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I was diagnosed a year ago but have refused treatment. I do have bone lesions but no pain and lead a very active life. I am very physically fit. Since diagnosis, my immune system is lower and I’ve had pneumonia earlier this year. My reluctance for not having treatment is because I feel once I go down that road, I won’t be as well as I am now and the possibility of side effects of the drugs. I really would like to hear others views on my decision as I am concerned as I may be acting foolhardy and would welcome any advice.
Hi Eltry,
Whilst I would hesitate to describe your refusal to have treatment as ‘foolhardy’, I didn’t seriously consider that choice for a moment.
You mention that you have bone lesions. They are being caused by myeloma cells eroding the calcium in your bones. This would be continuing at this moment, and at some point the erosion will reach the point when bone pain will start.
The calcium in the blood is a lot for your kidneys to deal with: at some point your kidneys may fail. Treatment can prevent or reverse this.
Meanwhile the myeloma cells are reproducing. As the myeloma progresses from Stage 1 to 2 to 3 (there is no stage 4), your prognosis gets worse.
As for chemo side effects, they are generally an issue, yes, but some patients are affected more than others.
Personally, I want to be around for my family for as long as I can. As for side effects, they have not always been easy, but my chemo was recently tweaked to deal with fatigue and brain fog that had been problematic lately. There are lots of treatments out there: if the side effects of one are severe, you can be switched to another treatment.
I am physically fit too, and routinely walk long distances, cycle intensely in the gym and lift weights.
Regards
Rabbit
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
I was diagnosed after collapsing with 2 vertebral wedge fractures. I had no idea that I had Myeloma. I also had complete kidney failure and spent 12 days on ICU and then 5 weeks in hospital. I had always been physically fit and had an active life. The confinement of being in hospital and not being able to do anything was killing me. Even when I got home, I was housebound and my capabilities were very limited. I felt I had no choice but to have treatment, specifically a stem cell transplant, as for me, for the rest of my life to be the way that I was, was not a life worth living, and therefore to not have the treatment was not an option. I am now almost 6 years post-diagnosis and do not regret having treatment one bit.
Regards, Tony
Did anyone have trouble driving when undergoing treatment?
Yes as I had so much pain in my sternum.
This actually improved tremendously after SCT but I did have to buy an automatic car.
The pain has gone now and I in remission.
I will always be on maintenance as I’m high risk but am feeling good
Hello are you still on here? I’ve just been diagnosed and offered RADAR, I don’t know wether to stay with tried and tested or try the new regime, only found out yesterday
Hello, I don’t go on here often mainly because I have no idea how it works!
I did have an email tho with your question.
Yes I was on the RADAR trial right from when I was diagnosed. I felt so closely monitored and the specialist team were absolutely brilliant. I had my transplant Sept 23 and then after the 100days continued on maintenance. Life felt pretty normal for about a year.
Then I was told in June 25 that my numbers had been rising for the previous 3 months and so I’d relapsed and had to come off the trial.
I have to add that I was on the high risk pathway of the trial.
I guess I decided on the trial as I wanted to get the very latest available treatment and I sensed that my consultant and team really thought this was best for me.
It’s so hard isn’t it to make such a decision when you’re still reeling from the shock. I think I went along with what I thought sounded the most promising, and I’d read of people with very long remissions.
I would still join a trial given the opportunity
Have you tried the peerbuddy system on the myelomauk website? This is where you can speak to someone on the phone or zoom who has already gone through what you are doing. You can discuss how they are living with the disease and what coping mechanisms they have to deal with it all. I can highly recommend it.
Tony
Have you tried the peerbuddy system on the myelomauk website? This is where you can speak to someone on the phone or zoom who has already gone through what you are doing. You can discuss how they are living with the disease and what coping mechanisms they have to deal with it all. I can highly recommend it.
Tony
Hi jk118 ! Thank you for taking the time to reply, lovely to hear from you, that’s a journey isn’t it, sorry that you had relapse! How are you now? What happens with a relapse please? Do you still get more help? Hope you are doing ok x
Thank you Tony, I’ll take a look, I’m just trying to navigate through the site x
Hello, yes I chose to go on the new Blenrep treatment that has just been approved by NICE in June. Unfortunately this didn’t work for me so I am now on a salvage treatment called DT-Pace before I need to choose another line of treatment in 3 months.
It is making these decisions that feels so huge but we can only take advice and do the best we can.
When first diagnosed the shock of it all is tremendous and the more I learn the more pressure I feel to make an informed decisions.
Listen to your team but remember that literally no two people will go down the same road, there are so many good treatment options out there now.
I felt so well on RADAR, I only wish it had kept me in remission longer, as other people have.
I feel supported by a wonderful consultant and specialist nurse team.
I am one of the peer buddies who speak to people like yourself. There is a team of us. When you apply, the person who coordinates it tries to match you up with someone who has already gone through what you are going through, and you can get the benefit of their experience.
As ofr treatments, 25 years ago there were none for Myeloma, but things have come on tremendously since then, and there are now lots of options.
They are called ‘lines’ of treatment. You start off one one line, and maybe than go on to have a stem cell transplant, which will hopefully put you in partial remission, which means that no treatment is necessary. However, the nature of Myeloma means that it will come back at some point in the future, but yuo don’t know how long that will be. For me it was 3 and a half years. When it returns, then you go on to another line of treatment, and so on.
My cancer came back about 18 months ago, but I was given traetment to deal with it, and I am now on what is known as a maintenance dose of chemo, which just keeps a lid on it and it is quite stable now, so thats great as it allows me to do all of the things I want to do, and I can probably do 90% of the things that I ued to do before I was diagnosed.
If you struggle to find the peer buddy link, scroll down the website, and on the left, you will see a box called ‘get help’. In there, click on ‘peer buddy service’. In there it tells you what the service is all about and how it can help you. If you think you would like to try it, fill in the Peer Buddy Referral Form. You will probably be connected with a lovely lady called Denise, she will sort you out. If you have any problems, please let me know. I wish you well. Regards, Tony
I am one of the peer buddies that speak to people like yourself. There is a team of us. When you apply the person who co-ordinatrs it tries to match you up with womeone who has already gone through what you are going through, and you can get the benefit of their experience.
To find the link, scroll down the website, and on the left you will see a box saying ‘get help’. In there, click on ‘Peer Buddy Service’ and it will tell you what it is all about. If you think it could help, click on the ‘Peer Buddy Referral Form’ and fill it in. You will probably be connected with a lovely lady called Denise, who will match you up with a member of the peer buddy team who she thinks can help you the most. This is called triage, and the person you speak to will know exactly what you are going through as they will have gone through something very similar themselves. I wish you luck.
Kind regards, Tony
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