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

  1. #31
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    Quote Originally Posted by Doug K View Post
    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
    Hi Doug - boy, the heat is oppressive, but it sure helps the neuropathy in my hands and feet! I had my second infusion on Monday and pump removed Wednesday. Only mild nausea so far after both treatments, but I experienced oral and nasal mucositis both times - it is a very painful side effect. Also, the neuropathy seems to be lasting longer this time, which makes it difficult to do a number of things, including typing. All that said, I'm working hard to keep the reason for treatment and suffering is for a cure/NED.

    My friends and family have been really sweet about checking on me after each session, but I think I will ask them to wait to call/come by until the beginning of the week after chemo, as I'm not very good company the days following the infusion. Geez, I sound so negative, but I'm really not feeling that way - it's just tiring, ya know?

    Thanks for checking on me - I hope I can get through 10 more of these sessions and become a resource for others here on the Forum.

  2. #32
    Moderator Top User Doug K's Avatar
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    Quote Originally Posted by DebSeg View Post
    Hi Doug - boy, the heat is oppressive, but it sure helps the neuropathy in my hands and feet! I had my second infusion on Monday and pump removed Wednesday. Only mild nausea so far after both treatments, but I experienced oral and nasal mucositis both times - it is a very painful side effect. Also, the neuropathy seems to be lasting longer this time, which makes it difficult to do a number of things, including typing. All that said, I'm working hard to keep the reason for treatment and suffering is for a cure/NED.

    My friends and family have been really sweet about checking on me after each session, but I think I will ask them to wait to call/come by until the beginning of the week after chemo, as I'm not very good company the days following the infusion. Geez, I sound so negative, but I'm really not feeling that way - it's just tiring, ya know?

    Thanks for checking on me - I hope I can get through 10 more of these sessions and become a resource for others here on the Forum.

    Deb,

    I understand the feelings following infusions.... very much how I felt. I also recall not doing too much. I was a morning walker at a local mall during this time. The mall was good, air conditioned, bathrooms were tolerable and I knew where they all were located. Too, they opened at 9am for walkers, 10 am for customers..... I did what I could, maybe 30-40 minutes.

    I found that my mental state wasn't very good... tired most of the time. I recall saying to my wife, "I am so tired of not feeling well, for so long!" And that description is pretty accurate as I recall not all that "sick," just not feeling well. Too, the fourth and fifth infusion (out of six for me) were the most difficult. The effects seemed to compound. I wish I had been more specific about my symptoms as I was moving along and shared more with my oncologist, I think they might have spared me some of the oxaliplatin and thus, maybe lessened my long term neuropathy? I don't know that for sure, maybe just wishful thinking on my part.

    Another thing I wrote about in my "notes to me" about this time was, I would rally... if someone came by I would be "up" and have a good (or at least I thought it was good) conversation with them. Then when they left, I would sort of crash.... cause what it felt like to me was I had been drained of energy. It would take the rest of the day to recover. It was similar, too, for phone calls, i could and would rally and hang in for the conversation, talk, then as hung up.... drained. But the experience was more positive than negative, so I was thankful for the contact. It also helped me see that I could 'rally,' if and when necessary.

    I tell you this to suggest that it can/does get better. I continue to mall walk and have returned to playing pickleball a couple of times each week. I hope this is helpful. My note keeping was very helpful for me to look back especially two or three months later and even more so a year, two or now six years later.... it gets better... you'll get through it and you are already a resource for others here, like you (most likely) and, for sure, like me, I read here a long time before I posted and there are lots of others who are doing so and have benefited from reading your posts.

    keep on coming back.

    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

  3. #33
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    Hi Y'all - it's been a while since I checked in and I did so tonight to ask a question about chemo.

    When I arrived at the cancer center for my third treatment, my oncologist informed me that I would not be receiving chemo that day due to my white blood cell count being extremely low (caused by the chemo, doh!) and she prescribed Nivestym injections for me. I injected myself two days in a row and arrived again at Texas Oncology last Wednesday to have my third treatment. My labs were great so the injections are working and I received the third infusion; aside from the expected side effects from #3, I developed a really bloody nose. My question, if any of you might know, is the bloody nose a side effect from the chemo or from the Nivestym? I ask because after the second infusion, I did have a bloody nose for a couple of days, but this time, it has lasted for 8 days and counting. I'm not talking about just a small amount when blowing my nose - it's a lot and involves blood clots. I mentioned it to the NP, but she seemed surprised by it (I only see my onc every other treatment). Wondering if any of you experienced this and did it clear up on it's own?

  4. #34
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    I'm guessing no one has had the bloody nose for weeks on end. Finally got to talk to my MO today and she said the bloody nose is most likely from the 5FU - all the mucous membranes get dried out and will often crack, resulting in a bloody nose.

    Aside from the nose issues and the WBC drama, I also nearly flat-lined on Potassium - I went for my 4th infusion this morning and my MO immediately ordered a Potassium drip in addition to the chemo drugs, which took 5 hours. I was feeling pretty lucky that I have had only very mild nausea so far, but these low counts are concerning me in that my body is not "snapping" back during the two-week lull between infusions. I'm not that old and I don't smoke and don't drink. I'm worried about future infusions and what else will be low that delays treatment by another week. I was hoping to have all of the infusions done by the end of December, as January 1 starts a new health insurance cycle with the $3,500 out of pocket. Sigh, nothing ever comes very easily to me.

    I hope all of you are doing great and enjoying some cooler weather. Here in South Texas we only had a high of 96 today.

    Deb
    Last edited by DebSeg; 10-03-2019 at 02:22 AM. Reason: Typos

  5. #35
    Moderator Top User Fourlegsgood's Avatar
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    That is interesting information about the bloody nose.

    When I had to have a short holiday from my chemo because of high liver enzymes I was surprised to learn that they are often short term issues and just because you have an issue it doesn’t always mean that you will continue with the same issue. It was explained to me that somehow it it is almost as if the body learns to cope with the chemo.

    Good luck with the rest of yours. Here in the uk we are well and truly into wet and cooler autumn weather.
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  6. #36
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    This is encouraging information, FourLegs, thank you for sharing it with me. I hope my body gets with it soon and learns quickly!

    I envy your cooler and wet weather, it is still hot and very dry here, and grass fires are seen almost daily.

  7. #37
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    A quiet drumroll, please - I made it to the halfway point with my chemo regimen today!

    Neuropathy still gives me fits, but the Gabapentin does take a good edge off of it. I've only had two infusions where everything went well - the other 4 (including today), I had issues with low WBC counts and/or terribly low potassium, where I have to receive a 5-hour IV drip of potassium - <groan>. Still, all things considered, I'm holding up pretty darn good and I am grateful for that!

  8. #38
    Moderator Top User Fourlegsgood's Avatar
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    Good news, I also thought the half way point was a significant achievement. Well done.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  9. #39
    Moderator Top User Doug K's Avatar
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    This sounds like good progress. Hope you continue to make these strides. I believe I am a stage I or II patient... into the wall of the rectum, but not apparent in the surrounding lymph system. Anyway, I did a post surgical infusion of oxi and 5fu for six sittings over 12 weeks. So far so good. My oncologist seemed to think it was an insurance policy of sorts, should there be any errant cancer cells running about.

    Keep the faith and moving on up.....

    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

  10. #40
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    Many thanks, Nick and Doug! My MO wants me to do maintenance chemo after finishing this killer chemo - it would entail having a 5-FU pump attached to my port very 3 weeks - she is doing this as a "belt and suspenders" approach to ensure any remaining cancer cells are annihilated. I can handle that especially since there would not be anymore Oxaliplatin - that stuff has so many side effects. The neuropathy bu itself is awful - right now I have trouble typing as the neuropathy is causing my hands to spasm.

    It's finally cooler in South Texas - last night and tonight we had/will have mild freezes. It was 31 degrees at 6 this morning! I love the change but it sure plays havoc on my sensitivity to cold.

 

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