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Thread: Neck weakness years after radiation?

  1. #1
    Newbie New User
    Join Date
    May 2015

    Neck weakness years after radiation?

    Hi everybody,

    I'm back with another question for you.

    I had squamous cell carcinoma in my tonsils, metastasized to my lymph nodes 4 years ago, and underwent 8 weeks of radiation treatment with several chemo treatments. I have healed up nicely, and in the last few months even saliva production at night is doing well. I recently started doing Pilates every day, though, and I'm finding the simple act of holding my head up during many of the exercises is extremely challenging. Did any of you find your neck muscles significantly weakened by the treatment? I had not noticed any issues until beginning the Pilates, as doing normal movements with my head and neck hasn't been much of a problem, though my flexibility is definitely an issue. I have taken the approach that it will all strengthen with work and time, but recently I read about Radiation Fibrosis Syndrome, which starts with neck strength issues etc but is chronic and progressive and eventually affects swallowing. I find this very scary, and am hoping that this neck weakness is actually common and not indicative of RFS.

    Your thoughts?


  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of this. Not good to Google all potential long-term side effects, as you may never experience them. I would put a cal into doctor and inquire about this. As well, you might ask if their physical therapist knows of this problem and potential solutions.
    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
    Experienced User
    Join Date
    Oct 2018
    Hey Catica - I'm here for the prostate cancer forum, but 9 years ago I had a radical neck dissection and 31 days IMRT for squamous cell carcinoma (base of tongue). A year ago my neurologist diagnosed me with RFS. I don't have any neck weakness per se, but quite a few other symptoms, like peripheral neuropathy, weakness in my left arm (where the tumors were in my neck lymph nodes) and general fatigue. The condition comes on only some years after treatment (about 4-5ish for me) and, he said, peaks at about 10 years post. I'd recommend you consult with a neurologist. Is the neck weakness the only symptom?

    PS without insulting this forum, which is great, I'd recommend you also check the posts at the Oral Cancer Foundation website. It's a specialty place and the folks are very knowledgeable (as they are here of course) and helpful.
    Born 1953. 8/2/18: PSA 1.2

    10/11/18: TRUS biopsy: G6, 2 pos cores of 12. Prostate vol 37.1cc.

    12/6/18: 1.5T mpMRI: 15.5mm diameter mass; quote "This is considered a PI-RADS category 5 lesion"

    1/4/19: UroNAV biopsy: G6 tumor 10% in 1 of 6 cores; uro recs treatment

    2/27: Dr. Epstein - G6 on UroNAV core; 20%

    3/26: Color Doppler Ultra with Dr. Duke Bahn; PSA 1.8; recs AS.

    5/6: 2nd opinion from Kaiser uro; recs AS.

    6/7: Dr. Clayton Lau at City of Hope recs AS.

    6/14: PSA 2.2

  4. #4
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, Catica-

    I'm in a similar boat, having my diagnosis and treatment over 5 years ago. I also had a modified neck dissection on top of radiation and targeted therapy.

    I've always through my neck felt weaker, following my treatment. On the right side, where my neck dissection was, I was moderately numb for a year or two, and even now, it still feels a bit number if I rub the area. My neck in general, has more of a "pencil-neck" look to it now, and has since my treatments and surgery. Although I've heard about fibrosis, I always considered it more of a moderate side effect, and didn't know it could progress into something worse.

    I've been in situations before where I might be in a prone position, maybe working under a sink or in the garage, with my neck supporting my head at a funny angle (perhaps similar to what you might do during Pilates), when I'll feel a really weird cramp in the side of my neck. It's not been extreme or chronic enough that I've brought it up with my radiation oncologist, but I am scheduled for a follow-up in two weeks, I'll definitely ask more about the subject.
    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


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