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Thread: Is it ok to be TOO optimistic?

  1. #11
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    Sorry that you have received this news. I will merge this "Worried" thread with the one you created within the Head, Neck, Throat Cancer forum as it keeps things "tidy" so our members can respond more thoroughly to your specific questions and concerns.

    While I have no real knowledge to offer based on your specific diagnosis, I will caution against listening to those that "Google" types of treatment, holistic approaches, etc. Your doctor is your best source of information. I would also make sure you are being treated at a top notch treatment center.

    I am sure one of our valuable, respected members here will chime in as he will be a wealth of knowledge and support. I am sure he will once he becomes available.

    Keep your spirits up, ask questions and know we are all here for you.


  2. #12
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, Alyssa--I'm sorry that you've found yourself on this forum, and that your doctor has finally confirmed "cancer" to you. You are certainly not the typical head & neck cancer patient--usually they're male, between ages 40 and 60. Based on what you've written, I think you fall outside of that.

    That said, let's try to take stock of a few things: first of all, I agree with your doctor; this is a treatable cancer. I was diagnosed with head & neck cancer, also stage III, over 6 years ago. Doctors have many options with which to treat this kind of cancer, and I think you can feel very good about your options.

    Have you had your follow-up meeting with the doctor that diagnosed your cancer? Can you tell me what kind of cancer it is, and HOW they actually diagnosed it? Usually, a cancer diagnosis requires some kind of biopsy--did they perform one on you? A biopsy is usually required to tell the doctors what kind of cancer it is, and how to direct their treatment protocols. In the neck, the most common cancer is squamous cell carcinoma.

    Were any other kind of diagnostic tests performed; e.g., any CT or PET scans? A PET scan could reveal if the cancer has spread to any other parts of the body.

    We here on this forum can be here for you, and we believe that information is a powerful tool. While we will support your virtually, you have a lot on your hands, and will need a support system to help, especially as you juggle the needs of your newborn. Do you have others that can help you--the father, family, close friends?

    If you can share a little more about any of your cancer details, we can help answer any questions. You can get through this--you have a goal, and that's to be the best mommy you can be to your newborn. You will need to balance time for treatment and recovery, but there will be plenty of time for both.
    Age 54 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

  3. #13
    Senior User
    Join Date
    Mar 2017

    Sorry you did get confirmation of a cancer diagnosis. My thoughts are with you and your little one.

    You are right in putting faith in your doctor, and trusting in his encouraging words. Depending on where you are currently being treated, however, you may want to consider getting a second opinion at a dedicated cancer center or teaching hospital, just to be sure you are getting state-of-the-art diagnosis and treatment.

    "Cancer" is not a single, homogeneous entity, and depending on the type of cancer (lymphoma, squamous cell, HPV-related…) and the affected organ (tonsil, thyroid…), prognosis can vary - so, I would encourage you to get as much information from your medical team as you can gather and process, and to share that with others on this forum, as they could give you great support through the next phases of diagnosis and treatment.

    Understanding your illness and treatment as well as future prospects should help you better deal with those aspects as well as with providing your baby with the stability and care s/he needs.

    Kind regards,


  4. #14
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Please consider seeking a second opinion on both diagnosis and treatment. Both can vary substantially from doctor to doctor and facility to facility. Even if you "like" your oncologist, you are well advised to seek out the best and brightest in the field - likeable or not. A good outcome is what you are looking for. Optimism? Yes. Realism? Also. But a positive attitude goes far and is an immeasurable help along the way.
    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.


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