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Thread: The beast revisits

  1. #1
    Super Moderator Top User Baz10's Avatar
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    The beast revisits

    Having had a year of hell in a handbag only lightened by skiing, we retuned yesterday from supporting our grandson competing in the first round of the British national Optmist sailing championships where for an 11 year old he finished overall 14th out of a fleet of 203 with ages up to 15 in fluky wind conditions. Saturday was blustery and Sunday very light winds changing 50 degrees, he came 1st in these conditions.
    Already selected as a member of the GBR junior team.

    That's the good news, the bad news is my CRC has returned confirmed by my GP today, site is at the anastmosis of the previous aurgery, and with only 16 inches of original colon remaining they dont have much if anything to play with.
    nice one ehhh.
    Staging is of course IV being a recurrence but have to have a colonoscopy again this week and a PET scan week after next to see if the bugger has gone walkabout and then meet my surgeon Professor Parvaiz again within the next two weeks.
    Demoralised of course, but not overwhelmed as I was expecting the bad news.
    One thing, it pays off listening to your bodies messages.
    My GP and I obviously didn't joke about as we normally co, it as crazy as that sounds but we both we a little light hearted about the news Mark saying, you'll treat this the same as you have before.
    I hesitated in replying as frankly I have had enough of laying on a table and being cut up and recovering.
    Dont know as yet how my BP and vascular issues will influence any decisions.
    This however will turn into a family discussion as it always has And a decision will be reached, myself of course having the final word.

    We haven't as yet broken the news to the family, this will be done after son and heir returns to Dubai from his flight to Kiwiland.
    I won't risk his mind being elsewhere with close to 500 passengers behind him, that would be grossly unfair to Simon his crew and the passengers.
    Daft maybe but that's the way it is until he is back.

    Will keep you all posted as to how this long or short journey progresses.
    Now it is 2.30 AM and I am going to try and finally get some shut eye as am off fishing tomorrow come hell or high water.
    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.
    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.

  2. #2
    Top User mojo's Avatar
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    IL
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    Damn! I'm sorry it's back. I'll be hoping and praying it is just at the one area and can be gotten rid of. My money's on you. Enjoy the fishing! I'm here if u need a shoulder

  3. #3
    Super Moderator Top User Baz10's Avatar
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    Thanks mojo, I will take you up on that for sure.
    Just trying to get my head round it at the moment.

    It is what it is and I will deal with it.
    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.
    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.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,730
    As if life had been easy as of late. Lying down on that table in pain then waking up in more pain is not my cup of tea either. Your life seems one of battles and, disappointing as this is, a full examination and report from "damage control" is in order. We will wait for that, and hope and pray in the meantime.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Barry indeed it is what it is

    You certainly have been in the wars mate, no two ways about it. If suffering has a redemptive value then you are destined for heaven...as are many others here.

    Break the news gently mate especially to Anne
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #6
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Location
    UK
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    po,
    Trying to put a lighter spin on things, it's not the damage already done its the damage that may be done either by the beast or by the surgeon or whoever.
    Got to say my surgeon isn't the most handsome of "gentlemen" but he is by far the best CRC surgeon in the whole south of the UK.
    So I firmly beleive I'm in good hands so to speak.
    He is the with Jim Khan the leading Da Vinci surgeon as well as a master at laproscopic procedures and is professor of surgery having done a huge amount of research into CRC having published many peer articles.

    Its a bummer isn't it (pun intended) Di going down and now me, on a lighter note I'm betting Di will bounce back as well as myself as we both have huge motivation.
    Im not being flippant Beleive me, but I'm not one to let stress get to me too much anyway and as I've always said if it did come back I'll deal with it now I have no option but to do what I said.

    So I'm guessing within three weeks we should have a fully worked up plan.
    when known I will post it.
    Now just finished making up my trout pellet paste, cut the luncheon meat in squares and waiting for Annie get your gun to arise as she is going to the village coffee morning (Bitch in the conversational sense and coffee as I refer it as).
    staying cheerful and upbeat.
    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.
    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.

  7. #7
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,284
    Arthur mate, The better half already knows and indeed it is what it is.
    As said it is going to be a very interesting two or three weeks before I (we ) know exactly what the buggers plan for me is.
    Ive got all my three senior GP partners on my side, one heads up the southern GP Cancer network, so on my doorstep I have incredible support already.
    I can only say I have no intention of following my brother in law who we lost late last year to CRC. George was 10 weeks from diagnosis to burial.
    Nope that ain't going to Baz that's for sure, after all the snow awaits.
    Well that's another story but it is my motivator amongst others.
    Must go my carp await.
    And promise me mate, you will take care.
    Love to Jane.
    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.
    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.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,730
    Barry, I have been personally ready to go, off and on, for several years now. I have abandoned my claim to life, but it just has not happened. I knew mine was serious in 2015 at this time, as it penetrated my small intestine and that was a painful sign. Yet, I remain, in one of the most profound mysteries of my life. My take on us survivors is that we have work yet to do. And, while I have a million-and-one tasks at home (not minding DW's), I would rather be right here, right now. The extremes of human experience are the most profitably shared. Just as team members are drawn together in victory, we are also drawn together in this fight - whether in victory or loss. We are the human team.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

  9. #9
    Regular User
    Join Date
    Jan 2016
    Location
    Tipton, UK
    Posts
    35
    Sorry to read that it has returned, try to remain positive and strong (easy to say as I am not in that situation), and my thoughts and prayers are with you and your family.

    Steve

  10. #10
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
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    Po,
    Well said indeed, it is what brings us together and I have many unfinished chapters to write in my life.
    Being here amongst our extended family and helping gives one purpose, after all I have walked this path before and as the saying goes experience counts in this skirmish.
    Just another barnacle on the wheel of life, ehh.
    Steve,
    I am always positive, little really gets me down the only thing that does irk me a little are those that opt to roll over not using the gifts that we human beings have of clear thought, fortitude and beleif be it in the spiritual or personal sense.
    I have complete faith and respect for my eminent surgeon and my GP's they have not let me down (except they did take a year to diagnose my original CRC) nor will they.
    I am banking on getting back to our place in the Haut Savoie in the winter, maybe not skiing, well, we shall see Barry being the eternal optimist.
    The thoughts of getting back there have got me through two major surgeries and the quickest recovery possible.
    enough Baz
    It is what it is and I shall deal with it.
    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.
    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.

 

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