Tagged: RADAR
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Hi
Is there anyone else on here taking part in this trial?
Currently on week 11 of the 12 week induction chemo so interested to hear of other people’s journeys.
Hi
Sorry, just noticed your post. I was diagnosed January 2023 – high risk MM with bone lesions and compressed fractures in my back. I was admitted to hospital as an emergency as my calcium levels were dangerously high. Moved to haemotology where I was offered a place on the trial and agreed as I thought it gave me a fighting chance. I spent three weeks in hospital at that stage.
I had STC in June 2023. I was in hospital for 3 weeks and 5 days.
The “100” day recovery period was ok. My consultant told me to use common sense, dont be a hermit but avoid crowds, ill folk etc
I had a couple of infections but did not need a hospital stay. December 2023 I spent Christmas in hospital with RSV virus. I’m now on the revaccination programme, have had a couple of bad reactions but ok.
Roll onto the present and I’m on the high risk pathway for the trial. Now on the maintenance programme which is lenolidomide in cycles – 21 days on 7 days off. I go to hospital- day unit every 2 weeks and get an infusion of isatuximab (trial drug) and Zometa monthly. That’s the history bit!
I go to a myeloma support group at Maggie’s which is helpful and have a good support network, plus a husband who is my rock.
I’ve kind of accepted that the life I have now is normal and what used to be is in the past. I do have a life, a lot of coffee and cake and jaunts about.
Fatigue and my back pain are the main symptoms that frustrate me. My head is very willing!
My myeloma is “under control” and my markers are stable. I’ve never asked about numbers- I would worry too much!,
As for the trial I’m glad I’m on it. The only thing that came as a shock was I hadnt realised I would be going back and fore to hospital so often. Probably I was told but it didnt sink in.
Anyway I try and take each day as it comes. Today the sun is shining. We are off to church then after lunch will either have a walk by the sea or a drive up the glens. Nothing exciting, but it sounds ok.
I hope you are making progress and the trial will help you.
Hi
Thanks you for your lovely response and sorry I didn’t spot it sooner!
I was originally diagnosed in December 2013.
I have Sjorgren’s Syndrome. (I don’t expect you’ll have heard of it, but it’s one of those autoimmune conditions!) and inflammatory arthropy. I was having 6 monthly Rituximab infusions to help my joints. These started in 2018 and basically gave me back my life. No more joint pain although the fatigue and brain fog were still evident. The regular blood tests showed up a problem with my IgA level so I was referred to haematology. Ct scans showed nothing and I had no symptoms that I was aware of. As my levels were still rising I had another Ct scan which again was clear so they requested a bone marrow biopsy. This showed the Myeloma.
I had understood that the Myeloma was smouldering although it was still something of a shock and a lovely Christmas present!!!!
In February my husband, Martin and I went to meet my new consultant and were rather shocked to hear that they wanted to start treatment immediately!! I opted for the RADAR XV because, well why wouldn’t you. The bone marrow biopsy was uncomfortable rather than painful so the fact that I would have to have more didn’t worry me.
Unfortunately the dental check up before treatment could start showed that I needed a wisdom tooth removed. I have to admit at that point I did have a bit of a sense of humour failure, but it was all arranged through the hospital, done very quickly and I had no problems.
The 12 week induction chemo was fine.
I had my stem cell harvest on Monday and reached the sum of 5.2. Applause all round. I had a bit of a calcium crash part way through. I started feeling hot and faint. Obs were fine. So you lie there thinking I really don’t feel well, but am I making a fuss? The nurse gave me 2 calcium tablets and as if by magic I immediately felt better!
So now I’m waiting for the SCT. I have a date for reinfusion on 2nd August. It’s a bit complicated here as I live in Torquay and the harvest and reinfusion are done at Derriford Hospital in Plymouth. So I will be admitted to Torbay and ambulanced to Derriford!
Really reassured by your comments re your SCT but would like to know the really bad bits.
I haven’t been to church since starting the induction chemo. But my vicar came and gave me home communion last week, which was lovely. I’m in 2 minds as to whether to go between now and admission to hospital and would welcome your advice on that, although I appreciate that we are all different.
I have a BIG birthday coming up at the end of July and my 20 year old daughter, Sophie has arranged a coffee and cake sale at my church to raise funds for Myeloma UK. She wanted something positive to come out of my diagnosis.
I too have a rock for a husband. Where would we be without them?
My faith too means that I have felt at peace throughout. Although I am rather apprehensive about the next bit!
Thanks again for replying.
Sara
Hi Sara
Will try and answer bits. Sorry, I’m not very good at checking in on here.
Regarding church- we didnt go in person until after the 100 day period. My consultant advised against it. In the weeks leading up to the SCT I was ultra careful mainly because I didnt want anything to go wrong. Like you, I was lucky as my minister (I’m in Scotland) phoned regularly and was a great support. Also, like you, my faith is important to me. When I was in hospital I used the services of the hospital pastoral team.
As for the SCT itself the worst bits for me were the fatigue, the weariness, the brain fog and the loss of appetite. Apart from one day when I stayed in my PJs , probably around day 10, I did get up, as in washed and dressed and into my clothes, even if it was to just sit in a chair. I had no appetite at all. We had a patient fridge so my husband brought in smoothies, yogurts and anything else I fancied. The dietician came to see me. Although my appetite has improved enormously it’s still a bit of an issue – not helped by the isatuximab.
I found my concentration was rubbish but did puzzles. read rubbish and listened to podcasts. I looked forward to my husbands visits but in reality an hour was more than enough.
On an emotional level I found the actual SCT a huge anti climax. I’m not sure what I expected but for me it was a big non event! I was in floods of tears that evening.
I found the continual checking by the nurses a bit of a pest. Having said that, I was glad they were doing their obs etc but during the night it could be hard going.
Hair loss- my hair began to thin out before the SCT. It had always been thick and about jaw length. I went to my hairdresser and got it cut short- discovered I had ears!!!. The night before going into hospital I got my husband to shave my head, a decision I never regretted. After, when I was home, I had a selection of bandanas, hats etc.
On a very practical level I found PJs much easier to wear rather than nighties, or button tops etc. It made access to my Hickman line so much easier for the staff and me.
I was paranoid about my mobility getting worse so I spoke to the physios and they gave me very simple exercises I could do holding onto the end of my bed. I also devised a wee walking routine (with my stick) up and down the bay and along the corridor.
I think that’s all. I hope some of this helps. Everyone is different and all our experiences are different but I think there are some shared experiences.
I dont think you’ve too long to wait now? That waiting period can be hard. Wishing you all the best
Gillian
Hello all – this is my very first post. Male, age 59, diagnosed last week and very worried about what is to come. I have an amazingly supportive and caring wife, thank God.
I would value views on the RADAR trial.
My consultant has said that, if eligible, then I can choose between the ‘standard’ treatment and participation on the RADAR XV trial, which will mean travelling to Addenbrooke’s. I am trying to weigh up:
STANDARD TREATMENT
– Much more convenient (20 mins to Peterborough rather than an hour or more to Cambridge)
– Treatment would start very soon.
RADAR
– Need to travel to Addenbrooke’s
– Long delay before treatment starts
– What appears to be a degree of ‘personalisation’ would seem to be attractive.
I am retired so the time/travel involved with RADAR is not really a major worry.
Any thoughts? I won’t know until after a Multi-Disciplinary Meeting on Monday whether or not I am eligible for RADAR but largely due to the ‘personalisation’ I think it sounds like it may be the better way to go.
Sara, I’m on the radar trial and apart from some insomnia on steroid day, some fatigue I have been pretty much ok. I’m on my 4th chemo cycle which ends next week and see the the stem cell pre op team next week after the chemo. I saw my consultant 2 weeks ago and she said my relevant numbers had come down a lot in a good way. So I’m hopefull.
Hi bubble,
I was diagnosed with high risk smouldering myeloma in 2009 which progressed in August 2023 to multiple myeloma. I jumped at the opportunity of the RADAR trial, I had my stem cell transplant in February this year and I am now in the process of consolidation treatment. Next step is maintenance treatment which will mean hospital visits every two weeks until disease progression or drug intolerance. Currently I am thankfully in remission.
The trial will mean more hospital visits for tests and treatment, which you will need to consider. I am being treated in Derriford Hospital in Plymouth where the care I have received is amazing and I am so grateful to all the wonderful staff there. I have driven myself to the hospital for all my chemo as it is only 25 minutes from my home and I felt well enough to do so. As per most myeloma patients, I have had issues but all have been dealt with incredibly quickly. I felt for me that the trial offered me the best possible treatment available currently. I would suggest talking to your consultant and their team in depth to help you to make the right decision based on your personal needs.
Hello je64,
Thank you for your response and I am so pleased to hear that you are now in remission. My consultant confirmed that I was eligible for RADAR XV so, like you, I accepted gratefully and eagerly. Chemo starts on 28th Aug. It is a 100-mile round trip but Addenbrooke’s does seem to be where it’s all happening so I don’t mind that. Thankfully I’m recently retired. Interesting to hear that you were able to drive yourself back from your appointments. Hopefully after the first few I’ll be able to too. Just back from a 10k walk so I am starting chemo from a position of good health. Best wishes to you.
I started with MGUS a few years ago which was confirmed Myeloma in Feb 23. I am lucky in having no real symptoms before diagnosis.
I agreed to the RADAR trial and has been a positive in may respects. Access to more drugs, closer monitoring and contributing to research which will hopefully benefit others.
The induction went well and reduced my paraproteins to a very low level, Dexamethzone and the effect of steroids was the only challenge, hyper and not able to sleep. SCT in October 23 in Clatterbridge in Liverpool. I cannot speak highly enough about the standard of care. 28 days in hospital as fighting an infection. The 100 days post SCT went well then back to Chester. Another fantastic haematology department.
I am just starting cycle 10 of my maintenance treatment. I was randomised to lenalidomide 21 days the 7 day break. Probably the easiest treatment life style wise as all tablets. No significant side effects so far and paraproteins stable. Long may it stay that way.
I have to say my experience has been thinking about what is coming has been harder than the reality of the treatment. The best advice I can give is that given to me, stay as healthy as you can with exercise and diet it will put you in a good position
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