[macgarryParticipant]

Hi Everyone. I am 5 weeks on from a MM diagnosis. I’m a 56 year old guy living in Surrey with my wife and two teenage sons. I was fit and healthy up to this point. Practised Yoga regularly (in fact I’m a certified Yoga teacher).

I start an intensive 5 weeks of daily sessions of radiotherapy in 2 weeks time. It’s focused on the area in my spine (C7 vertebrae) where the disease has manifested itself. Understandably I’ve got my concerns over this, but it seems obvious to me the right thing to do to immediately address the disease.  Following that, in early January, I’ve signed up to take part in the Cardamon trial.

https://clinicaltrials.gov/ct2/show/NCT02315716

This looks a bit more daunting. And I do have serious concerns over the efficacy of putting so many toxins into the bloodstream without a formal treatment plan for releasing those toxins. I feel I’ll need to come up with a detox plan of my own (exercise, diet etc) to help with the helming and maintenance. I’m keen to hear if any of you have changed a) diet and/or b) exercise regimes following diagnosis/treatment. Aside from a professional interest in both, I’m keen to look at anything I can do at home that in some way contributes towards health, vitality and molecular remission.

love and strength

Gary
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[louishenryParticipant]

Hi Gary, I know how disappointing it is when you have always had a healthy active lifestyle to get a disease like myeloma. Not just disappointing but traumatic and panic inducing as well. The good news is that new drugs like carfilzomib are coming along all the time so the outlook is improving all the time, and the fitter and more active you are the better you will cope with the radiotherapy and other treatments. I’ve not done much yoga but I go to Pilates sessions twice a week and the only change since I got my remission following a stem cell transplant is to use a thicker mat to protect my spine and ribs a bit more. Occasionally I have to skip or shorten an exercise but otherwise my only problem is that my lenalidomide maintenance drug makes me a bit anaemic so my aerobic fitness is not what I’d like. It’s scary and sometimes unpleasant but I’ve been surprised how normal my life had stayed. Good luck!

Louis

[macgarryParticipant]

Thanks for your feedback and sentiment Louis. I know enough about Yoga to get started on compiling some sequences specifically aimed at cleaning and refreshing in relation to blood disorders. I don’t know enough about Myeloma to target that directly, but as you say there’s time to learn, and I have the motivation. Thank you again for your reply.

[deanParticipant]

Hi Gary

Sorry to hear your news.. As Louis said the drugs are improving.  I was diagnosed back in April ,  should of had my Sct last week but still waiting due to No beds, what a joke. I been warned it may go for another 2 weeks still… Im down for the same trial , after SCT my doctors are running all the options past me afree transplant nit sure what way yet.. Yes more drugs but if it helps us worth a shot. Good luck with your treatment etc

Dean

[paulbParticipant]

Hello Gary

I was only diagnosed on 23/12/16 and today read your email above. I am 49 and have always led an active lifestyle having played football for over 20 years and running short to long distances. In fact I was last year training for the London Marathon and had gained entry for this year too. I am a vegetarion and so enjoy a healthy diet and so when I visit the Hospital today for my biopsy will be looking to obtain information on how best to maintain this with the drugs, etc and so will be happy to share if interested.

I too have also signed up to the Cardamon trial and so am hoping this will assist in the long term in pushing forward to find a cure for this disease.

All the very best and hope you are keeping well.

Paul

 

[macgarryParticipant]

Hi Paul

Only just read your reply. How’s the Cardamon Trial working out for you?

[paulbParticipant]

Hello Gary

Nice to hear from you, hope you are well.

After next week’s chemo, I will have reached halfway through the 3rd cycle and to date have had no side effects or other ailments to inform of – fortunate so far! I belive this in part is due to my being able to tolerate the dosage and my pre-diagnosis age/fitness levels. As such I expect over time this will gradually decrease as with all things that are age related.

I am very pleased to be included on the Cardamon trial and really believe it is the best option given they provide close attention throughout the course of your treatment and consequently any deviation will always get prompt attention. I for one am an advocate for anyone who wants to be fortunate enough to be asked and sign up to this trial. The chemo unit and trial team at King’s College Hospital have been fantastic and I could not have wished for better – long may that continue!

How are things going with you on the trial?

Regards

Paul

 

[macgarryParticipant]

Hi Paul

The trial goes well. All is good. Have PM’d you for further chat.

 

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