Brian was admitted to the hospital on July 18th, where we spent three and a half weeks before he passed away on August 11th. They never found the primary cancer...
Eternal rest grant unto him! Extremely sorry to hear this. Cancer of unknown primary (CUP) is difficult, as the team is never completely certain what they are fighting. My heart goes out to you in your time of sorrow.
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
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
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
01/12/15 Belinostat resumed/Failed 02/23/15
02/24/15 Pralatrexate/Failed 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (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) Myelodysplastic Syndrome (MDS), a type of bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of those drugs at least twice), + 4 immunosuppressant drugs.
I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
- Hebrews 11:1
I just wanted to put this out there... everyone tells you not to trust Dr. Google, that things take time, that cancer is not an emergency, etc... We tried to be patient and listened when they wasted a month searching for the primary cancer. Since they never found it, his treatment would have been the same chemo as it would have been had we NOT wasted a month. Brian never even started chemo! The only thing that could have prolonged his life and he never had a single dose. Once the medical profession was done goofing around with endoscopies and colonoscopies and biopsies and scans and MRIs, the cancer had spread to his lymph nodes and his immune system was shot... really, it spread all through him... and then he got pneumonia that his body couldn't fight even with the strongest antibiotics... and his cause of death was acute respiratory failure.
So, maybe it's not cancer til a biopsy says so, etc. But, in our case... my husband lost his life less than 3 months after an MRI said it was cancer and barely more than 2 months after a biopsy said so.
You've had a terrible loss and are in grief and mourning. We understand and feel the pain in your words, and I'm sure your words only convey a small part of the pain in your heart.
Grief after a loss is normal and universal and has been studied by psychologists for years. There seem to be different stages that people go through, but in no particular order. They are denial, anger, bargaining, depression and finally acceptance. Some people go through all of them, others only some. The lucky ones come to acceptance, which gives some peace. Some people get stuck on one or another and that can affect their lives for a long period. Grief counseling, either one on one or in a group setting can really help to get past the negative feelings and on to acceptance faster.
It sounds like you have some very legitimate anger at his care, especially the care early on. I hope this doesn't sound callous or uncaring, because it's not meant to be that way at all. Your husband had a metastatic bone mass on his spine. Treatment with chemo probably would not have extended his life very much, if at all. At that point it was likely extensive through his system. His one hope for meaningful extension was probably doing exactly what was done to try to find the primary so the most effective treatment could be chosen.
Medical science has progressed at an astronomical pace, but we are still years away from the tricorder of Star Trek, where every disease or condition can be identified in moments, and everything is treatable. We have a system that is so much better than what existed 50 years ago, when nearly every patient on this forum would have succumbed to a quick and painful death. Unfortunately, we don't meet the standard of todays medical shows, where someone is diagnosed in one episode, they lose their hair in the second, grow it back in the third, and are pronounced cured in the third or fourth.
Our system is imperfect and needs improvement. One of the ways that you can get over your anger is to channel its energy into improving the system. As a military wife, volunteer at the closest VA. No matter what you do there, use the suggestion box and every opportunity to improve things.
I wish that you find acceptance of your loss. You will still have sad moments, but the unbearable pain of fresh grief can dissipate.
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
Still open to immuno-oncology trials (vaccines or checkpoint inhibitors) if I find one I'm eligible for.