GolfGirl's Journey:

  1. 1 Oh No Icon Oh No
  2. 2 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  3. 3 Side Effects Icon Side Effects
  4. 4 Side Effects Icon Side Effects
  5. 5 Side Effects Icon Side Effects
  6. 6 Celebration Icon Celebration
  7. 7 Celebration Icon Celebration
  8. 8 Radiation Icon Radiation
  9. 9 Celebration Icon Celebration
  10. 10 Procedure or Surgery Icon Procedure or Surgery
  11. 11 Drug or Chemo Therapy Icon Drug or Chemo Therapy
    ???
  12. 12 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  13. 13 Procedure or Surgery Icon Procedure or Surgery
  14. 14 Procedure or Surgery Icon Procedure or Surgery
  15. 15 Side Effects Icon Side Effects
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  17. 17 Oh No Icon Oh No
  18. 18 Side Effects Icon Side Effects
  19. 19 Oh No Icon Oh No
  20. 20 Drug or Chemo Therapy Icon Drug or Chemo Therapy
    ???
  21. 21 Side Effects Icon Side Effects
  22. 22 Side Effects Icon Side Effects
  23. 23 Side Effects Icon Side Effects
  24. 24 Side Effects Icon Side Effects
  25. 25 Side Effects Icon Side Effects
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  27. 27 Side Effects Icon Side Effects
  28. 28 Side Effects Icon Side Effects
  29. 29 Celebration Icon Celebration
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  31. 31 Side Effects Icon Side Effects
  32. 32 Side Effects Icon Side Effects
  33. 33 Celebration Icon Celebration
  34. 34 Celebration Icon Celebration
    ???
  35. 35 Side Effects Icon Side Effects
  36. 36 Oh No Icon Oh No
  37. 37 Side Effects Icon Side Effects
  38. 38 Side Effects Icon Side Effects
  39. 39 Side Effects Icon Side Effects
  40. 40 Celebration Icon Celebration

Patient: Colorectal (Colon) Cancer > Adenocarcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 4 years ago, Female, Age: 50, KRAS mutation positive: No, BRAF mutation positive: No, Stage Recurrent

  1. 1
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Diagnosed

    Oh No

    I'd been having pain in my rectum since August of this year (2012), finally went to see my doctor in September. We thought that it may have been internal hemorrhoids. She suggested I see a gastroenterologist, I put off the appointment until November 15th. During the sigmoidoscopy the doctor discovered the mass, she took the biopsy and told me she was fairly certain it was cancer. I received a call on the 19th confirming the diagnosis. Since then, I've seen a general surgeon, had a CAT scan that revealed lesions on my liver. I have 4 appointments next week - Radiology Oncologist, Rectal Surgery Specialist, Oncologist and a PET scan. I'm told the next step is radiation and chemo followed by surgery. This is a bit overwhelming, but I am very optimistic and keeping my chin up. Other than the pain in my XXX - I feel great!

    0 Comments
  2. 2
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I started chemo on Dec. 13th, FOLFOX + 5-FU pump for 48 hours. I became very constipated then next day - so much that I threw up, very bad day. After I got over that, the diarreha started. Other than that, and the pain from my PICC line, it's been a breeze - I have tons of energy and feel great. I did have my PICC line removed 2 days ago, the pain in my arm was not going away and getting worse. When the nurse removed the line she said it looked like a line that had been in for months not days. My body was defintely rejecting it. So, today I started on oral chemo - 1500 mg. of Xeloda twice daily (Monday-Friday) for the next 2 weeks. I see the doc on the 3rd week to see how I'm tolerating the treatment. Hope my arm is good enough so I can play golf on X-mas day. Merry Christmas everyone and God Bless!

    Easy to Do: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    3 Comments
  3. 3
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Skin changes

    Side Effects

    My skin is so dry - I can't put enough lotion on. I've also developed acne-like sores on my forehead and scalp - very painful. If this is the worst thing that happens - no big deal.

    0 Comments
  4. 4
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Pain

    Side Effects

    The last couple of mornings I've woke up feeling like I've been hit by a truck - after I start moving around I feel better. Had the weekend off of Xeloda - back on this morning, this week on then next week off.

    1 Comment
  5. 5
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Hot flashes

    Side Effects

    Looks like I may have chemo induced menopause. My last period was the day before my 1st round of chemo (Dec. 12). I'm about 2 weeks late and the hot flashes and night sweats have started. Just wondered if anyone has experience with this.

    2 Comments
  6. 6
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 4 years ago
    GolfGirl's Avatar

    Finished treatment

    Celebration

    Last round of chemo yesterday! Feeling pretty good - side effects a bit worse, but I usually feel much better after the 48 hour mark. Getting ready for radiation.

    0 Comments
  7. 7
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 4 years ago
    GolfGirl's Avatar

    Cancer is shrinking

    Celebration

    Had a CT scan in preparation for radiation - tumor has been reduced in half! At time of diagnosis tumor was just under 4cm - it's now 1.5cm!!!! I still have a long way to go, but I'm feeling great. Radiation starts on Monday.

    1 Comment
  8. 8
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 4 years ago
    GolfGirl's Avatar

    External radiation

    Radiation

    I finished 26 out of 28 treatments. The first 3 weeks were fine. The last 2 weeks were a nightmare; diarrhea, massive rectal bleeding, hemorrhoids & pain like I've never experienced. It took about a week after the last treatment before I could have a BM without screaming & crying. After 2 trips to the ER to control the pain, my radiologist prescribed Lidocaine to numb the area - what a relief - I'm not sure what took him so long? I finally feel like I can leave the house & my appetite is back. I lost more weight with radiation than I did with chemo - I'm down 18 lbs. the goal is to get as much weight back on before surgery - approx 6 weeks from now. The radiation did work - my tumor has shrunk to nothing!

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 4 years ago
    GolfGirl's Avatar

    Cancer is shrinking

    Celebration

    After 4 months of chemo & 26 radiation treatments my rectal tumor (6cm) has been reduced to scar tissue. The 2 lesions on my liver have shrunk to nearly nothing. Very pleased with my response to treatment!

    2 Comments
  10. 10
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 4 years ago
    GolfGirl's Avatar

    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    On June 5th I had the APR + V-RAM. Also had part of my liver removed and they took my gallbladder while they were there. The first few days were a bit rough - I was uncomfortable & wasn't responding well to the pain killers. The stoma began to work and I was sent home on the 12th. I was thrilled to be home and was feeling stronger everyday. The doctor told me to eat without restrictions (I think a bit premature). On the 16th, my abdominal pain worsened and I became very nauseous. Around 3am I started vomiting and we were off to the ER. The CT scan revealed an obstruction - I was readmitted. I was put on fluids and clear liquids and finally had results on the 18th. Sent home on the 19th (2weeks post-op) - I'm watching my diet; protein shakes, yogurt, etc and so far so good. Getting used to the colostomy and can't wait until I'm fully recovered - I have a lot of living left to do!

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    1 Comment
  11. 11
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 4 years ago
    GolfGirl's Avatar

    Drug or Chemo Therapy

    Started chemo again two weeks ago. Looking at 12 rounds this time. I was nauseous for a week after my first treatment. Last time I was hardly ill. Doc thinks its due to the radiation. Sometimes I wish I'd never had radiation - it's the gift the keeps on giving. I have my second round tomorrow and I have a feeling I'll do better. PS - I hate wearing the pump too. I sound cranky but I'm not - only 5 months of treatment to go - definite light at the end of the tunnel.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  12. 12
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 4 years ago
    GolfGirl's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I'm scared. The chemo is making me pretty sick. I was on my way into the Infusion Center to have my pump disconnected - I passed my doctor in the hallway, he saw me limping and insisted on seeing me in his office. The neuropathy is getting worse, I've also been having an allergic reaction during the infusion and get violently ill on day 2. My doctor is reducing my next dose of oxi by 20% and he said if that doesn't help, he'd have to stop the chemo. I've only completed 3 of 12. 1 of 14 nodes tested positive for metastatic carcinoma - I am willing to tough it out, by day 5 or 6 I am able to function. Any advice?

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  13. 13
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Had port installed before re-start of chemo - it's been 2 months & it's still sore sometimes

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    1 Comment
  14. 14
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Colostomy

    Procedure or Surgery

    I've had my ups and downs with recovery from the initial surgery - it's been 3 months post-op and was getting used to my new set-up but 2 days ago my stoma decided to invert - what a nightmare.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  15. 15
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Blood sugar, high (diabetes)

    Side Effects

    I wear an insulin pump and ever since I re-started chemo my infusion site becomes painful & infected - off to see my endocronologist next week.

    1 Comment
  16. 16
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Bladder problems

    Side Effects

    Nighttime incontinence brought on by radiation/surgery/chemo. Receiving physical therapy to strengthen pelvic floor. After 4 weeks of pt getting much better!

    3 Comments
  17. 17
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Incision is bleeding

    Oh No

    It's been 7 months since my surgery and my perennial incision is oozing & bleeding. I had a difficult time with one small spot that took about 4 months to heal. I was given the ok to bathe & swim over 3 months ago. I'm experiencing more pain than usual, low grade fever & have been feeling flu-like since Thursday. I e-mailed my surgeon & should hear from her in the morning. Anyone have a similar experience? I'm a little worried.

    2 Comments
  18. 18
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Pain

    Side Effects

    Experiencing post-chemo joint pain. The pain initially started in my hips and radiated down both legs. Now the pain is in my fingers to my elbows. My hands are very weak & it hurts to make a fist. My onc says it's due to chemo & chemopause. Also, the small amount of decadron I received during chemo kept the joint pain at bay. He said the timing was about normal, pain started 3 weeks after last infusion. When chemo wears off I should feel better - onc says 3 months. Motrin worked well for the first week. Evenings and mornings are the worst. I feel swollen all over. I see my PCP on Wednesday, hoping she can recommend something that can reduce the pain & inflammation.

    1 Comment
  19. 19
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 3 years ago
    GolfGirl's Avatar

    Cancer has spread/Metastasized

    Oh No

    Got the results of my CT scan - recurrence to liver and new mets to both lungs. Still in a state of shock, but staying positive. I will starting a 4 week cycle CPT-11 (Irontecan) + Avastin on the 4th week. I am so glad to have WhatNext to turn to.

    5 Comments
  20. 20
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Drug or Chemo Therapy

    Started Irontecan, Avastin + 5-FU. I don't wear the pump this time. The 5-FU is just a push thru the port. I didn't feel well last night, but I am doing fine today.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    1 Comment
  21. 21
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Diarrhea

    Side Effects

    Doctor was right, when I asked what to expect on Folfiri - he said one word, diarrhea. I was given an anti-diarrheal with my infusion, it caused constipation for the first 36 hours. After that, within a few hours of eating the cramps start and the diarrhea begins. Took Imodium, became constipated, stopped Imodium, diarrhea started again. I have my second infusion tomorrow, hope to break the cycle of constipation, diarrhea, constipation....

    2 Comments
  22. 22
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    First time my WBC has been too low to have treatment. I was unable to get Folfiri, but able to have the Avastin. Oncologist is adjusting the dose for the next cycle, hoping that I'll be able to complete all 4 treatments. I have 3 weeks off until the next cycle begins! Other than a few aches & pains, I feel great!

    0 Comments
  23. 23
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Shortness of breath

    Side Effects

    I've been feeling short of breath for about 2 weeks, nothing horrible. Friday I started my 2nd cycle of Folfiri. The nurse took my vitals prior & mentioned that my heart rate was a bit low - 43. I mention the shortness of breath but I didn't think it was anything to worry about. I finished my treatment & the nurse re-checked my heart rate, it was up to 53, she said if it hadn't gone up she wouldn't have let me go home. Once home, I started experiencing chest pain. My PCP was able to see me, she suggested an ambulance ride to emergency. She thought that it might be a clot in the lung. Long story short, tests were all negative, heart rate was still low but blood pressure was normal and I was sent home yesterday. Still feel awful & not sure what to do.

    0 Comments
  24. 24
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Bleeding

    Side Effects

    Bloody nose yesterday and today, XXX Avastin. Had treatment yesterday, felt crummy, but today I feel pretty good. Met my niece in Hollywood today for lunch - such a beautiful day!

    5 Comments
  25. 25
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Hair loss (alopecia)

    Side Effects

    Just noticed that I have almost no hair on my arms & I haven't had to shave my legs or pits for a while. I haven't notice any change to the hair on my head. I am not complaining!

    2 Comments
  26. 26
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 3 years ago
    GolfGirl's Avatar

    Fatigue (tiredness)

    Side Effects

    I have been extremely tired, anytime I push myself I pay for it for days. I played golf on Monday & went to the gym yesterday. Today I'm dragging & can't keep my eyes open.

    1 Comment
  27. 27
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 3 years ago
    GolfGirl's Avatar

    Nausea/Vomiting

    Side Effects

    This is a follow-up to my post regarding steroids. My oncologist agreed to reduce my dose of Decadron from 12 mgs to 8 mgs last week. That little reduction made a huge difference in my blood sugars, very manageable for a change. BUT, I haven't been this nauseous since my very first round of chemo. It was so bad, the pharmacist called in a new Rx & more Decadron. I felt better almost immediately. I see my onc on Friday, I'm going to get the big - I told you so. It was worth a try.

    0 Comments
  28. 28
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 3 years ago
    GolfGirl's Avatar

    Diarrhea

    Side Effects

    I had a CT scan yesterday. Today, horrible cramps & diarrhea. I'm thinking it's the contrast AND the chemo. I'm sure this to will pass. I see the doc on the 20th for results. I have a very good feeling!

    1 Comment
  29. 29
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 3 years ago
    GolfGirl's Avatar

    Cancer is shrinking

    Celebration

    We received the results of the CT scan yesterday. There is no sign of the liver lesion - its disappeared! We're not sure about the nodules to the lungs - the lungs were scanned when I was in the ER in April. My next scan in September will include chest and pelvis - hoping for a complete response to the nodules as well.

    2 Comments
  30. 30
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 3 years ago
    GolfGirl's Avatar

    Nausea/Vomiting

    Side Effects

    I am experiencing Preemptive Nausea. I feel like I'm going crazy. It all starts the morning of chemo, I take a Zyrtec as I leave the house and that seems to be my trigger. I become nauseous almost immediately and it gets worse when I step in the chemo room - I cant stand the smell in there. I know the source, its the dressing they use - I now use a hypo-allergenic dressing, but the others around me don't. The last 2 weeks I've worn a surgical mask and that helps - I'm thinking I may need hypnosis. I'm going to try Ativan prior to the allergy pill and see if that works?

    1 Comment
  31. 31
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 3 years ago
    GolfGirl's Avatar

    Hightened sense of smell

    Side Effects

    Ever since starting on Folfiri + Avastin I have an ever heightened sense of smell. I pick up smells that others don't and I pick up smells from great distance - Steve jokes that I could work for the Police Department and replace a few of their dogs.

    0 Comments
  32. 32
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 2 years ago
    GolfGirl's Avatar

    Pain

    Side Effects

    I've been struggling lately with severe pain, all over pain from head to toe. The pain is in the joints and muscles. No matter what I do, the pain is constant & getting worse and worse. I've tried rest, that didn't work. Norco used to work - now it barely dulls the pain. I'm also experiencing muscle weakness, I actually fell yesterday trying to climb a big step. I just didn't have the strength - my left hand broke the fall and my wrist is very tender today. I'm unable to sit for more than 1/2 hour at a time, the pain is unbearable. I'm very frustrated - I went from an athletic active person to an overweight weakling. I've gained 40 lbs over the last year despite efforts to eat right & exercise. I see my oncologist on Friday, hopefully he'll have some answers. I'm afraid he's going to just prescribe stronger pain meds. Any suggestions would be appreciated.

    4 Comments
  33. 33
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 2 years ago
    GolfGirl's Avatar

    Cancer is shrinking

    Celebration

    It's a small victory, but nonetheless a victory. My latest scan showed a reduction in one of the lung nodules and no growth in the others. Liver is still clear - I'll take whatever good news I can get.

    10 Comments
  34. 34
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 2 years ago
    GolfGirl's Avatar

    Celebration

    I saw my oncologist on Friday, got the results of my CT scan - stable. No shrinkage, but no new growth. I was up the night before tossing and turning, I was a wreck. I don't know why - its not like its my first scan, I am usually very positive, but this time I was thinking the worst. I was very emotional, then I stepped on the scale, up another 5 lbs. and then I lost it - I couldn't stop crying. Maybe I just needed a good cry? Thankfully I'm over it now and back to my normal self. My fiancée was great - he reaffirmed that stable was good news. I was supposed to have chemo that day - my wbc's were low and my doc gave me the day off - I'll start back up the day after Thanksgiving and finish my cycle on Dec. 19th which means I'll have X-mas and New Year's off during my break!

    1 Comment
  35. 35
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    over 2 years ago
    GolfGirl's Avatar

    Insomnia/sleep issues

    Side Effects

    I've been feeling extra crummy lately. My fiancé mentioned that I probably just needed a good nights sleep. When I really thought about it, he was right. I have a hard time going and staying asleep. I took an over the counter sleep aid last night and feel better than I have in a long time. This has been going on for so long, I can't believe I didn't recognize it.

    1 Comment
  36. 36
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 2 years ago
    GolfGirl's Avatar

    Cancer has spread/Metastasized

    Oh No

    Received the results of my latest CT. Showed an increase in the existing lung nodules and exposed many tiny nodules that hadn't been seen on last scan in November. My doctor said it is quite normal or what he might expect. I will continue with the same treatment - CPT-11. Next line of treatment, hopefully well down the road, will be Erbitux. I'm little bummed out - I've been stable for a year & was hoping that would continue. I'm certainly not giving up the fight - I've got too much to live for!

    7 Comments
  37. 37
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    about 2 years ago
    GolfGirl's Avatar

    High blood pressure (hypertension)

    Side Effects

    I had been blessed with perfect blood pressure, but since being on Avastin that has all changed. My doc recently prescribed meds - one more pill to take.

    1 Comment
  38. 38
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 2 years ago
    GolfGirl's Avatar

    Allergic reaction

    Side Effects

    Nurse believes I had an allergic reaction to the Decadron. My face is extremely flushed - looks like I have a bad sunburn. Feeling a little better today, getting my appetite back.

    1 Comment
  39. 39
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    almost 2 years ago
    GolfGirl's Avatar

    Kidney damage

    Side Effects

    My last urine test contained a lot of protein. Doc ordered 24 hour urine collection test - that too showed excessive protein output. Results came in Friday night, assuming I'll hear from my doc Monday morning. Has me worried. For almost 3 years all blood/urine tests have been normal. Not sure if this is from chemo or type 1 diabetes or combination of both.

    1 Comment
  40. 40
    • GolfGirl
    • Experience with Adenocarcinoma, Color...
    9 months ago
    GolfGirl's Avatar

    Cancer is shrinking

    Celebration

    I switched to Erbitux + Xeloda in May, had my first scan last week. Significant shrinkage to all 9 lung mets & no fluid in the lungs! I'm beyond thrilled.

    10 Comments