Apologies for those who have heard me on this before, but it has been a while since we've specifically discussed exercise and CLL and we've got lots of new members that may be interested.
I for one would be very interested in further research on exercise and time to treatment. I seem to recall that a doctor in Scotland was going to do a bigger study on exercise and leukaemia - does anyone know what became of this?
I suspect that if an individual is really fit and well, then that can fitness and good health can assist the body to manage for longer with less obvious symptoms than someone that isn't as fit and well. I've heard of athletes crediting their fitness for delaying progression, but this is anecdotal and we really do need to do specific studies. What little research that has been done definitely shows reductions in fatigue and improved mood and better tolerance of chemotherapy.
Personally, prior to my immune system rapidly succumbing to SLL/CLL, I used to regularly commute to work by cycling, clocking up about 5,000km a year. I didn't leisurely ride either; I'd really push it and often beat the commuter bus. From an ignored blood test, I'm pretty confident I had SLL/CLL a couple of years prior to diagnosis and I'd had symptoms for the best part of a decade. I was diagnosed at stage IV (marrow, spleen, node and peripheral blood involvement), but then again it's more common to be diagnosed at a later stage with SLL than with CLL as it is more hidden in the earlier stages. However, other than afternoon fatigue and the occasional night sweats, I was otherwise well. Hence I had a personal suspicion that staying fit delayed my time to diagnosis and that it was a worthwhile goal to regain what I could of my fitness.
With my reduced immunity at diagnosis, I contracted Cytomegalovirus (CMV) and at the worst of it was struggling to walk a few 10's of metres without getting puffed and having to stop and rest. As I slowly recovered, I'd find it easy to over do it (felt good when exercising - no warning signs I was overdoing it) and for a long time post CMV, my fitness stagnated because I'd be so flat for a few days after overdoing it.
Locally, our Leukaemia Foundation has an exercise physiologist that supervises gym sessions with customised exercise programs for leukaemia patients. He was a professional footballer that went through a career path change after a lymphoma diagnosis and I've listened through a couple of his presentations on the benefits of exercise for those with cancer. Unfortunately he is based a long way from where I live, so I haven't attended his sessions, but I know some that do and they've found them beneficial. (Also, unfortunately, my immune system isn't up to surviving the challenges of a gym/fitness centre.) Here's a synopsis of his findings:
Irrespective of whether exercise has any specific benefits for CLL beyond those already reported, there's enough evidence that keeping fit provides other worthwhile benefits. It is also very hard to maintain - even for people that are otherwise well. Getting started is the hardest part, but you don't have to do anything much out of the ordinary. Just going for a half hour walk daily is beneficial. There's also increasing evidence that you can benefit more from higher intensity exercise than gentle exercise, so if you are struggling to find time to exercise, just 10 minutes of fast paced walking may do you more good than a 30 minute leisurely walk. You only needs to walk at a brisk enough pace so that talking becomes more difficult.
I'll admit that I don't exercise every day - feeling tired, being unwell, inclement weather, other priorities - there's always a good 'reason' to skip it. But I also know that I feel better if I make the effort and my days are more productive. There are tips to overcome these self inflicted barriers. Some include finding an exercise buddy - that helps both of you keep to a commitment to improve your fitness. Look for incidental exercise opportunities; walk for small journeys rather than taking the car (e.g. to the corner store if it is still there), take the stairs instead of the lifts/escalators, etc.
Perhaps others can share their tips?
Neil
The accompanying picture shows a favourite walking target of mine; there's pleasant native vegetation around a waterway that is popular with native water birds including ducks, dusky moorhens, ibis, magpies and the occasional pelican
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AussieNeil
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Yes, I continued to run the Great South Run, which is a 10 mile road run round historic Portsmouth after my diagnosis . I would also have run it last year but for sciatica. I am about to go onto a study Ibrutinib versus Chlorambucil (randomised) although I don't feel unwell at all and have been teaching someone to play tennis, though I can't run I can still get around the court.
So, I think exercise/keeping fit probably does help. Anything that oxygenates the body is surely a help. One doesn't have to run half marathons. Just getting on the bike and out in the fresh air makes me feel better especially when I'm feeling tired. I am hypogammaglobulinaemic and have low Hb and platelets but I don't feel it. The worst is the sciatica and the tumour on my spine which impairs my movement. It turns out that the tumour is not likely to transform into a high grade lymphoma thankfully.
Hi I have been a patient with Type2 Diabetes for eighteen years and been very active and had been regularly been walking at three times a week . Last year in June I was diagnosed with CLL. This came to light during my six months diabetes review. I have trekked to Everest Bas camp ,and avenue of volcanic mountains in Ecuador ,three peaks in Yorkshire Dales . Being active has helped me to control diabetes but being diagnosed with CLL was a bit of shock.
This has not stopped me doing activities I enjoy. I had been training hard to take part in London Marathon this year, but the night before the race my bag containing my running kit was stolen from my car which was parked in friend's drive in London. I was very upset but I was very determined to find another event and I was lucky to get a place in the Edinburgh Marathon. I completed the 26.2 miles on 26th May 2013 in six and half hours.
I have been having my reviews every three months so far. I am now training to take part in BUPA'S GREAT RUN in Newcastle on 15th September.
I agree being active and taking control of my diet has helped me to remain fit and the age of 69
Daily fast paced walking twice a day everyday and a low glycemic index diet afforded me a weight loss of 120lbs over about 2 years... it sent my absolute lymphocyte count (ALC) from 136K down to 42K, termed a regression. The jury is out about reasons for this but my excessive weight probably produced a ramped inflammatory response... fueling my absolute lymphocyte count (ALC).
Exercise/diet cause and effect is unclear, but when treatment time arrived a year later, I was in far better shape to handle the toxic onslaught for 12 months of FR and subsequent R-CHOP and massive radiotherapy.
No excuses... just place one foot in front of the other.
I'm curious about your post. I was diagnosed with CLL back in 2009 but have never had any of the B symptoms. I also have an inguinal hernia which I've never bothered to get repaired. What I noticed over a period of time with my hernia was that it bulged out more when I eat foods with a particular preservative. If I stayed away from the offending foods, I never noticed the hernia. If I eat foods with the preservative, it would bulge out for about 8 hours and ache if I was standing up. After this period, it would return back to normal. My own personal experiments have linked these massive increases in my WBC (jumping from 45K to 80K). This is obviously an immune response to the preservative. I spoke to my hematologist about it and he poo-poo'd the idea saying it wasn't possible (gotta love doctors).
If I hadn't had the hernia, I would never have discovered this issue. Prior to discovering the issue, I was having miscellaneous skin issues which, having given up the offending foods, have gone away. My hypothesis is that, with the preservative, my bowel becomes inflamed and is less able to absorb the nutrients my body requires and hence the skin issues.
It makes me wonder if my CLL came as a consequence of this immune response continually happening over a period of many years prior to discovering this issue? It's just a theory and I have no proof though it would seem reasonable to propose that continual overuse of your immune system could cause issues.
I don't think your theory is at all ridiculous, though proving it would require the services of a research laboratory with the ability to analyse immunoglobulins/antibodies to specific antigens. In your case it could well be that your clonal CLL cells produce antibodies specific to the preservative to which you're sensitive. CLL research has most definitely shown that there's a much larger than expected proportion of CLL cells that are specific to a narrow range of antigens. Here's one paper that mentions this and there's another I can't find:
"In paper I, we investigated the antigen specificity of CLL-cell derived antibodies (Abs) with various IGHV gene usage and stereotyped BCR subset belonging. Identified CLL antigens included vimentin, filamin B, cofilin-1, proline rich acidic protein-1, cardiolipin, oxidized low density lipoprotein and Streptococcus pneumoniae capsular polysaccharides."
Thanks Dick, for recounting your very interesting personal experiences. Pretty impressive correlation there!
Interestingly, my blood test results show a seasonal pattern, but it is inconsistent. It was marked enough however, for my haematologist to identify it and to comment that some patients do exhibit a seasonal variation. After your experiences, I'm now wondering if it is a variation in exercise level which is influenced by the season rather than the season per se.
As you rightly point out, CLL expresses itself so very differently in each of us - we don't even understand why our lymphocytes differ in their location concentration patterns (some mainly blood, some spleen, others primarily in nodes, others in the marrow and of course all the combinations thereof).
Irrespective, at least this is something we can all try this for ourselves to see if changing our exercise levels has any influence on our Absolute Lymphocyte Counts. No adverse effects (unless we overdo it), minimal cost and just an investment of time and energy.
Hi prior to treatment I regularlly walked 10 miles post treatment that's a dream. However, about 4wks after treatment (which was probably a bit too soon) I joined a "walk for health"scheme two yrs later the scheme is still going. Walking in a group provides support and social interaction. Women especially feel unable to walk alone but feel safe within a group. Its not about training for the next olympics but about being consistant. Trying to achieve gold medals is perhaps out of reach of most people but enjoying joining in is what the legacy of London2012 is all about. Best wishes
I have just turned 76 and was diagnosed as having CLL a little over twelve years ago, though I suspect that it was there prior to diagnosis for a few years - my GP dismissed my unexplained fatigue as the result of: age/ work of a physical nature/anaemia (twice discounted by blood tests).
I am convinced that my attitude to the illness, plus my determination to keep as fit as I am able (I am a former Royal Marine) has contributed to my white cell count dropping and my overall health remaining manageable. I walk for an hour at a fast pace every day and maintain a regime of other exercises. I also eat healthily - no meat and loads of fruit and veg., plus supplements.
There have been one or two blips: a bladder infection last winter that lasted three months and survived a variety of antibiotics until the correct dosage was administered and a surgical wound to remove a very small mole that subsequently became infected (hospital bug?) and was also problematic.
I get the usual stuff: cold symptoms almost continually (sometimes more than one infection on top of an existing one, minor upper respiratory infections, ear infections, etc., but in the grand spectrum of life, I'm not doing too badly. I am, of course, a grumpy old sod, something that my wife would be only too happy to confirm! She says that I've always been that way.
Lovely to read all the positive replies about exercise. I wish I could join in, especially as my husband is recovering from a heart attack and wants to take brisk walks daily. My problem is the breathlessness and face-flushing (the sort that means I have to wipe down so the sweat doesn't go in my eyes) with any sort of exertion. Yoga is as energetic as I can manage.
Enjoyed the post on exercise Aussie, I have just been diagnosed with CLL. discovered when I had a little Stroke and subsequent Operation. In retrospect I think I may have had the symptoms for some three years before Diagnosis. My 2015 WBC was high normal, three years later it was 12.6. I was lethargic and becoming a bit of a couch potato. Most of my life I have been fairly fit, football, squash, distance running and the like. But from the age of 60 I did not do much in the way of exercise. I am now 71 years of age, and nine months ago I decided to achieve and try and maintain a decent level of fitness appropriate for me. I wanted something that was easy and practical to do, with the minimum of fuss, or preparation. What I did, and am still doing is suitable for me personally, and I feel so much better for it. My Blood Pressure has reduced considerably, as has my cholesterol. I feel more energetic than I have been for many years. I eat healthy, low salt, low fat, lots of veg, fish, chicken, and still manage the odd curry or two. I also have one or two units of alcohol a few days of the week.
My exercise session consists off me, first thing in the morning, and before I get showered and dressed, is putting on a favorite music tape. I find music during exercise very motivating. Still in my night attire, I then do steps on the spot, and old fashioned arm exercises. This is done at a very slow pace, and allows my muscles to warm up. After a couple of minutes I graduate into a very slow on the spot jog, still doing arm exercises. After 10 minutes I increase the pace to suit the beat of the music I choose, if I feel like it. Or I may stop altogether depending how I feel. I find that I am now doing regular daily 20 minutes sessions, and that seems to be my comfort zone. The beauty of this type of session, is as I say, that it's very easy to do, with minimal preparation and fuss. However, in view of my Stroke,and CLL diagnosis, I did get my GP's permission before I started, and I would recommend anyone embarking on any type of exercise to do the same. I think you will find most GP's supportive. I might add, that I really do believe that our quality of life is very much enhanced by exercise and healthy eating. I do apologize for the length of this post, it is my first time on this site, and I promise that any further ones will be much shorter.
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