Hello, I wanted to share this journey with you because I ran competitively for 30 years as a worldclass marathoner. I am 64 now and retired 7 years ago, running my last Boston marathon in 2015. I ran a 3:21 and tied for 3rd with the exact same time, missing "3rd" by .01 seconds. Ouch! I continued to run every day and even still did long runs up to 16-18 miles for "fun" until 2020. Fast forward, this past March, I could barely walk a mile because I was diagnosed with CLL. I had gottten Covid January 2 (the same day I was to get my annual physical and bloodwork done). I was unable to book a new appointment until March(due to the lasting results of covid doctor appointments catching up!!). I was walking up to a mile every day, as I thought I was just dealing with long Covid. My doctor appointment determined CLL by April 1st. I was put on Calquence April 14 and immediately felt better within a week. I was able to walk farther, but could not run. I was eventurally put on Gazyva on May 24th and could feel how much better I was after one treatment. I started running June 24th and could run 1/4 of a mile. I did this each week and gradually took the mileage up to be able to run a mile after a month of building a base. The typical side effects of the drugs were bruising and red dots on the skin. Usually little(not clustered) and somebigger ones would appear every now and then. I drink a ton of water each day and at this point feel back to normal. I run every day, usually 4-5 miles. Once a week, I run up to 8 miles. I do not run for time, so my average time ranges anywhere from 10:30-11:30, which is 2 minutes off from my pleasure running 2 years ago. I do not do any speedwork, so this and age could be why I am slower, but I don't care, as long as I can run. At this point, I went off the Gazyva in October and will return for bloodwork in December. My bloodwork is all normal except my MCHC and EOC are low, and my RDW is high, neither being significant in severity of the reference. I still get little red dots on my skin, but my bruising heals quickly and I truly don't have any other side effects. I wnated to post this to encourage others to be patient with the diagnosis, the treatments, and to get excercise in your daily routine. This helps with your mental wellness, physical healing and just good old daily prayers to be thankful for the incredible advancement of medicine these days. You will feel better, just know that you are not alone. I hope this helps answer some questions and that you too will get back to normal in no time!
Running with CLL: Hello, I wanted to share this... - CLL Support
Running with CLL
Thank you for this insight into your world(s).
I am a no elite anything - but have road cycled and mountain biked for 3 decades. Cross country wilderness stuff off road in the UK being passion.
Never used a clock or rode against a time. For a while the two of us were joined by a marathon man. He was clock mad. 6 secs slower his weekend was destroyed. He never appreciated the nature, the sound of autumn leaves under the wheels - oak being different to beech, and other subtle embalming moments of natures colours bathing our senses, off road stuff!
Having CLL in compliance helps the CVascular aspects for sure.
The destination is unimportant, the trail will decide. Savour the moments our lives gives us. Slow down a little and drink in more of the experience.
Throw away your watch 😉and simply run.
Jig
Simply run to embrace the gifts around us for sure! Thank you!
I had a similar experience. I've been running for29 years and had CLL for about 23 years. I would run 3-5 miles at a time, several times a week. Shortly (less than a year) before my first treatment I was only able to run about a block. I got in a trial of I/V. The first three months were Ibrutinib only and I still wasn't able to run, but about three weeks after Venetoclax was added I was able to run a mile. Soon after that I built back up to 3 miles. Three years later I'm doing 18 miles a week. I'll be 70 this month.
john
God bless you! You are truly my heroe and I will hopefully be on the same path in my 70's. You are an inspiration. Thank you!
🙂🙂🙂👍👍
Fantastic to read this. I too was flattened by the disease at the point of diagnosis in the spring of 22. It took me 6 months to get back on the road and the turbo-trainer, mainly due to muscular-skeletal inflammation, which gradually settled down once I started treatment. I've been ticking along nicely thru the autumn. 🙂
Our journey is similar. So happy to know you too are continuing your pleasures in health and feeling great every time you get out there. Keep up the great work!
Hello elitemarathoner
I don't run due to double spiral wrap leg breaks years ago. I do however fast walk 3-5 miles a day. This helps my mental wellbeing as well as my kidneys sending enzymes signal to increase red blood count. The leg exercise also activates muscles to pump lymph fluid up legs to be disposed. Lymph system does not have a heart pump other than extension and retraction of muscles. CLL is a Chronic Lymphocytic Leukemia. Keep up the good work. Blessings.
Yes, excercise is the key for feeling better inside and out! Well done. Very impressive with the other challenges you deal with. Best to you!
Hi Marathoner!
Thank you for sharing your journey. Lovely to see your recovery and thank you for the inspiration and support
We need eachother during this journey! Thank you!
I go gym and swim daily too , good luck 👍
Excercise is a must and you "must" sure look good!!
Thanks for this - like others I have no claim to be elite - my best marathon was 'only' 3:47 😀 and some were much slower....
I clearly had CLL for a while (don't know how long) before diagnosis, but looking back at my running times there was a significant drop off which I suspect would coincide with the onset of the disease. I was still running, but considerably slower than previous - our club had a monthly race of around 5k and my times dropped from around 22 mins to around 27 or more.
I did return to running after my first treatment (FCR) and was coping reasonably well - albeit at an even slower pace. For reasons other than the disease I stopped running so regularly but in recent times I have started to try and get a bit of fitness back - walking at pace and after some weeks interjecting some running into that.
So yes - I fully agree that you can get back to exercising and "running with CLL" - my side effects are similar to your own - one I would add is that it seems that it is much easier to pick up minor strains and sores - but I have no idea whether that is anything to do with CLL or if it is simply a side effect of getting older😂
We have been busy moving house recently to a new area and I have been rather neglecting my exercise - this has given me a little bit of a push to get that started again.
So I guess you are going to need to get outside and WALK to see the new neighborhood. Time to explore and get back on track to your daily excercise. That fresh air and glorious change of seasons will occur in front of you and you will know how lucky you are to be able to enjoy God's blessings. It always amazes me how many healthy folk miss out on these simple pleasures by not just taking a walk. It takes 20 minute of your day to walk a mile. I know you can find that time. First thing in the morning is usually best, otherwise the day can run away and take it from you. If you keep it up, you will find witching to running is so exhilirating because you can do it again...slow, but you can. I only did short distances for a month, then added 1/4 to 1/2 mile. Just depended on what my body told me. I always listen to my body. I took Thursday off this week, but ran 8 yesterday. I will run only 4 today, very easy, but I can, so I will. Keep me posted on how you do after you move. Looks like ya got alot on your platter, but I still believe you can find 20 minutes JUST FOR YOU! Good luck!!
I needed to hear this. Thank you! I wish you the best.
Hope it makes you realize you we are all in this together and you will get healthier as the days pass. Take care!
Woke this am feeling down and in need of a boost. Sat down with my coffee and then open this news letter and there you are smiling at me and me back. I am so grateful that you took the time to post your inspiring story. Reading and thinking about it has changed the trajectory of my day. Thank you.
Jerry
So happy that you were touched by my story. I posted it to help others to know that we will get better with patience and loving oneself. Exercise is my personal medicine that helps my mind and body. I figure out the day ahead and kinda just "take my temperature" to see how/what my body feels for this day. After every run, I always feel so accomplished and in such a better place. Yeaterday I ran 8 and feel fine today. I will run an easy 4, my "victory lap" from the day before. I loved your swallowtail by the way. I had to look twice because I thought about using a similar picture! You have great taste! haha Have a great day and enjoy the blessing.
I was training for a half marathon when I was diagnosed six years ago. Running saved me. I had to back off on long distance races due to a hip replacement in Dec 2019 but I still knock out several miles a day on my treadmill. My son runs ultras and got me into it when I was in my 50s. Best therapy ever. Keep up the great work.
You must be my long lost relative! Tell your son I had 50 year old age group record in the 50K at one point, 3:56. It's been broken since, but I admire anyone who runs ultra's regularly. I only ran 2, but found the marathon was as far as I really wanted to go. My problem is that I always want to race, but ultra running can be a totally different experience mentally and physically. Glad you are still running after your hip replacement. If the treadmill becomes challenging, my guess is you will be pool running!! People love that. Keep up the great work and feel great.
"I wanted to post this to encourage others to be patient with the diagnosis, the treatments, and to get exercise in your daily routine. This helps with your mental wellness, physical healing and just good old daily prayers to be thankful for the incredible advancement of medicine these days. You will feel better, just know that you are not alone."
A truer statement could not be made:). I also find daily exercise (I do it 365/year) is great for my physical and mental health. Nothing like being outside, listening to nature, and just seeing you can still do "impressive to yourself" things.
And it doesn't have to be runs. I take walks. For those starting out, I always say to slowly work up to something that impresses you (but that you can mentally do without overwhelming yourself), and then get there and do that every day.
Mother nature is the best healer for sure! We are so lucky to have this desire regardless of our health. It always surprises me how many people don't experience the purity of this. It's such a reward every day to be able to do this for ourselves.
Wonderful. Thank you. Your message will encourage me to run again. Now I just do 30 to 60 minute walks. 👍👍 Bob C
Just start with a few seps. Yes, even just 10! It's those first few awkward attempts and then one day you're running. I rmember the first time I tried, I was so sad. I could'nt even run 3 steps. I just continued to walk for a few more weeks and attempted again. I could run 20 steps! It was a daily slow process. Before you knew it, 1/4 of a mile was every day. I would add 1/4 in the beginning and then eventually I was up to 1 mile, then 1.5, then 2, all within a 2-4 weeks apart. Every day was an investment, the return was worth it. I am content with one long run 8-10 miles, but with winter upon us, that will be max. I trained too many Boston Marathons during winter and I always hated it since I ALWAYS trained outside. I knew the weather factor was important to fight, so I just did for over 30 years! Let me know when you run a mile. I will be so excited for you!
Thank you! Your journey is very inspiring. It is important to reiterate the importance of exercising. I was a very active person prior to CLL. After CLL I had to modify my exercise choices, but I still am exercising and drinking lots of water. For me, exercising is my therapy and helps me be in a positive mental health state. I cannot stress the importance of what exercise has done for me.
Keep Going!!!
Sandy
You and I have similar minds. We see, feel and know it absolutely helps us. Keep up the good work.💪😄
I, too, developed CLL without having a clue as to why I was so fatigued and tired all the time. I attributed these symptoms to getting older and being overweight. I have an in-home elliptical exercise machine that I used infrequently, but when I did use it, I could go 45 minutes on level 5. My fatigue eventually took me down to being exhausted after 5 minutes on level 1. After my one year treatment on Obinutuzumab (Gazyva) plus Venclexta, I can do as much as 45 minutes on level 7. I have also lost 41 pounds since March 2022. I asked my cardiologist if I was being too aggressive on exercise and how much was too much... he said the rule for me is to do as much as I can tolerate.
I too thought I was getting old and slow! hahaha I had weight loss, but I thought it was from covid and having no appetite due to being sick. I also could not smell or taste, so I blamed everything on covid. The old thing really was depressing when I thought that was the culprit!I like your cardiologist, as he has our mindset
Very inspiring post, it’s good to read about other people success stories. I can’t run at age 70 but walking is my thing, 3-4 miles is my daily goal. I feel that a daily walk helps the blood stay better oxygenated and improves my state of mind. I am still in W&W after 18 years since diagnosis and going for another 18… why not..? 😂 😂 😂
Thank you for posting this. When I was young, doctors always wanted you to rest. Now exercise is encouraged. I continued to cycle even with an enlarged spleen. My doctor just told me to do as much as I could and not to crash. Since I started treatment, I haven’t gotten back on my bike. He could tell it was time to treat when I shared I couldn’t ride up the last hill to get home. My legs were just “done”.
Now we’re hiking almost everyday. Wintery days are interspersed with rainy days. We can hike when it’s cold but tend to wait for the rain to stop. Looking forward to snow.
You will get on the bike with your treatment starting!! Maybe get a trainer if you want to train eventually during the winter. If you are passionate about your bike, it knows you are on hiatus now. Once you are ready, just take it on the lowest resistance or even none, just to get those legs use to the motion again. Sounds like you'll be snowshoeing in no time, and that would be so much fun and a great workout too. Good luck!
We have our first snow forecast in mid December but it won’t be enough to snowshoe. Looking forward to that! At the moment, we have no room for a trainer. Not sure where we will put the Christmas tree lol! We downsized when we moved to the east coast. I may go out on one of the warmer days and just ride around the neighborhood. I don’t want to go on a solo ride yet. When we ride together, my husband rides a tandem with our son. I’m wary of riding with him in the Wintery months because my son likes to stop and have lunch at the midpoint. It’s too cold to sit outside and Covid is still lurking. So we hike now and will get back into cycling in the Spring.
Thank you for sharing! What an encouraging post!!
Thank you and I hope it inspires you to know we are all on this journey helping eachother.
Thank you so much for your glimmer of sunshine on such a dark and rainy day when I am in the USA! My husband is being treated with V+O, and nearly done with the O. However, I am the runner in the family. I'm just wondering, do or have you experienced long covid, and did that affect your running ability due to decreased lung capacity? I'm so terrified of COVID for that very reason. YOU are an inspiration to us all! THANK YOU, and Happy holidays to you and your family!
I had covid, but it was not long covid...that was the CLL tricking me into believing it was. The covid kicked in my CLL into high gear. Regardless, when I had covid, there is no energy, deep coughing is endless and fatigue is every minute. Your lung capacity decreases due to the respiratory issue from the lungs being compromised. So, covid will compromise your lungs regardless of the variant. The other thing is some people are more affected than others, so this is where it's "grey area". I don't have the answers to your question, but I will tell you that wearing a mask at this time of year in enclosed space is absolutely important not only for covid, but all of the other germs epeople are passing around at this time of year. I did get my flu shot, so I feel a little better knowing I'm trying to avoid the winter . Happy holidays to you and yours as well and keep the faith for your husband.
Let me tell you what I am doing regarding Covid/Flu precautions: I've had 4 Moderna Covid shots, plus an Evusheld with booster 6 months later. I've had my Flu shot, as well. I avoid large indoor gatherings and wear a mask when shopping. Should I contract Covid, I will immediately get Paxlovid pills. I feel pretty safe, and I am conducting a fairly normal life....
Thank you so much! Yep, we are fully vaccinated and masking up for sure, had to cancel Christmas on Christmas Eve, the whole family came down with Omicron but somehow I either didn't test properly or I was spared. My son completely asymptomatic. Hoping that some day, this horrible virus will continue to be less virulent. I keep telling myself that running will increase my lung capacity and be a blessing if and/or when Covid strikes. The CLL fatigue has definitely plagued my husband, but looking forward to completing the last O infusion early in 2023. The best to you and your family!
Thanks for posting - from all the responses you've found lots of runners... I was diagnosed with CLL 5 years ago and they told me just Watch and Wait.. You get this earth shattering news and the doc says best thing to do is nothing.. I had to find an outlet and like many of you I got back to running, just like I used to do when I was in the Army.. years ago.. I try to do 4 miles every other day - a good 40 to 50 minutes for this 63 year old.. Its been a good thing - the family will join me in a 5K - a couple every summer. Something we do together.... The good news is that I'm still watching and waiting, and I feel like the exercise has helped keep the white count in line. I agree - and encourage others to get out there and get some exercise.. It makes me feel like I'm doing something to fight this cancer.. God Bless - and keep running...
God bless you too. Sounds like you have that same passion for the wind against your face and the suns warmth and light shining on you. It absolutely makes you feel healthy and alive. Keep up the great work and let others know that this is the key for our mental and physical strength.
Wow, I'm impressed, worldclass marathoner. What kind of times do you have to run for that distinction.
My PR is 2:55, but interesting enough, I didn't start running till I was 28. I was a pioneer. Fred Lebow(who created the NYC marathon) use to send me to races. I was the weirdo because I just ran, no speedwork, no team. He loved the purity of my talent. Back then, I was 34th or 35th in Boston OV women and top US runner in my early 30's. Fast forward, I added speedwork after thaking a break for family and 3 children. I started competing as a Master and making money, so that motivated me to continue running for 30 years. My gues is that I had run over 300 races, 30 being marathons and at one time I won nationals in the marathon age group. I have an extentsive resume, BUT Joan Benoit Samuelson, our first gold medalist in the Olympics could still finish 1/2 an hour ahead of all of the rest of us in that age group as master runners. Just shows you what talent these Olympic Gods and Godesses are truly blessed with. Totally supernatural gifts! I was just "good" in comparison.
Well, use some of that talent to stay a few steps ahead of the CLL!!!!
Adorable!
Thank you for your encouraging story. I wanted to clairify that you went on Calquance then stopped ? and went on Gayzva then stopped that now drug free?
I am on 100mg Calquence, twice a day for "life" for now. The Gazyva was for 6 months only. So I was on both drugs at one point, but now only Calquence. I will tell you that the Gazyva effected my bloodwork numbers drastically in a positive way. I am to get bloodwork next week and I am curious to see how my body if doing since I haven't had the Gazyva in a couple of months. My body indicates that I am doing well, based on the mileage I can run. Hope this helps!
hi there ! It’s amazing how fast you run!
Just out of curiosity , is your chronic cancer disease CLL , IGHV-mutated or IGHV-unmutated?
Thanks. For a minute it sounded like you were drug free. My whole life I have been a consistent walker. Not competitive.
You are smart. What a great gift for life to be a "walker"...to walk with purpose is such a simple concept with so many rewards. Well done.
You made me smile..."How fast you run!". I used to run fast, now I just run for pleasure. I am enticed to attempt racing once I see my CLL is months stable, but it has only been 8 months since I started treatment. I only started running 5 months ago, so I am in a watch & wait to see what my body wants to do once I have a reguar base of 2 months of moderate running 6 days a week with one long run. I may add speedwork to lower my times, but I truly haven't gone beyond that thought. The temptation of racing again is always a battle of desire!! As for IGHV-mutated is where I am at.
good for you! wishing you many nice and pleasant walks and refreshing runs ! 
I am a long time competitive runner, mostly 5k and 10ks and cross country. I began running to supplement my first love cross country skiing in off season. Not world class but proud of my state age group championship in cross country skiing in my forties. I am nearing treatment and don't have the energy to do track speed work to prep for short fast races. I ski and cross country run for enjoyment, the trails are kinder to my back and from what I've read the uneven footing is beneficial for brain cognition because of the many micro movements and muscular adjustments. Similar to running backwards.
I really enjoyed reading your post and your experiences and upbeat attitude!
Thank you for the note! Your heart will allow you to find that strength to get back to what you want to do once treatment starts for you. It truly gives you that push to get back to your normal. Your body will tell you if and when it wants to be challenged. It will be so sweet when you can push yourself. Then you will know you will be ok! Good luck with the treatments coming up.
I, too, enjoyed your post. I am not elite at anything either but spent about 7 years taking care of my mother at the end of her life and really had nothing left in my tank by the time she left for Heaven. During that time my son and his wife opened a CrossFit gym but I was pretty much home bound with my mother so could never go or even take a walk with my hubby, she was bedridden and I rolled her every 2 hours for 2 1/2 years. It was a trying time for me but I loved her dearly and would do it all over again. But when she passed my son insisted that I come to the gym. So I began CrossFit at that time and LOVED it. My husband and I have been doing that for 9 years now and we also hike 2-4 miles daily with our dogs in the hills in the pasture behind our country home. It is some of the best time of our day because the dogs can run free and we see herds of deer everyday and we spend part of our hikes in prayer. I was diagnosed with CLL the year after my Mama passed. W&W for 2 years and then started ibutinib with no issues. Now I have been in clinical remission for about 4 years. I have had Covid twice and neither time was it anything more than just a cold. I thank God for that. I continued to exercise thru both bouts of Covid. I now get to babysit my new baby granddaughter each and every day. I feel truly blessed and will turn 65 this month.
Can I move in with you and your wife? hahah Your life sounds wonderful and blessed. Strangely, I too got sick after my mother passed, so I guess it was meant to be so we wouldn't worry our folks if we were sick too. Your story reminds me of a woman I ran with name Toshi D'Elia. She was the first woman in the world to break 3 hours in the marathon as a 50 year old. She had and has many national records as a master runner and continued to race in her 70's. She has many age group national records still to this day. She had to tend to her husband before he died and did not compete for a few years for the same reasons as you. She "got back on the horse" and started setting records as she raced. You too found the gym became a best friend, but more importantly, your son's happiest gift to you. It was meant to be that he opened a crossfit gym...just for you! Be well and remember how lucky you are to have this life you share with your wife and son.
Not what you're looking for?
You may also like...
Has anybody found that regular running helps with CLL?
Does CLL run in families
Can I be cured of CLL?
Shingles always a concern with CLL
ME/CFS or CLL Fatigue
experience CLL Ibrutinib Colitis
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
Total Knee Replacement and CLL Connected?
CLL and SPO2 Readings (Pulse Oximeter)
