PhillieG's Journey with Colorectal (Colon) Cancer

Patient: Colorectal (Colon) Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 13 years ago, Male, Age: 59, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Diagnosed

    Oh No

    I was diagnosed with Stage IV colon cancer when I was 46. I had been going to my Primary Care Physician (PCP) for about 10 years and getting checkups every 12-18 months. He was also an oncologist. I had elevated liver functions that showed up during my yearly physical. He thought it was possibly gallstones so he ordered a sonogram. I went for that in the morning, the technician said I need a CT scan ASAP. I had that done around 1pm that day. At 5 pm my PCP called to tell me I had Stage IV colon cancer. Needless to say, I was floored. I was seeing him for 10 years, he's an oncologist, how could this be missed??? He turned out to be of little help other than giving me the initial DX. He felt there was no hurry at all since I've had it for a number of years, what's a few more months before we operate and start with chemo. I did NOT like his attitude and lack of concern so I got a second opinion over at Sloan Kettering. I wanted the PCP to follow the recommendation of my new Onc at Sloan and he was not happy to do so. He tried to stall for my port installation (I had it done next day with my brother's persistence) and then started the chemo right after that. The PCP didn't like how my brother treated his staff (by telling them to get stuff done - would not take NO for an answer) and the PCP told me to tell my brother not to call again. I then fired my PCP and found a great oncologist in Hackensack NJ who was willing to let my other Onc "drive". He would have done the same protocol as my onc at Sloan. The PCP wanted to operate, then chemo. We did chemo, then operated. I strongly believe that was a major reason why I've done so well.

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  2. 2
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Shortly after getting my second opinion at Sloan and we had a plan of action, I had my port installed at a different hospital. I started chemo right away.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    FOLFOX and Avastin. Avastin just came out on the market 1 month after my chemo started so I did 6 months total with 5 of those months with Avastin. I did not find the side effects to be too bad, I was able to kayak for 81 consecutive days leading up to my surgery in Sept 2004. I did experience fatigue and some nausea. I had the "pump" hooked up to me for the 48 hours after the initial infusion but I would put that inside a ziploc bag so it wouldn't get wet if I flipped over (which never happened). The days when I was very tired or feeling nauseous, it's hard for it to not affect one's daily life but for the most part, I tried to make it a non-issue mainly because my kids were 10 and 4 at the time. If I made it into a big deal it might have made things worse.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Psychotherapist

    Other Care

    Shortly after my diagnosis, I started to see a therapist to help me deal with my cancer. It was one of the best things I've done for myself as far as cancer goes.

    0 Comments
  5. 5
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Colon & liver resection, HAI pump installed, gallbladder removed

    Procedure or Surgery

    I had surgery in Sept 04 where they removed a piece of my colon (no bag), 60% of my liver, my gallbadder, and installation of a hepatic pump. Initially they said it would be a 5-7 maybe 10 day stay. That stay was 16 days. I learned then that the body and cancer does what it wants, when it wants. I gained more patience from that experience. I had trouble with the narcotics that I was given for pain slowing down my bowels. I had to experience the NG tube which they insert through your nose and it goes down into your stomach. It drains the fluids that your body produces since my body wasn't able to get rid of them the normal way. That was one of my worst experiences ever. While on the NG tube I wasn't able to drink fluids at all with the exception of a few small pieces of ice per hour. I craved water but I couldn't have any until my bowels started working properly again. When I got home, the recovery was rough at first but I kept walking/exercising and it helped with the recovery process. I did have a lot of sensitivity on my left side where the hepatic pump was installed. I also had surgical pain that stayed with me for a long time. I was able to do everything for myself so the impact wasn't too great on my daily life.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  6. 6
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Clinical Trial

    I was part of Phase III of a clinical trial that had to do with the effectiveness of the chemo in the HAI pump. I can not recall the name of the trial but I personally felt honored to do it. I didn't think twice about it at all. Possibly if it were Phase I I may have felt differently but my feeling was that if I could help myself and others by participating in this then it would be worth it. Some people feel that they are guinea pigs, I felt like I was a test pilot. it's all how you approach it I think. Same goes for cancer, you can be a victim or you can be a person with cancer. Your choice.

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  7. 7
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    After the surgery I went on This time, FUDR and CPT11 (Irinotecan) and something in the pump, I can't recall exactly what the medication was but it was delivered directly to my liver to help get any other cancer cells that may have been left behind. I was on this protocol for 6 months.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  8. 8
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Bowel obstruction due to scar tissue

    Procedure or Surgery

    I had felt pretty good by November and went back to work after missing about 2 months. Then, 1-2 weeks after I returned I felt in intense pain in my stomach. I thought maybe my pants were too tight so I took a break from work and bought another pair of pants and returned to work. Shortly after that I felt very nauseous and went home. I thought it might pass but it didn't. I wound up spending most of the night throwing up. The next morning at around 6 am I had my wife drive me to the hospital. I tried to get to Sloan since that was where I had my initial surgery but only made it to Hackensack University Hospital. I did have an oncologist there who gave me chemo following the direction of my oncologist at Sloan. I waited there to see if the obstruction would pass and also to see if a bed would open up at Sloan. Neither thing happened so I had the scar tissue removed at Hackensack. The procedure went well but like my other operations, the narcotics that they give me for pain slowed by bowels so I had an NG tube up my nose for about 9-10 days. That was a 12 day stay. I went home, then went back on the previous chemo. Sometime in January 2005 I returned to work

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  9. 9
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Finished the FUDR and CPT11 (Irinotecan). I had some trouble with the oxaliplatin and neuropathy in my hands and feet. I had sensitivity to cold too. It was rough because the winters in NY State can be rather cold. I was able to do all 12 of the treatments though.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  10. 10
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Wedge resection to right lung

    Procedure or Surgery

    Spring, 2006. I had the first of three lung operations for small tumors. They were able to do wedge resections. I also was able to do what's known as "muscle sparing technique". They go in from the side rather than from the back. It's supposed to be less damaging to the muscles. I spent another 10-12 days in the hospital again, mainly due to the slowing of the bowels due to pain medication. I'm quite sure I had the procedure done in my right lung in 2 locations. I had to have the drainage tubes connected for a while. It was rough but I sort of put myself in a trance-like mode and just did what they told me to do (which was to walk a lot) and I got out. I had some trouble with soreness in the area. They had to stretch my ribs apart too plus the surgeon had hands like a baseball mitt!

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  11. 11
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    Went on Erbitux or a combination of Erbitux and Irinotecan for 6 months. Had trouble with the rash from the Erbitux for a while. It ranged from very bad to not so bad. It was hard to deal with in the heat of the summer. I found that swimming helped cool the rash and the chlorine seemed to dry it out too.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  12. 12
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Wedge resection on both lungs

    Procedure or Surgery

    Spring 2007: Resection on both lungs. Again, some trouble with bowels slowing down. I think the stay was 8-10 days. Pretty sure I had NG tube. Felt very sore after surgery. I had not really recovered from the liver resection and the previous lung operation. Again, they used the muscle sparing technique.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  13. 13
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    Back on Erbitux and Irinotecan for 6 months. It helped to keep the tumors small and slow growing but they got to a point where they started to grow more and became operable so back to the knife.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  14. 14
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
    PhillieG's Avatar

    Wedge resection to right lung

    Procedure or Surgery

    Summer 2008: Wedge resection to right lung. The stay wasn't as bad as the other times. I did not have the NG tube and the stay was 6-8 days. Too much scar tissue, they could not do the muscle sparing procedure so they went in through the back.

    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
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
    PhillieG's Avatar

    Targeted therapy

    Drug or Chemo Therapy

    Back on Erbitux and Irinotecan. After doing the Erbitux for so long, the rash has lessened. I do have trouble with stomach cramping from the irinotecan. That would last 3-5 days. I was on an every 2 week schedule for all of this.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  16. 16
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    RFA - Radio Frequency Ablation

    Procedure or Surgery

    I've had the RFA done 3 times. September 2007, December 2009, and August 2010 . The RFA was the easiest thing I've had done. With the first one, I stayed overnight for observation. With the other two I went home that day. I felt a little sore but otherwise it's a piece of cake as they say. I have been only Erbitux for the past10 months or so and going once every three weeks. I had tried a month on and a month off and that didn't work. The tumors grew (hence the RFA) and I also tried a 6 month break (again, an RFA) so now this is like the Goldilocks protocol, it seems to be just right... I have stopped counting but I figure that I've had over 260 treatments since Feb 2004.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  17. 17
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
    PhillieG's Avatar

    Targeted therapy

    Drug or Chemo Therapy

    Been on Erbitux or Erbitux with Irinotecan since April of 2006 I think(?). I'm not positive when I actually started it but it's what I am on between RFAs. It does seem to keep things stable or slow-growing.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  18. 18
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Need another RFA

    Oh No

    It's not really an "Oh No" moment, it's more of an "Oh Poop" moment. This also has been expected to happen. I've had a small node in my right lung that's been slowly growing over the past 1 1/2 years (approx). So with my CT scan results I got this week, my Oncologist suggested that we consider removing this one spot. It's about 2cm in size. My doctor who's done all previous 3 RFAs is on vacation so I have to wait to schedule something but it will happen. I'm not (too) concerned being that I've had 3 of these done before and the last 2 times I went home the same day. Meanwhile, I'm still on chemo every 3 weeks until we get this spot removed.

    0 Comments
  19. 19
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    RFA

    Procedure or Surgery

    So I have a date set for my 4th RFA. It will be on October 17th. It seems like they are yearly procedures at this point of my journey and I am 100% comfortable with this. It's become routine for me and the "plan" is that I will be out the same day barring any problems.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    2 Comments
  20. 20
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    RFA went A-OK

    Celebration

    The RFA went well and I was able to get home the same day. I was concerned that since I had a sort of late start time (12:30) that I might not get out the same day but things went smoothly. I feel a bit sore, as to be expected, but at least I'm a sore winner! Still on chemo, I go back on Nov 2nd for more...

    0 Comments
  21. 21
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    Lymph nodes in lung look inflamed/larger. Quite possibly a problem. Going to go back on Irinotecan & Erbitux every other week until further notice. I have had some bad reactions to Irinotecan where I get stomach cramps that can be real bad. I am waiting until next week to start up with that since I want to enjoy Thanksgiving. I also have one of those Erbitux ulcer growths on my right "Grand Toe" that is causing a lot of pain. I will have to have them cut the nail away on that toe. That's loads of fun too... I just had my second infusion of Irinotecan & Erbitux yesterday. It really knocked my socks off but I do not feel too bad today. I've found if I get up and get out I can do pretty well for a while. I hope I haven't spoken too soon...

    2 Comments
  22. 22
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    about 5 years ago
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    Anniversary

    Celebration

    On Feb 25, 2004 I was diagnosed with Stage IV colon cancer. On Feb 25, 2012 it marked 8 years of my "Living with Cancer". It was a good day..? :-)

    1 Comment
  23. 23
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 4 years ago
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    UPDATE: RFA Successful

    Procedure or Surgery

    RFA was today, it went well, I have a slightly collapsed lung (very, very minor) but things went "excellent" according to my surgeon. I got there at 6:15 am, the procedure was at 8 am, I was discharged at 3 pm, and home by 5 pm. I feel very good!

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    5 Comments
  24. 24
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    about 4 years ago
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    Internal radiation

    Radiation

    I met with a radiologist at Sloan Kettering yesterday to discuss zapping my (hopefully) remaining spot 'o cancer that's known. It's a lymph node near my bronchial tubes. It will be 3x's, a day apart, and about 20 mins each treatment...more to follow as I find out. I'm not planning on NED, Cured, or any of that. What I AM hoping for is a nice long break from chemo. Something along the lines of forever? :-)

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    3 Comments
  25. 25
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 3 years ago
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    Pneumonia

    Side Effects

    It seems that a few months after the radiation I started to develop a cough. At my last CT Scan 2 weeks ago I was told I have pneumonia due to the radiation. It seems this isn't UNcommon but I certainly didn't expect it. The good news is that I'm off chemo at least until the end of Sept when I get my next scan. I'm on an Advir inhaler for the cough/pneumonia and generally feel OK*. * OK is based on my 9 1/2 year adventure! :-)

    0 Comments
  26. 26
    • PhillieG
    • Experience with Colorectal (Colon) Ca...
    over 3 years ago
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    Pulmonary Emboli

    Other Care

    When I was having my 2 month CT scan and the tech noticed I had a pulmonary emboli. I've been on a blood thinner for the past month and it's helping a lot. When we went over the scan we saw that the inflammation that I have in my lung decreased by about 60% so the inhaler is working. Overall I'm feeling OK but I am short of breath still.

    2 Comments