New here-Stage 3 one year post surgery and 5 months post chemo

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akp0125
akp0125 Member Posts: 1
in Colorectal Cancer #1

Hello,

I am very new to this type of outreach so please bare with me. I was diagnosed with stage 3 colon cancer in November 2015 after a routine colonoscopy at age 50. I had no known risk or symptoms. I walked out of my career not knowning if I would return and underwent a colectomy 3 weeks later which resulted in the staging as cancer cells were found in most of the lymph nodes that were removed. I was then ported for 12 rounds of chemotherapy (Folfox). I did complete 8 rounds before the blood counts dropped too low and a decision was made to drop the oxaliplatin for the last 4 rounds. I was advised that I did not qualify for any of the medications to help stabilize the WBC counts.  

To avoid losing my job (as a civil servant I could have stayed off a while longer but would have been "bumped" out of the position near my home and sent anywhere a job was available) and as I could no longer afford to pay out-of-pocket for my insurance, I returned to work August 1, 2016, within 2 weeks of the completion of chemo. At first, I did well considering that no light duty is allowed. However, over time, I began to become extremely exhausted most days-a type of exhaustion I had never experienced as a mother/step-mother of 6 with a full time career (all now grown with the exception of a high school senior still in the house). Many days I am to the point of tears by 7pm or so.  I also began to ache, a stiffness and pain especially in my hips, legs and knees that is exacerbated after any period of sitting or laying down.  I have complained to the oncologist about the myalgia-type of pain to little avail-he offers no real explaination or advise.

Sadly, the only support group in my immediate area meets during the work day once per week and included only people who were either stage 4 or medically retired it seemed. I found no one to talk to who is in a similar situation. Looking for answers and guidance here-thank you for any input you can  offer.      

 

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  • Joan M
    Joan M Member Posts: 409 Member
    #2
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    I have experienced extreme

    I have experienced extreme tiredness too.  I need at least 9 or 10 hours of sleep.  Not sure what else to do about it.  I had problems with fybromyaglia which seems to improve if I get enough sleep also.  I also have arthritis that flares at times - my doctor said to take Aleve for that. 

    Sorry you are not able to any more get time off work to heal.  Some on this site have said that their employes allowed them to rest during work hours.  Does the Americans with Disabilities Act apply to you?  Maybe they can reassign you to a less demanding job.  Are you able to get any disability through your job, or is there any other form of insurance you could get through the Affordable Care Act or other state sponsored insurance programs?   

    Hope things work out for you.  It is hard to handle all that you have going on even in the best of health. 

    Joan

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #3
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    Welcome to the forum

    I am sorry that you have found yourself here. Not the funnest (although we aren't moribund by any stretch) forum to be a part of. 

    I am also sorry that you did not 'qualify' for any of the meds that would have helped you with your low WBC.  I'm sure you could have pushed for it though, as it is not right to be denied something that your body needs.

    I hope that you can get a handle on your exhaustion. Sadly, the body does not just bounce back after the horrors of treatment, and can take months, years, and sometimes never gets right back to where it was before.

    I presume your Oncologist is keeping up on blood work, and has noticed nothing like anemia or other blood disorders that would be causing the lack of energy.

    The only things I can suggest are making sure you are eating a helathy diet. And with the lack of energy, plenty of iron rich foods. Exercise; even though one might think that would make us more tired, is also important. Fresh air and sunshine. Drink lots of water.   The body is a miraculous thing, and can recover from many trials, sometimes it just takes time. 

    TRU

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #4
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    I'm sorry you're here, too. I

    I'm sorry you're here, too. I personally think we are kind of fun, Sue. I try to be fun about my cancer, anyway. I'm sarcastic and make light of it in my real life. I want people to see that a person can be a cancer survivor and not be down and depressed or maudlin all the time. And I don't want anyone to feel uncomfortable around me. 

    Anyway, I've also found that lack of energy and fatigue are something I deal with regularly. I also have a couple of other issues besides the cancer that cause fatigue, though, so I never know how much is from other things and how much is from cancer. During and after the chemo and radiation I was just exhausted. I'd lie in bed most of the time and stare out at the sky. I read a lot but the effort of holding a book and trying to mentally keep track of the story was too much. I wasn't interested in TV, either. I hope you're able to find something that will help with it. One of my blood tests showed that I was lacking vitamin B so now I take tablets every day. I was lucky that I don't have to get the shots.

    And, yes, exercise. I was recently at a cancer retreat for thr weekend and they had some pretty positive statistics regarding the results of cancer patients being active and exercising regularly. Even yoga is a big help.

    Jan

    Jan

    I hope it will get better for you. Being drained of energy is such a hard thing. I often describe myself as those milk commercials where the people are dancing and suddenlt they go all flat and slither to the ground because they have no strength.  

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    edited January 2017 #5
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    I can't speak for the rest...

    but my experience for much of the daily grind dealing with cancer/chemo/treatment side effects, is that over time you get used to it.  Things like your lack of energy may be taxing now, but that is at least one symptom that is likely to lessen quickly as time goes by.  And then all you have to deal with is all the rest of it, which you will become a champion at dealing with.  You truly will.  Just don't let being tired all the time crush your spirit and like everyone else said, keep a good diet and exercise.

    best wishes,

    Rick

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