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Thread: My sister has stage IV and I am so worried

  1. #1
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    My sister has stage IV and I am so worried

    Hello everyone ,

    Not sure where to start in my posting so here it goes my sister was diagnosed stage IV colon cancer sept 16. Cat scan showed it is also on her lower spine and small part right hip the dr said those spots could of been there from the beginning of the disease .
    She has had 15 rounds of chemo . 2 cycles of radiation for pain back in January
    She went to hospital this weekend because she had what they thought was a UTI about after cat scan it showed the colon was breaking into small pieces and going into her bladder . She is being treated in hospital on antibiotics . The dr said if this keeps happening she will need colonoscopy bag permanently . She was suppose to go to John Hopkins this Tuesday for second opinion but will still be in hospital for this infection.
    Anyone ever hear of this happening and what they did for it . Sorry for the long post I am so sick with worry I don't know what to do .

    Thanks for listening
    Cammie

  2. #2
    Moderator Top User Fourlegsgood's Avatar
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    Quote Originally Posted by Cammie854 View Post
    Hello everyone ,

    Not sure where to start in my posting so here it goes my sister was diagnosed stage IV colon cancer sept 16. Cat scan showed it is also on her lower spine and small part right hip the dr said those spots could of been there from the beginning of the disease .
    She has had 15 rounds of chemo . 2 cycles of radiation for pain back in January
    She went to hospital this weekend because she had what they thought was a UTI about after cat scan it showed the colon was breaking into small pieces and going into her bladder . She is being treated in hospital on antibiotics . The dr said if this keeps happening she will need colonoscopy bag permanently . She was suppose to go to John Hopkins this Tuesday for second opinion but will still be in hospital for this infection.
    Anyone ever hear of this happening and what they did for it . Sorry for the long post I am so sick with worry I don't know what to do .

    Thanks for listening
    Cammie
    Hello Cammie,

    I am sorry to hear about your sister. I must admit that I am mystified by her problems. It seems very odd that "the colon was breaking into small pieces and going into her bladder". Hopefully the doctors will get the problem under control.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  3. #3
    Super Moderator Top User Baz10's Avatar
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    Echoing Nicks comments I'm sorry your sister is facing these problems.
    I too have never ever heard of this, nor can I understand how "pieces" of the colon could physically get into the bladder as there is no physical connection.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  4. #4
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Dear Cammie: Is there any way you can ask the doctor about clarifying the remark that "pieces of the colon are winding up in the bladder"?? My best wishes and prayers that your situation somehow resolves itself.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Oncologist estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  5. #5
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    Thank you all for replying
    I put a call into my sister oncologist
    Waiting to hear back from him .
    This was told to my brother in law from oncologist that was at the hospital not her regular dr .
    She is in South Carolina I am in NY so
    I am getting whatever information I can get from her husband .
    Today I spoke to my sister and she said her pain is less they have her on a drip for pain and antibiotics . And she will need to stay on antibiotics to prevent this from happening again .
    I don't think she is getting the best care in South Carolina I wish she would just come back home up North . Hopefully we can get her appt again at John Hopkins in aug so they can give us a second opinion.

    Thanks again
    Cammie

  6. #6
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    I wish your sister well, this is a horrible disease and takes an entire family of love and support to battle it!
    Stage IV Colorectal Cancer Fighter

 

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