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Thread: How Do I know when the end is near??

  1. #1
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    How Do I know when the end is near??

    I have posted a couple of times. It’s been since March of 2018 that my husband was diagnosed and the tumor “tonally” removed. Did the 30 times of radiation and chemo. Now we are on our second 6 months of chemo 5 days on and 23 days off.
    In August my husband had lots of fluid on the brain and had two holes bored to drain the fluid. He was in intensive care for 12 nights and then for 4 weeks in an Impatient Rehabilitation Hospital. His left side is almost paralyzed. Apparently he had a big seizure during or after the procedure. Dr. suggested nursing home, but I have my husband at home in the family room in a hospital bed, and did all kinds of stuff to the house and bath to make it liveable for him. He is on a walker and a gait belt. I have hired 12 hours a day home health care. At night he wears a condom catheter. It’s a daily struggle. Lots of pain and confusion.
    Sometimes I don’t know how we can go on. We both just turned 80. Our two children live 3 hrs and 2 hrs away. They come as much as possible; especially for doctor visits.

    I cannot find any info on how this glioblastoma disease is going to end. No doctor will tell me what to look for as far as progression and symptoms; except for regrow. And he has not had that YET. Everybody throws the 15 months statistic around.
    Can anybody here tell me what the typical symptoms are toward the end? What do I have to look for?

  2. #2
    First of all, I wish you strength and peace through this trial and this phase. When my husband was near the end, he was very restless, wanting to go from bed to recliner and vice versa (we were using a hoyer lift by then). He was also sleeping much more the last week before he passed away. The night before he passed away, he slept the whole night. I think long stretches of sleep is a sign. I remember thinking it was odd that he slept the whole night and in the morning he passed away.
    prior to that week, he was restless and he mentioned seeing people who had already passed.
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  3. #3
    Super Moderator Top User po18guy's Avatar
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    I lost an aunt to multi-organ failure from alcoholism, but organ failure is organ failure. At the end, the human body goes into an irreversible "shut down" phase - the dying process. She spent hours asleep in the hospital, perhaps all day. But one day, she was awake and lucid, happy even. We all spoke with her and left, thinking that she would recover. I cannot remember exactly, but she passed away the next day or the day after. A family friend also had the same experience with his dad, who succumbed to natural causes. There is a rally before they go - after a certain period of unconsciousness or inactivity. That rally might be their "goodbye", as it was in the two anecdotes that I have mentioned.

    You are certainly filled with love, as you are carrrying the weight of the world on your shoulders about now. But, if anyone is loved, your husband certainly is. Just know that you are a truly loving, caring wife.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    598
    Very sorry to learn of your husband's illness. My Mom had metastatic melanoma, which had infiltrated all of her major organs, including the brain. She lived in an assisted living complex, and was pretty active right up until the end - playing cards with friends, etc. The last week or so she was having difficulty breathing, and she did sleep a fair bit. I visited her one day (I live a couple hundred miles from where Mom was, and was working on a project a couple hundred miles away from both of us) and she was relatively lucid and alert, we had a nice conversation. She was not in any pain, although that was largely due to medication I'm sure. She passed away the next morning.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  5. #5
    My dad didn't really have any signs. He had GBM. I left him on a Thursday night when he was ready for bed, and he was maybe a little tired that evening, but he was driving around running errands that day, talking fine, etc. I went over the next morning and found him still in bed not breathing right and not responsive. By the time the paramedics showed up, and they tried to move him he had quit breathing. They weren't able to bring him back. I still don't know what happened and that still bothers me. I planned on staying the night with him that evening, but he talked me into going home to be with my husband and kids. Take care of yourself. My heart breaks for the families and people suffering with this monster of a disease.

  6. #6
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    Builtfordtough,
    May I ask you how long your Dad lived after diagnosis?
    That is amazing that he could still drive and run errands. At least he had some quality of life before passing (I hope).

  7. #7
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    Quote Originally Posted by liesel View Post
    I have posted a couple of times. It’s been since March of 2018 that my husband was diagnosed and the tumor “tonally” removed. Did the 30 times of radiation and chemo. Now we are on our second 6 months of chemo 5 days on and 23 days off.
    In August my husband had lots of fluid on the brain and had two holes bored to drain the fluid. He was in intensive care for 12 nights and then for 4 weeks in an Impatient Rehabilitation Hospital. His left side is almost paralyzed. Apparently he had a big seizure during or after the procedure. Dr. suggested nursing home, but I have my husband at home in the family room in a hospital bed, and did all kinds of stuff to the house and bath to make it liveable for him. He is on a walker and a gait belt. I have hired 12 hours a day home health care. At night he wears a condom catheter. It’s a daily struggle. Lots of pain and confusion.
    Sometimes I don’t know how we can go on. We both just turned 80. Our two children live 3 hrs and 2 hrs away. They come as much as possible; especially for doctor visits.

    I cannot find any info on how this glioblastoma disease is going to end. No doctor will tell me what to look for as far as progression and symptoms; except for regrow. And he has not had that YET. Everybody throws the 15 months statistic around.
    Can anybody here tell me what the typical symptoms are toward the end? What do I have to look for?
    Hi I am so sorry I know how you feel I took care of my father from beginning to end and the end is when he couldn’t walk but kept trying and falling he was a big strong man but I somehow with his help could pick him up but the last time I couldn’t I ended up calling 911 and they took and kept him and the next day the doc said he has 30days I of course didn’t want tolieve him but in fact that was near exact timing he slept a lot but he was in a nursing home for a few weeks and as soon as he came home via ambulance he fell asleep and 4 days later he stopped breathing and during those 4 days there is a rattle in the way he would breathe if there’s anything else don’t hesitate god bless you

  8. #8
    My dad was diagnosed August 19, 2016 and passed away on May 26, 2017. He was 65 years old.

  9. #9
    Senior User
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    I lost my wife to an Astrocytoma and my brother to a GBM, my father due to colon, and my mother to ovarian. My wife was 46, my brother and my dad were both gone at 61. My mom made it to 83. All four of them died of cancer. I have metastatic prostate cancer, diagnosed at 73.

    I mentioned these deaths because I’ve been through this with 4 immediate family members.

    You are in the most difficult situation that I can think of, and when this is over, you will appreciate your own eternal peace of having truly loved your spouse through the most difficult part of life.

    What I observed was the way each of them seemed to just gently enter the final phase of life. All of them seemed to go from a restless phase to a slow, slower, slowest condition. My mom stayed lucid until about a day before she died. She was so lucid that she was telling me to stop crying, that she was in no discomfort, and that she was ready. My wife and brother had both slipped into comas. My dad had a long and horrible death. My mom kept him at home until about three days before he died. This was back in ’77 -- here was no Hospice at the time, and she was afraid he was in significant pain.

    I believe you will find some peace for yourself when this is over. When my dad passed our world became much easier. It took about 18 months to die. His death made me think that there is a place in life for euthanasia.

    Blessings and peace to 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; 29 Oct 19=0.1

 

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