• LuluB's Avatar

    LuluB shared an experience

    Drug or Chemo Therapy (Chemotherapy and radiation combined): I received 2 rounds of 5 FU and Mitomycin C chemotherapy along with 33 rounds of radiation. While the chemo was not too bad, actually only a reaction that caused a rash and itching, the radiation was tough after about the 15th round. I was pretty miserable those last treatments, but did start to heal and feel better about 2 weeks after they ended. Getting back to normal is still an ongoing process. Some days are still better than others, but I’m grateful for each day.

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    • smaxim's Avatar

      Congratulations on completing the treatment. I had to take a 2 week break from radiation because the peeling skin and burns made me feel like I was being deep fried. From late Dec. 2016-Mar. 2017, I received the exact same treatment as you. It was brutal. I became paranoid when using Fentanyl, a rare side effect. Then a pain pump of Dilaudid was hooked up to my port. The pump was more uncomfortable than wearing the chemo pump. had a nurse come to the house weekly to change the needle and also when I needed the med refilled. In June 2017, I developed peripheral artery disease in both legs and feet. I went from being active to not being able to walk without a cane or walker. I can't walk upstairs, can't lift my feet high enough to get into the shower/tub, can't stand and keep my balance. There's a place in the brain that is supposed to tell my feet that I'm standing but it doesn't. I can't keep my balance so I fall easily. I've gone to multiple neurosurgeons and neurologists just to hear over and over that I have to accept I'll never walk again. They conclude that radiation destroyed the nerves, another side effect. The cancer doctors deny that the treatment caused these issues. Besides that the radiation caused severe anal stenosis. Rectal exams are too painful without undergoing anesthesia in the operating room so a speculem or scope can be inserted. I'm basically isolated to the house due to uncontrollable gas and the need to have frequent bowel movements. On some days, it's up to 10 bowel movements. It's too embarrassing to go in a store or restaurant and be passing smelly gas which isn't always silent. I carry a small bottle of air freshener which I've sprayed as discreetly as possible. I've had to decline attending my niece's summer wedding. I have chemo brain which makes me forget words, not remember music, movies or experiences, not comprehend reading, or how to do math. My husband and I used to go to movies, attend church, shop, vacation yearly at Disney World, go out for dinner and be active. Now, he mostly does the shopping and everything else plus work. I hate what has happened to my life. I sincerely pray that you do not have any of my experiences. I've never come across anyone with all of the side effects I have. I get so frustrated at not understanding why. I'm grateful for life but I have little quality of life.

      about 1 year ago
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