long term effects from radiation the bone loss looking for answers im alone with this problem

tammy31269
tammy31269 Member Posts: 22
edited March 2014 in Colorectal Cancer #1
i cant find no one to relate about my problem and have no answers to find a match such as mine. i have bone loss mainly in my spine my 5th lumbar disc is half way gone, doctor says its from the radiation that its eating it up. plus i have damaged nerves from the tumors/operations. i have osteoporosis,arthritis,sciatica,scoliosis,neuropathic pain.i cant find no one who has this same problem..i cant be the only one, ive looked everywhere on the cancer sites and asked alot of people but no luck.i feel as a alien ive never met another female with my same cancer in my age group at the cancer center i went to i was like a lab rat, i was the only female there with colonrectal cancer this is a lonely journey.

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    Tammy
    I am sorry; I don't have this yet (that I know of). There has to be others out there that have it. How old were you when you were treated for cancer?
  • tammy31269
    tammy31269 Member Posts: 22
    #3
    AnneCan said:

    Tammy
    I am sorry; I don't have this yet (that I know of). There has to be others out there that have it. How old were you when you were treated for cancer?

    hi there im now 41 and i got the cancer at age 30 in nov.2000
    ive had a long rough road with this damn cancer im so sick of it but i cant do anything about a invisible monster living within.i wrote some things on my page i hope you can pull it up when you click on my name, but i am on a site for colon cancer friends anything you want to know they are so nice there and my page is up there at mycrcconnections.com onlinecommunity. check it out and write me. ive got alot of info and support on a daily basis, the owner her self calls and helps out. youll like it... my family is ate up with cancer. what is going on with your cancer and what happened with your bag you had? my bag is for ever they took out so much colon and my rectum is gone the tumors ate that up.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
    tammy31269 said:

    hi there im now 41 and i got the cancer at age 30 in nov.2000
    ive had a long rough road with this damn cancer im so sick of it but i cant do anything about a invisible monster living within.i wrote some things on my page i hope you can pull it up when you click on my name, but i am on a site for colon cancer friends anything you want to know they are so nice there and my page is up there at mycrcconnections.com onlinecommunity. check it out and write me. ive got alot of info and support on a daily basis, the owner her self calls and helps out. youll like it... my family is ate up with cancer. what is going on with your cancer and what happened with your bag you had? my bag is for ever they took out so much colon and my rectum is gone the tumors ate that up.

    You are a true Survivor!
    Tammy, you have been through a lot + here you are all these years later. You will be a great help to others on this board after all you have been through, + hopefully we will be of some help to you.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    A bit older than you (49 when dx, now 55)....but, yeah....
    osteoporosis from the treatments. Now taking Actonel, seems to be reversing the trouble.

    Less than 2 weeks before a 10-hour plane ride, I twisted wrong, and L5 went wacky....sigh...went to the traditional doc, he gave me pain killers, muscle relaxers, Naproxen....went to chiro and had daily adjustments for a week....seem to fix it...

    Are you taking meds+calcium+D?

    Hugs, Kathi
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #6
    Tammy
    I am so sorry that you are having these problems. It seems that there are many long term effects that just aren't discussed by doctors and haven't been officially investigated by the medical community. Have you posted your question on the long term effects board here? ... Lori
  • tammy31269
    tammy31269 Member Posts: 22
    #7
    Lori-S said:

    Tammy
    I am so sorry that you are having these problems. It seems that there are many long term effects that just aren't discussed by doctors and haven't been officially investigated by the medical community. Have you posted your question on the long term effects board here? ... Lori

    hi there thank you for the reply
    no i havent i dont know where it is trying to get use to this site im having problems with the ssid trying to see if my bone loss could be considered a disability
  • tammy31269
    tammy31269 Member Posts: 22
    #8
    AnneCan said:

    You are a true Survivor!
    Tammy, you have been through a lot + here you are all these years later. You will be a great help to others on this board after all you have been through, + hopefully we will be of some help to you.

    thank you so much
    im now old school survivor from all my family members who died just lost my mom to lung cancer, grandmother to stomach cancer, aunt to throut cancer im the only one standing and kind of mad about it, but i know to well how nasty this monster that lives within us can kill so fast and with no feelings in who it effects. im trying to get use to this site on how and where to go to answer and ask questions
  • tammy31269
    tammy31269 Member Posts: 22
    #9
    KathiM said:

    A bit older than you (49 when dx, now 55)....but, yeah....
    osteoporosis from the treatments. Now taking Actonel, seems to be reversing the trouble.

    Less than 2 weeks before a 10-hour plane ride, I twisted wrong, and L5 went wacky....sigh...went to the traditional doc, he gave me pain killers, muscle relaxers, Naproxen....went to chiro and had daily adjustments for a week....seem to fix it...

    Are you taking meds+calcium+D?

    Hugs, Kathi

    hi thank you for the reply
    ive been going to this back doctor for 3yrs, and i still have pain 24/7 i take gabapentin600mg, tramadol250mg, soma700mg it still dosent help but he wont give me anything else and i want to beat the hell out of him and let him have some of my pain for a week.lol haahaha i dont know what to do now
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #10
    tammy31269 said:

    hi there thank you for the reply
    no i havent i dont know where it is trying to get use to this site im having problems with the ssid trying to see if my bone loss could be considered a disability

    Long Term Effects of Treatment
    Here you go: http://csn.cancer.org/forum/169


    If the link doesn't post go to the left side of this page, up to the CSN tab and click on Discussion boards, scroll all the way down to the bottom of the page and it is the 6th from the bottom. Good luck ... I can feel your frustration and hope you can find what you need. ... Lori
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    tammy31269 said:

    hi thank you for the reply
    ive been going to this back doctor for 3yrs, and i still have pain 24/7 i take gabapentin600mg, tramadol250mg, soma700mg it still dosent help but he wont give me anything else and i want to beat the hell out of him and let him have some of my pain for a week.lol haahaha i dont know what to do now

    How do you feel about complementary medicine?
    I am very lucky...my primary doc does acupuncture, so he's up with stuff. He had no trouble with me seeing a chiropractor...

    I take Actonel (risedronate sodium) once a month to strenghten my bones. Also Calcium with Vitamin D supplements. This helped with all but joint pain. I now take glucosamine/chondrotin daily. This is not a perscription, but works for me, although not everyone.

    I was blessed with a rather high pain tollerance, so the only thing I need on 'bad' days is Ibuprophen...I don't know what I would do without that stuff.

    Let me stress, tho, I check with my doc before I take anything...sometimes, the question I have to ask, when he doesn't seem to agree, is "I know you don't think it will help, but will it hurt anything if I take it?"

    Hugs, Kathi

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