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Thread: Bob in Bonita

  1. #1
    Experienced User
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    Bob in Bonita

    Haven't seen you on here in a while Bob. Are you doing okay? Hoping you're on vacation or something.
    Judi
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED

  2. #2
    Moderator Top User BobInBonita's Avatar
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    Judi,

    Several things going on, none too serious, one of my own making.

    I've wanted to write for awhile, but never quite get to my own story.

    Since starting home hospice, disease progression has been much slower than we expected. Our onc at U of Miami gave us the feeling that,based on my last scan, my disease was transforming into a faster growing phase. Our local oncologist agreed. Looking back, things have progressed,but nothing like we expected.

    Increasing fatigue is the biggest problem. I just sleep more on and off during the day. Hospice has really helped get my various drugs balanced out and timed better to optimize wake time.

    Pain has not been a major issue yet. I get back pains and a stabbing pain from under my right rib cage back towards my spine. That doesn't happen often enough for me to do any medication _ it's gone before Medes would take effect, but it really grabs attention. Movement seems to help minimize the back pain, so we started a project to keep me busy. BAD IDEA!

    The floor in our office has show deterioration for a while now. Marj and I have always enjoyed doing projects together. Taking up the old bamboo floor and replacing it with tile would have been a nice three day weekend project when we were younger. We knew it would take longer now that I'm on Oxygen ,but didn't expect this. It's been over 6weeks and looks great, but..... I'll post pictures in the lounge as it comes back together.

    Back to the fatigue, on good days, I just need a couple of naps a day. On a bad day (yesterday and today), I've slept virtually all day, other than getting up to eat or use the bathroom. Tomorrow will be better!

    My biggest disappointment with hospice is. The lack of testing and scans. I'm data driven and without new data, I just don't know where we are.

    Oh, and as long as I'm grousing, with the office torn up our router is down.

    I promise to write more in the future

    Best wishes to all

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
    Administrator Top User ChemoMan's Avatar
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    Thanks for sharing that Bob...take care.

    as a wise man once said

    Stay busy and live life to the best of your ability.
    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.

  4. #4
    Top User Carol Wal's Avatar
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    Always in my prayers................
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation

    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14
    3-12-15 Cancer is Back..Now in Hospice 4-10-15
    Passed on to Heaven 4-30-2015 Till you Hold me again...XOXO

  5. #5
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    Just checked in tonight to see how folks are doing. I'm glad to see that you are still chugging on, Bob. All the best to you and Marj.

  6. #6
    Administrator Top User Kermica's Avatar
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    Bob, I am very glad to hear that you are hanging in and living life. Also, glad to hear that things are progressing more slowly than expected. It is great to hear from you and to know that you are doing better than expected.

    Kermica

  7. #7
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    Glad to hear you are feeling well enough to redo your office floor. You have been such a help to me that I notice when you are not around. I hope your disease progression slows down even further. Wishing you the best.
    Judi
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED

  8. #8
    Moderator Top User ddessert's Avatar
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    Well, you had to try that project, didn't you? Another memory made!

    How is your hospice set up for managing pain, if it comes?

    Are there any things you'd tell others to check out before signing on with a particular hospice company?

    Marj, our thoughts and prayers are with you, too!
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-Dec 2016 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  9. #9
    Moderator Top User jorola's Avatar
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    Thinking of you Bob. Biggest hugs to you and Marj.
    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
    Aug 2017 - and ditto

  10. #10
    Regular User
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    Just a hug from Belgium. Been thinking of you everytime I come here.
    Pat

 

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