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Thread: Do you think I am right to be concerned?

  1. #11
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    Quote Originally Posted by po18guy View Post
    I am not a betting man, but I'll bet that you have health anxiety or generalized anxiety disorder. Both are 100% treatable and can help to restore your peace of mind.
    My father is exactly the same. About 3 years ago, he was diagnosed with prostate cancer and had to go for radiation. After it was over, he was given a clean bill of health. About a year later, his PSA shot up again. Right away, he was convinced the cancer was back and had already spread. That wasn't the case. They found a little bit on one of his nodules in the pelvic area and they gave him hormonal therapy. Now, whenever he feels any pain, he right away assumes the cancer is back.

  2. #12
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    Quote Originally Posted by Russo1982 View Post
    My father is exactly the same. About 3 years ago, he was diagnosed with prostate cancer and had to go for radiation. After it was over, he was given a clean bill of health. About a year later, his PSA shot up again. Right away, he was convinced the cancer was back and had already spread. That wasn't the case. They found a little bit on one of his nodules in the pelvic area and they gave him hormonal therapy. Now, whenever he feels any pain, he right away assumes the cancer is back.
    … The difference being that, with a 37-year-old son, your father is likely in his sixties. And, he has actually been diagnosed with cancer…

    May I suggest you re-read your whole thread - what you've said and what comments it brought on - with a detached, objective mind (pretend it's a total stranger's thread)? Then try to answer the question:"what is it, in the facts stated in the initial post in this thread, that causes this person to be so worried?"

    Kind regards.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  3. #13
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Russo1982 View Post
    If I do truly have a problem with unexplained weight loss, she said it could be a million things. It could be hyperthyroidism. It could still be diabetes. It could be a gastroenterogical problem and she may have to refer me to a gastroenterologist. It could be anemia. It could be celiac disease. Don't automatically assume the C word. Like I said, I pretty much feel normal. I have anxiety issues anyway and I am an alarmist. Do you think I am right to worry about this?
    If that is the case, it could be any one or more of the 68,069 known human illnesses and conditions. Brace yourself for a lifetime of painful, invasive, disfiguring and potentially cancer causing diagnostics.

    Unexplained weight loss? Reduced caloric intake. Increased exercise.

    That's how the rest of the world does it.

    Cognitive Behavioral Therapy. Not as exciting as searching for cancer.

    It's just peaceful.
    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. #14
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    Quote Originally Posted by PBL View Post
    … The difference being that, with a 37-year-old son, your father is likely in his sixties. And, he has actually been diagnosed with cancer…

    May I suggest you re-read your whole thread - what you've said and what comments it brought on - with a detached, objective mind (pretend it's a total stranger's thread)? Then try to answer the question:"what is it, in the facts stated in the initial post in this thread, that causes this person to be so worried?"

    Kind regards.

    PBL
    PBL, I just have one question for you. In your case, how quickly did you lose all the weight you did?

  5. #15
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Russo1982 View Post
    PBL, I just have one question for you. In your case, how quickly did you lose all the weight you did?
    That is immaterial to your quest for cancer. PBL is a different person with different metabolism. Posting here is only feeding your anxiety. Listen to your doctors. Closing this thread as there is currently no evidence of active cancer. Should you ever receive a diagnosis of cancer, we are here for support.

 

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