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Thread: I Canít Get A Break!

  1. #1

    I Canít Get A Break!

    This isnít exactly related to lymphoma, but with my history it is slightly relevant.

    I went in for a full body skin exam. I have a lot of moles and it has been a few years since Iíve had a full body exam. Compared to a picture from 4 years ago I have a couple moles that seem to have grown. None are bigger than the ďpencil eraserĒ size. My doctor pointed out 4-5 moles that she said were concerning/worrisome. She referred me to a dermatologist and sent them some pictures. Now Iím just waiting to hear back.

    I just feel like the rest of my life I will have to be constantly vigilant about my body and sometimes I just want to relax and not think about cancer. I just had a CT scan 2-3 weeks ago that came back normal. Iím trying to look at the positives. IF it is melanoma, it must be early because nothing looked abnormal on the scan. Right?

    Just when I started to calm down and get back to feeling normal, this happens! So frustrating! Oh well, at least I have a lot to talk about at counseling this week.
    Diagnosis (October 2014 - November 2014) - NSHL Stage IIIA
    Treatment (December 2014 - May 2015) - ABVD x 6 cycles, cycle 5 - AVD (No Bleomycin)
    Interim PET (January 2015) - Complete Response
    Post PET (June 2015) - Remission!

  2. #2
    Senior User
    Join Date
    Mar 2017
    One way to look at the positive side of that coin might be to consider that everybody is watching over you, doing their best to make sure you suffer no other ill - now, isn't that a comforting thought for an anxious mind?

    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. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I had a mole on my chest. It was probably eraser sized, had been growing and itching. It was asymmetrical, black and brown. The dermatologist took one look at it and asked "How long have you had this?" Well, at least six months. Off it came. Pathology was a "dysplastic nevus" or oddly-shaped mole. No malignancy, regardless of appearance.

    You are dealing with your anxiety, correct? I hope so, because only wisdom improves with age.

    Also, moving this to worried.
    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
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    Having a BRCA2 mutation also demands a lot of vigilance. I’m finding that after getting the appointments set up and recurring on an annual basis has freed me from constantly thinking about cancer. It becomes more of a routine that my mind is able to accept with all the other routines.

    I’m taking a course now that says if we focus on the process (the appointments) and not the product (cancer), we can reduce the anxiety surrounding the task at hand.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    From my mid-20s, due to family history, I resigned myself to the fact that I would probably hear a cancer diagnosis in my lifetime. But! I did not allow that to pervade my thoughts or actions. It was pure back burner stuff. I had a life to live - and I did. When cancer appeared, I was long since mentally prepared for it and thus, it did not freak me out. I looked at it as a challenge, and one worth rising to meet.

    Crush your anxiety and you will have a much easier day-to-day life. Vigilance has its part to play, but even the vigilant have to take a break now and then.

  6. #6
    As you know, I’ve been seeing a counselor and it helps, but I’m starting to think it’s not enough. As much as I don’t like the idea, I’m thinking medication might be the answer.
    Diagnosis (October 2014 - November 2014) - NSHL Stage IIIA
    Treatment (December 2014 - May 2015) - ABVD x 6 cycles, cycle 5 - AVD (No Bleomycin)
    Interim PET (January 2015) - Complete Response
    Post PET (June 2015) - Remission!


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