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Thread: Update

  1. #1


    I had my scan Friday and it was stable. I was very nervous because I had an increase in these visual episodes I get. My NO and neurologist havenít really known what to make of them, my NO being more cautious about ruling out seizures. She is starting to lean toward them not being seizure related, still not sure though. She thinks maybe migraine related and since I had a baby in the last year, that can change migraine symptoms. I also have some family history of migraines. I need to follow up with my neurologist and see about getting back on gabapentin since I seemed to not get these episodes while on that medication. So hopefully that helps. We are still going to keep on 6 month intervals.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Good to hear the update. And, you sound as though you are both handling this, and doing exceptionally well, considering all that you have been through. It can be frustrating when no clear answer is given to no clear cause of symptoms. But, if Gabapentin was good before, it seems well worth trying again. I hope that you find some relief, as the noise of symptoms can be very disquieting. You have enough on your plate with that adding to it!
    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.

  3. #3
    You hit the nail on the head. This last time, I went down a rabbit hole of anxiety leading up to my appointment. I feel so crazy when that happens, like I start worrying about other things being symptoms. When we got to the hospital and parked, I was so anxious it’s like my legs wouldn’t work! My NO told me we can always move up my scans which is good to know, but since we have to travel so far that can be difficult logistically. It’s nice to have peace of mind about my scan though and now I’ll loop back to my neurologist.
    Had surgery 10/21/14 to remove Grade II Astrocytoma in right temporal lobe. 95% or more resection. Undergoing Clinical trial through UCSF taking Temodar and Everolimus for two years total.

    1500mg Keppra, 600 mg Gabapentin daily

  4. #4
    Iím so glad to hear youíre doing well overall. Congrats on the stable scan!

  5. #5
    Moderator Top User
    Join Date
    Mar 2012
    Visual migraines are very common and in themselves harmless. I get them sometimes and I haven't had a brain tumour - episodes of (painless) shimmering across the eyes, and literally seeing stars.
    Wife died from a GBM, November 2012. The full story in this thread

  6. #6
    The first time I had one was the reason for my MRI. I had migraines without the visual part for like 10 years years before that. My NO has been cautious to rule them out as seizures because of where my tumor is located. After my surgery, they would happen like every few months, then I went about 2 years without. Then a few months ago, I had 3 happen within 6 weeks. The weird part is, they switched fields of vision and are a little different in what happens. It’s weird. So my NO is thinking these ones aren’t tumor related, since they are on the wrong side of my vision. I just had another one this weekend. I don’t necessarily get my standard migraine with them either.

    I also learned I have a small white spot on the left side of my brain, more toward the front of my brain. My NO said it’s what they call an “unidentified bright object” (has anyone else heard of this?) and they don’t reallt know what they are, but can be associated with migraines. That’s also weird, because my migraines are on my right side and she said it’s not even close to an area that would cause my visual problems. Who knows!


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