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Thread: The beast revisits

  1. #11
    Moderator Top User Fourlegsgood's Avatar
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    Aug 2011
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    Hi Barry, Sorry but only just seen your post.

    I'm sat here wondering what to type. Words don't mean much but I am thinking of you.

    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.

  2. #12
    Super Moderator Top User
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    Barry, I'm so sorry to hear this. Sending you all the good thoughts....

  3. #13
    Administrator Top User lisa1962's Avatar
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    Baz

    As I sat and read your post earlier today, I have spent the last several hours thinking of how to even begin to respond to this news. After much thought, the only right way to respond I believe is to take a page from your book, one of inspiration and determination. So with that said, as the news saddens me, I believe we all have learned so much from you and for that, we are encouraged for you and will virtually walk alongside you without hesitation.

    While there are no guarantees in life especially when it comes to cancer, our Baz is determined to live his life as he chooses and it is your strength that makes life better for all of us.

    Lisa

  4. #14
    Senior User
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    181
    Barry, my greatest admiration and respect for your attitude. I hope this turns out to be an easy case for your excellent docs. Thinking of you and yours and hoping the follow-ups go as well as possible. #$@$% to it happening at all.

  5. #15
    Experienced User
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    May 2015
    Location
    so. ca.
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    91
    Reading this really bums me out.
    Im really sorry you have to go threw this crap again.
    Sounds like you got a good medical team and support group in place so you will win again.
    Hope you really wack the fish today and I expect a fish report later.
    53 yrs old
    4/30/15 colonoscopy Mass found
    5/21/15 staged 3 C rectal cancer
    7/3/15 finished xeloda and radiation 28 rounds
    9/30/15 LAR
    10/29/15 picc line installed
    11/2/15 start chemo 5 fu Oxaliplatin
    3/7/16 Finish Chemo
    3/16/16 C T scan clear pulmonary embolism blood clots in lungs 2
    3/17/16 start lovenox
    4/29/16 Ileostomy Reversal.
    5/1/16 start warfarin
    7/13/16 colonoscopy clear.
    9/10/16 C T scan clear

  6. #16
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    UK
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    So many support posts, thank you one and all.
    A few words to my mate Nick,
    As you say words and thoughts are easy for all of us.
    What counts is the feelings behind the words. I know your there Nick and thanks.
    GBM, Lisa,sacm ans Scott.
    Thanks, collectively we have all walked or are walking the same journey albeit with different types of cancer.
    Remember cancer is a just word to describe something our body does naturally, produce new cells. In our cases our bodies overproduce types of cells that our bodies cannot control.
    Cancer does not define who and what we are, unless one allows cancer to take over our thoughts and attitudes, that's a bad position to get yourself into.
    No way, no how do I intend to allow this to pervade my thoughts and take over my life. Period.
    Now to something far more pertinent, yesterday's fishing.
    Got 5 carp,
    4 common between 2 to 7 pounds.
    1 mirror carp at 11 pounds.
    A few bream and roach.
    Overall a nice day surrounded by good mates, wonderful scenery in a quiet and peaceful surrounding.
    immeditely next to our lake are the ruins of a ancient abbey that dates from the 11th century in which lives hundreds of white doves.
    if you wish research
    Bishops Waltham Abbey
    Defintely worth a look.
    My fishing and skiing (hopefully) days are not over and neither is my life, I have as many years yet with the person who has supported me every day for the last 50 years, my wife Anne.
    As I always say "I don't kinks how you put up with me for so long, If I was you I wouldn't ".
    Yes folks it is our 50th anniversary this year.
    Quite how we survived together for so long is one of life's great mysteries.

    Finally,
    Do I feel Ill, no, have I changed no, am I feeling depressed no, am I optimistic Yes.
    Thats it, no change then. life continues.
    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.
    Prostate Cancer confirmed Gleason 3+3.
    Active surveillance for time being.
    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.

  7. #17
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    7,131
    Barry, since we are all progressing toward life's end, should we sit, head in hands waiting for the end? Ah, I think you have already answered well.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  8. #18
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Location
    UK
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    Po,
    yes indeed I have answered POSITIVELY, not shouting in caps just emphasising.
    I have never been one to accept defeat easily and apologies
    Not bloody going to accept this without a darn good fight.
    The end for all of us in inevitable, that's life.
    Yet with the miracle of modern medicine, state of the art surgical techniques and one of the (if not one of the best medical teams anywhere) my bet is on Baz and my team.
    Prof Parvaiz is as I am is down to earth, says it as it is, well to me anyway if he says no chance then that's a fact. I however have a sneaky feeling given a fair wind and no hidden rocks to sink Bazzers boat my boat will be still be floating in a few moths if not sooner.

    I also have my Anaethtist angel Shirley as well as my dumpy little specialist nursing sister Angie, both of which are daily pick me ups when they visit and Shirley has never missed a day, even after she is in theatre she arrived in her working gear.
    Amgie arrived smiling and brought sunshine in her smile and demeanour, laughing and joking even when I was hurting she knew and would lean over whisper "I know now tell me we are here to get you well so stop prattling about". Sympathy not on your life, but a bloody good verbal kick up the backside , always amazing when a dumpy little sister says DO one tends to do.
    Anyway enough pratting about.
    My bet is 50 to 1 on my team and me.
    Good odds ehh, I'll put a tenner on Baz.
    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.
    Prostate Cancer confirmed Gleason 3+3.
    Active surveillance for time being.
    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.

  9. #19
    Senior User grade1teacher's Avatar
    Join Date
    Sep 2013
    Location
    West Virginia
    Posts
    274
    You have a great attitude. Best wishes to you as you continue this journey. Congratulations to you and your wife on 50 years!
    Aug 2013: Husband, age 62, diagnosed with Stage 4 colon cancer. Large tumor in sigmoid colon and mets to liver. Colostomy surgery due to a total bowel blockage.

    Sept 2013-Apr 2014: Port placed, 12 rounds Folfox (2 with avastin)

    May 2014-June 2014: 4 rounds Folfiri with Erbitux

    Aug 2014: Surgery at The Ohio State University James Cancer Center:
    colon resection, colostomy reversal, and HAI pump

    Feb 2015-Nov 2015: HAI meds no longer effective. Continue treatment at OSU, Folfiri with Vectibix.

    Nov 2015- pulmonary embolism

    Feb 2016- Apr 2016: Three cycles Lonsurf

    May 2016: Began one cycle of Stivarga, but did not finish.

    June 2016: Hospice

    July 2, 2016: My husband's brave battle with colon cancer came to a peaceful end. He is now at eternal rest.

    I have fought a good fight, I have finished my course, I have kept the faith: (2 Timothy 4:7 KJV)

    http://www.timeformemory.com/fh_obit...&locationid=16

  10. #20
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,131
    What 'some of us' lose sight of amongst all the noise and confusion is the fact that we are not living in a snapshot of time. Medical science is steadily improving the outcomes. New drugs and combinations, as well as surgical techniques are appearing. The anxiety may arise from the fact that the future is unpredictable - which was precisely the case before! If a clinical trial drug had not appeared at my first relapse, I frankly would not have survived 2009. Then, a new drug combo saved my bacon just this past year. From such as these, hope arises.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

 

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