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Thread: Metastatic Spine Mass

  1. #21
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    Yes, Roswell Park has a very good reputation (US News & World Reports ranks it 43rd in the country, out of well over a thousand cancer centers) and it sounds like it would be a good option for you if you've got a house and family; support like that is so important when battling cancer.

    Whether you go or ask to be sent is usually an insurance question, but it's probably easiest anyway to have the people you're dealing with now transfer him, since it will mean that they're briefing the new doctors and transferring records, which will save you a ton of hassle. You'll just need to tell them that that's what you want to do (if you both decide it's what you want to do).

  2. #22
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    Thank you for the help! I have no idea what I'm doing and just want to do my best by my husband. He's too exhausted to do it for himself, but we're figuring it out. I spoke with Upstate and Tricare... Upstate might take a couple weeks to get in to (though the nurse is contacting the doctors to try to get him in sooner), so they recommended getting a referral for a second opinion. We have to do that through his primary care manager. Thank you again.

  3. #23
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    You're very welcome; that's what we're here for.

    Yeah, this is not what anybody ever planned to have happen, and having to navigate the system while dealing with the stress of diagnosis is always difficult.

    If you're going to have a second opinion anyway it might as well be at one of the top hospitals; otherwise it may not shed any more light than what you've heard already. Upstate may very well be able to get him in sooner; those things seem to work out pretty often. Hopefully they will.

  4. #24
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    Can my thread please be moved back to the general cancer forum or other cancers forum? We may never know what the primary cancer is or where it came from, but we're dealing with spine, rib, liver, bowel, and possible lung metastasis... and also a pleural effusion. It's a little weird checking for responses in the "worried about possible cancer" area. Thank you.

  5. #25
    Administrator Top User lisa1962's Avatar
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    Hello Nickers

    Sorry that a clear definitive answer on type of cancer remains unknown. My thought is the medical team is still trying to identify in order to provide the best possible treatment options. However, it may remain unknown.

    As far as moving post to the General forum, I believe you will get the most responses if we leave it in the Worried forum for the time being. The Other cancers forum is very quiet so probably not the right place to move your thread. However, it is up to you and we can move your thread if that is what you want, just let us know.

    Lisa

  6. #26
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    Hi Nickers, we'll be happy to move it to one of the other forums if you like... I just can't think where to move it. As Lisa said, the trouble with the general cancer forum is not many people ever read there.

    I'm going to go and ask if anyone else has any idea.

    Meanwhile, I'm very sorry to hear that the situation has become so serious.

    I realize you have your hands full and probably not much time to respond but... I hope he's been moved to a major medical center?

  7. #27
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    Nickers, I've moved you to the "Other Cancers" forum for now. There are also the other forums (Cancer Pain, Financial Issues, Coping & Support) further down the main page where hopefully you can find people to talk to about the various issues you run into as you deal with the disease.

    I remember earlier on this thread GatorVet offered help navigating the Walter Reed system if necessary; you can contact him via direct message if you haven't done so already; just click on a name and select "private message" to do that.

  8. #28
    Super Moderator Top User po18guy's Avatar
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    There is one variety of T-Cell Lymphoma (Angioimmunoblastic) that is known for pleural effusions. Being a lymphoma, it can attach to any part of the body it decides to. In my case, it liked my marrow and small intestine.
    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.

  9. #29
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    Thank you! He is being treated at upstate now and we are very happy with the team there. I've read a lot in many of the other forums and the information has been very helpful. Now that he's finished with radiation (which was every day), I should have more time to participate.

  10. #30
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    I'm glad to hear you've found a good treatment team. That's so important.

 

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