Not sure if I mentioned this before, but I signed up for this study whilst under treatment. I was asked to await the end of treatment, then start the study after a 4 month "drug free holiday". Just started the programme this month and thought it might be of interest.
The basic premise of the study is that exercise and diet can have a positive effect on the immune systems of those who are compromised (so focused on CLL patients). It's something that I feel intuitively is correct but would be happy to see this clinically proven.
The study involves extensive initial benchmarking of each participant in terms of fitness levels, physical condition and bloodwork. Followed by monitoring heart, lungs and blood during and after intense exercise. This is a prelude to 12 weeks of a monitored exercise programme (on a bike or treadmill) and in my case diet tracking. At the 3 month, 6 month and 12 month points there will be an evaluation of physical condition and the effectiveness of the immune system.
However, this all works out I feel it's a very positive thing for me personally as it might re-kindle the exercise "habit". Having been getting up at 6.30AM 2=3X weekly to get on the bike and use the resistance bands I fully intend (at the moment) to keep going whatever. I certainly already feel a whole lot better. I read somewhere that it takes 60-90 days to establish a habit and about the same to forget it!
So if you are approached or have the opportunity to join this programme I would recommend it and happy to chat about my (ongoing) experience.
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Dawson21
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I am also in this study ( along with two friends and fellow patients ) and have found it very interesting. I was initially in the control group so delighted to do no exercise just the testing, but after the 6 months they said my lung function wasn’t great so have now started on the exercise programme as well, in the hope it will improve my lungs.
Because of the continued monitoring they are only able to take several new volunteers at a time. As a card carrying couch potato it has come as a nasty shock, but hopefully I will be able to see some improvements.
This was why I was partially interested in just getting some external pressure to get up and do something! I got selected for the exercise and diet group so a double hit, but I'm not complaining. It's always good to have as much information as possible about your body and how it's working. The exercise is pretty full on though. After 6 months are you still on the programme but in a different group?
Yes I have moved from the control to the exercise group which is being offered to anyone who is in the control group. Finding it hard but intend keeping it up 🤞
I wondered how many were in the programme - although I'm known as #003 I know that there have been several before me. Hang in there - it will be worth it.
I think my friend and I are 5+6 ( a bit like the Prisoner ) I understand that the testing and overseeing the exercise regimen is very time consuming and slower than initially thought, but as I understand they will be recruiting for the next three years.
I have the app on my iPad when I am cycling and I must say that voice giving encouragement does help. If it wasn’t for her I would stop, but she makes me feel I have to continue. 🙂
Also a lot of the initial group are very fit already so I thought I would even out the numbers a bit.
I can't remember where I first got wind of the study but did complete a patient survey last December, which was followed up by a TEAM session with Ellie Miles and Dr David Bartlett in the New Year. Let me check with them if they are still recruiting.
I signed up for this programme and was intereste in doing it. i had initial emails and sent my medical details and was told that I would be informed about joining, but had nothing further. I presumed that they had enough participants.
At this point they are monitoring what I actually eat using an APP called LIBRO - it's fascinating to use. My wife tells me that I am now obsessed with what I am eating! They ran some tests at Surrey to determine my resting calorie demand and then monitor my intake against that I think. First dietician review next week. Interestingly they told me that I consume 1941 calories daily simply by being alive!
I started in March/April & went through all the initial testing apart from bloodwork - I was put in the control group & went back 3 months later for the same tests. I was asked if I wanted to go on a home exercise programme that I agreed to & then come back in another 3 months. I didn't receive any exercise programmes & haven't been asked back - so don't know what is going on with them. I still gym or swim or play golf around 3/4 times a week as before.
You sound pretty active already. As others have said I think they are finding the actual monitoring and follow up pretty time consuming. Worth contacting them direct to check though - Ellie Miles is the lead on the study.
So I am in treatment and they said I can begin once stable (ramp up to 400mg V today). They want me to do the programme whilst in treatment. I am eally looking forward to it. Good to hear your thoughts and like you, hoping this is a positive move.
I'm sure that it will be. I figured that having more medics and experts running the ruler over me and taking an interest in my "state" could only be a good thing.
I am really looking forward to drilling down on health stats. Presently am obsessed with tracking my bloods. Need to keep my mind occupied. I am also starting to exercise a bit at home.
I am in my 8th week; living as I do within 1.5miles of the Sports Park, my assessments are done in the Surrey Human Performance Institute lab. It is a High Intensity study, so it is pretty hard work, three times a week. On Mondays and Fridays I do 30 minutes on an exercise bike in 1 minute intervals of light load (50W) and heavy load (125W) then two lots of 20 reps on the chest press, the seated row and the leg press. Wednesdays is the "easy" day with progressively longer on the exercise bike (now 45 minutes) at 80W / heart rate of 100-110 bpm, Another patient has just joined and he is just in his second week but has caught Covid so is out for the moment.
If I am really enthusiastic and it isn't raining, I cycle from home to the University. Ellie, Jake and Elle are a lovely team under Dr Bartlett and they keep one's nose to the grindstone as well as encouraging one to do "another 10 kg!" "keep those legs spinning!"
Whatever the study may show, it's certainly doing me a lot of good with my strength and stamina increasing week by week. I shall keep it up at the end of the study by simply going upstairs to the Surrey Sports Park gym as well as the "Fit for Living" circuit training I had been doing before and which I have suspended for the duration of the HIT 12 weeks.
I'm with you and intend to carry on once the programme is complete. The encouragement from the team on site (and remotely) helps - "you can do this" seems to work! Your "normal" regime puts me to shame, but perhaps will inspire me to try harder! Just 2 weeks in I am on 20 minutes resistance exercises and 30 mins High Intensity on the bike - 10 sets of 60 seconds flat out (140-150bpm) then 60 seconds "rest" (118-130bpm). I found it really hard to get beyond 140bpm but managed it this week (still alive) - really hard going. Can't wait to get up to 45 minutes (!!). My wife keeps reminding me of just how old I am - but there are still people running marathons in their eighties (and I'm not quite there yet).
Not sure. I had thought that the programme required post treatment patients but Steffi50 is in the programme under under treatment. I have asked if they are still looking for volunteers.
Absolutely not, I am on Acalabrutinib and have been since June 2020. I am also Type 2 diabetic and apart from logging my blood glucose levels, it is no impediment to bein on the study.
Thanks for posting this. Very interesting. I am still on W&W and live reasonably close to Guildford. Please keep us posted of how it all goes. By the way I am a big believer in keeping as active as possible and keeping a good diet (I'm married to a retired NHS dietitian who keeps me on the right lines !) I think that both of these are not only a good way of maintaining our immune systems but are very positive form a mental health perspective.
I read about recruitment on the CLL Society and at the excellent London meeting yesterday it was mentioned they need to increase the membership ( it’s free ) so if anyone in the U.K. isn’t a member yet, do please join.
"Please do put the exerciseoncology@surrey.ac.uk email on there and get anyone who is interested or has any queries to contact.
Sometimes people have contacted ages ago and email have been deleted and missed before I got to the emails, and with the introduction of the interns they may have also missed and not forward information onto me. As with everything at the beginning of a trial there is always some teething issues.
We can also take on all different treatment stages!!!
So if interested, mail the team whatever stage you are at. Although the study is being run at Guildford and some attendance time there is required, most of the exercise programme can be completed remotely.
Because of the ethics requirement, the team cannot approach people to recruit them onto the study, prospective "guinea pigs" have to approach them to volunteer.
Into the 3rd month now and actually feeling and seeing improvements. My "personal" trainer (slave driver) has gradually increased my exercise "burden" by around 50% and guess what, I hardly noticed. I am actually starting to look forward to the hourly sessions 3x weekly. I will probably continue under my own steam once the study is over. I should have detail feedback next month which I will share. I already feel certain that the exercise is improving my general health and for sure my general outlook on life. Good stuff.
An update - I finished my initial 12 week programme this week and went in for the assessments to be updated. Next week I will have a report on what improved, stayed the same or got worse. Should be interesting. I am 003 in the study and whilst at the Institute (for Human Performance) discovered another person joining up as number 025. So participation is clearly growing. I understand the programme will run for several years. I have the option to continue in similar vein for a further 12 weeks and I fully intend to do this. It would be great to establish an exercise habit!
I was on the same study think I was number 6, and no not the prisoner. Went for last testing in December and the CPET test discovered AFib that hadn’t shown on two previous ones. So now off Ibrutinib for now, on blood thinners, 24 hour holster and being monitored monthly until haematology and cardiology decide next step. Good that I decided to take part because it might not have been discovered, certainly not with existing echo tests.
Good byproduct. Afib can be treated. Medication or surgery. I had surgery which was a 100% fix. Good luck with that. Are you continuing with the exercise programme?
Waiting to see what’s next. I have heard of people having to have that operation twice so I hope that isn’t a suggestion.
Afraid I cannot lie and I haven’t exercised recently. I need to get my mind in a better place 🤞. Hospital appointments for other issues as well is taking its toll.
A potentially final comment. Having finished the programme I went on holiday and paused the weekly ritual. Fortunately I've been able to re-establish the "habit" on my own and am going back in at the end of April for a further "intervention" or assessment. I did get a couple of really comprehensive reports that are well worth the effort (and probably cost a lot to get privately). 3 x reports from the dietician, slowly saying the same or similar thing but I have got some of the messages and am making changes! The final physical report was both encouraging and depressing - just reminds me of my age. The exercise programme has clearly had a positive effect and (for my age) am now rated good or excellent - need to lose 1kg (should be easy) and improve upper body strength although it turns out I am being compared to someone 2 decades younger so not to worry overly. Information about the condition of my heart was very re-assuring since it was tested to extremes (or so I thought). Sadly blood analysis not a lot different (which was the purpose of the study) although platelets did increase significantly. So overall, well worth the effort for the information obtained PLUS I feel better, fitter and will continue the routine.
Goodness --wonderful that you have just added to this, Dawson. I just started this study on Friday, was looking up past posts to see what had been written and found yours, and remarkably, your update this morning. I go again tomorrow for blood tests, etc. and to get set up with the bike and bands at home. I have been randomised into the exercise bit of the study. I think they may have dropped the diet bit.
They say that so far I am their oldest recruit --just turned 80--and have the highest lymphocyte count, although I'm not yet on treatment as everything else is ok.
What I found most interesting was Ellie saying that CLL can affect muscle function independent from age--although I don't seem to have read about this before. I must ask her the scientific source for this. Certainly, in my case, I have been declining physically--ie start out walking at my usual pace and then get slower and slower, can no longer squat, etc. It's complicated because I also have osteoarthritis in my knee ( have to walk 'one foot' 'one foot' up the stairs), and hip and also have a chronic hip infection--(from a hip op at Stanmore Orthopaedic 20 years ago!). I had been putting down my declining muscle function to arthritis but it is interesting to think that this also is probably due to CLL.
I do Pilates, 3x /week, aqua aerobics and daily exercises from the physio at Stanmore, but nothing as aerobic as Surrey is doing, nor as muscle building. I am hopeful and looking forward to seeing what effect this new type of exercise will have on my muscle strength.
What is daunting will be actually doing the exercises for an hour 3x a week! Eleanor
Good luck. It might seem a bit daunting at first but they do take our age into account (I'm now 79) even if they don't have a lot of comparative data for our age group. My Lymphocite count did decrease slightly as a result. Sounds like you are pretty active in any event with your weekly regime. Suggest you get something to listen to while doing the hour - I use bluetooth to listen to music or the news whilst on the bike (otherwise can get a bit boring).
Ellie said that they need more in our age group--some have signed up but can't start right away while awaiting various physical things happening--so that should help with getting more data for our age group. They have a lot of young with CLL apparently --in their late 40's.
What do you think about what she says about CLL depleting our muscles, rather than just age?
I agree about using Bluetooth to listen to something while exercising--an audio book, podcast etc. I can listen now listen through my new NHS hearing aids! One advantage of age 🤔😊 Eleanor
I use my hearing aids too! When I was first diagnosed my muscle loss was very obvious, along with losing weight (1 stone in my case). Having put the weight back on I seem more "normal" now and certainly able to push those weights (most of the time). Just wish they didn't shout so much encouragement at me. I know that I "can do this"!
Sadly I've been gaining weight recently--and still have muscle loss, and find the weights hard to push. And could not get up from their chair with just my leg muscles--had to push with my hands. I so hope that this will improve. And I want to be able to walk up stairs one foot after another--if my left leg muscles (thigh mainly) gets stronger.
I'm still watch and wait--just. Are you on medication?
I was on 2 years of V & R, finished last June so now drug free and just waiting for the inevitable. Hopefully several years away. We are all different but I'm sure that the programme will get you moving.
Thanks Dawson.. Yes--at our age--"waiting for the inevitable" it is. And whether from CLL or something else, it will happen. Quite the lottery as to how and when. We're (my husband is a fit 84) having too many friends dying of one thing or the other. In the meantime, it is about making the most of what we do have.
I teach 'Death, Dying a Bereavement' to Clinical Doctoral Psychology trainees at Oxford on their 'Older Adult Module'. Interesting when one is living it.
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