I am at the "wait and see" stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my blood was 68.7. I continued to train for a May 5 marathon and my ABS count improved to 49.5 on May 22.
After that, I did not run as much, and my ABS Lymphocyte counts rose and then stabilized to the 64.7 to 75.4 range. In August I stopped running. (I was doing outdoor work, but it wasn't aerobic.) And on September 30 I got my worst blood test result yet (84.2).
My wife remembered something about running in Glenn Sabin's book "N of 1," so I reread it. When his CLL was at its worst, he started walking daily and then running with his dog. His blood tests stabilized, then started improving, and then they went all the way down to normal. Running wasn't wasn't the only thing he was doing. He had also been making changes in his diet.
Then I found Philip Fields book, "The Long Road Back to Boston: Running Marathons with Leukemia." My wife has been reading it aloud to me while we eat lunch. After receiving chemotherapy, he held off CLL while running over 100 marathons since 2009. His most recent marathon was on January 11, 2020.
Then I posted something on a Facebook page for people with CLL and the moderator linked to a medical journal article which found that exercise helps people who have CLL:
So you might want to gradually increase your aerobic activities. But don't overdo it; just increase gradually. The rule-of-thumb for runners training for a race is to run at least 3 times per week while gradually increasing total distance run by 10% per week.
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HowardR
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Regular exercise is important for all people for both physical and mental health. I’m a runner and hiker, but unfortunately saw no impact on my lymphocyte count which has progressively gotten worse to the point of needing treatment (along with other symptoms). So my experience has been the opposite, but that sure doesn’t takeaway from the idea that CLL patients should stay fit and healthy.
I was a runner when I was diagnosed and I ran even more afterwards but sadly it didn't stop the relentless rise of my lymph count or stop my LNs growing
I started running later in life, around age 46-47, & I was diagnosed at 48-9 or so.
Weirdly, the docs estimate I started running right about when the CLL probably first manifested its creepy self.
In 2019, I was running a lot, upwards of 50 miles a week, when everything went to sh!t: I was bitten by a brown recluse spider.
That caused an ill-health cascade which may or may not have accelerated the CLL: we asked, but it ain’t talking.
Regardless, just as I was grounded by the spider bite, the CLL took off running. Coincidence? (What difference does it make?) Cue treatment & 14 months off running.
Been back at it since June, though. Running about 30 miles a week now. Feel good. Moving faster than the CLL—but I credit ongoing treatment for that, not running.
Moral of the story? Wear boots & long pants when moving around refuse in the backyard ... but keep moving around, no matter what.
I think running and regular exercise has all sorts of health benefits, physical and mental. Exercise is even more important for those of us with Cll because it’s a disease of the immune system. We are at greater risk for infections and better able to withstand infections if we are otherwise healthy.
I don’t think running keeps cancer cells from dividing, for Cll or for any other cancer.
However, with CLL being so heterogeneous, per the varied responses you have had here, the degree to which exercise can help depends on our particular variant of CLL and our ability to actually engage in exercise!
It's interesting that you mention Glenn Sabin's experience, because I've noticed that it's a human characteristic to take what resonates with us from anecdotes. In pretty well every mention made about Glenn Sabin in this community, members only mention his diet. Many times I've reminded members that Glenn also emphasised how important exercise was in his recovery.
As you noted, exercise wasn't the only thing Glenn was doing. In addition to his dietary changes, he also had his spleen removed. His story dates back to when we had far less effective treatment drugs and splenectomies were a recognised medical intervention to slow CLL progression. Thankfully today when we have far better targeted treatments, splenectomies are nowadays only done as a last resort to manage autoimmune complications associated with CLL, namely AIHA and ITP (anaemia and low platelet counts caused by our immune system attacking our red blood cells and platelets). Finally, Glenn Sabin is IGHV mutated and nearly all cases of spontaneous remission (with an incidence of ~1%) occur in those with IGHV mutated CLL.
By all means keep on running and thank you for encouraging others to improve their physical fitness. It may well slow your progression, or your lymphocyte counts might just be naturally varying coincidentally with your exercise efforts. It's quite common for lymphocyte counts to jump around, which is why trends with CLL are so important. Irrespective, there is very good evidence that maintaining and improving our fitness can provide many health benefits that can improve our quality of life with CLL. Exercise can also help with fatigue, a major factor behind a reduced quality of life for many of us.
Not sure that it helps with reducing the lymph count but personally exercise has been a major help in my physical and mental well being over the lock down and subsequent period here in UK. I always enjoyed exercise but have now increased it to a rolling 3 day routine of run 5k / cycle 25/30k / exercise class on YouTube (Joe Wicks) plus 10 minute stretch yoga each morning. I am retired, 68 and it has given both a daily routine and a physical buzz which has been a real boost ! I am asymptomatic and 3 1/2 years into W&W , I appreciate that this is not possible for everyone but I highly recommend it where it is feasible.
We have some very athletic members on this site. Nuts people could run marathons one month then another month their hemoglobin gets so low they struggle to climb the stairs.
I have been running since May and over this time there has been a slowing in the rate of rise of my WBC. The slowing pre-dated this, but has been more noticeable since I took up running. I am not convinced there is a causative link but wouldn't wish to rule this out. Also will the improvement last?
There has been a more noticeable improvement in my blood sugars over this time (I am Diabetic) to the extent my GP has just reduced my medication. I think a causative link between getting regular exercise and improved Diabetic control is well established.
Antony
PS I wish I could run with my dog. I've tried but he insists on stopping every few seconds to wee! Still he loves his walks.
I do not run due to spiral wrap broken leg many years ago with limited movement in ankle, but can still walk very well. I started 3+ MPH walking 4 months before treatment due to shortness of breath. The walking did not reverse my ALC blood levels at all, but did help my breathing to point I was not struggling to breath while walking. I think the exercise causes your body to tell itself that it needs more red blood cells. I still walk everyday during and after treatment. Blessings.
Thank you to everyone who responded to my posting. Your responses were all thoughtful and helpful. Big_Dee's response got me doing an Internet search for running and RBC count, and the top article that popped up was from Runners World entitled, "What Runners Need to Know About Their Blood Test Results":
"Regular exercise causes an increase in the number of RBCs in the blood. As an adaptation to training, there's also an increase in plasma volume in the resting state."
The article goes on to say, that the increase in plasma volume [i.e., more total blood] can make it look like a runner has too few RBCs (anemia), even though they actually have more Red Blood Cells.
As a result of this article, I am no longer so concerned about my higher ABS count at the end of September. It was probably due to reduced blood plasma, not increased White Blood Cells.
Therefore the real benefit of running and other aerobic exercises is *not* that they reduce WBC, it's that they give us more blood and more RBC, which in turn give us more energy and better quality of life while we live with CLL.
I would suggest that with CLL, bone marrow infiltration, along with possible spleen enlargement, would constrain an increase in red blood cell production. I've had an enlarged spleen since diagnosis and falling red blood cell counts, as already considerable bone marrow infiltration worsened, deduced from my worsening pancytopenia. When I moved to a hillier area, I found that doing hill climbs on my bicycle reduced how puffed I became with strenuous exercise. That didn't reverse my worsening anaemia or slow, let alone reverse my climbing lymphocyte count, but my improved cardiovascular fitness obviously helped.
A Marathon to me only means the old fashioned chocolate bar and the only marathon I’m ever likely to get close to. However, I do love to walk and Feel so much better after a good long walk in the mountains.
I believe that running combined with sensible diet has contributed to successful treatment outcomes. My WW lasted from 2003 to 2011 when the CLL went into remission from a single FCR. That remission lasted until 2016 when I was started on Ibrutinib. I was diagnosed with atrial fibrillation as a side effect and the Ibrutinib was stopped almost a year ago. Since I have been followed on no treatment except IVIG and monitored with flow cytometry. So far the lymphocyte counts have been low and no treatment indicated. I stopped running due to the afib and resumed running after a successful Cardioversion to restore regular heart rythym. I only run a little over a mile but I run nearly every morning and love it.
Climbing stairs is probably even as , or more productive then running, because it involve more muscle groups . At 86 I climb stairs and walk. CLL at Stage 3 in Oct. two years ago. Since on IMBRUVICA. My CBC is near normal since month' except slight negative Hct and Hgb. CMP normal range. I was "scared" into jogging 1970 due to pre-diabetes by the legendary Dr. Harold Elridge, a pioneer then for "exercise and diet". But since turning 80+ I walk one hour each day on my indoor-treadmill and since one year I have trained myself to climb the stairs to the 16th floor. The ability to climb a certain number of stairs was mentioned as requisite for one cancer therapy, and that got my attention. I followed Dr. Elridge's advise of "exercise and diet" since 1970. My A1c is 5.5 .
I’ve been running for over thirty years, and have done everything from 5k’s to marathons and triathlons. I’m not sure about the science but I know running has kept me sane through everything in my life including CLL. I’ve recently been forced to stop running due to my hgb being so low and the fatigue makes it so I can barely walk a mile. I’m in treatment now and will start running again as soon as I’m able to. If nothing else, running is good for the soul as well as the body. I say keep at it as long as you can.
I was Dx in 2015. Prior to that I regularly ran and completed some marathons. The CLL diagnosis was, as it is for all of us, a huge emotional blow. But I did resume running as much as possible. I spoke to my haematologist about doing another marathon and I was warned not to, not even a half marathon. But I felt I knew my body and decided to do a half. I was running with cancer, and although not advertising this, it gave me a sense of pride and accomplishment. I finished with my best time ever. It was a huge confidence builder. When I am discouraged I mentally go back to the run and my accomplishment. Other than big runs like that, I still find that running gives me a feeling of confidence and wellness, it improves the quality of my life. I highly recommend exercise, to the extent possible, for mental and physical health.
Thanks Howard. I will try this out. I am also on wait and watch mode since 2015. Just tell us also what changes in diet that one can make to see improvements. Thanks
1. If you exercise to build up your blood plasma, you'll need to drink lots of liquids at the same time.
2. Less sugar. Cancer cells thrive on sugar more than normal cells.
3. There are foods and spices that have been shown to have anti-CLL properties, so I drink or eat as much of them as I can each day. These include green tea, cole family (e.g., cabbage, broccoli, sauerkraut, broccoli sprouts), the Indian medicinal spice turmeric, and members of the pomegranate/blackberries/strawberries/rose hips family (including ground pomegranate seeds - an Indian medicinal spice called anardana).
Other people on this list may have other recommendations. But nobody has yet discovered a diet that cures CLL.
Be careful with generalisations. With respect to (2), recent research has found that CLL cells rely on lipids more than glucose for energy, the opposite of healthy B-cells. See: healthunlocked.com/cllsuppo...
Thank you for letting me know. I was completely unaware that CLL cells are different from other cancer cells in their reaction to sugars! So staying away from sugars won't help us fight our CLL. On the other hand, a diet low in fats and oils might actually benefit us. That would require a big change in my diet!
Thank you, again, for bringing your knowledge of the research to this forum!
I just found another study which supports the idea that lipids are especially needed for CLL cell proliferation. The anti-diabetes drug metformin prevents the conversion of sugars to fat and also helps prevent the proliferation of CLL cells:
There is an interesting discussion of CLL cell proliferation in this study. I'd very much appreciate it if you would read it carefully and let me know if you learned anything new from it and what you think it is saying.
As the paper states "Only clinical trials will elucidate whether this inexpensive medication has the potential to become an adjuvant to current CLL therapies", because, as we know, most promising in vitro experiments do not translate to successful in vivo results So I wonder why the clinical trial results for two metformin/CLL studies commencing in 2012 and 2016 haven't been published?
Hi Howard. I am happy that whatever you have listed in your mail, I religiously follow. Maybe I have continued to be in wait and watch mode for the last 9 years. But yes there is no conclusive proof. And requires absolute discipline which over a period of time we humans tend to go slack on.
In india things like anardana and turmeric and such other stuff is being used for ages.
Thanks for your input. Makes me feel more comfortable than before my joining this group
Don't follow my suggestion about cutting back on sugar! See AussieNeal's response to my post!
As a result of his response, I'm now cutting back on lipids (fats and oils in my diet) and have added strawberry jam back into my diet, which I cut out because of the sugar.
Just be careful of other issues Howard like diabetes. I always feel the main culprit is carbs which convert to glucose. Interestingly carbs taken with fat reduces the glucose hit (which is why a Mars bar would be no good for a hypo but a jelly baby would). The best advice is a balanced diet without reliance on any faddy ideas with as much exercise as you can manage (and you actually enjoy).
I’ve not found any particular foods impact on the CLL but a diet high in carbs and sugar leads to systemic inflammation which I don’t believe benefits our blood cancer at all.
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CLL with “normal” FISH
Lymphocyte count going down slightly
