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Thread: Nilotinib - Tasigna Anyone else taking this

  1. #1
    Regular User
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    May 2017

    Nilotinib - Tasigna Anyone else taking this

    Was wondering if anyone else has been taking Nilotinib - Tasigna ??

    Been experiencing what feels like bone pain again saw the last 3 weeks. Woke up at 3 am right hip, ribs and neck spine hurting. Turned onto the left side left ribs started throbbing. Got up an hour later took two ibuprofen got back to sleep again say from 5 am to 6 am got up. Seems like pressure from sleeping has been triggering this for me I know the Nilotinib states it can cause bone and muscle pain.

    What is scarry is this feels like I felt when I 1 found out I had acute lymphoblastic leukemia Philadelphia Positive sure hope it is being caused by the drug.

    Just was wondering if anyone else takes this and has similar experiences I see my cancer DR Aug 8th and will get more blood work sure hope it all comes back A-OK so scary when things like this happen.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Have they been doing blood work all along? If that is OK, then it is probably the side effect of the drug - afterall, the drug must be active in your marrow, right? Give call to doctor and ask, as they should know more about the actual side effects rather than those reported.

  3. #3
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    May 2017
    Yes been getting blood work done every month however last time in June DR said I can now wait two months for blood work. Last time around June 8th blood work no signs of any Leukemia cells.

    The drug can cause muscle and bone pain last time I was at the DR I said my muscle pain was worse but he seems to block out anything I say bad about side effects. Maybe he thinks I will want to stop taking the drug but that is not the case.

    There are all kinds of side effects from the drug I have been seeing on TV the last few months commercials about class action law-suites against the makers of Tasigna drugs. Just not sure how anyone could do that because without these drugs we would not be here.

    I have another appointment August 8th will get more blood work 1st I will tell the DR about my increased bone like pain off and on but he will just brush that off.

    Was just wondering if others taking this have been feeling the same. Thanks for your concern my guess is my blood work will be A-OK but he does not test for Leukemia cells each time he does blood work guess maybe 4 times a year.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Youch! Have you considered consulting with another hematologist? ALL is nothing to fool around with. I would think that each and every blood test, or at least at regular and reasonable intervals, would be done to detect leukemic cells.

    As to bone pain, an idea. Many who are injected with Neupogen or Neulasta to grow their white cells mention using Claritin (yes, the antihistamine) for the associated bone pain. It's cheap. Worth a try if you have not. No one knows why or how it works.

  5. #5
    Regular User
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    May 2017
    po18guy,was just telling my wife the retired RNC she said the doctor does check for Leukemia cells every time but that part of the blood tests has to be sent to California so we never know the results about that till the next office visit.

    As you know the blood tests are expensive like everyone I was getting tested daily for about a year, then every couple days, then once a week, then every two weeks, then one a month last visit he changed me to every two months now.

    My Doctor is the hear oncologist at Hershey Cancer Institute was sent to him when I was diagnosed right away as they said he is my best choice around here in south central PA.

    My next visit and blood work will be Wed Aug 8th.

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Yes, cost containment is a huge issue. Thinking about it, any relapse would make itself known in any event. But that's not going to happen!
    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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