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Thread: New Member and long term survivor

  1. #11
    "It bothers me to no end wondering why all these extremely unlikely things happen to me."

    It was a joke, which by your own admission, SEEMS to have an element of truth to it.

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Quote Originally Posted by PmbPhy View Post
    I did what the spinal cord surgeons suggested. I first had a laminectomy. The surgeon found it encrusted in calcium deposits. That's why the epidurals failed to work. That failed so I had a discectomy. That failed too. Then countless epidural injections all of which failed. I was diagnosed with degenerative disk disease. I tried Neurontin, Tramadol and Lyrica. No relief whatsoever. Only opiates worked. I had a great compassionate doctor for two years and then all of a sudden he left the practice one day with no notice and no reason. Now I'm considering a pain pump because the pain is returning in force.

    L4-5 herniation - very familiar. 460 pound mental patient fell on me as we were loading him into an ambulance. He would not fit onto the gurney. I had a laminectomy also, but as with most of them, it failed after two years. Then a discectomy and that was about as good as I would have it ever after. Recovery from the second surgery was grim, but it finally occurred. The neurosurgeon said, "You have a lot of scar tissue. About the worst I've seen." NOT what you want to hear. Oh, that second surgery resulted in a spinal fluid leak, so it was an overnighter rather than outpatient.

    Second spinal fluid leak - the first occurring during my second sinus surgery when the tool nicked the dura surrounding my brain. That was the first surprise overnighter. I mention all of this because my lumbar spine acts up about twice per year. Getting all the way to the end of June before it does so is a refreshing change, but there are a few other issues I am dealing with at this time. My lumbar was threatening to act up when I was hospitalized post-transplant, but it never put me on the floor.

    If there is an anomaly, an unusual or rare side effect, I prepare myself to receive or experience it. We are a select group.

    Have you inquired about a nerve block?
    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. #13
    Geez po18guy!!! You are a Level IV hazardous waste dump AND a 460 pound mental patient fell on you?? By my calculation, a meteor strike is next on the list. DUCK!!!
    Last edited by Dead Man Walking; 07-03-2017 at 03:19 PM.

  4. #14
    Pete: Seeing as your back is your primary concern, have you tried looking for a doctor who can explain/treat all the calcification in your spine/ skeletal structure?? Obviously, you want to find a NEW and GOOD doctor, which if nothing else will be a pleasant change from your past exploits.

    Best regards,


  5. #15
    Newbie Regular User
    Join Date
    Jun 2017
    They cut that disk out. I've been searching for a "good" doctor for 12 years now and have tried nearly everything under the sun. What I haven't tried I'm waiting to.

    This is getting off topic isn't it? I don't mean to distract from helping Leukemia patients.

  6. #16
    As a 17 year survivor of AML, you can probably pee on the carpeting in here and nobody will say BOO!!! Don't worry about it.....
    Last edited by Dead Man Walking; 07-10-2017 at 03:51 PM.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  7. #17
    Newbie Regular User
    Join Date
    Jun 2017
    I see. Thanks. I had a feeling that was the case but I try to ask to make sure.
    Last edited by PmbPhy; 07-15-2017 at 02:12 AM.

  8. #18
    Regular User
    Join Date
    May 2017
    Funny maybe our Leukemia was caused by our back operations? I also have had two spinal cord surgeries they removed L4, L5 discs and after 10 years they had to go back in remove scare tissue and some missed disc fragments. That is how I found I had Acute ALL Leukemia Phil Positive I was being checked for a lower back fusion then the same DR wanted to fuse some discs in my neck also.

    Anyway did not have the back fusion, two years before that they had to take 18 inches of my colon out man that is rough surgery they said I would experience pain for the rest of my life from that colon surgery they were right.

    So now for the last 9 months I have been getting treated for Acute ALL Leukemia Phil Positive. Such is life makes one wonder what is next?

    Anyway I am in remission for now anyway and still alive. Have to take my chemo pills for 16 more months and get I think one more chemo injection into my spinal fluid. Hang in there everyone

  9. #19
    Newbie New User
    Join Date
    Jul 2018
    Hey congrats on the remission!! That's great. What mutations did you have? Trying to find a survivor for my brother who was just told there is nothing else out there. He's only 29

  10. #20
    Regular User
    Join Date
    May 2017
    Pete well said I am a Marine and now at 15 months since my stem cell transplant and still inactive can say to all do not give up keep a positive attitude and keep telling yourself you can win this war so far I am living proof.


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