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Thread: squamous cell of the tongue -newly diagnosed

  1. #1
    Newbie New User
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    Jul 2018

    squamous cell of the tongue -newly diagnosed

    Well this came as a shock to me and couldn't have been at a worse time. I am surrounded by naturalistic doctors and EENT's and surgeons all who have their opinion.

    I have a 2.1 cm tumor on the right lateral of my tongue, its painful. I have pain traveling into my right ear and down my throat. Biopsy and PET show no other involvement but my tongue. Surgeons say its in its early stages and have scheduled me to have half my tongue removed, with feeding tubes, tracheotomy, and reconstruction from my left arm, with muscle, tissue and an artery.

    This terrifies me. The doctors tell you only the good parts, others who have had this have informed me of the side effects and risks and life long troubles from this surgery, with no guarantees it wont come back, or that I will be able to talk or eat normally again. I do know it will be very different, but how? I am engaged to be married in March, so you can only imagine the stress Im under right now with decisions.

    On the other hand I have others helping me with a special diet rich in O2 and minerals, distilled water, fruits and veggies and a little protein. I am told it all is a matter of the mitochondria and reprogramming it to fight and fix what went wrong. This makes so much more sense to me.

    So I guess why I am here, is to find help from those who have been thru it, going thru it, and what to expect. Will avoiding the surgery (which they have given me 5 weeks) harm me if I stay on a natural path? All I hear is chemo is poison, surgery is mutilation, and there has got to be a better way.

    anyone hear of BX Protocol? Dr Eric Berg, Anti-angiogenics and DR Wm Li ? Comments?

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of this. I would hope that, if you are in the US, that you have consulted with a specialist at a National Cancer Institute designated comprehensive cancer center.

    As to all alternative/natural "remedies" - we discuss only science-based medicine here. None of the alternatives have subjected themselves to the scientific method, and remain anecdotal.

    My father tried such an alternative route and promptly died.
    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.

  3. #3
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, Cherielynnae-

    I'm sorry that you find yourself here as a result of your diagnosis. Head and neck cancers aren't pleasant, and in the short term, what your doctors are suggesting can put a damper on your appearance, and how you sound to others. Have you heard the recent video of Jim Kelly, the former NFL football quarterback? His weight is back, but his speech is somewhat slurred, due to treatments in his mouth and tongue.

    But he is here today. And he was diagnosed with the same cancer you have. His speech is not the same, but he is here today, enjoying the love of his family and friends. He's involved and educating others, doing his best to make a positive impact on his world.

    As po18guy said, we are not advocates of the alternative treatments you mentioned, and we won't tell you, "sure, give them a chance." There's simply no basis in any kind of science, regardless of how they may sound.

    I can't tell you that if you follow your doctor's suggested treatment plan, that you'll fully recover and everything will be exactly as it was before the surgery. It's been 5 years for me, and I still have swallowing difficulties, and occasional stiffness in my neck. But I don't have cancer.

    I can't guarantee that if you choose the BX protocol, your cancer won't disappear. There's a small chance that it could work--but its infinitismally small. There's a much greater chance of you don't follow your doctor's recommended tteatment, your cancer will spread. It will spread through your lymph nodes--perhaps to your brain or your lungs. It will not be pretty, and your groom could become a widower much sooner than they could imagine.

    I wish you the best decision and outcome for your cancer. If you decide on the medical approach, we're here for you, and will support you the best we can.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED


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