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Thread: SIRT procedure

  1. #21
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by mike49 View Post
    Yes on the blood sugar levels. That is the only thing I am high on. If I haven't asked about it yesterday it would have gone un-noticed. It's 330. would that cause the neurapthy ? If so what would work to deal with it ? The nurse practitioner wanted me to get checked for Diabetes but I don't feel like searching for another affliction.
    Consistent high blood sugar > potential diabetes > neuropathy > pain. According to the numbers in this article, you would be well advised to be checked: http://abcnews.go.com/Health/Diabete...ory?id=3812946

    The unexpected neuropathy is what triggered my question about blood sugar levels. Not to frighten you, but a friend recently lost half of one foot due to undiagnosed diabetes. It is nothing to play with - yet may be controllable via diet or prescriptions. Rather than suffer progressively increasing neuropathy, I would be checked.
    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.

  2. #22
    Senior User Bob W's Avatar
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    330 is a rather high BGL, might want to listen to the NP as we are on meds and night insulin and am maintaining a good 90-110 BGL. The diabetic neuropathy is a b*tch but if it develops into retinopathy well then we see folks go blind. (dang near got my wife.) Bring the BGL down with meds, diet and exercise. These issues CRC and diabetes can and will affect each other, ignore one and the other will be affected, treat and deal with both ah ha we live.

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014

    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!

    0700/2018 follow-up to be scheduled

  3. #23
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    My latest scan results from Monday May 18th. These are the liver lesion sizes

    Segment 4A measuring 5 x 4 mm (series 2, image 16), previously measuring 6 x 6
    mm.
    -Segment 6 measuring 8 x 5 mm (series 2, image 29), previously measuring 10 x 7
    mm.
    -Segment 5 measuring 8 x 6 mm (series 2, image 31), previously measuring 10 x 4
    mm.
    No new metastatic lesions are identified. No biliary duct dilatation.

  4. #24
    Hi Mike sorry you are here and going through all of this.
    My husband is a year and half out from stage 4 crc and has had y90 radioemobilization done to his liver. Once for each lobe. I'm wondering if the SIRT is a similar treatment. He too was very sick and in pain for a couple of days following his right side. His tumors are not operable either.
    He was given 2 weeks to live and he's doing great. He does have terrible neuropathy. That is his cheif complaint. His was caused by chemo. And unfortunately there is not much to be done for it. He is not a complainer but he talks about it a lot so it must be bad.
    My husband started out with the usual folfox in the beginning. Now he gets erbitux/irronentecan every Friday. Even though his scan looks good and his tumors appear to be dead, which is great news, he chemo continues for now as a precautionary measure.
    He had his colon tumor removed last month but they could not operate on the liver.
    He works 12 to 14 hour days and can still play on his days off. All is not lost. Keep hope alive and live to the fullest ☺️ there are many great treatments now.

  5. #25
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    Quote Originally Posted by TinaWorrying67 View Post
    Hi Mike sorry you are here and going through all of this.
    My husband is a year and half out from stage 4 crc and has had y90 radioemobilization done to his liver. Once for each lobe. I'm wondering if the SIRT is a similar treatment. He too was very sick and in pain for a couple of days following his right side. His tumors are not operable either.
    He was given 2 weeks to live and he's doing great. He does have terrible neuropathy. That is his cheif complaint. His was caused by chemo. And unfortunately there is not much to be done for it. He is not a complainer but he talks about it a lot so it must be bad.
    My husband started out with the usual folfox in the beginning. Now he gets erbitux/irronentecan every Friday. Even though his scan looks good and his tumors appear to be dead, which is great news, he chemo continues for now as a precautionary measure.
    He had his colon tumor removed last month but they could not operate on the liver.
    He works 12 to 14 hour days and can still play on his days off. All is not lost. Keep hope alive and live to the fullest ☺️ there are many great treatments now.
    Yep- I get the SIRT for the other lobe next month. I also get the same chemo regimen.

  6. #26
    Mike I wish you great success. I hope you've been inspired by the good folks here. I know I am. They are all so tremendously helpful.
    In addition, in case this helps, the second time my husband under went the treatment (y90) he sailed right through without complications. Nothing like that first round. Hoping that is the case for you as well.

  7. #27
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    Quote Originally Posted by TinaWorrying67 View Post
    Mike I wish you great success. I hope you've been inspired by the good folks here. I know I am. They are all so tremendously helpful.
    In addition, in case this helps, the second time my husband under went the treatment (y90) he sailed right through without complications. Nothing like that first round. Hoping that is the case for you as well.
    Thanks for the info. Hopefully 2nd SIRT will go much better

  8. #28
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    Blood Platelets at 89 No chemo today. They are going to give me an extra week off. Anyone ever have this happen ?

  9. #29
    Yes it has happened to my husband several times. No worries. They should bounce right back up after a break.

  10. #30
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    I had the 2nd Sirt procedure on June 29th to the other lobe of my liver. Surprisingly, zero side effects this time. Can't believe it. Scan's scheduled for August 13th

 

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