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Thread: Godfather in a fast decline

  1. #1
    Newbie New User
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    Jul 2019

    Godfather in a fast decline

    My 65-year-old godfather was diagnosed May 25th with Stage IV small cell lung cancer. I do not know if he's told me everything they've told him as I he and his wife are going to the doctor's appointments of course. I'm no doctor, but do medical billing and coding; I know how fast these things can go. I believe that he has smoked for 30-40 years, possibly more.

    A couple of months ago out of the blue, he asked me if I noticed anything different. I really didn't, so I had to ask. He had quit smoking and he assumed that I couldn't smell the smoke on him anymore. I was elated. Unsure what brought on the sudden change of life, but now I know. As he stopped to visit just after the diagnosis, he told me the reason that he quit smoking was that he had begun to cough up blood. He has always had a slight cough, but I thought most smokers did? The cough progressed to more often and seemingly more harsh. Prior to the diagnosis, I noticed and complimented him for losing some weight. He told me that he wasn't trying, but he had been a lot more active as of late (he's a developer and undertaking a multi-million dollar renovation in our city).

    The plan the doctors gave him is chemotherapy, and he took the first one like a champ; it didn't even make him nauseous. Constipated, yes, but other than that, he was still going to the office with no real difference in the way he felt. The second treatment was a little different in that he has grown more fatigued to the point of really dwelling on how tired it's making him. At this point, I am unsure if it's the chemo or the cancer itself progressing (I've never been through this before).

    Anyway, the weekend after the second treatment, he developed a horrendous cough. His wife called the doctor, and they had him come to the ER. The coughing had been so violent, it got his heartbeat out of sync, so they had to "shock" him to get his heart back into rhythm. I've never heard of anything like this. Simultaneously, one of the lungs collapsed. They discharged him the following morning, I believe with some heavy duty cough meds.

    Please remember, this is what I know through him. He is very careful what to say and not say, because I'm scared he will lose it or he thinks I will. He doesn't want to upset me.

    As he walked out after telling me this, he reached down to pet and talk to my dog who he is crazy about. He said, "You know, Jen, I've had a hell of a life." There were tears rolling down his cheeks and he tried to turn away so that I wouldn't see.

    If we are to the point of the cough having progressed, spitting up blood, extreme fatigue, what are we looking at? Again, he will not share what the doctors have told him. I'm going crazy trying to find answers online. Everything I see says 3-6 months, but I'm seeing several that it seems like at this point, their loved ones lasted 8-10 weeks.

    I am a Christian, and I know that this will be a temporary separation from the closest thing I have to a father. I do not know how I'm going to handle when the inevitable happens. I'm not even handling this decline without just my heart feeling like it's broken in half.

    Has anyone been in a similar situation with the above symptoms at about the 6 week point? Anything will be a comfort that I'm not alone here.


  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Jennifer, very sorry to hear this. I moved your post to coping and Support, as that is what you need right now. First thing is that we form our own, individual survival curves. By the stats, I should not have made it halfway through 2009. Two relapses and two additional cancers later, I am still here. I share your worldview. The priest who married us 39 years ago said "After that first Easter, no Christian should ever fear death." And that is very true. However, this is a loved one and spiritual sponsor, so he is very special.

    It is not over yet. Doctor cannot know that, even your Godfather cannot know that. I am certain that he has tons of spsiritual support and that, in addition to the latest in treatments, will breing about the best - even if do not agree with it right now.
    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.


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