be offered an SCt but will always have the Allo/mini allo transplant as a trump card if you want to treat it aggressively ( My kidneys were too damaged unfortunately). I am 3 1/2 years since diagnosis and still (touchwood) in remission and each year they are learning more and developing more treatments so try and consider this as a chronic condition. When you look on the internet the stats are not very relevant now as they are based on a time scale when the new novel drugs were not available. Drugs are improving, life spans are improving.. there is hope. If you really delve into the web – I would suggest the US myeloma beacon – you will discover people living well with this for many many years – yes there are also those who aren’t but what I would like to stress to you that MM is very individual and hence you are not that statistic, not that average life span, you are unique and whilst they may predict your outcome they don’t know. I have high risk cytogenics (this is not good – predicted aggressive, difficult to treat on average) but I was easy to treat and am 2 1/2 years post SCT ( higher than the ave 18 months) So whatever you read I can tell you of those who buck the trend because it is so individual. My advice to you is recognise your life has changed, decide how you want to forge ahead and arm yourself with coping strategies- note I am not saying literature, research etc because that’s the medics jobs your role now is to cope well with it all as a family and so this is where you energies should lay. Try anything and everything and see what works – mindfulness, to me , is the key along with relaxation techniques or hard exercise – adrenaline buzz (tho sometimes difficult on chemo!) Sorry, I am rattling on whilst drinking champagne, won at my daughters leavers sixth form ball….when diagnosed I worried so much I would not see her through her GCSE’s and when I did I hoped to see her through her A levels and now I believe I will see her through her degree! I know you will be looking at your daughters and torturing yourself with “what ifs” but this is so very very harmful and you must learn to block those thoughts as they are draining away much needed positivity. When you have such thoughts turn them round and think “well if I am going to die how do I want them to remember me?” and focus life on living, laughing, loving “Life is 10% what happens to you and 90% how you react to it”. As soon as we are born we are all going to die it’s just that MM brings it to the forefront of your mind and we are not used to this. Remain positive as you can do this – you will have your course of chemo to get you in remission and this will be strengthened by an SCT – 3 months recovery – and you’ll be back. I won’t say you will be back to normal as this is undoubtedly life changing and during the course of your treatment you will, I hope, decide how you want to live your life and prioritise what is important to you so in the end you live a richer life if not bitter-sweet.
Rebecca
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Hi Lynne,
I am sorry you have not had a reply. Where indeed do you start? Whilst I cannot advise you about your husbands condition I would just like to say that I too am going down the AMY path with LCDD- Light Chain Deposition Disease My kidneys are affected & I feel lucky not to have any other organ involvement yet. I am sorry they have found Amyloid Deposits in so many of his organs. I too have now attended the Royal Free for 2 appts six months apart to have SAP Scans, ECGs, walking test, etc. etc. . He must be feeling very poorly, and I wonder why on earth this hasn’t been picked up before now. Whilst Myeloma is very rare, Amyloidosis & LCDD are even rarer- yet all come under the same umbrella. I have just finished my 6th cycle of Velcade, Cyclo & Dex. Yes its been tough but I have got through it, and am now awaiting discussions for a SCT. Have the Royal Free discussed an SCT with you both after the chemo treatment?
The Royal Free are terribly efficient. I feel very lucky to be under their care, and it gives me confidence for the future as should Amyloids deposit in my organs- I am under their radar as indeed is your hubby. I sincerely hope you also have a proficient local consultant.
Sadly I have yet to actually connect with anyone else who has LCDD. But as it all comes under the same umbrella I read and educate myself as much as possible in all areas- LCDD, Amy, Myeloma. I have watched some extremely informative videos on the Myeloma channel. Afterall I may develop any of these in addition to LCDD. I hope this helps, It is a very difficult/frustrating journey- accepting the diagnosis, coping with the treatment BUT you will eventually reach a calmer place. Another Myeloma buddy advised me to break life down into chunks. I find this helps, I no longer feel able to plan ahead, but try and deal with how I feel on a morning/afternoon basis. I guess I now live in the present and take pleasure from the small things in life……..
All the very best with your husbands treatment, Sharron
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Hi Helen.
I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.
So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol
A holiday home too. That sounds a great idea might even suggest something like that to Steph since we’re creatures of habit going to regular places. Have you somewhere in mind? Though I’m determined to keep our Greece trips going as long as medically possible. Are you planning on buying a holiday cottage outright or a share in one? Hope I’m not being too nosey 😉
Ok back to things medical. I’ve still not heard from the Professor I guess I’m not on his radar yet. Though my consultant says she’s pestering him. I see what she says when I se her in April.
London is a long way to travel for a trial! I thought Nottingham was going to be a trek when the Prof. mentioned trials to me in 2012. How were your last bloods?
Wowzer it’s 9am already guess I’d better get moving drugs to take, breakfast to eat and believe it or not dinner to prepare. Thankfully I’ve got plenty of anti sickness drugs lol.
Hope everything is ok.
Every day is a gift.
Love Andy xxx
Sorry to have dropped off the radar for a while. My time in hospital post-SCT was much harder than I had expected.
I felt very unwell at times with a swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. For reasons unknown I had my dreaded hiccups back (normally comes with steroids), my temperature went up to 37.7 and my blood pressure down to 90/60. The nurses dealt with all of my issues but we never got on top of diarrhoea.
I’ve been home 3 days now and although I still have no appetite, my sore throat is very gradually feeling better, hiccups have gone but diarrhoea is still an issue. I’m having a full review on Thursday so I’m hoping for some good news about my blood recovery.
