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M45 and I found out in March that it was likely Myeloma. It’s now been confirmed as stage 1, standard risk and my haematologist has mentioned hyperdiploid genetics. I’ve got 15% bone marrow involvement and the only thing that really flagged this was an MRI on my back which showed a fractured L5.
Other than that I feel pretty healthy, I’m planning to take my son to Barcelona in a couple of weeks before the treatment starts so that we can get away. It looks like a 4 drug regimen for me of DvTD plus a bone strengthening agent and then onto the ASCT. I strangely feel lucky that it’s been caught early and unlucky for being diagnosed.
I’m still exercising 4x a week and walk about 15000 steps a day but I’m wondering how induction therapy will hammer my routines.
Hi ap003 and welcome to the forum.
I have learnt a lot of myeloma jargon since my diagnosis in 2022 but I had never heard of ‘hyperdiploid genetics’! After a quick bit of reading up, it seems to mean that you have extra chromosomes, a subcategory of chromosomal abnormalities (I have different, and more adverse, chromosomal abnormalities).
DVTd plus bone strengthening drug plus ASCT is the norm in the UK for the newly diagnosed.
The side effects of DVTd on people vary hugely. I can give you my experiences, especially as you exercise a lot and I used to (and still do), so I’ll emphasise the impact there.
Before diagnosis: cycling in the gym, heavy resistance training, running, walking. Generally doing a fair bit of exercise 7 days a week.
After treatment started: fatigue hit me hard after a couple of weeks. I stopped going to the gym (out of sheer bloodymindedness I didn’t suspend my membership!). Stopped running too. Forced myself to walk as much as possible, though it was a huge effort. Fatigue also meant that I had a daytime nap almost every day.
After 6 months of treatment (no ASCT), I got back back into the gym, as fatigue was just starting to reduce. I am a very tall man, but even so, losing 16kg – largely muscle – meant that when I restarted it was from a low point in terms of cardio fitness, muscle and stamina.
You say that you ‘exercise’ 4 times a week. I suggest that you get advice if that means resistance training, yoga and/or Pilates, to make sure that your bones can take it (I got the go ahead from a specialist physiotherapist).
It took a lot of willpower and another 6 months, but I got back to where I was on everything except running (my body doesn’t want to know – it doesn’t bother me).
Sorry if that sounds scary, but it’s only one person’s experiences. You are also younger than me and that should help you a lot.
Enjoy your holiday. I recommend the Sagrada Familia, the interior is simply incredible!
Regards
Rabbit
Thanks Rabbit, the L5 fracture has put a stop on the running so it’s just using the bike in my garage plus weights I have in there.
I think that mine is standard risk but I’m aware that that’s something which can change over time if my myeloma mutates or becomes more treatment resistant too but ultimately that’s out of my control. How old are you if you don’t mind me asking? I’m assuming that’s the reason for not having the ASCT?
Also congratulations on your remission too, wishing you many continued healthy years!
Hi ap003,
The cycling is very good: non- weightbearing, easy to stop if you get fatigued, and it can be as intense and as long as you want and are able (I would say that after an hour going flat out in the gym earlier today!). I did hear about someone with myeloma who was cycling all around the British coast.
You asked about why I didn’t have a transplant. It wasn’t my age: I am still in my fifties, which is plenty young enough. A couple of years before, I was diagnosed with a dodgy heart. It’s genetic, I have had a healthy lifestyle for decades. My cardiologist and my haemotologist discussed me and agreed that the transplant would put strain on my heart.
In addition, as chemotherapy has been improving, the advantage of a stem cell transplant are less than it used to be. However, it is still the standard UK approach.
Regards
Rabbit
Hi ap003,
You are young to be diagnosed with Myeloma so hopefully they have caught it really soon and your treatment will go well. I was diagnosed in April and I’m on IsaVRD.
I’m 73 but have always been fit and very active, I usually run once or twice a week and go to a gym class every morning, I do Body Pump, Body Combat and Body Balance which is a mix of Tai Chi, Pilates and yoga, and I had also just started reformer Pilates. All of that exercise actually helped me in my diagnosis as I was finding I was getting pain in my hip when I ran, body pump was hurting my back and I couldn’t even do the downward dog in body balance because it hurt my lower back so all of that prompted me to go to the doctors and I had a very quick diagnosis from there.
So I suspended my gym membership as I knew I just couldn’t do the classes. I do hope to resume them depending on how the treatment works. So I just wanted to ask Rabbit how he felt getting back into exercise and was 6 months the kind of benchmark time that you felt it was right? Did you build it up gradually? I have a L3 fracture and a tumour at the base of my spine so that will explain the pain on exercise. I’m fine with walking though and try to get out for an hour every morning. I do miss my classes but I know right now I’m not capable of doing them. I know you said cycling is good and there is a spin studio at the gym, I did try it but I hated it! So apart from walking and cycling have you any advice on what I should start with on going back to the gym? ( I know I’m looking ahead but it’s good to make plans😂).
Enjoy your trip to Barcelona ap003, I’m sure you and your son will have a great time.
Hi najmah,
I have been trying to keep quiet, as I might have been taking over this forum 😀.
However, you asked me a couple of questions, so here goes…
So I just wanted to ask Rabbit how he felt getting back into exercise and was 6 months the kind of benchmark time that you felt it was right? Did you build it up gradually?
It felt good being back in the gym, psychologically. Up until then, I had been a regular since 2004 (so 19 years up to 2023), give or take a couple of Covid lockdowns. I even went in on the first day lockdowns ended: 12th April 2021!
Although I hadn’t been in there for nearly 6 months, having stopped a couple of weeks into treatment due to fatigue, I hadn’t suspended my membership. It was a matter of principle for me to be able to walk in whenever I wanted.
However, I had gone from being very strong for my age to pretty weak. I had little stamina, cardio fitness or muscle! Physically, it was hell. I started with very light weights and a low cycling gear, but I was still in and out in a matter of minutes. My legs looked so spindly when I restarted squats that they looked like matchsticks. Likewise, my arms were (my wife’s description) ropey.
It took one hell of a lot of effort and willpower to keep doing the extra reps and increase the weights, as well as to keep increasing the gears and time cycling.
Therefore it was necessarily gradual. As for the 6 months, that was simply how long it took. True, I was enjoying remission during that time by going on holidays, so maybe it could have been done in 5 months without trips. However, after spending the first half of 2023 either getting treatment or at home, I was pretty desperate to get on with life 😀
So apart from walking and cycling have you any advice on what I should start with on going back to the gym?
There is a saying that the exercise that is best for you is the exercise that you actually do! Prioritise what you like and are used to. The memory and muscle memory will help enormously.
I must give caveats: these are only my experiences, it may go differently for you. Also, I suggest getting approval from your consultant and/or a physiotherapist before doing anything that could put a strain on your bones.
Regards
Rabbit
Hi Rabbit,
Please don’t keep quiet, I love reading your posts and they are always very informative.
Thank you for your advice and telling me of your experiences. My consultant told me not to do my classes as it will not do my back any favours at the moment so I’m just biding my time. As for running I don’t think I’ll get back to that which I can live with but I do want to get back to my classes eventually. I’ve looked at the exercise sheet on this website but it’s not really for me!
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