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Thread: My wife's journey is near its end

  1. #1
    Regular User
    Join Date
    Jul 2018

    My wife's journey is near its end

    My 55 year old wife Kay is on the final leg of her journey which began this past Father's Day weekend with pain on her right side up under the lower rib. Kay had discomfort there previously that would come and go and was mostly noticable when she tried to take a deep breath. She started noticing that about 2 months prior. The pain she experienced that Friday before Father's Day as we made our way to the beach to spend the weekend with our children and grandson was more intense and accompanied by nausea and vomiting. We called our primary physician who made her an appointment for an MRI that following week.

    The MRI showed a 3 cm mass on the tail of the pancreas.

    Things of course moved quickly after that. Kay's gastroenterologist recommended a consultation with a surgeon at MedStar Georgetown University Hospital that she went to school with, Dr Patrick Jackson. He recommended Kay get an Endoscopic Ultrasound with Fine Needle Aspiration (EUS FNA). The EUS FNA resulted in a finding of Adenosquamous Carcinoma of the distal pancreas. Dr. Jackson then ordered a CT scan and worked us into his schedule for a consult. The CT scan again showed a 3.5 cm mass on the tail of the pancreas abutting the splenic vein and the spleen itself was enlarged. No other unusual masses or anomolies where seen. Dr. Jackson recommended a distal pancreatectomy and spleenectomy under open abdominal surgery because of the enlarged spleen. We were scheduled for surgery on the 26 of July.

    In the operating room, Dr. Jackson did an exploratory laproscopy prior to commencing with open surgery. Unfortunately, the laproscopy revealed a lesion on the surface of my wife's liver which was not seen by the MRI or CT scan because it was on the part of the liver that lays up against the abdominal wall. Dr. Jackson removed the lesion and pathology confirmed it to be a metastasis of the primary tumor therefore the open surgery for distal pancreatecomy and splenectomy could not proceed. Dr. Jackson referred us to Dr. Michael Pishvaian, an oncologist at the MedStar Georgetown University Hospital's Lombadi Cancer Center. Dr. Pishvaian started my wife on Chemotherapy using FOLFIRINOX with 5FU at the beginning of August.

    Kay did 7 rounds of Chemo before her blood counts became too low to continue. During that period, she also had radio embolism of the liver with Y90 and Cyberknife radiation on the primary tumor. Dr. Pishvaian's experience with FOLFIRINOX indicated that beyond 8 rounds, the risk for neuropathy significantly increases. A CT scan showed no new metastasis and no new growth of the primary tumor or the liver lesions. Additionally, Kay's CA 19-9 numbers had dropped significantly -- down to 135. He therefore switched Kay to an oral chemo -- xeloda -- just after Thanksgiving.

    Kay was able to enjoy the holiday's with family. Physically, she suffered from fatigue through the week while on xeloda but rebounded during the weekends. During this period she began having night sweats and running fevers (100 - 102*) so we alternated using tylenol and advil round the clock to keep them down. If we were late or missed a dose, the fever came right back. Dr. Pishvaian ran several tests, including blood cultures and urinalysis looking for infection but everything came back normal. So we continued treating the fevers and the xeloda.

    Kay woke me early Sunday morning, January 20th in severe pain on her left side abdomin. Her primary care physician had given her an Rx for Tylenol 3 when she was diagnosed originally back in July just in case she needed it at some point. She decided to tough it out that Sunday with the Tylenol 3. By Monday morning it was clear that the Tylenol 3 wasn't doing anything to relieve her pain. We then went to Georgetown ER even though that meant an hour and a half drive because we wanted to be where her oncologist was -- that was a good call I think.

    Kay spent Monday, 21 January (MLK Holiday) in the ER -- they eventually ran a CT Scan and discovered new lesions "too numerous to count" in the liver, suspect areas in the kidneys that could not be ruled out as metastasis and growth of the primary tumor on the pancreas which now completely encased the splenic vein and was intruding the stomach wall. She was admitted to the hospital on Tuesday morning, 22 January (we spent the night in the ER) for pain management (IV morphine).

    It took the rest of the week to get her pain undercontrol. During the week the pain shifted from primarilly being in the liver area (left side) to the right side (pancreas/spleen). It was decided that coil embolism of the splenic artery would help lessen the pain (MRI show multiple infarcs on the spleen and the spleen greatly enlarged) effectively killing off a portion of the spleen. Initially the coil embolism increased Kay's pain but use of both oral and IV morphine helped to manage it. She also had a nerve block of the celiac plexus nerve.

    During the first week in the hospital, I noticed that one side of Kay's mouth was drooping. CT scan of the head revealed numerous small lesions in the brain and evidence of small strokes. We met with Interventional Radiology who investigated to see if Cyberknife would be of use in treating the lesions. Unfortunately it was determined that the lesions where too small for the Cybernife planning tool to accurately plot them.

    Dr. Pishvaian met with us on Thursday, 31 Jan to discuss treatment options. Gemzar with an additional platinum was considered however, due the significant and rapid metastasis throughout the body and the fact that there was little evidence of Gemzar being particulary effective on Adenosquamous cancer cells, the decision was made to make Kay as comfortable as possible.

    Kay had lost her father to cancer back in September (he had a stroke at the beginning of August and investigation revealed cancer of the liver with metastasis to the lungs). The family decided the best place for him was at a Hospice House. At the time, Kay stated that is were she wanted to go to spend her final days so we made the arrangements and Kay was transfered Monday Feb 4 from Georgetown to the Kline Hospice House in Mt. Airy Maryland (we are north central Maryland residents so this was much closer to home for us that Georgetown).

    I can say enough good things about the staff and Dr's at Georgetown -- absolutely fantastic. The same goes for the staff here at Kline. Kay is at peace with this outcome and accepts that her journey is coming to an end. Dr. Pishvaian's estimate is 2 weeks to no more than a month.

    When we first met Dr. Pishvaian he told us that Adenosquamous Carcinoma of the pancreas is rare and very agressive -- less that 4% of all pancreatic cancers are this type. We asked him what the prognosis was. He said he was optimistic that he could get the growth under control and if so, her chances of successfully managing her cancer as a chronic disease were reasonably good. If not, he estimated she had 6 to 8 months to live. That was back in July. Here we are now barely 7 months later . . .

  2. #2
    From one husband to another my heart goes out to you, and your dear wife. PC is the cruelest of cancers. Cherish these final days and make memories. May god bless you both.

  3. #3
    Regular User
    Join Date
    Jul 2018
    @Kands1984 I’m so sorry your wife has reached this point in her journey and I send my best wishes for your time with her and her time at Hospice House.

    I can only confirm from my husband’s time first at home-hospice and later at their in-patient hospice, that hospice made a tremendous positive difference to his pain management and care. As I reflect, I can say that he had a “good death” - although it’s a phrase I struggle with.

    Take care
    Adoring wife and caregiver of Fred (67)
    May-Mid June 2018 - Fred has persistent mild symptoms - abdominal and back discomfort, a little weight loss (3lb), gassy belly.
    June 18th - CT scan - 2.5 cm tumor in head of pancreas, 4 small lesions in liver (largest 1cm), 4 enlarged abdominal lymph nodes (2-3cm)
    June 25th - CT guided biopsy confirms poorly differentiated adenocarcinona of pancreas and CA19-9 of 1583 on July 5
    July 12th - Abraxane/Gemzar - constipation, fever, chills and tired/weak feeling are main complaints.
    Sept 18th - Restaging CT - Marked tumor progression
    Sept 25th - 2nd line chemo begins- FOLFIRI
    Nov 18 CT shows further progression
    Dec 3-17 After 3 small strokes, clinical trials are ruled out and Onc advises no more can be done.
    Dec 18 Fred began hospice 6 months after diagnosis
    Jan 21, 2019 Farewell for now my sweet love.

  4. #4
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    I will be thinking of you and your wife over the final days. She is so fortunate to have you by her side.

  5. #5
    Thank you for sharing with us your painful but courageous decisions and travels. You and your wife are truly blessed to have each other. I am nearly her age and I think I can relate quite well to how she might be feeling. I admire her strength and calm resolve and I will remember that as I forge ahead in my own battle.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  6. #6
    Experienced User Dand's Avatar
    Join Date
    Jul 2016
    Really feel & relate to your wife & your Pancreatic C trip. Our prayers are with both oof you.
    BRCA2 Positive
    7/26/16-CT Scan with Liver Biopsy diagnosis Stage IV Pancreatic Cancer + metastatic of liver.
    8/2/16-Clinical Trial Cisplatin/Gemcitabine + Veliparib
    8/15/16- CA 19-9=37,750 U/mL/CEA 126.5 ng/mL
    9/05/16- CA 19-9=19,778 U/mL/CEA 74.9 ng/mL
    9/21/16- CT Scan -13.10% down from Bl (SD)
    9/26/16- CA 19-9=24,528 U/mL/CEA 61.3 ng/mL
    10/17/16- CA 19-9=24,792 U/mL/CEA 42.9 ng/mL
    11/2/16-CT Scan -22.30% down from Bl
    11/07/16- CA 19-9=24,895 U/mL/CEA 30.2 ng/mL
    12/09/16- IR VA Power Port
    12/14/16-CT Scan -26.20% down SD)
    4/3/17- CT Scan -41.50% down (SD) (PR)
    5/24/17- CA 19-9=1,934 U/mL/CEA 10 ng/mL
    6/5/17-CT Scan -50% down (PR)
    6/19/17- Stage II Trial Mono Veliparib
    7/17/17- CA 19-9=1,336 U/mL/CEA 9.1 ng/mL
    8/6/17-CT Scan -65% down (PR) no new sites
    11/20/17- CA 19-9=380 U/mL/CEA 7.6 ng/mL
    1/1/18- CA 19-9=304
    7/13/18-To Present CT Scan -80% down (SD PR)
    7/15/19 CA 19-9=105 U/mL/CEA 6.8 ng/mL

  7. #7
    Senior User
    Join Date
    Feb 2017
    Thanks for sharing with all of us. Your wife is fortunate indeed to have a loving spouse who has been with her at every stage of her illness. When she is gone you will begin to lose this last 7 months and begin to remember the wonderful life you shared together. I’m thinking about you.
    2010-PSA 3.59; 2011-PSA 3.58; 2012-PSA 5.28, 4.26; 2013-PSA 5.98, 7.37; 2014-PSA 5.90, 4.70; 2015-PSA 5.18, 7.35
    RALP 16 March 17, Wesley Long, Greensboro, NC
    Pathology: pT3a, pN1 Gleason 4+5=9 adenocarcinoma with + surgical margin at bladder neck; 3 of 16 lymph nodes positive; neg seminal vesicles, vasa deferens
    Referral to Dr. Ken Pienta, Clinical Dir Research, Brady Center, Johns Hopkins
    Enrolled in Clinical Trial IRB002120414 “Phase II Study of definitive therapy for oligometastatic prostate cancer post surgery"
    Completed: Docetaxel 12 Jun 17, 3 Jul 17, 24 Jul 17, 14 Aug 17, 15 Sep 17
    Lupron every 90 days for two years. Completed March 2019
    Bone/Body Scans - 15 Sep 17 - neg; 15 Mar 18 - neg; 14 Sep 18 - neg; 17 Mar 19 - neg
    EBRT: 69 Gy total (46 to fossa, 23 boost to suspect areas) 1st treatment 28 Sep 17, last 22 Nov 17
    PSA: 25 May 17=0.2; 5 Sep 17=0.1; 18 Dec 17=0.1; 6 Mar 18=0.1; 29 May 18=0.1; 5 Sep 18=0.1; 17 Dec 18=0.1; 12 Mar 19=0.1; 15 Jul=0.1

  8. #8
    Regular User
    Join Date
    Jul 2018
    My beautiful wife Kay passed away peacefully with family by her side on 22 February 2019 -- seven and a half months after her Stage 4 Adenosquamous Carcinoma of the distal pancreas diagnosis.

  9. #9
    Regular User
    Join Date
    Jun 2018
    Kands1984 - I am so very sorry to hear of Kay's passing. I can't begin to imagine the sense of loss you and her love ones are going through. I do know that she had you by her side every step of the way and I'm sure she knew she didn't have to face one moment of the journey alone. I wish you peace of mind and memories of happier times.

  10. #10
    Kands1984 I'm sorry to learn of your wife's passing. I hope you were somehow able to find some comfort here with those of us in this community who are fighting hard to understand pancreatic cancer in order to extend lives. Thank you for sharing your experience with us.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.


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