gcParticipant
Hi
My situation is different to yours as in I’m older, now 70 and dont have children to worry about.
I had my stem cell transplant in June 2023. I’m high risk so as expected I didnt receive full remission. I have bone damage, bone lesions and compressed fractures hence a bad back…but I’m glad I went ahead with the transplant. Im on the RADAR drug trial so am still under close supervision.
To answer some of your queries.
I had almost shoulder length hair which I got cut short…discovered I had ears!!! I had a wig which I didnt like, it was itchy so got a selection of headgear- theres a big choice online. However when my hair began to thin and fall out I shaved my head and didnt regret it but I can understand that might be scary for your kids.
My consultant isnt keen on supplements as in pills or vitamin pills etc.
However I asked to be referred to the hospital dietician who was very helpful with tips of what to eat etc.
After the recovery time post SCT I went to a couple of nutrician courses at my local Maggie’s centre, again very helpful.
This past while I’ve been making home made smoothies to try and boost my immune system. Personally I dont like veggie/ green ones but really enjoy fruity ones.
I use some fresh fruit but often bags of frozen fruit from the supermarket. I make them with either fruit juice (not from concentrate) or coconut water. I have no scientific evidence they work but I feel good and touch wood my propensity to catch a cold seems to have diminished.
Good luck with your SCT – everyone is different but personally I think if you listen to your own body, that’s a good guide. My only other piece of advice is to take any help on offer either from friends and family or professionals
Take care.
Hi
Thanks for your reply. Sorry for the late response I was waiting until we had his appointment. He is now classed as ultra high risk as he has 2 high risk – gaining of 1q and FDFR which when I have looked is t 4,14, so it sounds very similar. He starts the RADAR trial in 2 weeks.
gcParticipant
Hi Dazz
I am on the Radar XV trial. I am high risk so on that pathway. SCT did not give full remission but it did help.
I was then put on maintenance treatment of 10mg lenalidomide for 21 days and a week off and isatixamub via a drip.
I was given this weekly for 12 weeks then reduced to fortnightly. In November this was reduced again to monthly.
My bloods have remained stable and myeloma markers have also been stable. My back gives me gyp but that’s a separate issue.
I had no significant symptoms other than
The day after treatment I get a bad headache
I sometimes get flushes- bit like the menopause days!
I do have a day- usually 2nd after treatment where I am like a rag doll.
All of the above have been easy to cope with and worth it.
Now, on monthly there was a slight increase in symptoms but the rate of the infusion had been increased. My team adjusted it and so far so good. Not having to travel to hospital so frequently has been great- can plan a wee bit further ahead.
Everyone is different but I hope some of this helps.
ggParticipant
HiBrewy
I had my sct cancelled due to a severe reaction after 4 cycles on the RADAR medical trial. This was supplemented with a further 4 cycles of chemo in which because I wanted have the lenalidomide I had to provide that myself privately as the NHS would not supply it as part of my ongoing treatment.
result was a success, I have now had 13 months of full remission and things are still good.
My consultant was very keen for me not to take any maintenance drugs whilst in remission as the concensus was that the effectiveness of lenalidomide as maintenance will gradually reduce and by the time I get to the first relapse it would be totally ineffective, thus removing an important drug which would be part of the regime for the relapse treatment.
Like you things are good for me at the moment, and long may it last.
Take care and I hope things stay good for you.
Hope this helps,
Graham
Hello,
I was diagnosed completely out of the blue in March 23. No real symptoms other than pain in my sternum that I attributed to cleaning windows and blood tests to check why I was anaemic.
I never considered not having treatment as I was diagnosed high risk from the outset and began treatment within 3 weeks.
I am on the RADAR trial.
The induction phase took getting used to, the side effects did get better, and I had SCT in Sept 23.
I have to say that that for me the shock was way worse than the reality (so far)
I was in hospital for for 25 days and then stayed home for a few weeks.
I went back to work 2 days a week in Jan 24.
My treatment has just gone from 2 weekly to 4 weekly and it is so liberating, life is good. I’ve just booked my dream holiday to South Africa on Feb 5.
This cancer is so individual and no two people go through it the same way.
I’m so good at forgetting tough times and I know there were a few but so many more good times than bad.
Good luck, I firmly believe that being on the RADAR trial means I get excellent treatment and care
Hi Jon,
The home page on this forum has a search function: mentions of the RADAR trial are here.
https://forum.myeloma.org.uk/forums/search/Radar/
Regards
Rabbit
PS I am not myself on the RADAR trial.
PS anyone heard about a RADAR trial?
gcParticipant
Hi
I am high risk MM. I’m on the RadarXV trial. I had a stem cell transplant in June 2023 but there was still some myeloma lurking. Things have been stable since.
I’m now on monthly maintenance which involves Lenalidomide (10mg) for 21 days, an infusion of isatuximab and Zometa both monthly.
Just recently I have been experiencing the most awful rumbling in my stomach. It is very loud and very audible! It’s not sore but it is embarrassing! It’s quite intermittent and I cant work out the trigger. I cant work out which of the medications and which combination if any are to blame.
I will discuss it with the team on my next visit but I’m just wondering if anyone else has experienced this. Just needing reassurance this is another wee hiccup to deal with!!
Thanks for reading.
It took a hospitalisation for my diagnosis despite several trips to GP so seems positive that the GP has been able to get this identified. I’m in the RADAR trial which will likely be explained to you, broader treatment options than standard NHS. Ask about it if they don’t mention it.
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
Hi Emma
I am on the Radar trial, I had my SCT last September, and currently on a maintenance regime. If you read the paper on the trial there are various routes that your dad could be placed on, this will depend on the bone marrow results as these are randomised, unless the patient is classed as genetical high risk, which I ‘am.
As you stated everyone’s journey is different but for me it has been really good so far, no worse than the induction drugs, I had 12 weeks similar to the induction at the start of the year and now on fortnightly treatment, which is an infusion on day 1 & 15 and 21 days of tablets then a free week; this regime was selected, as I have mentioned, as I am high risk.
Good luck for the journey ahead.
Ian
Hello everyone
My first time posting.
My Dad got diagnosed with myeloma in January and started on the radar Trial. He’s now up to his 100 days post transplant and we are waiting on results of his bone marrow to discover what’s next.
Just wondering if there are any other people on this radar journey who can share what the maintenance regime is like please?
So far, he has responded really well and he is now back to doing his normally fault routines – golf and spending time with his grandson.
I’m just a bit nervous with what is to come. My Mum also had myeloma. She had a pretty rough ride after transplant as her myeloma came back within 6 months. I know everyone’s journey is difficult but sometimes it is hard not to compare especially when you’ve already lived that life with a parent with myeloma. Their diagnosis journey was different, Dad was diagnosed very early with hardly any symptoms and my Mum was extremely poorly by the time she was diagnosed. Then she fractured her femur and her mobility deteriorated. Their treatment journey has been very similar – induction drugs and then stem cell transplant. Mum didn’t go on a trial when she was diagnosed and there was no maintenance treatment either. My Mum died in February 2021.
I’m just hoping that my Dad continues to have the quality of life as life got extremely hard for my Mum especially after she broke her femur.
Thanks for taking the time to read.
Emma
Hi
I was also 49 when diagnosed with a fracture in sternum and went on the radar trial and still on it now. Roll on nearly 2 years and I am well, working full time, back running and pretty much normal life. I am on maintenance treatment now A little tired now and again but nothing to stop me doing daily routine. Although it was a scary time at start you soon settle into a new normal and i just cracked on with the treatment taking each step at a time and ticking each stage off. I managed to work most of the way through just finishing before stem cell transplant and back after 3 months. You will get through it and back to pretty much normal living in the end!
Happy to answer any questions.
Hi,
I was hospitalised 4 weeks ago having collapsed at home. The collapse was caused by a fractured vertebrae in my back and while in I was told I have myeloma. I was in hospital for three weeks, have been accepted in the RADAR trial and chemo began last week. Today is day 10.
My issues started last year with what I thought were gym related issues with my ribs. Although this summer I had presented to my GP and requested blood tests and also A&E where there was unfortunately no xray was taken as it was assumed this was a sporting injury. With what I’ve learned over the past three weeks I’m certain I could have ticked the majority of myeloma symptoms in June or July this year so a little frustrating not to have been picked up prior to my collapse.
I am 49 and I’m really keen to speak with fellow myeloma patients around my age to understand a little of the journey. What expectations should I have about a normal life, the adjustments that we have to make and how people have dealt with the process.
I’m blessed with some wonderful friends and family but being able to understand the experience and perspective of someone similar age with myeloma would be really helpful whether through here or any signposting to a particular support group.
Thanks for reading.
Anonymous
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.
