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    Other Care

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    Joshwa shared an experience

    Oh No (Cancer has spread/Metastasized): May 2018 and I started to feel funny, bloating, cramps in my upper abdomen. It persisted for a few weeks and I contacted my PCP... Emailed my heamotologist and she recommended I come in earlier than my first scheduled six month CT follow up. Had bloods and PET CT which seemed to be clear at first. She checked my glands and felt my abdomen and found nothing remarkable. Told me I had gas from my high fiber diet... Two days later I got the call and she told me they found a new hyper metabolic node(s)... Para aortic. In my upper left abdomen. Exactly where I had been complaining about cramps. It's small. Apparently, "too small for me to notice." About 1 cm. Yet, somehow I knew something was up?!?! Report, highly suspicious for new active site of lymphoma. Of course, the difficulties of distinguishing sarcoidosis and lymphoma make it impossible to say. I have sarcoidosis thoughout my pelvis and spine, with chronic reactive nodes in my groin, along with suspected (not confirmed) pulmonary sarcoidosis.

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    Radiation (External radiation ): Difinitive Radiotherapy December 18th 2017 to January 8th 2018, roughly... Had my mask made the same day we decided to go for radiation. It would be 30Gy over 17 days. Minimal skin irritation but I was proactive with natural remedies that worked excellently. The nurses were amazed how well my skin took it. Dry mouth, yes... Bad taste in my mouth, oh yes!!! Metallic, tasted like my mouth was bleeding. Minor throat irritation. Lozenges and life savers were key.

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    Decision Point (To radiate or not to radiate.... December 2017): Staging still inconclusive with so many areas of PET CT lit up several weeks after Rituxan. Drs suggested radiotherapy because they believed, but couldn't say for certain that the lymphoma was likely isolated to my left neck. Had a second opinion at Dana Farber, favored radiotherapy. Met with radiation Onc at DHMC who left the ball completely in my court as to what should be done... A difficult decision but we were optimistic for early stage, radiotherapy hope for cure.

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    Drug or Chemo Therapy (4x Rituxan ): October 2017 began series of 4x Rituxan infusions (once a week for four weeks). Drove myself there and back. Super sleepy from Benadryl and then super wired from prednisone! A roller coaster of energy crashing a few days after each time.

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    Procedure or Surgery (Surgery): Second bone marrow biopsy. This time, CT guided. BTW, it sucked! But good results, sort of... Sarcoidosis confirmed, no lymphoma in bone marrow.