RebHar's Journey with Colorectal (Colon) Cancer

Patient: Colorectal (Colon) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 6 years ago, Female, Age: 60, KRAS mutation positive: Yes, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    I've had several surgeries: Partial colectomy with temporary ileostomy, Total abdominal hysterectomy, appendectomy, debunking, removal of 100 cm small intestine, cytoreduction surgery --- all for treatment of my real diagnosis, which is pseudomyxoma peritonei. (Not available on this system's list, colon surgery is probably closest.)

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  2. 2
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
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    Ileostomy

    Procedure or Surgery

    I had a temporary ileostomy for about 6 months after my first colon surgery (which was a partial colectomy for removal of a large benign villous adenoma). The ileostomy wasn't bad at all, once I got used to it. In fact, it made life so much simpler that I was a little sad to see it go! Don't be afraid of getting a colostomy or ileostomy. They're not "gross" -- it's just a different way of going to the bathroom. It's so much easier than suffering with symptoms like bad diarrhea or constipation.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I have a "power port" that was used for IV chemotherapy for about a year (both FOLFOX and FOLFIRI). I'm on pill form chemo now (Xeloda) so I don't use the port for anything other than having blood drawn (when there's an RN available to do it -- phlebotomists can't access ports.) I also have to have the port flushed every 4-6 months to keep it working right. I've been really glad to have the port. It makes accessing veins so much easier!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  4. 4
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    No further surgeries are possible.

    Oh No

    After my last surgery -- a 8 or 9 hour cytoreduction procedure -- my surgeon told me that no further procedures would be possible. I have too much scar tissue and there aren't any more organs that can safely be removed. I have pseudomyxoma peritonei, a rare cancer that spreads throughout the abdominal cavity as a jelly-like substance over the surface of all the organs. Sometimes it hardens on the exterior of the organ and can impede function.

    0 Comments
  5. 5
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had 3 months of FOLFOX treatment that wasn't very effective. Then I switched to FOLFIRI for 7 or 8 months. That worked pretty well. I started chemo after my first cytoreduction surgery. Then stopped it a month or so before my second cytoreduction. I got a fistula from my second cytoreduction (colon through abdomen skin to outside world). I couldn't start any kind of chemo again until the fistula healed, which took about 6 or 8 months. Finally it's healed and now I'm on Xeloda -- a pill form chemo.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  6. 6
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    I had to take neulastin injections for a while when I was on FOLFIRI. It wasn't nearly as hard giving myself injections as I thought it would be.

    Easy to Do: Not Specified
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  7. 7
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Nausea medicine

    Drug or Chemo Therapy

    I take Phenergan. It works great.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  8. 8
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Pain medicine

    Drug or Chemo Therapy

    I take extended release morphine and, for breakthrough pain, Dilaudid. They both work well for me.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  9. 9
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    dronabinol (Marinol)

    Drug or Chemo Therapy

    Marinol is THC -- the active ingredient in marijuana. It comes as a pill -- so this isn't exactly "medical marijuana". It's not the actual plant. It's just lab-created THC. It works very well for me as an appetite stimulant. It also helps with pain and nausea. My understanding is that Marinol is legal throughout the US, but it's not available in many places. I don't know why. I get it through the NIH/NCI (National Institute of Health/National Cancer Institute). I have a connection there because my last cytoreduction surgery was done there. (And I was in the hospital for a full month following that surgery -- lots of problems.) Anyway, ask for Marinol. It's a really helpful drug. (And, yes, you may feel a little bit stoned when you take it. Just go with it.)

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  10. 10
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    I've had to have a couple transfusions because of ongoing anemia from the chemo.

    0 Comments
  11. 11
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Bleeding

    Side Effects

    Back when I was on FOLFIRI, I'd get nosebleeds pretty easily. I don't have that problem now that I'm on Xeloda.

    0 Comments
  12. 12
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Constipation

    Side Effects

    Surprisingly, with Xeloda I'm more like to be bother with constipation (except for the time we tried increasing the dosage when I got diarrhea.)

    0 Comments
  13. 13
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Depression/Anxiety

    Side Effects

    I take Lorazepam for anxiety and, primarily, to help me sleep at night.

    0 Comments
  14. 14
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Diarrhea

    Side Effects

    With FOLFOX and FOLFIRI, I had a lot of diarrhea. I found that Lomotil every four hours really helped with that. Also, for sore butt, try Proctofoam.

    0 Comments
  15. 15
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Eating problems (anorexia)

    Side Effects

    I've had problems with low appetite after all of my major surgeries. I've had 3 major surgeries in the past 2 years and have lost an amazing 100 pounds. Granted, I was overweight (225 pounds at 5'9") -- but now, at 125 pounds -- I am really quite disturbingly thin. Happily. I appear to have quit losing weight and am holding pretty steady at 125 for the past 3 months or so. Now, if I can just start gaining weight.

    0 Comments
  16. 16
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Fatigue (tiredness)

    Side Effects

    General fatigue is pretty common with cancer. I took a newer drug called Stivarga for a couple weeks and it made me REALLY REALLY fatigued. Apparently this is a common complaint with Stivarga. It made me tired just walking across the room. Yikes.

    0 Comments
  17. 17
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Hair loss (alopecia)

    Side Effects

    Lost my hair with FOLFOX and FOLFIRI. It's grown back now and Xeloda doesn't appear to have any affect.

    0 Comments
  18. 18
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Fluid in the abdomen (ascites)

    Side Effects

    Ascites is a common symptom with my disease, Pseudomyxoma Peritonei -- so it's not really a side effect of anything. It's the disease itself.

    0 Comments
  19. 19
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Hand foot syndrome

    Side Effects

    With FOLFOX and FOLFIRI I got some neuropathy so my hands and feet (especially feet) tingle and feel cold all the time. Now, with Xeloda, the skin on my feet is peeling. This is apparently a common side effect.

    1 Comment
  20. 20
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    I had to take neurontin injections while I was on FOLFIRI.

    0 Comments
  21. 21
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Nausea/Vomiting

    Side Effects

    Luckily, I've never had a BAD situation with nausea and vomiting. I've only vomited a few times over the past couple years and nausea is relatively mild (controlled with Phenergan) and only happens once every week or two.

    0 Comments
  22. 22
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Tingling and cold feeling in the hands and feet. Feet sometimes feel sort of numb, too, when it's bad.

    0 Comments
  23. 23
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Pain

    Side Effects

    I'm fortunate that morphine works well for me. Pain isn't a huge issue. My doctors have been very cool about giving me what I need as far as painkillers go.

    0 Comments
  24. 24
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Shortness of breath

    Side Effects

    This was mostly associated with the severe fatigue I got from Stivarga.

    0 Comments
  25. 25
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Taste change/loss

    Side Effects

    FOLFOX in particular really messed up my taste buds. Things tasted metallic. Even though it's been over a year since I last was on FOLFOX, I still have lost my taste for many of the things I used to enjoy. Coffee, wine, beer, cheetos, and many other things I used to enjoy -- I just don't have any appetite for anymore.

    0 Comments
  26. 26
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Weight loss

    Side Effects

    I've lost 100 pounds in the last 2 or 3 years. I was overweight -- but not THAT overweight. I'm 5'9" and I've gone from 225 to 125 pounds. It's been an interesting experience. I can fit into all kinds of clothes that were never in my size before!

    0 Comments
  27. 27
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Hospitalization

    Other Care

    Fairfax Inova Hospital - Fairfax, VA Holy Cross -- Kensington, MD St. Agnes -- Baltimore, MD NIH Inpatient -- Bethesda, MD

    0 Comments
  28. 28
    • RebHar
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    RebHar's Avatar

    Palliative care

    Other Care

    NIH has a really good palliative care team. They set me up with my pain medications and with Marinol for appetite improvement. I feel much better overall than I probably would if I hadn't had them on my case.

    0 Comments