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Thread: Stage 1 to Stage 4 Colon Cancer in 12 Months

  1. #21
    Super Moderator Top User Baz10's Avatar
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    I’m sure he has heard all.
    When I was rushed from the ward(apparently) to ICU all I vaguely recall was coming half around seeing a vision of grey with human shapes of dark grey.
    So I remember as I thought silently saying to myself
    “Ohh sh*t this isn’t good) when a male voice replied “no it isn’t good Barry , but you will be OK” as I felt them stick another needle in my upper right arm. Turned out to be a octopus cannula when I came to connected to this contraption and a half face mask pumping oxygen in.

    Ahh said the male nurse, glad you are back with us.
    I didn’t dare ask where I had been in the previous (as I’m told) 30 hours.

    Given your tenacity and upbeat attitude and with the support of your military man, you’ll do just fine.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  2. #22
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    Thanks so much for the encouraging words, Barry!

  3. #23
    Moderator Top User Doug K's Avatar
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    Deb, you have really had a hit! You'll bounce back I am sure, you just have that attitude.

    Don't be afraid to give yourself a bit of slack as you progress... you don't want to set yourself back. Take care and do keep us in the loop and best of luck to you as you progress.....
    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  4. #24
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    Thank you, Doug, for your kind support. Going in to see my surgeon tomorrow morning - have experienced a much deeper pain in the lung area that was resectioned and both ankles swelled like balloons last night and this evening. I don't know if the two issues are connected, but the doc wants to see me ASAP. Hopefully, it's nothing more than being pretty sedentary now vs. being active physically prior to surgery.

  5. #25
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    I have my first chemo infusion tomorrow at 8:45 am - the nurse told me it would take about 5.5 hours and then I will have a pump hooked up for the next 46 hours. Fingers crossed that I don't have a bad reaction to the drugs - my onc prescribed Zofran and told me to take the first dose immediately after the first infusion and to continue taking it every 6 hours for three days. She also prescribed a back-up anti-nausea drug for just in case. My regimen is FOLFIRINOX - the one drug I'm worried most about is the oxaliplatin. I've read in several of the diaries here how awful the cold sensation and neuropathy can be. Later y'all - if I don't feel too bad when I get home, I'll update with results - though, I hear one doesn't generally get sick until the next day.

  6. #26
    Moderator Top User Doug K's Avatar
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    Quote Originally Posted by DebSeg View Post
    I have my first chemo infusion tomorrow at 8:45 am - the nurse told me it would take about 5.5 hours and then I will have a pump hooked up for the next 46 hours. Fingers crossed that I don't have a bad reaction to the drugs - my onc prescribed Zofran and told me to take the first dose immediately after the first infusion and to continue taking it every 6 hours for three days. She also prescribed a back-up anti-nausea drug for just in case. My regimen is FOLFIRINOX - the one drug I'm worried most about is the oxaliplatin. I've read in several of the diaries here how awful the cold sensation and neuropathy can be. Later y'all - if I don't feel too bad when I get home, I'll update with results - though, I hear one doesn't generally get sick until the next day.
    Deb, as I try to recall the events of chemo, the first two or three infusions weren't too bad for me. I lost appetite, and everything has a metalic taste to it, and I was a bit disoriented, things that I once could do easily seemed to require much more attention and brain power that I had available. I had the usual reaction to cold given to oxaliplatin in my hands and too, it lingers in my feet.

    I don't know how many treatments you will have, but the effects accumulated, so it did get some worse as they went along. I had six infusions over 13 weeks with a three week break between #s 3 and 4. It seemed to me that I was very fortunate over all.

    I agree the effects seemed to be worse on the second day after treatment.... good luck to you! Keep posting....

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  7. #27
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    Hi Doug - 'had my first infusion yesterday and was in the "chair" for nearly 9 hours. The oncology nurse could not get blood to appear from my port after the initial push (6.5 hours) and had to have orders issued for a cath flush. Finally, around 5:00 pm the flush worked and she hooked me up to my pump to take home. The hands/feet issue appeared within a couple of hours of receiving the Oxaliplatin, and 5FU in the pump is causing some nausea today (the day after infusion), but the anti-nausea drugs are keeping it really low-level. I will have 12 infusions over 6 months, and the nurse told me future visits will not take as long. From reading a couple of the stickys here and just from my own research, it does appear that the negative effects are cumulative, and sometimes have to be stopped for a short time. I hope I can get through all 12 without having to take a break, as I would sure like to start 2020 on a high note. Thank you for checking in with me!

  8. #28
    Newbie New User
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    Aug 2019
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    I can identify with you. I had colon surgery for Stage 2 colon cancer and got a clear scan. Five months later I was stage 4 with nodes in my lymph system lit up like a Christmas tree. My doctor gave me "the get you house in order" message and said my prognosis was uncertain. I learned later that "uncertain" is not necessarily bad.

    It was hard for about 2 or 3 months because I wanted to figure everything out and know what was likely to happen. i finally realized that cancer is usually something that not even your doctor has figured out. I then adopted the attitude of, "Well. I'll either get well or I won't." Ignoring uncertainty and concentrating on each day helped a lot.

    I got advice on nutrition and cut out the sugar and processed meat. I talked with a doctor trained in nutrition and he recommended supplements to boost my immune system. My nutrition doctor checked my chemo drug list and made sure the supplements wouldn't interfere with my chemo. And most important to me I prayed a lot about it. (and my friends and doctors did, too.) I'm not "preachy" but I can tell you that the spiritual side of life is very strong. I believe I'm still here by the grace of God.

    At the present I've have cancer for 6 years and rather aggressive chemo for over 5 1/2 years. Everyone's case is different. Some of my friends haven't been as blessed as myself and some I know are in remission. I'm thankful to be where I am.

    After 6 years with cancer and presently 3+ hours of chemo every 2 weeks, (I've had 6 different chemo regimens and lost my hair 3 times) I'm thankful that my cancer is being controlled and that I'm able to do a 5k training run with my friends every Monday night. I'm not fast. It takes 40 minutes for me to run 3.1 miles but I feel great afterwards. I don't want you to think i'm Superman or anything. This is considerably less distance than I used to run. But I was able to get in shape last year and do a 35 mile triathlon at a reasonable pace. I was on chemo pills that allowed me to train hard every other week.

    Anyway, I'm not trying to build myself up. I just want you to concentrate on the positives. My cancer might get me one day . . . but NOT TODAY. Today I'm great and living a blessing. As I'm typing this I'm wearing a chemical pump but that will come off tomorrow. And 3 days after that I'll be out running.

    No one is responsible for what they can't do. Concentrate on what you can do.

    May God bless you.

    BTW: I've had Oxaliplatin before and it does produce a lot of side effects in many people, myself included. I started back with Oxaliplatin/Fulfirinox 2 months ago and yes the side effects are there. Hang there. After completing 12 doses of Fulfirinox, my cancer went largely inactive and allowed me to switch to oral chemo for 2 years. I pray that you'll have positive results, too.
    Last edited by BlessedToday; 08-15-2019 at 07:28 PM. Reason: Added Information

  9. #29
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    Thank you, Blessed - I'm not a preachy person either, but I sure do believe in the power of prayer and blessings. I'm just getting over a mouth sore from the 5-FU pump - it was on the inside and out of my bottom lip which made eating a challenge. Currently, I don't have any nodules showing up after having the lung surgery, but my oncologist/hematologist is using an aggressive chemo regime to, as she put it, annihilate any remaining cancer cells. I've come to believe that chemo should be offered to Stage 1 and Stage 2 patients in light of what has occurred with me, and with you. Once I get through all this, I am going to look into advocating for Stage 1 and 2 colon cancer patients.

    Again, thank you so much for sharing your story; these help me considerably!

  10. #30
    Moderator Top User Doug K's Avatar
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    Dec 2014
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    DEB, how is it going? I know you've been at the oncologist routine for awhile.... where are you in treatment and how you handling the heat?

    good luck to you,

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

 

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