Hi All, I may have mentioned this subject before, but I would like to pass it by you all again if I may.
I have been on W&W for 5 years and am about to begin treatment soon, (What exactly that is I do not know yet)
I have done some research on a Cancer Treatment Hospital, in Perth Australia, who specialise in a 'Medically Supervised' exercise program for Cancer patients undergoing Chemo treatment. It takes place on the same day as their treatment almost immediately, in the same hospital.
After treatment, those participating walk to properly a fitted out Gym, where they are given a program suited to their specific needs. This all done with Oncologists, Physiotherapists, and other medics in attendance. The exercises include Aerobics, Calisthenics, and Weight Lifting, at varying progressive levels.
From what I have read they have been going for a few years now, and the results are extremely encouraging, relating to quality of life certainly and perhaps some longevity.
I have found so far, that they appear to be the only Cancer Hospital that does this, there is certainly nothing similar in our NHS. Although I am informed that there is some Physiotherapy involved in some cases.
My query is, is there any groups in the UK who specialise in this type of program, albeit(At a very much lower level )
Personally I find that this idea has merit, and is exciting and progressive with regard to the effects of some of the treatments we have to endure.
I appreciate it will not be every ones 'Cup of Tea' (Horses for Courses) but I would be very interested in any thoughts you all may have on the matter.
All the best to all. Ron
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Ron - I started treatment on Nov 1, 2022 on Pirtobrutinib. I went on a bike ride the day before, my preferred mode of exercise. We also do a lot of walking and hiking.
After starting treatment, we took walks, gradually increasing the difficulty and length. I started riding again after the first couple of weeks, and have been gradually increasing the frequency, length and difficulty of the rides.
I’ve been loosely following the advice of others on this forum of giving my body more rest and food for the first eight weeks.
Exercising outdoors is my preference. I find it more fun and lifts my mood to be outside. I believe exercising outdoors has helped me minimize the importance of minor side effects. For example, I often get a headache after taking my medication. I usually forget about it once I’m on a ride or hike. Perhaps being in better shape helps protect against some more serious side effects but I have no evidence to support this view.
I find exercise helps me feel better physically and mentally and let’s me focus on the business of living.
I did not start out as a great athlete. About 10 years before being diagnosed, I started riding bikes again. I was overweight, had arthritic knees and one hip showing signs of arthritis. My first ride was two miles. The next ride four miles. Within a couple of months, I could ride 12 miles. During Covid (after my diagnosis), we rode 12 to 15 miles per day. I learned I could be athletic if I wanted to by training almost everyday.
Our approach is to prioritize exercise each day. We build our day around our exercise, even if it’s a two mile hike.
I so liked your Post Cycle Wonder, and after what you have been through you are indeed one.
I too, think that exercising in the fresh air is by far the best.
Some times however it is easier and more practical to do it, with the minimum amount of organising. At the moment I prefer to get out of bed, limber up, exercise, shower, then start my day.
It's a balance I think, and I try to mix the two. Whatever suits you, do, would be my advice.
I hope you achieve all your goals, and you are an inspiration to all.
Too be honest, it’s a bit of a struggle this summer. I react strongly to forest fire smoke and heat. We’ve had both. Two days ago on a hike I was overheated and couldn’t really cool off until we got back to the car. We were all sweaty but the humidity prevented the sweat from cooling us down.
We hiked back to the car and the immediate blast of AC was wonderful. At home I took a cool shower, drank some cold water with electrolytes and had some hot tea. The next morning I felt like I had been hit with a truck.
It’s continued to be hot and muggy since. I am relegated to walking around the neighborhood after the sun goes down when it’s a bit cooler.
Tomorrow we may have forest fire smoke from Canada again. So working out insidecmay be required.
I exercised right through ( a different ) treatment - needed to on a physical, emotional and mental level - no proof that it helped me but I’m still alive & kicking
I’m fitter & leaner than I’ve ever been. I now do a Pilates/ strength building class once a week & walk my dogs 2hrs a day & my day is physically challenging - am I glad to have exercised - yes & I think I’ve benefitted.
The University of Surrey is currently running a research programme in this area. They are still looking for volunteers. I am starting in September 3 months after finishing my treatment.
I started on that HIT-CLL Study in February that is being run by Dr David Bartlett at University of Surrey. It is a long term study looking at the effects of exercise & diet on CLL. You are correct, they are looking for volunteers, it has involved two 4 hour visits to the Universitg so far, in 6 months.
Yes, I've been given guidance of what to do when at tge gym. I'm hmjust awaiting what changes if any to name ti my diet. I am due back at UoS towards end of August for another assesment. I understand we are randomised in to different groups.
Yes we are randomised into three different groups so I got the control group ( couch potato ), and no money changed hands as a friend of mine suggested but my friend has been running up hills. I found all the testing fascinating.
So do I Thursday,, but our systems in this country,, are never going to be able, or perhaps want to embark on such an ambitious and, much needed project.
But there seems to be an appetite for exercise during and after treatment, and it appears that many Health Services are doing all they can to promote this.
Thanks again for the input, and all the best to you in any ongoing or upcoming treatment.
If you were physically active before CLL slowed you to a standstill, the end of treatment should be like Superman shaking off the kryptonite. I can attest, it doesn't always work that way. For me it's a long slow haul back to fitness, and I salute those who get back in the saddle next day, or take on a walk of hundreds of miles, as in healthunlocked.com/cllsuppo...
So true, bennevispalce, but as you will be aware, we all react differently to treatments, depending on the , so many, variables, associated with this CLL of ours.
It is entirely possible that your treatment will kick in, and you will find a level which you can work with, thereby enjoying the quality of life you and every one deserves.
Thanks Ron. I do believe in the value of physical exercise, and each to their own level.
It's not CLL that's held me back. My kryptonite is chronic migraine, which came on post treatment but is probably incidental not consequential. Once I shake that off, I'll be in training for An Teallach. My last attempt ended in a sudden blizzard - late May!
Hehe, you're warm....the English translation is usually The Forge or The Anvil. Supposedly because the mountain is often wreathed in mist and cloud resembling smoke.
I am 72 and was on watch and wait for three years and now have been on ibrutinib for two and a half years and blood counts are normal apart from the odd spike in creatinine levels. The day I started my ibrutinib I stopped having a daily glass of wine and weekend beers but apart from that life has carried on as normal. In summer I do some surfing and in winter I am active on our farm planting native trees, using a chainsaw or splitting wood with a Fiskars axe. The CLL does not seem to have affected any of this. Unlike recommendations I read, my scratches from blackberry etc as I plant trees all seem to heal well. I am not on any fitness regime but try to keep fit by the physical work I carry out. I tell others that CLL is something I live with and not battle. I am still active as an accountant working from home and running our family enterprises. It is a strange disease as unfortunately it seems many suffer more physical side effects than me. However you never know what lies around the corner and I do find waiting for the results of my monthly blood tests rather like waiting for exam results many years ago.
Hi, I have actually been on a program at Surrey University, its called CLL HIT Study.
It is run by David Bartlett who is an Immunologist who is analyzing the benefits of exercise (and diet ) to our immune system, checking the individuals immune system before and after the exercise program.
We started with some exercises where current health and fitness levels were taken and then a second week taking us to a level to ensure the program worked us to 85% of our individual capacity, again taking into account current levels of health and fitness.
We then moved on to a 3 month program of regular exercise 3 times a week based on the levels found.
This study is specific to CLL patients, some on W&W and others on treatment such as myself on Acalabrutinib.
I finished my 3 months about 3 weeks ago and am waiting on the results, it will be interesting to see what they have found.
My current levels of CLL are now stable with all blood within the normal ranges, however the Acalabrutinib still reduces our immune system as it fights the dodgy cells in our bone marrow, hence the Aciclovir and Dapsone to help protect us. These blood levels were improving anyway from starting Acalabrutinib in January 2022 after the initial rise so I will be interested to see what the final results are.
I will update you all when I have the latest update
I think walking is wonderful. I have been walking faithfully all through 12 years of chemos for aggressive FNHL relapsing into DLBCL NHL and 2 CAR T trials, 1 VIPOR immune therapy trial and 1 Ibrutinib trial. Husband and I walk 11/2 miles a day with our trekking poles. I do believe my walking early AM has helped keep me alive and in decent shape…no longer on any B/P meds!
Sounds like you are in great shape considering Justhawk, and an inspiration to many I'm sure., With what you are dealing with, my hat comes off to you. 'Keep on Keeping on'.
That is fantastic justhawk, you seem to have a very positive, and determined attitude, and a sound program to get you back to full fitness. (CLL style perhaps but nevertheless, absolutely amazing.)
I am 76, and most of my muscle mass has disappeared, and I am skeletal in most area's. I never have been a 'Gym Bobby' or into weight lifting, but I feel the need to increase my levels.
Can I ask you justhawak, how old you are, and if you participated any high end exercise, and gym work in your life, before your CLL. For if you are my age, I find it absolutely phenomenal., and I am awfully jealous.
Hope I'm not impertinent in asking, it is purely scientific.😀👍
No problem at all, I totally understand, I wasn't fully aware that there is a way of otherwise answering those type of questions, and I will use it from now on. No offence meant at all justhawk'..
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