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Thread: Metastatic Spine Mass

  1. #1
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    Metastatic Spine Mass

    My husband is active duty army... He started having back pain all most five months ago while he was still in Afghanistan. When he got home, his primary sent him to a chiropractor and even though the chiropractor suggested a ct scan, his primary wouldn't order it for months. He was given motrin and a referral to physical therapy. He hasn't slept through the night in the 4 months he's been home from deployment. They finally gave him tramadol and Gabapentin. He thought the Gabapentin was helping, and 4 days later he was covered in itchy hives from head to toe. His primary wouldn't give him something else and actually suggested he try it again... which he won't. He'd rather be in pain than itch.

    He ended up being diagnosed with lung nodules on May 11th and a metastatic spine mass by mri on May 13th. He was given referrals to both pulmonolgy and oncology on the 16th. Oncology refused to see him until he saw pulmonology... so he saw pulmonology and she said his nodules are tiny, smooth, most likely not cancer and he should have another ct scan in 3 months to make sure they haven't changed. She said that for a mass the size of the one on his spine to be caused by lung caner that he'd have to have a huge mass in his lung, and the nodules are tiny. She also said that he shouldn't lift over 10 lbs or do anything strenuous because his vertebrae could break, but she couldn't tell us much else because it's not her specialty.

    And oncology is still refusing to see him because they say they don't have all the records they need. Well, they have every record available and the office staff was completely rude and unhelpful with explaining what it is they want from us!

    So, I called our insurance to find out how to change the referral to a different oncologist... and I called a different oncologist (Upstate Cancer Center in Syracuse NY). Upstate was pretty helpful. They said he should have a PET scan, biopsy, or diagnosis before any oncologist will see him, but that we can have his records sent there now and we should try to get his primary dr to order a PET scan.

    I'm so livid. I can't even put to words how disgusted I am. He's been serving his country for over 21 years and never been sick before now.
    My husband is still working normal hours every day! No one has explained the spinal mass to us. Today I filed an ICE complaint against the clinic he is seen at and he also went to his CO... I feel like we are all ready months behind on starting treatment... and now everyone is dropping the ball on getting him treatment. We are so clueless how everything works. Any input or suggestions would be a blessing. Thank you.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    So sorry to hear this! If you have not been to Memorial Sloan Kettering, I would strongly suggest a consult with them. MSK is certified as a comprehensive cancer center by the National Cancer Institute. As to lung nodules, I have had them. You probably have had them - they simply caused no symptoms and went away on their own. Mine are gone. Most certainly a sample of that mass will have to come out. Let us hope and pray that it is not what they think it is.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (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) Myelodysplastic Syndrome (MDS), a type of bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of those drugs at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  3. #3
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    Thank you. I bookmarked Memorial Sloan Kettering.

    His primary dr probably jumped the gun with the oncology referral. From what I'm reading now, he also may have jumped the gun by calling it cancer? In his defense, the radiologist report from the mri does say "metastatic spine mass." So, should we be looking for an orthopedic surgeon or a neurosurgeon to get a sample of the mass? His primary dr led us to believe that oncology would figure out "where the cancer is coming from," but that's not happening.

    I understand the oncologist needing more tests before they will see him, my frustration comes from the fact that they won't tell me what tests or who he should see and acted like I was bothering them just by asking. We went down to the office to ask what he needs to do so he can get his appointment, and she just kept repeating "We will call you to schedule an appointment when we have all of the records." I told her that all of his records are there and asked what type of results do we need to find for him to get scheduled. For all I know the oncologist there might be a really great doctor, but I'm dreading ever having to deal with his office staff again. I've never gotten a referral from tri-care and then been told I can't have an appointment.

    Over the past couple weeks, my husband's pain has gotten worse. He readjusts himself constantly. A few days ago he quit bending over. Yesterday I took down the baby gate we've had up for the dogs for years because he was struggling to step over it. It's so hard watching him do less and less. He was the 50+ year old that the 20 somethings couldn't keep up with... never been sick and always worked through injuries. Thank you for listening. I will update whenever we find out something.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    No observed "mass" on the spine is any good. Now, is it cancerous, benign, a cyst of some other growth? The only way - the only way - to determine this is to obtain a sample of that mass for pathological examination. No guessing allowed! That sample will probably be collected by a needle biopsy, as spinal surgical procedures are quite risky. However, from the slow pace at which this is proceeding, I would quickly call MSK for a consult. Your medical team should be giving you much more clarity and direction than you are apparently receiving. As friendly and experienced as my first oncologist was, his advice would have killed me. It was a second opinion at a major center (such as Memorial Sloan Kettering) that saved my life.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (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) Myelodysplastic Syndrome (MDS), a type of bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of those drugs at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  5. #5
    Super Moderator Top User
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    USA
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    Upstate in Syracuse has a very good reputation. So does Strong Memorial in Rochester. They do not mess around at Strong. Get him to either of these places if you can. I don't know what your insurance allows and doesn't allow, but it sounds like his doctors aren't being helpful so he needs different doctors.

    As a side note, getting records from one doctor to another always seems to raise issues like the one you've run into with the oncologist; in my experience one office always insists it sent them and the other always denies having gotten them. I've found the only reliable thing is to carry them yourself. (And some of them hate to let you do that, but the patient is within his or her rights to politely insist.)
    Last edited by GBMsibling; 05-24-2016 at 02:00 PM.

  6. #6
    Administrator Top User lisa1962's Avatar
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    new york
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    Sorry to hear of the issues going on with your husband and I can feel your frustration, rightfully so. You have received many contradications and in my opinion, inadequate information and care. Po and Sib are right, your husband needs different doctors and immediately.

    Right now, the priority is managing his pain and finding the reason for this "mass" found on his spine. That is worrisome but keep in mind, it is not cancer until a pathology report says it is.

    My suggestion, right down all your questions, gather together the information you do have and make some calls. I assume you are in the Western, New York area so there are many good centers and of course, MSK if that is possible to make that travel but Upstate and Strong are two very reputable medical facilities in your area.

    Lisa

  7. #7
    Regular User
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    May 2016
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    Thank you so much Po, Sib, and Lisa! Our filed complaints (and prayers) paid off. The military dr is ordering more blood work, a PET scan, and going to find someone to (in his words regarding the mass) stick it... My husband also now has an appointment Friday with the local oncology office. He would prefer to see oncology locally because riding in a car is so painful... I would prefer we transfer to Upstate in Syracuse from the start. Tri-care will change his referral to Upstate at any time my husband wants. All he has to do is call. So, I guess the plan is to stay local until we get a definitive diagnosis and then decide from there.

    There's also a possibility that the army will send him to Walter Reed for treatment.

    Oh, we have an appointment with pain managment tomorrow also... so praying that he can get something more effective for his pain.

  8. #8
    Super Moderator Top User
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    Glad to hear things are moving ahead. While I can understand riding in the car being too painful, medical transport ought to be available to deal with that. If you don't get a diagnosis locally soon, he may want to reconsider. Sometimes only the big teaching hospitals will keep testing, scanning and studying a patient's symptoms until they can nail down a diagnosis. Smaller hospitals can be awfully fond of sending people home with Tylenol.

  9. #9
    Administrator Top User lisa1962's Avatar
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    Good to hear things are finally moving in the right direction. Keep vigilant with your action and let us know how it goes.

    Lisa

  10. #10
    Experienced User
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    May 2014
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    Maryland
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    Nickers,

    Active duty Army myself in the DC area. I was treated at Fort Belvoir in Virginia, and my care was excellent from the start. It really saddens me that there is such a discrepancy in the service provided between treatment facilities. I receive all of my primary care through Walter-Reed. If he does get transferred there, and I can assist you guys in ANY way, please let me know.

    Kevin
    39 yo male
    Diagnosed with DLBCL found in single colon polyp during colonoscopy performed for small amount of blood in stool.

    Germinal center type; c-myc and Bcl-2 negative
    PET scan negative; Bone marrow negative
    Stage IE

    6/6 rounds of R-CHOP completed on 7/15/14
    7/29/14 Sigmoidoscopy looking at original site of polyp is clear.

    PET conducted 8/26/14. NED.

    Colonoscopy conducted 5/26/2015 clear.

    CT performed 2 July 2015. NED
    Port removed 5 AUG 2015

 

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