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Getting sidetracked with cancer (Read 183 times)

    I’m struggling to get back into running after being diagnosed with stage IV colon cancer 3-1/2 years ago. The cancer is in remission now but after 7 months of infused chemo and now on an oral chemo (for life), it’s left me with bad neuropathy in my feet and hands.   My doctors have been great and finding meds to take some of the pain so I can run but it’s been a challenge not having much feeling in my feet.

     

    Wondering if others are dealing with the side affects of cancer

     

    I

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    rectumdamnnearkilledem

      You cannot know how much I appreciate you being here and running! 2 years ago I was diagnosed with stage 3b colorectal cancer, just days after my 44th birthday. After chemo and chemoradiation and surgeries (lost most of my rectum and sigmoid colon) I had about 6 months of finally feeling like I was getting myself and my fitness back. My running is still slow, but my endurance has really come back. My bike strength is not far behind my pre-diagnosis status.

       

      Earlier this month a routine CT scan found that a spot that we'd earlier determined to be scaring or random crud in my lung had grown -- and now had a smaller friend in the same lobe. Needle biopsy confirmed it to be a met, so the plan now is to remove that lobe, since it's likely that wedge resections will lead to future "whack-a-mole" spots. So much for my plans of a sprint duathlon in May and an Olympic distance in July. Now I'm just hoping that the anniversary trip that we had to cancel 2 years ago and reschedule for this June won't have to be pushed-back again. I'm not certain I can emotionally handle this dance, any longer.

       

      I never ended up with particularly bad neuropathy...what I have is fairly mild, though I do have some loss of sensation in my hands and feet. I take just 1 300mg gabapentin at bedtime. I take that as much for hot flashes, as anything. Treatments threw me into menopause, so I had a hysterectomy along with my resection. My oncologist very much advised against HRT, so the gabapentin is an off-label treatment for hot flashes and even at low dose really helps me.

       

      Some people have had some success with alpha lipoic acid for neuropathy. I believe B-12 can help, too (I may be remembering that wrong, but I seem to recall that it was a B vitamin).

       

      Are you a member of Colontown on Facebook (they have individual smaller groups for various facets of our disease...stages, surgeries, chemo, mets, survivorship, etc)? That organization has become indispensable to me through all of this. The only thing I find that every colorectal cancer support group lacks is help for those of us who are exceptionally active. I find that most of my peers do little more than walk and/or yoga. I've made close friends with the handful of people who ran and biked avidly prior to diagnosis. We've lost an extra something that I think it's difficult for many to really comprehend.

      Getting the wind knocked out of you is the only way to

      remind your lungs how much they like the taste of air.    

           ~ Sarah Kay

        Boy, you've been through a lot of crap!

         

        Thank you for responding to my thread! I know lots of people don't like talking about the big "C", but it's nice to know how others are dealing with their situations. I"ll have to check our the facebook group. I'm on another one for bladder cancer. Even though mine was diagnosed as colon cancer, it attacked my bladder and destroyed rather quick.

         

        One thing I found that cancer can't take away from us is our drive in our life as long as we don't give in. I remember after my surgery to remove my bladder and prostate, the surgeon wanted to make sure I was doing my breathing exercises until I blew the top off the breathing device!

         

        I've been taking 2700 mil of Gabapentin and that wasn't doing much so a new GP prescribed Cymbalta as well.  That's really helped with the pain. I'm also taking an oral chemo which isn't too bad but it prevents me from exercising for long durations  or really hard work outs.  I'll be 70 this year so I'm not looking for any PRs  but it would be nice to run hard without throwing up. (although I manage a 4th in AG)

         

        Life goes on....and we will conquer all!

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        rectumdamnnearkilledem

          HA!!!

           

          Boy, you've been through a lot of crap!

           

          Thank you for responding to my thread! I know lots of people don't like talking about the big "C", but it's nice to know how others are dealing with their situations. I"ll have to check our the facebook group. I'm on another one for bladder cancer. Even though mine was diagnosed as colon cancer, it attacked my bladder and destroyed rather quick.

           

          One thing I found that cancer can't take away from us is our drive in our life as long as we don't give in. I remember after my surgery to remove my bladder and prostate, the surgeon wanted to make sure I was doing my breathing exercises until I blew the top off the breathing device!

           

          I've been taking 2700 mil of Gabapentin and that wasn't doing much so a new GP prescribed Cymbalta as well.  That's really helped with the pain. I'm also taking an oral chemo which isn't too bad but it prevents me from exercising for long durations  or really hard work outs.  I'll be 70 this year so I'm not looking for any PRs  but it would be nice to run hard without throwing up. (although I manage a 4th in AG)

           

          Life goes on....and we will conquer all!

           

          I have one of those little breathing deals...I can get the floaty thing to the top without too much trouble. Even with asthma, the lung function test I had a couple of weeks ago put me at 105%, relative to women my age. I expect that will not be the case immediately after lung surgery. I've been told that intense efforts will be a struggle, but moderate aerobic stuff should be OK. I may not notice much difference in the longer distance sorts of things I love. Cycling or running uphill will probably be rough...and finish line sprints.

           

          Chemo really did a number on my lungs...I "ran" and biked through chemo, but the running included as much running as it did walking and 2 miles was about my limit. The oral chemo (Xeloda) I did during radiation really was more tolerable than the infused stuff, except for the hand/foot syndrome. I'm assuming that's what you're dealing with. I can totally understand how long-term use of that stuff would cause pretty bad neuropathy and skin issues.

          Getting the wind knocked out of you is the only way to

          remind your lungs how much they like the taste of air.    

               ~ Sarah Kay

          rlopez


            Hello. My name is Robert.
            CML, 7 years.
            Stroke 7 years ago.
            MRSA 5 years ago.

             

            Chemo rotted out my teeth - I've had three crowns and multiple fillings since my diagnosis. I have dry eyes and frequently (like, 3 or 4 times a year) give myself corneal abrasions. I have what I euphemistically call "chemo belly". My stoke left me with memory issues, migraines, and a weird speech impediment. And MRSA is the side effect that keeps on giving. It is the last thing that tried to actively kill me, exactly 5 years ago next week.

             

            I did manage to run 3 100 milers and a 150 miler after my diagnosis in 2014 and 2015, but I hurt myself in February 2017 and have never been the same. Pretty sure that my condition pretty severely impacts my ability to heal.

             

            Pneumonia is fun.

            Gizmo2019


              I have no advice but hope they find “easier” treatments out there. I commend you all for your determination.

               

              when my dad had neuropathy (diabetic) he was suggested to do epsom soaks and acupuncture. As an OT, we used to sometimes treat it with electric stimulation. All this is related to increasing blood flow and kick starting the surrounding available nerves.

              Christirei


                you guys are inspiring and amazing, I think exercise is an incredible boost to our mental and physical health, and persevering after cancer with running or cycling or whatever is commendable!

                 

                I have never been through any of what you guys are dealing with, but i have friend whose daughter has a genetic nerve disease and she has many problems with her feet. she has been doing epsom salt soaks nightly, and then she rolls peppermint oil and frankincense oil on the bottoms of her feet, she reports that it does help with her pain. Something to think about!

                zoom-zoom


                rectumdamnnearkilledem

                  Chemo rotted out my teeth - I've had three crowns and multiple fillings since my diagnosis. I have dry eyes and frequently (like, 3 or 4 times a year) give myself corneal abrasions. I have what I euphemistically call "chemo belly". My stoke left me with memory issues, migraines, and a weird speech impediment.

                   

                  I never knew about the dental thing until I had a molar spontaneously crack just as I was finishing chemo. The dry eyes thing...now that makes sense. I thought it was an age/allergies thing, but maybe not. I'm really sorry to hear of all of the crap you've been battling over the last 7 years. Fuck cancer.

                   

                  Your stroke issues would seem the most upsetting, I suspect. Chemo brain is bad enough (plus the long-term effects of repeated anesthesia). I struggle for words, can't remember shit, and often feel what it must be like to have early alzheimer's/dementia. I'd given thought to going back to school and pursuing a master's or some other specific training...but at this point I think that would be a depressing exercise in futility. Anyhow, someone needs to keep my adult kid with Autism and ADHD on-schedule for work and school so that he might eventually be a contributing member of society, so that's a gig I can handle.

                  Getting the wind knocked out of you is the only way to

                  remind your lungs how much they like the taste of air.    

                       ~ Sarah Kay

                  zoom-zoom


                  rectumdamnnearkilledem

                    you guys are inspiring and amazing, I think exercise is an incredible boost to our mental and physical health, and persevering after cancer with running or cycling or whatever is commendable!

                     

                    I really wish there were more studies comparing survival odds with and without exercise, though there are probably WAY too many factors that would make it impossible to yield any really solid results. And those of us who stay active (beyond short walks) during chemo or surgical recoveries really seem like an anomaly. On the couple of cancer support groups I've participated, we are exceedingly rare. I have a few good runner friends that I've made and we ended up making a private message group on FB, since we sort of felt like freaks when we'd ask fitness-specific questions that no one seemed able to answer.

                     

                    I like to think that staying active has worked in my favor, but I don't know if it was a physical aid as much as a mental one. I'm crazy stubborn (I blame my Viking ancestry) and I didn't want to have to start my fitness back from 0. There were definitely times when I questioned my sanity, though. Sometime I "ran" when I probably should have been napping...but I've never been much of a napper. And I still kicked my teenage son's ass in a 4 mile race back in Oct...because he's a lazy gamer. I'm still royally pissed that I don't get to race him in May. He's doing his first tri (PE class) and I was training to do the du at the same event. Dammit.

                    Getting the wind knocked out of you is the only way to

                    remind your lungs how much they like the taste of air.    

                         ~ Sarah Kay

                    rlopez


                      I guarantee that staying active helped me. Also, it gave me a great story... That One TIme where I took my oral chemo at mile 80 of a 100 miler... and then spent the next 8 miles climbing a hill trying (successfully) not to puke it.

                       

                      HOWEVER AND I CANT STRESS THIS ENOUGH...

                       

                      Mental and spiritual health is just as important as physical health. You have to give yourself a break. It's ok. 7 years into it, the hardest part is thinking back wistfully to the stuff I used to be able to do... that I just can't do anymore. Do I just need to try harder? Am I a big wimp? Am I just old? Etc etc. The weirdest thing is that once I got past the initial cratering from the disease, I recovered and kicked ass. Until I didn't. The "second crater" has been deeper and way more puzzling. But being down on myself for it is no help.

                       

                      Other people can be cool. I used to be cool. I'll remember that for awhile.


                      #artbydmcbride

                        You are very cool

                         

                        Runners run


                        undue monkey

                            You are very cool

                             

                            Thanks.... I hope to see you at some races soon 

                            Brilliant


                              SLOJim, I'm really sorry you're going through this and I hope that you find the physical relief you are looking for.  I don't have any advice on that since my journey has been very different.

                               

                              zoom-zoom, my fingers are crossed that you'll successfully end the whack-a-mole cycle.

                               

                              As a fellow cancer survivor, my wish for you both is that you know that you are strong and capable of pursuing your goals despite the physical setbacks you've encountered.  I give credit to an oncology nurse for changing the trajectory of my life last year.  I'd had surgery in Nov 2017, and the outcome of tests led to recommending either: 1. further surgery, 2. chemotherapy, or 3. watchful waiting.  I decided on option 3, but it was super stressful and by April I'd gained weight, wasn't regaining my running fitness, and went to a counselor because I wondered if I was depressed.  Then at one of the "watchful waiting" oncology checkups in April, the nurse came in to chat with me while the doctor was delayed.  Turns out she is an avid runner.  I spilled out all my fears like "I'll never PR again." ("Yes you will!" she said), "I'll never run a marathon again" ("Yes you will!" she said).  She was so kind and spoke words of life into me that for some reason I'd been unable to hear from anyone else during those 6 months.

                               

                              In the ensuing year I have lost 25 pounds and yes, I got a freakin' PR in the half marathon distance!  I know it won't always be great - especially if you are still undergoing treatment or have lingering issues like the neuropathy.  I still have occasional physical problems related to my diagnosis (just had a flareup which led to a really crap month of running or should I say mostly non-running) but I tried to see it as a minor setback.  When I get discouraged I think of her "yes you will!" words and I believe them.

                               

                              Best wishes to you both.

                              zoom-zoom


                              rectumdamnnearkilledem

                                Thanks, Brilliant!

                                 

                                Man, that watch-and-wait scenario is really something. A couple of friends of mine had that option, after a full clinical response to radiation and chemo. It wasn't an option for me, but I'd really given thought to how I would have handled it, had it been on the table. I think there was a 50% chance risk of recurrence at the site. I don't know a lot of people who were willing to risk it, but I know there have been quite a few cases who were NED several years later.

                                 

                                PRs after cancer is really impressive! I doubt that I'd have any shot of that at a shorter distance, like 5k...but maybe it could still happen in the HM or longer duathlons. At this stage in the game I have age and menopause playing against me, as much as anything. My HM PR is about a decade old and was set when I was training for marathons. I became disenchanted with that distance pretty fast! Tongue

                                Getting the wind knocked out of you is the only way to

                                remind your lungs how much they like the taste of air.    

                                     ~ Sarah Kay

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