Christiana3's Journey with Carcinoid Tumor, Colorectal Cancer
Patient: Colorectal (Colon) Cancer > Carcinoid Tumor
Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 9 years ago, Female, Age: 64, KRAS mutation positive: No, BRAF mutation positive: Don't Know, Stage IV
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Diagnosed
Oh No
This person has yet to add any details about this experience.
Surgery
Procedure or Surgery
Surgery to remove gallbladder and do hysterectomy since I had tumor the size of a soccer ball on my ovary. lost 15 pounds on table lol. Did biopsies of omentum and lymph and organs that were taken out. found out cancer originated in colon and omentum tested positive too. two weeks later got port and colostomy. hard recovery but I did it, a neurologist friend didnt think I would make it after second surgery but she said I bounced right up and said when do we start chemo lol. Show what you can do if you have to. I wasnt going to give up.
Chemotherapy
Drug or Chemo Therapy
Had reaction to oxyliplatin, broke into rash in chemo room, had to quit. had reaction to irinotecan felt flushed and like pressure was on my chest, quit that and put me on 5fu, was doing three chemo cocktail for every two weeks 22 times wow. transfered to new hospital since i moved and they gave me a 2 month repreive which helped. went back on 5fu only but it wasnt shrinking the last tumor i had in my colon so they started me on erbitux since I have the wild kraz gene and not the mutated one. glam has helped me tremendously on this. I actually feel better, tired but I dont feel so drained and sickly. I actually feel good, not sure if that is good or bad with this stuff. the side effects are bad with dry breaking skin and itching and acne but hey i can handle that. other than that its the same cant sleep but at least not sick. the first dose was really hard had that poisioning feeling for a day or so but it went away.
Depression/Anxiety
Side Effects
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Switch chemo to erbitux and keep on taking my supplements of probiotics and immunity boosters, stay away from antioxidants cause they hinder chemo and take my lemon water to add alkyline to my body cause cancer loves a sugar, high carb and acid base. so t
Decision Point
This person has yet to add any details about this experience.
Radiation
This person has yet to add any details about this experience.
Job
Loss
Not only lost job, but while in chemo I only heard the doctor say it was manageable and not that they only gave me two years. My mom was with me and she heard it too but you are so overwhelmed on your first visit sometimes you forget to ask or only hear what you want so I think the navigators would be good for this. After almost one year into chemo I had a 4 team doctor rotation and when I asked the question of how long I will be on this and if I could go on maintenance he said well you know you have a possibility of only having a two year life span. I think my mouth fell to the floor and I was the only one there until my girlfriend came to sit with me. I grabbed her by the arm and went to the ladies room and sobbed at her that they gave me two years. When I got to the chemo room all the nurses saw I was crying and they pulled the curtain and sat with me and cried while I asked them questions. sometimes they have a different experience than the doctors do and most said two years is about right. but its been over two and I am starting my third and I look and feel good, people look at me and say you dont look and act like you have cancer (yes i take that in a positive way because i know they are being helpful) and actually that makes me stronger. I always try to smile, help others and keep a positive attitude. Cancer has changed me, it has made me a better, caring more patient and appreciative person. I have had a month where I was depressed and crying all the time and I am one of these people who dont like to cry on other peoples shoulders but when my friends called and I started crying they all understood and offered help if I needed it but I just needed to get thru it by myself and I did. Sometimes you keep things bottled up cause you dont want to worry your family but eventually it all comes out one way or another. Enough of all this for now lol.