The story of Nancy
I was diagnosed on January 3, 2020. Operated February 10, 2020. Removed was a 10 cm tumor, L adrenal gland, spleen and partial pancreas. Now I have metastatic stage 4 bone cancer. It’s remarkable I lived so long undiagnosed as these tumors are slow growers. Looking back I had signs. Irregular menstrual cycles. Full menopause at 37 and extreme internal racing suddenly came on at 42 years old while stretching one day. My incredibly skilled surgeon with such personable care Matthew Nehs at Brigham and Women’s Hospital in Boston informed me it was the largest he operated on and people travel the world for his experience in pheochromocytoma tumor removal. Most likely I had this disease since my late teens and shockingly not diagnosed until I was 60. I had very high blood pressure. And months later sweating and stomach pain. I did the common route psychiatrist for the racing 24/7 anxiety. I believe what kept my tumor “at bay” was from 19 to 34 I was all organic vegetarian and little sugar. At 34 I “fell off ” and eat far too much sugar, carbs, and some meat but no organic and little veggies. I’m trying to get back on that eating regime. Tuff because day after diagnosis I was let go from my high paying career and now on disability low income. And I’m all alone. The Boston hospitals don’t carry the only FDA approved medication for this disease. I take monthly octreotide injections. Unfortunately the side effects became intolerable. Lots of joint pain and many other symptoms listed as side effects. But I lasted over 2 years before requiring my dosage decrease from 30 mg to 10 mg. 10 mg isn’t known as a therapeutic dosage but the great news is my recent dotatate PET scan shows no further spreading. I decreased the mg 3 months prior. Actually took 2 months off from octreotide to be sure that was causing my symptoms. My symptoms did go completely away when not taking the octreotide, however, I was concerned and do need something so I suggested the 10 mg. I also take 1 mg of doxizosen for the BP along with 2 mg of clonadine. I’m very sensitive to these medications mostly the doxizosen causes me extreme nightmares and very tired. I’m going to MD Anderson in Houston Texas March 5 to 8 2023 for a consultation as they have an entire team who specializes in this disease. Dr Jimenez is the best I’ve heard. He’s an endocrinologist. I do live a physically active life as I love the outdoors. I have rib pain where the disease is a long with back pain as it’s throughout my spine, hips and other areas. Physical therapy helps especially needling. I had terrible neuropathy from my left hip to toes which ceased when I stopped the octreotide. I now have occasional tingling down both legs from the knee to toes which is my L5 S1 previous pinch nerve from 2007 that all of a sudden appeared. The PT, needling and massage help manage this. I absolutely believe you are what you eat and no sugar (very tuff for me, my only vice) but cancer loves sugar as Dr Nehs says and read Sugar Blues. The great news I’m still here! My toughest problem is I’m all alone in a small beach town full of families and seniors. And I’m a mountain gal. I’ll update after my visit at MD Anderson. My deepest gratitude to Dr Nehs who saved my life and Dr Perez and Pandy and all the nurses and staff at Dana Farber Boston and Weymouth for their care with limitations placed on them from their financial team not allowing the only FDA approved medication due to ROI. The pain clinics at Brigham and Women’s Hospital as well as South Shore Hospital for their skills in managing my pain. And NIH what a beautiful caring team. Unfortunately I didn’t qualify for their trial. So eat healthy, exercise, get a support system medically and personally and be proactive in your care. And spread the awareness! Pheo Strong Nancy