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Thread: Bob, how are you feeling?

  1. #1
    Experienced User
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    Bob, how are you feeling?

    I didn't realize you started Hospice. I just read that information in your signature. I knew that you were having a difficult time and things weren't moving in the manner in which you had hoped. Hospice is such a great organization. I really think my Dad's quality and time was extended due to Hospice.

    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.

  2. #2
    Regular User
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    Quote Originally Posted by Sprouts View Post
    I didn't realize you started Hospice. I just read that information in your signature. I knew that you were having a difficult time and things weren't moving in the manner in which you had hoped. Hospice is such a great organization. I really think my Dad's quality and time was extended due to Hospice.

    Thinking of you
    I was wondering too. Hope things aren't too hard.
    Hugs

  3. #3
    Senior User
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    I don't drop in here as much as I used to but I too am thinking about you, Bob, and hope you aren't feeling awful and that another treatment door opens up for you.

    Hugs,
    --L
    12/17/2012 Father diagnosed with 5 x 3.8 cm malignant tumor on head of pancreas
    12/19/2012 Father's birthday.
    12/21/2012 Father hospitalized with severe abdominal pain and jaundice, pending stent
    12/24/2012 Plastic bile duct stent successfully installed, biopsy taken
    12/31/2012 Tumor confirmed as pancreatic adenocarcinoma
    1/17/2013 Chemo (Gemcitabin/5-FU/Leucovorin) and IMRT radiation has finally begun.
    February - another hospitalization for weakness and dehydration
    March - bad PET scan showing mets all over liver abdominal cavity
    3/15/2013 - first round of GemCis chemo, last ditch attempt to reverse the decline
    3/17/2013 - hospitalized with sepsis and anemia from internal bleeding.
    4/3/2013 - came home under hospice care
    4/15/2013 - made his final tax protest and left us peacefully at 9 PM, in front of a television history of the NY Mets

  4. #4
    Moderator Top User BobInBonita's Avatar
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    Bonita Springs, FL USA
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    Thank you for asking.

    How am I doing? I'm embarrassed, for one. Everyone here shares so much about themselves or their loved ones, and I have been sharing so little.

    I am actually doing quite well considering the circumstances. A Dr can give a referral for hospice care when they believe a patient will probably pass within six months. I asked for the referral because we simply didn't see a treatment path that would give me enough of an increase in time without to great of a quality of life penalty. When I asked, the Dr. said something like "Bob, I really don't have a good idea of what will happen. When I look at your scans, I see someone with advanced disease who should be very sick. When I look at you, I see someone who looks healthy. The only difference is I see swelling in your abdomen that wasn't nearly as prominent 3 months ago. If I couldn't match 'markers' in your scan to you, I would think the scan was of someone else. I have never seen someone with disease this advanced look this good. I can't predict when things will change, but when they do, they will probably occur quickly."

    I feel about like I did 3 or even 6 months ago with just a few exceptions. I am more and more fatigued and my naps are longer and longer - that means my waking periods are shorter and shorter. My memory is also getting very unreliable - I'm having trouble finding words for concepts I know and I rarely remember what I'm doing. Thankfully I have relatively little pain, and that is managed effectively with Tramadol. The hospice nurses have recommended oxygen at night and when napping - I seem to wake a little more refreshed than before.

    I've been hoping to start a thread about my hospice experience, but keep forgetting to do it. Here's a thumbnail version - I may cut and paste it to a different thread when I get around to writing more.

    We made the decision earlier than most people probably do. Since I wasn't in treatment, we felt there was a fair trade-off. The "system" wasn't being charged for expensive treatments that wouldn't really do any good, and we felt I would receive better palliative care. We also felt that we would be much better prepared if there was a sudden change in my condition.

    Within 24 hours of the referral being sent in, we had an intake nurse visit at our home. All of the paperwork was taken care of and she did a preliminary assessment of my needs. The next day another RN called and stopped by the house to answer more questions and take a more detailed medical history (she was not part of my assigned team, but they wanted to make sure they had all of my information correct). A couple of days later we were again visited, this time by the RN on my assigned team and a social worker. She gave us the name of the Dr assigned to my team, but said the Dr only visited homes on a "time available" and medical priority basis. The recommendation for oxygen was made, along with adding Tramadol for pain on an as needed basis. The oxygen unit and several tanks of emergency oxygen were delivered the next day. The following day we received the prescription for Tramadol and morphine as well as the "emergency" box. The box has a tamper-proof seal on the outside and some very powerful narcotics inside. In case of a sudden pain crisis at night, we could get telephone instructions to break the seal.

    Since those initial visits, I've had several visits by my team nurse. She has added a stool softener that I didn't think I needed, but that has resulted in more output than I would have thought possible. She also seemed somehow gratified that I had tried the Tramadol, which I didn't think I needed either, and realized that I had just gotten used to a low level of background pain.

    I've also had two sessions with a massage therapist. I don't think she is doing anything curative, but my back sure feels good for a day or two after. The social worker has been back and we talked about making cremation arrangements. She's coming back to talk to us about ideas for preparing for loss (most of their focus is usually on bereavement counseling after). She'll have a one on one session with Marj to see if there are things to do to ward off the "anticipatory" grief we are feeling now.

    All in all, we're very happy with how things are unfolding with hospice.

    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.

  5. #5
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    Bob
    I only hope that I can demonstrate half the grace that you are when my turn comes.
    eds
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda

  6. #6
    Senior User IndyLou's Avatar
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    Hello, Bob--the first word that popped in my mind when I read your update was "courageous." Thank you for sharing. I've always enjoyed seeing your past postings to various members on this forum, and your moniker always made me smile. I wish you an unexpectedly long and pain-free stay in hospice, surrounded by those who love you.
    Age 50 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - No cancer
    Spring 2016 - No cancer

  7. #7
    Experienced User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Well Bob, it sounds like you found a good facility to land in. In addition, your state of health sounds suspiciously like mine, with you looking WAYYY healthier than you should. Over my years working in a cancer-only hospice, I recall two patients who lasted a full year, and one guy who was there for TWO years. If things don't go to hell in a handbasket, you may have to consider sharing your wide experience and knowledge with others who are looking at following in your path. Keep that in mind in case you get bored with an OVER-timely demise....
    05/6/16 2 pre-op physicals show low WBC & RBC
    05/16/16 Have BM biopsy - GULP!!
    05/22/16 [Birthday] Results are AML 22% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML.
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks. Change regarded as minor.
    Oncologist says my run is unprecedented.

  8. #8
    Senior User
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    Oh, my goodness, Bob! I had been wondering about you, too, and just happened upon this post (I haven't been on here as much as I used to be). Your courage and grace in the face of all this is just astounding and inspiring. And I can so very much imagine what your spouse is going through as well (being a spouse of a PC patient, myself). But, even though my Larry's approach was different, I see similarities. That idea of just living your life to the fullest as long as you have is what I am taking away from this. That's all any of us really have, anyway, as any one of us could be hit by a truck tomorrow. Bless you and I am so glad to have gotten to "know" you through this forum (and hope to continue to see your posts for years to come). You are the sort of person that gives us all hope and joy as we face whatever nasty things life sends us. Amazing that you've had five years from diagnosis and amazing that you've been so positive and hopeful through it all. I'm still hoping for a good outcome for you, regardless of where you are right now.

  9. #9
    Top User
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    You are such a courageous person, Bob. I really admire you.
    Husband has PTCL-NOS......5 rounds of CHOPE chemo. April 27....6 month check up shows NED at this point. No,scans suggested at this time. We are very happy and pray for continued blessings.

    We also have a son, our only child,who was found to have an ependymoma tumor when he was 17. He is now 40 years old and married. He's had 6 brain surgeries, to remove the benign tumor and to try to get the seizure activity which was impossible. He was enrolled in a clinical study to have an experimental neurotransmitter placed. He recently had to have the battery replaced after 6 years. He has not had a seizure in 11 years so far and we are so grateful to God.
    When I am afraid I put my trust in you. Psalms 53:6

    "Hope” is the thing with feathers –
    That perches in the soul
    And sings the tune without the words –
    And never stops – at all –
    Emily Dickinson

  10. #10
    Experienced User
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    Apr 2016
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    Thank you for responding. Sounds like you are doing ok, considering the circumstance. Having a good Hospice team in place makes the world of difference. Please be sure to lean on the board or send me a private message if you'd like. I know my Dad worried much about how we were all going to do with it all....I'd be more than honored to share anything that you might find helpful. The 1 year anniversary was 2 days ago and I've had time to process and reflect. 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.

 

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