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Thread: Chemo starts Monday

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    Chemo starts Monday

    My husband starts his chemo on Monday. We are getting very worried and anxious. He has been having some nerve issues since his surgery so we are really worried about the neuropathy side effects of the oxaliplatin. They are not doing that one the first round but I think they will after. I know that the neuropathy can be bad and it can even come on years after chemo, does this happen often? Any recommendations or advise?

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    Moderator Top User Doug K's Avatar
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    Quote Originally Posted by worriedwife69 View Post
    My husband starts his chemo on Monday. We are getting very worried and anxious. He has been having some nerve issues since his surgery so we are really worried about the neuropathy side effects of the oxaliplatin. They are not doing that one the first round but I think they will after. I know that the neuropathy can be bad and it can even come on years after chemo, does this happen often? Any recommendations or advise?

    I don't know what to say... since I firmly believe that each person is so different and the reactions to drugs so different. I can describe the best I can my experience. I had chemo and radiation prior to surgery. The surgeon felt sure he got the cancer and the margins were clear. I had no cancer cells detected in the lymph nodes that were removed.

    I believe it was four or five weeks following my surgery that the the first of six rounds of chemo. I was getting 5FU in a bolus at the treatment center, and oxaliplatin, plus some steroids I think. Then sent home with a pump to administer a ml every minute for 46 hours of something? It was ok, but annoying. Sleeping with the pump was a challenge.

    I did have the effects of sensitivity to cold and the neuropathy in the feet. I was nauseated more from this treatment than the pre operative treatment. I never threw up, however, just felt poorly) Not sure why the nausea, preop were pills, this was IV. anyway the neuropathy was the worst in my feet and hands. Now five years later (NED) but my feet are nearly numb... and balance is a challenge. However, I played pickleball this morning for about 90 minutes... so, I am able to get around, but too it can be challenging. Food lost taste... the taste in my mouth was terrible (metalic) , but it seemed to come and go.

    The oncologist gave me anti nausea drugs that I took sparingly, but they did help on the third day or so following the treatment. I had six infusions over 12 weeks. In on Monday, two hours of infusions, pump to take home for 46 hours and then back on Monday two weeks from the treatment.

    Good luck with this treatment. The only thing I think I could have done different was to communicate what was happening more accurately to my oncologist and his nurse. He might have thought to back off the oxaliplatin a bit? Provide some other anti nausea drugs? I don't know.

    I did manage to take an additional week break during the middle of the treatment and went to Disney World with my wife, daughter, her husband and family. I was able to get around and Disney provided a "fast pass" sort of card for me so I didn't have to stand in line for extended times. I could have an urgent need to go.

    Again, during this time my bowels were a mess. I had diarrhea off and on through out, the chemo drugs play havoc with an already out of sorts bowel, not to mention recovering from surgery and radiation prior. I recall taking an Imodium in the morning and if there was any bowel movement, that was loose, taking another Imodium. Some people in my support group take it like it is candy to this day. I still start my day with one along with four Metamucil capsules. It seems to help me have some sense of "control," not much. But I think it the fiber helps to build some bulk or stool.
    However, just when I think I have this thing predictable, it isn't... I think that is what separates bowel cancer from others. You are never really "done" with it. (that's coming from a support group that has people in it who are 15-20 years post treatment.)

    Good luck.
    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
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