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Thread: 81 yr old Mom has IV PC and is not a candidate for ANY treatment -- anyone else?

  1. #1
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    81 yr old Mom has IV PC and is not a candidate for ANY treatment -- anyone else?

    My 81 yr old mom has had some bowel issues for years on and off, but here recently (Christmas to first off the year) it was becoming more frequent and violent. She was diagnosed in March with stage IV PC w/ small mets to the liver and stomach. At that time her tumor on the tail of her pancreas was 2.5 x 3.5 cm. Liver spot was measured in mm's but I can't remember exactly the size. All specialist that we went to for different tests/procedure, kept heading down the path that she would take chemo. I didn't think she was able to take chemo, but mom seem to be ok with going along. From the first of the year until March, she had already lost several pounds and once she got the diagnosis, her appetite was about "nil" with depression and fatigue -- not active at all and mostly cried all day. We went for the EUS and then the lap. "look around" surgery and went ahead and got the port put in. This was April 18th (as out patient). The night of April 19th, she said she couldn't really focus on anything that her vision was blurry and her head was hurting all the way across the frontal area. Once at the ER, they started with CT scan of head, then chest, and then stomach. First head came back and said there was "something" there behind right ear - CT scan doesn't differentiate a stroke from a tumor, but that wasn't the urgent finding. Huge PE came back on the chest CT. After much discussion between the Dr and other dr's decided the benefits would outweigh the risk to start on Heparin for the PE -- not knowing what exactly was going on with the spot in the head until the MRI could be done the next day. Turns out it was a stroke - and she no longer could walk. Dr (and oncologist that we were suppose to meet with the next week) said with the blood clot(s) and the debilitating stroke, she was no longer a candidate for chemo. Has been in a skilled nursing facility since April 24th. Was able to get some mobility, but only "transfers" and doesn't walk unassisted. After the Medicare PT ended, she only gets up with help from the bed to wheel chair to the commode and vice versa. Since entering the skilled nursing facility she has lost 16 lbs. Eating very little. We are not sure what all to expect going forward, but trying to live it day by day at the fullest. Anybody else out there know of (or is ) a IV PC person with no treatments whatsoever? Had PE's and/or stroke after being diagnosed with PC?

  2. #2
    Super Moderator Top User ddessert's Avatar
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    I'm sorry for you and your family. Your mom has been through a lot already.

    I remember a few in the past that did not do any treatments for one reason or another. But none that are here currently. Although we do have many "lurkers" that do not post that may be in a similar situation.
    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 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #3
    Newbie Top User BobInBonita's Avatar
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    I'm so sorry to hear about your mother's diagnosis. We have stage 4 members who have been here quite a while, but only with treatment.

    Here's a link from the Brittish equivalent to PanCAN in the States: Cancer Associated Thromboses One of the important things is that cancer associated clots should be treated differently than the DVT clots we typically hear about.

    Have you had the difficult talk with your mother about what she wants as the end comes closer? I don't want to say any decision is better than any other, but both of those decisions are better than not being able to make one because it simply hasn't been discussed.

    Best wishes to both of you. Please let us know if you find out more about her clotting and treatments, as well as how she is feeling as she goes through this.

    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.

  4. #4
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    That is terrible that she has had to not only deal with PC but a stroke, as well. My dad was given the option of treatment and they didn't push it...knowing how far he was along in the PC process. I think he did the chemo to see what it felt like and hoping it would subside some of his symptoms. I know it sounds depressing to think she isn't a candidate for cancer treatment but my dad only went through two rounds because he thought it would have killed him quicker....and I agree. For that one month of chemo his quality of life was worse.

    It stinks that she had the port put in and can't be used for chemo but they may be able to use it for other things....so they don't have to keep pricking her for medication or hydration. There are medications to help her feel better too....pain meds, bowel movement help, anxiety/depression meds, GERD medication, etc. She may be getting these things but I thought I"d mention them. Comfort and quality is key....even if she get feel slightly better than her worse.

    Thinking of you.
    Jan 15, 2016 Father went to the ER with extreme abdominal pain...
    Jan 16, 2016 unofficially diagnosed with pancreatic cancer stage IV in the tail, too many mets in his liver to count, spleen and lung.
    Folfirinox-2 doses in February 2016
    March 2016-discont. chemo
    Apr 2016 severe onset of diabetes
    June 15, 2016 Celebrated he/my mom's 47th Wedding Anniversary eating pier fries/fried dough (I think this was his goal...to live to make it 47 years)
    June 15th, 2016 at 11:00 PM experienced sharp abdominal pain not managed with pain meds at home
    June 16th, 2016 at 3am went into the hospice home for pain management (walked into the facility).
    June 16th, 2016 by 11am...we learned this would be where he would spend his last days (shocked because at 9am he took a few sips of coffee)
    June 17th, 2016 at 8:20 pm...sun was setting, windows were open, birds chirping, my mom/me/my brother were all by his side with our hands on his body as he took his last breath at 68 years old.

  5. #5
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    Update: My mom's health continued to decline (getting weaker and weaker to where she couldn't transfer any longer) and then developed an arterial blood clot in her right leg on July 24th. The nursing facility where had been since April could not "catch" the pain. I understand that it is a very excruciating pain when your leg is dying like that. I was beginning to get concerned about gangrene b/c there was no life in the lower part of her leg/foot and it was getting darker. I got mom moved to the local Hospice House on Wed, July 26th and she took her last breath here on earth on Saturday morning, July 29th. Her untimely death fell right in the middle of the average life span after being diagnosed with stage IV PC. I truly feel she had a much better quality of life (before the last 2 weeks of her life) without taking any chemo than she would have if she had even taken one treatment. Honestly, I think one round may have taken her out. She lived approx. 4 months after diagnosis. People on here and other forums are asking frequently "what to expect" when the end comes. The one thing my mom did NOT do (besides on the 'dead' foot), is the mottling that I've read about. There was none. She did have the "death rattle" on Friday morning (24 hrs before she passed). She did not have a burst of energy. She drank a good bit of orange juice and water on the Wed before she passed. So it wasn't days and days without liquids. She still "knew" (even with the morphine) what you were saying on the Thurs before she passed as she would respond with the squeezing of your hand or moving those eyebrows or a slight nod of the head. We were not present when she passed. The nurse said it was "respiratory". That she took her last breath before her heart ever stopped beating. And that it was quick and peaceful. Oh yeah -- there was some labored breathing (apnea) two weeks before she passed. That was the first time we noticed it while she was sleeping. It didn't continue to get worse, but would come and go. Her breathing the very last day was labored and had short breaths but no struggling for breath and no oxygen. Blood pressure was good/normal but heart rate was elevated a little. Even with the morphine drip (that Hospice ordered that Friday), she still had some pain when they would change her/move her. I never dreamed about a blood clot forming to cause such pain. When we got to the Hospice House on that Saturday morning (after receiving "the" call), my mom looked so peaceful. After seeing her in such pain earlier part of the week, I was relieve her journey here was over. I will miss that woman -- her humor, her sass, her knowledge and especially her friendship and love she pour out to me and my family. Thought I would share what has went on since June 20th's post.

  6. #6
    Super Moderator Top User ddessert's Avatar
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    Thank you for your final update. It's a scary, tough, and brave decision to not take treatment and it's wonderful that you supported your mother's decisions. It sounds like the hospice did right by her, too.

    I'm sorry for your loss.
    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 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  7. #7
    Newbie Top User BobInBonita's Avatar
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    Mar 2014
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    1,790
    Nan,

    I'm so sorry to hear about your mother's passing. This is truly one of those times when we can say "she is in pain no more".

    Thank you so much for writing in with the details. I can't imagine the emotions you felt and the strength you showed in doing that so soon.

    Each and every one of us will pass in our own way, but by hearing about others, hopefully we can learn better or easier ways to go. When I hear the pain she must have been in, it makes me want to shout at every Dr, every nurse, every administrator - "Even when you can't save me, don't let me die in pain.". Where were the pain management specialists? Where were the PCA's (pain pumps) - either IV or epidural? In a country supposedly overflowing in opiods, where were the medication patches when a patient really needed them?

    I'm so sorry for your loss, but I am even sorrier for the way the system seems to have failed her in her final days.

    My best wishes that you have much happier memories of her and that your grief passes quickly.

    Bob

    PS - Another story of why we have to always learn what could be ahead and be prepared for the worst.
    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.

 

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