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zorra
zorra Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
Hello everyone! I found this site last night and have been reading ya'lls posts...Thanx to everyone for sharing. I laughed and cried reading your stories and feel blessed to find this site.I have thought I was "being weak and feeling sorry for myself" until I read posts till wee hrs of morning,now I realize it's part of the journey!
I am 12 mos post 35 rads and 9 wks cisplatin for cancer of larnyx 1 lymph node. Pet scan in April showed ca but following biopsy showed no cancer,not even pre-ca at this point. 6 mos post treatment my throat swelled shut,had emergency trach.Still trying to live with that and turkey and hard as a rock throat!Does anyone else post trtmnt still dealing with extreme tirdness and weak feeling? I feel like I'm still "recovering" a year later,is this"normal"?My prayers are with all of you.
Bev

Comments

  • RushFan
    RushFan Member Posts: 224 Member
    #2
    Welcome
    Hi Bev, sorry to hear about the challenges, hang in there.

    As to the extreme tiredness I'm with you, though I'm feeling much better as of late. I would highly recommend some very light exercise if possible. My wife really pushed me to take a short walk in the evenings and it really made a difference. The loop around our block is about a half mile and in the beginning I couldn't make it half way. Most nights I would rather stay on the couch but when I walked I felt better.

    My doctor's have held to the one year "recovery" model, but we all all different. Like many have posted before...I'm wondering what my new "normal" will be.

    All the best to you.

    Chuck.
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    RushFan said:

    Welcome
    Hi Bev, sorry to hear about the challenges, hang in there.

    As to the extreme tiredness I'm with you, though I'm feeling much better as of late. I would highly recommend some very light exercise if possible. My wife really pushed me to take a short walk in the evenings and it really made a difference. The loop around our block is about a half mile and in the beginning I couldn't make it half way. Most nights I would rather stay on the couch but when I walked I felt better.

    My doctor's have held to the one year "recovery" model, but we all all different. Like many have posted before...I'm wondering what my new "normal" will be.

    All the best to you.

    Chuck.

    How were you before cancer
    Hi Bev

    I'm just about a year post 39 Rads, cisplatin X3, and a selective neck disection. I was also about 50 lbs overweight at diagnosis.

    I was 50 at diagnosis and have been a runner exercise person, weight lifting kind of guy all my life. So you have to benchmark yourself. It takes the same amount of time to get back in shape than it did to get out of shape. I kept 40 of those pounds off and just got back from running 4 miles an hour ago. I also just finished 3 sets of weight training in between my chores of laundry and supper preparation.

    I think you just have to start doing something, walking is an excellent start. I started lifting just the bar on the weights post treatment. That was 15 pounds. My son made fun of me. Exercise helps in every facet of your life, eating, digestion, sleeping, and more importantly mental well being. Now go out and take a walk.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Fatigue
    Fatigue can be a sign of possible thyroid complications, which is not uncommon after H&N radiation. Not that I'm saying that is the cause of your fatigue. I mean you are still healing from the battle your body just went through.

    TSH (blood test) is one indicator of potential thyroid problems. I know mine has been on the steady increase over the last few months since treatment. I started at .9, now pushing 5.0, though it hasn't been an issue as of yet.

    Again, not meant to plant any thoughts in your head, but also, something else to be aware of.

    Best,
    John
  • zorra
    zorra Member Posts: 7
    #5
    RushFan said:

    Welcome
    Hi Bev, sorry to hear about the challenges, hang in there.

    As to the extreme tiredness I'm with you, though I'm feeling much better as of late. I would highly recommend some very light exercise if possible. My wife really pushed me to take a short walk in the evenings and it really made a difference. The loop around our block is about a half mile and in the beginning I couldn't make it half way. Most nights I would rather stay on the couch but when I walked I felt better.

    My doctor's have held to the one year "recovery" model, but we all all different. Like many have posted before...I'm wondering what my new "normal" will be.

    All the best to you.

    Chuck.

    Welcome
    Thank you Chuck,I'm glad to be here! Good advice and I apreciate it!No doubt walking will be a great way to start the climb to better health.
    take care,
    Bev
  • Scambuster
    Scambuster Member Posts: 973
    #6
    Hi Bev,

    Glad you found us here. On your fatigue, it can be a whole host of things causing it, but most likley is the vital organs are not all working properly. This could be due to your general helath condition, lifestyle and effects from the treatment. Treatment is probably a big part of it.

    I took the approach to do whatever it took to get everything working again. I have focused on diet and supplements and have had great results. I have gone mostly Vegan these days. You can go to my Expressions page for a list of what I take in the way of Vitamins and Supplements. If you do take this approach, I would strongly advise you have a good Naturopath to guide you. Unfortunatley the view of conventional Doctors is not alway in agreement with this approach, but my Doctors are now alway very surprised and happy to see my rebound to good health. Giving your body what it needs to recover and function properly is vey important.

    I went from chronic fatigue - which I have had since 1990 to now feeling great with loads of energy. I had a very rough time in treatment and was hospitalized for several weeks during and after. I had SCC of the tonsil - Surgery to remove tumor, then 7 Weeks of IMRT, Erbitux completed all in October 2009.

    I started out post treatment with short walks and then over Christmas (My summer), did some light swimming. I am now 10 months out and I bike about 30 miles every Saturday and 10-15 on Sunday - Sore bum yes but no fatigue ! I also believe my immune systm is working now and hopefully that will help stave off any potential recurrence.

    Hope this helps in some way.
    Scam
  • zorra
    zorra Member Posts: 7
    #7
    ratface said:

    How were you before cancer
    Hi Bev

    I'm just about a year post 39 Rads, cisplatin X3, and a selective neck disection. I was also about 50 lbs overweight at diagnosis.

    I was 50 at diagnosis and have been a runner exercise person, weight lifting kind of guy all my life. So you have to benchmark yourself. It takes the same amount of time to get back in shape than it did to get out of shape. I kept 40 of those pounds off and just got back from running 4 miles an hour ago. I also just finished 3 sets of weight training in between my chores of laundry and supper preparation.

    I think you just have to start doing something, walking is an excellent start. I started lifting just the bar on the weights post treatment. That was 15 pounds. My son made fun of me. Exercise helps in every facet of your life, eating, digestion, sleeping, and more importantly mental well being. Now go out and take a walk.

    walking
    Thanks for the info! Wow! your exercise level is very impressive.I will start walking, I have 9 herniated discs from neck to tailbone,fibromyalgia,degenerative disc disease and of course arthritis among my health problems...but even I can walk some!!
    Would love to be able to do what you do!!You keep on going!!
  • zorra
    zorra Member Posts: 7
    #8
    Skiffin16 said:

    Fatigue
    Fatigue can be a sign of possible thyroid complications, which is not uncommon after H&N radiation. Not that I'm saying that is the cause of your fatigue. I mean you are still healing from the battle your body just went through.

    TSH (blood test) is one indicator of potential thyroid problems. I know mine has been on the steady increase over the last few months since treatment. I started at .9, now pushing 5.0, though it hasn't been an issue as of yet.

    Again, not meant to plant any thoughts in your head, but also, something else to be aware of.

    Best,
    John

    thyroid!
    John, thank you,you are exactly right! Rad did mess my thyroid up I have been on meds for it since Feb but forget that it can make you tired! I was 170 at diagnosis got down to 143,but I'm already back up to 160! So it is PAST time for me to help myself! Sometimes we just need someone to point out the obvious to us! Ya'll are a great bunch of folks and I am honored you took time to help me, if I can help anyone out there I'd be happy to do that! Take care John,
    Bev
  • zorra
    zorra Member Posts: 7
    #9
    Scambuster said:

    Hi Bev,

    Glad you found us here. On your fatigue, it can be a whole host of things causing it, but most likley is the vital organs are not all working properly. This could be due to your general helath condition, lifestyle and effects from the treatment. Treatment is probably a big part of it.

    I took the approach to do whatever it took to get everything working again. I have focused on diet and supplements and have had great results. I have gone mostly Vegan these days. You can go to my Expressions page for a list of what I take in the way of Vitamins and Supplements. If you do take this approach, I would strongly advise you have a good Naturopath to guide you. Unfortunatley the view of conventional Doctors is not alway in agreement with this approach, but my Doctors are now alway very surprised and happy to see my rebound to good health. Giving your body what it needs to recover and function properly is vey important.

    I went from chronic fatigue - which I have had since 1990 to now feeling great with loads of energy. I had a very rough time in treatment and was hospitalized for several weeks during and after. I had SCC of the tonsil - Surgery to remove tumor, then 7 Weeks of IMRT, Erbitux completed all in October 2009.

    I started out post treatment with short walks and then over Christmas (My summer), did some light swimming. I am now 10 months out and I bike about 30 miles every Saturday and 10-15 on Sunday - Sore bum yes but no fatigue ! I also believe my immune systm is working now and hopefully that will help stave off any potential recurrence.

    Hope this helps in some way.
    Scam

    health
    Wow! what a wealth of info! Thanx so much,it does help.
    all the best to you and congrats on the new baby!
    Bev

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