[deansiephillipsgmail-comParticipant]

I would like to know are there any runners on this site having read an article in my ‘ runners’ magazine about an Asian runner who is her mother’s carer now and they have completed a marathon together as hermum is a Myeloma patient . I hope I have not caused any offence by asking this question. Have a great day everyone x

[rabbitParticipant]

I read it just a couple of days ago!

It was a bit of a shocker coming across a mention of myeloma (which I have) while reading during a cycling workout in the gym. I did have to put it away for a few minutes while mentally getting myself together again.

I used to be a runner – trying to will myself into getting back to it again. I am not really succeeding!

Regards
Rabbit

[najmahParticipant]

I was a runner until my diagnosis in May. When I say a runner, more of a jogger really in the last few years but I liked getting out in the fresh air and letting my mind wander while I ran along the footpaths or along the nearby sea front. It was really through running (and going to the gym) that prompted me to make my initial appointment at the doctors. I started to feel pain in my hip and lower back while running which made it increasingly difficult to run. I was quickly diagnosed with Multiple Myeloma. So really I suppose I could say I had a quick diagnosis because I was fit! Because I have two disc end plate fractures I can’t run right now and I really miss it, I do go out every day and walk one of my running routes, I enjoy it but it’s not the same!

I hope you get back into your running Rabbit. I never liked the spin classes at the gym but maybe I should try them again when I’m a bit further into my treatment. Do you find your back is OK on the bike? I suppose the big plus of cycling is that you are not pounding on your feet and putting impact on your legs and back.

[rabbitParticipant]

I am pretty lucky in not having bone lesions. I started resistance training over 20 years ago, and that meant that I built up a lot of bone as well as muscle.

I was also a runner (5k to 10k was pretty routine) and cycled regularly in the gym.

When I was being diagnosed and had my first bone marrow biopsy, the doctor commented “you have strong bones”, but as I had not even heard of the word myeloma at that point, I didn’t realise the significance.

During treatment, I was too fatigued to exercise beyond struggling to walk a little. By the time I got into remission, I had lost a huge amount of weight and a lot of it was muscle.

I restarted proper exercise as soon as remission started, but I was so weak! Rebuilding my strength and stamina took so much willpower, but week by week I made progress.

Nowadays I lift weights* and cycle as much as before my diagnosis. For example, the cycling these days is typically an hour flat out, while reading (generally health magazines to ‘brainwash’ myself into keeping going 😀) and listening to music.

* I had the explicit approval of a specialist physiotherapist before I progressed back to the heavy weights.

Meanwhile, on non-gym days I aim to walk at least 10km.

Coincidentally, I ran around the town centre today. It’s only a small town, but it’s progress!

Regards
Rabbit

[najmahParticipant]

Hi Rabbit (I’ll ignore fmi2317, why do these strange posts appear?).
Thanks for all of that helpful info. I’ve done resistance training and weights for a long time, mainly in the form of a Body Pump class two or three times a week and also Body Combat 3 times a week. All of that has stopped for now. I’m looking forward to going into remission so I can perhaps start again. As you say I will get the approval of my consultant or physio before I embark on any form of exercise other than walking.
As a matter of interest how long into your treatment were you told you were in remission?

[rabbitParticipant]

Hi najmah. My treatment started in January 2023. I was told in June 2023 that I was in ‘effective remission’. However:
– Unlike most people, I didn’t have a stem cell transplant.
– My haematologist said that I responded unusually well to treatment. Looking at my past blood test results, I suspect that I was actually in remission a month or two before, but nobody told me!

Regards
Rabbit

[najmahParticipant]

Thanks Rabbit, you must have been so pleased after six months to be told you were in effective remission. I’ve been told that so far I’m responding really well to my treatment so I’m keeping everything crossed that the end date of treatment on my schedule (August 2028, so far away!) can be shortened.

[rabbitParticipant]

Hi Najmah.

It was a relief to be in remission for the first few months, especially as it meant that my fatigue eased gradually.
(However, I am high risk so I didn’t expect remission to last anywhere near as long as it has).

That meant the Bortezomib/Velcade stopped, but the rest of the DVRd has kept on going in maintenance (although the Revlimid/Lenalidomide was stopped 2 years later due to increasing side effects).

My reading up suggests that your Isa-VRd is similar, that the Velcade would stop on your remission, with the rest continuing as maintenance. Is that right?

Regards
Rabbit

[swertresParticipant]

It’s encouraging to read about everyone’s experiences with staying active during treatment. Wishing you all continued strength and steady progress in your recovery. Stories of returning to exercise, even gradually through walking or light activity, are truly inspiring and offer hope to others going through a similar journey. Take care and keep supporting one another.

[najmahParticipant]

Hi Rabbit,

I’m not sure but I think you are right. I seem to remember my consultant telling me initially that on remission I would be given Lenalidomide if I was a standard risk patient but possibly be given Isatuximab too. As I say that was said at my initial consultation and I didn’t take all of that in as I was more concerned at the time on what my actual treatment would be and how soon it could begin!

Nice to read your post Swertres. I’m really glad I found this discussion board, it’s so good to ‘speak’ to people in the same boat and to hear of their experiences and also have their advice.

Regards,

Najmah

[Author]

Posts