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Running with leukemia (Read 131 times)

Cubdrvr


    been running for several years for fun and health.  Nine months ago I was diagnosed with chronic lymphocytic leukemia.  This type of leukemia is treated by watch and wait until certain parameters are met(unexplained weight loss, night sweats being a couple).  Been told to continue living as I always have, which have been trying to do.

    My white count began at 66,000 in February and increased to 89000 by August.

    i am 58, male.  My 5k and 10k times have been around 9 min mile average for several years.  Now am averaging 10 min mile,mand that's a struggle.  Never seems like I am able to get enough air. My oxygen levels are in normal range.  Am having issues with cramping  post run on occasion.  Not getting much constructive advice from Drs..

    Any fellow runners with recommendations for supplements or change in diet that could help?

    Joann Y


      been running for several years for fun and health.  Nine months ago I was diagnosed with chronic lymphocytic leukemia.  This type of leukemia is treated by watch and wait until certain parameters are met(unexplained weight loss, night sweats being a couple).  Been told to continue living as I always have, which have been trying to do.

      My white count began at 66,000 in February and increased to 89000 by August.

      i am 58, male.  My 5k and 10k times have been around 9 min mile average for several years.  Now am averaging 10 min mile,mand that's a struggle.  Never seems like I am able to get enough air. My oxygen levels are in normal range.  Am having issues with cramping  post run on occasion.  Not getting much constructive advice from Drs..

      Any fellow runners with recommendations for supplements or change in diet that could help?

       

      A couple of questions. When is the last time that you saw an oncologist? Has someone confirmed your diagnosis by examination of your blood, bone marrow, and/or lymph node including flow cytometry? Your doctor should be able to answer these questions. You want to make sure that the diagnosis is correct and not presumptive. It is not uncommon for a patient to go for years with a presumptive diagnosis of CLL and then later to find out it was a different kind of leukemia. What is your current white blood cell count? 66,000 to 89,000 is not an insignificant change. What are your hemoglobin and ferritin levels? When you say oxygen levels are in normal range, do you mean hemoglobin? If you are anemic (i.e. low hemoglobin) and/or have low ferritin, that could make it feel like it is hard to breathe. You should have those checked, you might be a candidate for iron supplements. One can overdose on iron so find out if you need them. Of course it doesn't hurt to eat a well rounded diet to include plenty of dark green leafy vegetables (these contain iron). Off the top of my head, those are the issues that I can think of. Most importantly, I would make sure that you have seen an oncologist and get a current complete blood count (CBC). You may need further evaluation for disease progression.

      Cubdrvr


        Saw my oncologist in August.  Also should mention that my lymph nodes in neck and groin as well as my spleen are swollen.  I did have FISH panel at initial diagnosis in February.  Defective chromosome was 13q which is supposed to be lesser risk by a degree.

        doc was not too concerned by w.c. Increase and told me to come back in 6 mo. Rather than 3 as long as nothing extra ordinary happens.  Only panel item low was platelets at around 100.  Hemoglobin was right in middle of normal.

        i suspect the blood just isn't as efficient with extra white cells taking up room.

        bhearn


          Talk to srlopez.

          Joann Y


            Great, it sounds like you have had a proper work-up.

             

            Honestly, if you were my family member, I would tell you that you should schedule an appointment with your oncologist. It's been 4 months since your last visit and that is a more than reasonable amount of time to "watch and wait", especially since some of the things that you mention worry me - your young age, enlarged lymph nodes and spleen, increasing white cell count, and now, shortness of breath.

             

            As an aside, if you do take any supplements (herbal or otherwise), be sure to mention these to your doctor just like any other medication that you are taking. This can be important to avoid any interactions now or in the future.

             

            Cubdrvr, best of luck and warm wishes to you.

            rlopez


              I have CML.  I actually was in "watch and wait" mode too for a number of years, but it has been much more lively since September 2012.

               

              The out of breath thing is not uncommon (and I do so love the night sweats).  That's really tied to your iron and your rbc.  I'm frequently anemic either because the crappy white cells take over or because some of the meds.

               

              You CAN run through it.  Sometimes.  It really depends on a variety of things.  You will be slower.  That is unfortunately part of the deal.  Try not to let it get you down too much (easy for me to say; it frustrates me too). It beats the alternatives and life is much more fun when (slow) running is involved than lying in a bed.

               

              Not sure what to say about the cramping.  Sickness aside, in general, cramping at the ends of runs is related to pushing your body harder than it wanted to go... try to give yourself a break.

               

              I don't know what meds you are on nor how many of your wbc is/are viable... be aware that infection is the huge gotcha.  I currently have my wbc back under control (12k as opposed to a ridiculously high number), my last bone marrow biopsy came back with ok results, and I run lots. Slowly.  Yes, it frustrates me to train hard and not see the results I'd like. Then again, aside from speed, I've managed to complete 3 50 milers, 1 62 miler (that I weirdly won), 1 100, and 1 150 this year.  I've also been through chemo, radiation for a metastasized bit of happiness in my left lung, and duked it out with a variety of MRSA infections... the first one in March/April almost did me in.  You have to be careful.  Constant vigilance. 

              If you run trails or if you are prone to falling (I am, sigh) or depending on what meds you are on, make sure to keep track of your platelets alongside the wbc and rbc and iron indicators.

               

              I was diagnosed in September 2012.  I switched to a vegan diet in March 2013. I lost weight (chronic prednisone had puffed me up), my blood pressure...which had been borderline high... dropped a bit, and felt ok, but it was challenging.  At the advice/urging/forcing of my onc and dietician, I added whey and eggs back in December 2013... and I feel mo bettah. I cheat with sushi (once a month?) before big races because I always have, but otherwise I'm vegetarian.  Would I suggest that dramatic a diet switch for you?  No.  Well, maybe.  I'm sure you get people giving you "helpful" diet info all the time about various food magics that will cure what ails you.  Just remember to smile because people mean well.  I feel good these days.  Just remember that life is precious and fun. Or should be.  Food and drink and running are all parts of that.

               

              Supplements? That's how I treat whey, but my dietician and I are firm believers in "get what you need from real food".  I try to stick with that.  Except for iron when I'm anemic. Do NOT supplement with iron on your own, cowboy style.  Find out if that's what your issue is.


              Last thing for now, 66k to 89k in six months is not insignificant.  Prayers.

               

              God bless and Merry Christmas if that's your thing.  Happy running, albeit slowly, in any case.

              Cubdrvr


                Thanks to both of you for the great advice and encouragement.  I will probably go in early or at least do blood work ahead of my appointment.

                My Drs. Are basically telling me that the wbc is not as critical as once thought, and that it can be skewed depending on where they are hiding(bone marrow, spleen, lymph nodes).

                My days so far are basically good, with an occasional crappy one thrown in.  Definitely don't have stamina I once had and have adjusted accordingly.  Sounds like I can keep doing what I have been, just take more time.  (Ran a 5k today with a small group .  I came in last.  Same group last year I was first).

                I have read enough to know that CLL is a very individual disease, and affects us all differently; one size definitely doesn't fit all.

                Again, thanks and yes "Merry Christmas" and positive thoughts back to you both.


                Feeling the growl again

                  Nothing to add beyond what Joann has said.

                   

                  My thoughts are with both of you in this thread dealing with these issues.

                  "If you want to be a bad a$s, then do what a bad a$s does.  There's your pep talk for today.  Go Run." -- Slo_Hand

                   

                  I am spaniel - Crusher of Treadmills

                   

                  Cubdrvr


                    Well it's been interesting times since my original post just a few weeks ago.  About 2 weeks ago the stomach flu came to our home.  I didn't fare too bad, just a couple days of bottom end trouble.  A day or so after beginning to rebound I had to go to work(time specific work that involved other workers that couldn't be delayed).  Put in 3and one half long days sitting at the controls of my airplane.  Came in at mid-day, job completed, feeling great, but tired.  An hour later was on the couch with high fever, which was later diagnosed as prostatitis.  I've had it before after putting in long hours on my rear end, not fun.

                    Was put on antibiotic as in past and started feeling better and fever dropped some.  However, that night experienced severe pain under left ribs.  Was eventually sent in for a cat scan and was discovered to have an enlarged spleen the size of a football which had spontaneously begun bleeding.  Had a splenectomy the next day.

                    Was discharged yesterday and am recovering quickly.  Just a couple observations: even though my spleen was healthy when removed I feel better than I have for 14 months.  I didn't mention in my original post that I had a slightly enlarged spleen at the time of my CLL diagnosis in Feb. 14.  I believe this was leading to shortness of breath and trouble with digestion.  I've had a very painful left shoulder joint for over a year. Recently had a cortisone shot which didn't work.  Was going to get a mri after holidays to see if I had a rotator cuff issue.  Woke up after splenectomy and pain was gone and I have full range of motion.  Googled it and sure enough that can be a byproduct of a swollen spleen.

                    My white counts are down and platelet count went from 95000 preop to 200.000+ postop.

                        Anyway, I am really looking forward to putting on the running shoes again.  Have a 10k on New Years Day.  I won't be running it, but hope to walk it.

                    Joann Y


                      Cubdrvr, I am glad to hear that you are feeling better despite everything you have gone through over the last few weeks. Sounds like you have really been through it. I can't imagine. I hope you get to do that 10k, sounds like just the right thing!

                      Cubdrvr


                        Thanks.  I am feeling exponintially better with each passing day.  Fast recovery has always been my m/o.  Will try to keep my post updated as time goes by.  Cubdrvr