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Thread: 21 year old medical mystery?

  1. #1
    Newbie New User
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    Nov 2018

    Lightbulb 21 year old medical mystery?

    Hello all,

    I am a 21 year old female, perfectly healthy before March 2016. In March 2016 I had a bad case of viral meningitis (suspected/probable) with low white-counts (2.1) and platelets (~50k) which rose to normal in a week. Hem/Onc did flow cytometry at that time which looked infectious, and showed no evidence of blasts or other concerning features.

    3-4 months later I developed fatigue/malaise, significant backaches that come and go, and fleeting joint pains in my fingers/wrists/knees/ankles/toes. I often have no appetite (unusual for me) and have to choke down enough food. These symptoms have been constant over two years now. They have worsened mildly.

    Also 2 years ago, I started to get "episodes" 1-3x per month with swollen, painless hard cervical lymph nodes (just two, the same ones each time), flu-like malaise, nausea and full body aches, and white plaques on my tonsils that look like an infection (like strep). During episodes I occasionally (not always) have low-grade fevers to 99.6 or 99.8, occasionally up to 101, never higher, and passing in 1 day.

    During these episodes, the white plaques come and go in 1-3 days. They are painless (no sore throat), test negative on every culture, and don't respond to antibiotics. Currently, my doctor believes they are not infections, but just "plaques of white blood cells" associated with inflammation. My platelets are a little high (477) which my doctor thinks is a sign of inflammation.

    My very extensive bloodwork is completely normal (including autoimmune, lyme, mono, .......). My doctor suspects I have a postviral syndorme or undiagnosed/rare inflammatory syndrome without any other underlying disease.

    My question: Does this sound suspicious for malignancy at all? I am aware there's a spike of Hodgkin's in young people. A few more relevant details:

    • My repeat flow cytometry (October 2018 ) is completely, grossly normal.
    • These are all normal (if it means anything to you): cd3 abs, t-lymphs cd3%, b-lymphs cd19, b-lymphs cd19%, cd3+/cd4+, cd4/cd8 ratio, t-suppressor cd8, cd56/16 (NK), CBC with diff and slide/smear review, IGA/IGM/IGG and IGG subtypes, c4 complement

    • The two lymph nodes in my neck have not disappeared entirely in 2 years, but most of the time they are only marble-sized ("shotty" as my doctor would say), and they swell up significantly when I have white stuff in my throat.

    • The backaches are intermittent and waxing and waning, but can be significant, and often worse when I eat.

    • No weight loss (actually gained a few pounds), night sweats, cough/SOB or other complaints.

    Thank you for any thoughts or opinions. Of course I am not seeking medical opinions or professional advice, and am closely followed by my doctor. I just want to talk to more people and get a few casual opinions. Please feel free to follow-up with any questions for me!
    Last edited by karmalucy; 11-01-2018 at 09:31 PM.

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi, sorry to see you feel the need to post here, as you are aware this site is to support cancer patients and none of us are medically trained, I guess its your worry about Hodgkins Lymphoma that has brought you here?

    From what you describe it sounds very much like your lymph nodes are doing what they are designed to do and thats deal with infections and bugs, which is why they will go up and down and in some cases its not unusual for them not to full reduce back to normal and stay raised. HL would not normally sit dormant and it would have shown up through enlarged nodes 2cms + or a mass within your body. So its very unlikely that it is, but as I said none of us are medically trained and you should be having these discussions with your doctor, as they know you and your history and they are best placed to deal with this, so trust your doctor, ask your questions and understand sometimes the are no answers.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
    Newbie New User
    Join Date
    Nov 2018
    Hi John,

    Thank you for your reply!

    Yes, I posted here partially because of concern for Hodgkins (since it can elude blood tests), and partially concern for other malignancy because (a) the inflammatory diseases my doctor suspects are actually rarer than cancers even in young people, (b) malignancies can cause an inflammatory response, and (c) basically everything else has been ruled out (including all infections/bugs that you can test for).

    That said, what you're saying completely makes sense -- that HL wouldn't wax and wane, and would be much bigger.

    Best wishes to you.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    No, it does not sound malignant. A malignancy that was producing such obvious symptoms and clearly observable signs could not hide. IMO, it is quite possibly viral/low-grade bacterial and might stem from the meningitis. There are 3,300-5,000 viruses which have been described, and millions - millions - that are simply unknown. Their effect on the human body is also unknown.
    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.

  5. #5
    Newbie New User
    Join Date
    Nov 2018
    Hi, thanks for writing. I am glad it doesn't sound malignant. It is hard to wrap my head around the idea that we may not be able to diagnose this.

    Best of luck to you--

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Thank you! After surviving a 99.5% chance of not making it, I am fairly comfortable now. As to your condition, we have all heard of the "stomach flu" or a "24 hour virus", but there are literally millions of other viruses that cannot be diagnosed, as they are unknown entities. That which cannot be identified cannot be treated. So, we address the symptoms. Not very satisfying, but that is life. We simply must allow our immune systems to fight against them. With chronic cases, it may take some patience.


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