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Thread: Possible Smoldering Myeloma?

  1. #1
    Newbie New User
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    Oct 2015

    Question Possible Smoldering Myeloma?

    Hi Everyone,
    I just had a quick question about my bloodwork results. Everything came back normal except for my IgA level, which was high. There are only a few causes of this, to my knowledge, one of which being multiple myeloma. I was tested for Lupus and Rheumatoid Arthritis so we know I don't have either of those. I don't seem to be having any symptoms of MM, although I do have dizziness and my chest pain was determined through my cardiologist to be bone related, which could be considered a symptom. I don't know if this is worth mentioning to my doctor, only because my chances of actually having MM seem so low, because I'm a 17 year old girl. But I'm at a loss and so is my doctor; she doesn't know what to do anymore because we've checked every possible thing. Any input would be great thank you!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Welcome! I have moved your post to the "worried" forum, since there is no diagnosis. You've been Googling, haven't you?

    Google is a mortician, NOT a doctor.

    Elevated IgA is a sign that your immune system is producing antibodies above normal levels. Such a response indicates that your immune system is either reacting to some pathogen/allergen or, in the case of an auto-immune condition, against the body itself. At this point, doctor is likely (and logically) looking more toward allergies or possibly an autoimmune condition of some type. There are innumerable allergies and about 80 different known autoimmune conditions, with many times that which are unknown. IgA is produced in large part by the mucosa (from oral cavity and sinuses all the way through the colon), which would not necessarily involve your bones or marrow at all. The only connection in such a case would be that your immune system originates in your marrow. It could be as simple as common allergies (environment or food), a reaction to the also common heliobacter pylori in your stomach, or you could even have something like celiac disease. Please note that none of this is cancer, and that allergies are extremely common.

    MM is the presence of excess (malignant) blood plasma cells in the bone marrow. Normally, MM diagnosis involves blood and urine testing, and bone marrow is biopsied. If that has not been done, then doctor is apparently not concerned about it. At this point, neither should you be. Your immune system is still in the maturation process, allergies can suddenly appear, and some form of allergy seems much more likely to me. A food allergy, for example, might result only in the inflammation of your intestines - thus elevated IgA. Just let doctor keep working on this, and do not hand yourself a death sentence by Googling.

    Oh, and per the National Cancer Institute's SEER study, exactly 0.00% of myeloma patients are under age 20.

    So, relax!
    Last edited by po18guy; 10-20-2015 at 04:58 AM.
    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 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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    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 measureable - 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.


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