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Thread: The beast revisits

  1. #441
    Administrator Top User ChemoMan's Avatar
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    Jun 2008
    Location
    South Australia
    Posts
    9,506
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    Baz and Anne are having a good time...excellent

    Enjoy
    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.

  2. #442
    Senior User Bob W's Avatar
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    Sep 2014
    Posts
    319
    You take care and go slow old chap.

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014
    10/14/2014-Carcinoembryonic antigen measurement (CEA) 0.8 ng/mL
    11/24/2014-Carcinoembryonic antigen measurement (CEA) 0.9 ng/mL
    02/20/2015-Carcinoembryonic antigen measurement (CEA) 1.6 ng/mL
    05/14/2015-Carcinoembryonic antigen measurement (CEA) 1.5 ng/mL
    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!
    08/24/2015-Carcinoembryonic antigen measurement (CEA) 1.4 ng/mL
    12/24/2015-Carcinoembryonic antigen measurement (CEA) 1.5 ng/mL
    03/25/2016-Carcinoembryonic antigen measurement (CEA) 1.7 ng/mL
    06/21/2016-Carcinoembryonic antigen measurement (CEA) 1.2 ng/mL
    09/20/2016-Carcinoembryonic antigen measurement (CEA) 1.2 ng/mL

  3. #443
    Top User mojo's Avatar
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    Apr 2010
    Location
    IL
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    2,308
    Glad you are having a good time!

  4. #444
    Moderator Top User jorola's Avatar
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    May 2014
    Location
    Alberta
    Posts
    961
    Awesome to hear!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  5. #445
    Top User
    Join Date
    Mar 2010
    Location
    durham UK
    Posts
    753
    making good memories with lots of fun, enjoy, sounds like a riot
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  6. #446
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
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    4,407
    Finally arrived home last night after a gruelling drive across Europe.
    You may have read of the sub zero conditions and a lorra , lorra snow in Europe.
    4 hours to get down the mountain, That was a hairy experience even with snow tyres and chains.
    Some heart stopping moments for sure.
    It became far too cold to ski with temps at the top of minus 26 C, so Friday we decided to pack and return with no end to the ultra cold period predicted.
    No fun I tell you in those temperatures despite the warmest gear.
    So we are home all in one piece (just) for a few days then off to Austria to stay with some friends in Neiderau, this time flying and only a short 1 hr drive from Innsbruck.
    Now I'll be able to catch up on forum matters.
    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. #447
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,102
    Barry, you simply have no time for cancer. Good on you!
    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. #448
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,407
    po mate,
    We don't have a bucket list as such, just a very large bucket.
    We started our married life with little, nope no silver spoon, hard work and perseverance and the good ladies astute financial management.
    As My BIL used to say, there are no pockets in a shroud nor room for a safe in a coffin.
    Due to other factors which I have only shared with Chemoman to date we have some little time to pack in as much as we can before the travel window closes.
    At this time I don't wish to share the reason, so forgive me.
    Anne and I have journied together through now 50 years of marriage through thick and thin times she has always been my rock, now this role will be reversed.
    As for myself, yes I fulfilled my aspirations even surprising myself when one remembers gravity and a low coefficient of friction are your friends on snow, falling back on basic techniques when things get difficult.
    I freely admit I had some trepidation before we started descending the Foglietta which is unpisted and unmarked, hence our guide. I'm guessing my heart rate was on the higher side and anxiety crept in (wrong, flooded in).
    The initial fall line was 37 degrees, hence a lot of jump turns by me anyway. But once I got a few turns in enjoyment took over.

    Our friends in Austria stems from the days when Anne was au paire to a family during her gap year and have remained staunch friends ever since.

    Baz
    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. #449
    Top User
    Join Date
    Mar 2010
    Location
    durham UK
    Posts
    753
    Baz enjoy Neiderau, its a lovely little village spent a day there many years ago, though no doubt it will have developed since then, hopefully not too much.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  10. #450
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,407
    John,
    hi pal, yes we know Niederau very well having been there many times since the 80's.
    The town hasn't developed so much and still retains its original Austrian character although the lift system has been hugely improved.
    The famile Thaler who Anne was au paire to for about 9 months are a lovely family remaining friends and the daughter Marie who became Annie's close buddy is of a similar age.
    We are taking some gear with us so may get in a bit of skiing, who knows, although the skiing is quite tame to be honest.
    Then on return to the UK we shall be off soon after to stay with our sons family in Dubai.
    Gad abouts, yeah let's do it whilst we can.
    Take care all.
    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.

 

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