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Thread: just informed

  1. #1
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    just informed

    HELLOO
    Doc called a week ago and informed me that i have kidney cancer. What a blow that is. im a nervious wreck. My first appmt is with urology on june 24th. i hate waiting. I just got out from ten days at Madison V.A. hospital. All i know is that its my right kidney, not much to go on. i hear that if caught early enough that survival rates are at 80%. Thats great unless your in the 20 bracket. A little background, im 66 yr old disabled. ive got pacemaker plus 6 stents, a neurostimulater for back pain, ,2 laminectomies-l4,l5,s1,,had stomach removed about 6 yrs ago {non cancer}, bled out twice from stomach surgeries, severe neuropathy, 5 hernias repaired, TIA ,Afib , Arachnoiditis, Achalasia and now this. Im a fighter but things are getting harder. i guess im happy just to be on top side of dirt. First thing i told doc was TAKE IT OUT..I think thats pretty much a normal response. Since jan ive lost 4o lbs and doc wants to implant a feeding tube.. im sorry for rambling on,just nerves. update,6-19-2019, GI Doc called today,,NOW THEY ARE CONSIDERNG THE POEM procedure on my esophagus..They are worried that i wont be able to fight the cancer if my nutrition levels will be to low,,part of Achalasia.
    Last edited by robc2; 06-20-2019 at 04:28 AM. Reason: spelling

  2. #2
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    Quote Originally Posted by robc2 View Post
    HELLOO
    Doc called a week ago and informed me that i have kidney cancer. What a blow that is. im a nervious wreck. My first appmt is with urology on june 24th. i hate waiting. I just got out from ten days at Madison V.A. hospital. All i know is that its my right kidney, not much to go on. i hear that if caught early enough that survival rates are at 80%. Thats great unless your in the 20 bracket. A little background, im 66 yr old disabled. ive got pacemaker plus 6 stents, a neurostimulater for back pain, ,2 laminectomies-l4,l5,s1,,had stomach removed about 6 yrs ago {non cancer}, bled out twice from stomach surgeries, severe neuropathy, 5 hernias repaired, TIA ,Afib , Arachnoiditis, Achalasia and now this. Im a fighter but things are getting harder. i guess im happy just to be on top side of dirt. First thing i told doc was TAKE IT OUT..I think thats pretty much a normal response. Since jan ive lost 4o lbs and doc wants to implant a feeding tube.. im sorry for rambling on,just nerves. update,6-19-2019, GI Doc called today,,NOW THEY ARE CONSIDERNG THE POEM procedure on my esophagus..They are worried that i wont be able to fight the cancer if my nutrition levels will be to low,,part of Achalasia.
    UPDATE JULY 17 2019...Doing poem july 31st,, Pray it works--been feeling sick again,,,hard to hold any kind of food,,even those protien drinks. Maybe the cancer or tummy-esophagus issues. Just had a stress test yesterday, that was pre-op for POEM. Ankle have been swollen and very painfull,,,i dont think its a cardiac thing,,,,maybe neuropathy or Arachnoiditis issue.

  3. #3
    Hi, You surely have been dealt some rough blows but it is apparent you are indeed a fighter! I hope your treatments and surgery goes well! By the way, I am familiar with Arachnoiditis myself from a blood patch gone bad to correct a bad lumbar puncture. Do you know any more about your kidney cancer diagnosis and staging? Take care now, and you will be in my prayers.
    rmaureen
    Diagnosed Sept. 2005
    Stage III-C Endometrial Adenocarcinoma
    Grade 2
    My Story:
    http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

  4. #4
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    Poem

    Quote Originally Posted by robc2 View Post
    UPDATE JULY 17 2019...Doing poem july 31st,, Pray it works--been feeling sick again,,,hard to hold any kind of food,,even those protien drinks. Maybe the cancer or tummy-esophagus issues. Just had a stress test yesterday, that was pre-op for POEM. Ankle have been swollen and very painfull,,,i dont think its a cardiac thing,,,,maybe neuropathy or Arachnoiditis issue.
    POEM , Tomorrow,, a bit nervous.

  5. #5
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    update,,,poem surgery a bust,,,new issues in esophagus,,they did a biopsy,,,dont know on what,,,they will call in 2 weeks they said...

  6. #6
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    Barrets

    Quote Originally Posted by robc2 View Post
    update,,,poem surgery a bust,,,new issues in esophagus,,they did a biopsy,,,dont know on what,,,they will call in 2 weeks they said...
    sept 20th , now doc thinking BARRETS ESOPHAGUS .What the hell is Barrets ESO?

    UPDATE Diferent doc said it is not Barrets. i have oct 25th appmt with V.A. in madison.. i think they want to put in a feeding tube. Surgion told me options are feeding tube or intrevenous feeding. STILL LOSING WIEGHT. No news on cancer yet,,, ,,cat scan the 25th also. Esophagal spasms {2 or 3 a day }are severe and getting very little help
    Last edited by robc2; 10-09-2019 at 02:35 AM.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Very sorry to read all of this. I certainly hope that things are going tolerably. Barrett's is a pre-cancerous condition caused by chronic reflux. DW has it and I have developed it since tons of chemo. AT 67, all I can say is "Oh well..."
    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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