campostar & side effects..etc.

krystiesq
krystiesq Member Posts: 240 Member
edited March 2014 in Colorectal Cancer #1
Recap, Mom dx 07 Nov. Stage 4 colon cancer. Surgery, followed by folfox + avastin. Discontinued oxaliplatin after 12 treatment, continuted with 5fu plus avastin. 1st ct scan May, disease stable, nothing new. CEA before surgery over 1000, 189 before start of chemo, got down to 8.9, has been on the rise over past month and a half, 10.1, 11.5, 14.5 and is now 16.2. Had a pet scan last week, no changes in her abdomen. Liver normal, spleen normal, lung possible nodules disappeared, pancreas normal, however, her thyroid lit up and most possible reasons are thyroiditis, thyroid adenoma or carcinoma or metastatic disease. Scan results say most likely adenoma (benign) or carcinoma. We go to the ENT on monday to get more info, probably fine needle aspiration to determine what it is. I'm hoping and praying that it is just adenoma. Her spirits are really low.

Her oncologist started her on folfiri on Monday. She handled folfox + avastin really well. So far she hasn't tolerated folfiri very well. She was feeling well at first, but had a sudden onset of hot flashes and then nausea followed by very urgent diarrhea. My question is what premeds have those of you found to work with folfiri to ward off these side effects.

She receives aloxi and decadron. I've heard mention of sandostatin and another drug that I can't remember. Have any of you tweaked your premeds to alleviate these symptoms? Further, what has been effective?

Thanks to all of you.

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    #2
    FOLFIRI
    Kristi, I am praying for your mother on her new routine and that the thyroid is nothing to be concerned about. I did FOLFIRI and tolerated much better than the FOLFOX. Yes, the diarrhea can get pretty bad, but the Sandostatin really took care of that for me. The rumblings that start during infusion are managed with a shot of Atropine. Immodium and Lomotil off and on once the diarrhea gets going as well. Lots of fluids and if she doesn't get it under control for over a day, have her go in for fluids. For nausea, the Aloxi IV just didn't cut it for me. I did the Emend and Decadron combo and never had to add anything for nausea between treatments. The decadron will help her appetite and keep her from losing too much weight.
    Mary
  • krystiesq
    krystiesq Member Posts: 240 Member
    #3
    msccolon said:

    FOLFIRI
    Kristi, I am praying for your mother on her new routine and that the thyroid is nothing to be concerned about. I did FOLFIRI and tolerated much better than the FOLFOX. Yes, the diarrhea can get pretty bad, but the Sandostatin really took care of that for me. The rumblings that start during infusion are managed with a shot of Atropine. Immodium and Lomotil off and on once the diarrhea gets going as well. Lots of fluids and if she doesn't get it under control for over a day, have her go in for fluids. For nausea, the Aloxi IV just didn't cut it for me. I did the Emend and Decadron combo and never had to add anything for nausea between treatments. The decadron will help her appetite and keep her from losing too much weight.
    Mary

    as always
    Mary, you are awesome. If you were near me I'd take you out for lunch. You seem like just an awesome person. There you are basking in the birth of your first grand child and you are taking time to answer my pleas for advice. It's people like you who make me keep going. I've also taken this support thing to another level inspired by this great group of people. I happen to have a gorgeous intelligent mutt who I am going to try and get certified to be a therapy dog so I can visit more cancer centers an help lift spirits.

    I am going to print your response so I can suggest these premeds. I've already gotten my early hearing moved tomorrow so I can take her to get fluids if she is too dehydrated tomorrow am.

    Thank you for your comments, prayers and support.
  • changing2
    changing2 Member Posts: 118
    #4
    Better than Fulfox
    Hi, Guess Mary and I have a bit in common as Fulfox was a real challange..one I won't repeat! Fulfori is 100x's better! I did Decadron (20mg not the usual 5 or 10mg), Atropine, Aloxi and Emend. Once in awhile I take phenagren for nausea. Yucky gas after 5 or 6 treatments but at 10 now!Hope this helps!
  • msccolon
    msccolon Member Posts: 1,917 Member
    #5
    krystiesq said:

    as always
    Mary, you are awesome. If you were near me I'd take you out for lunch. You seem like just an awesome person. There you are basking in the birth of your first grand child and you are taking time to answer my pleas for advice. It's people like you who make me keep going. I've also taken this support thing to another level inspired by this great group of people. I happen to have a gorgeous intelligent mutt who I am going to try and get certified to be a therapy dog so I can visit more cancer centers an help lift spirits.

    I am going to print your response so I can suggest these premeds. I've already gotten my early hearing moved tomorrow so I can take her to get fluids if she is too dehydrated tomorrow am.

    Thank you for your comments, prayers and support.

    You are awfully sweet to say so!
    But really, for the few days I WASN'T on because of Laci's birth, I felt out of sorts and took a while to get caught up! Good luck with your mother's treatments.
    Mary
  • Madre
    Madre Member Posts: 123
    #6
    For nausea I have emend and
    For nausea I have emend and decodron but also compozine and adavan which also helps with anxiety. I know i don't get enough fluids and that makes the nausea worse but a friend told me during her treatment she drank country time lemonade and I tried it and i have to say I can drink it all day although now I have reflux so I need to watch the acid. I can't tolerate plain water anymore but even koolaid is going down good, but the sugar might not be a good thing. Your mom is so lucky to have you.
  • krystiesq
    krystiesq Member Posts: 240 Member
    #7
    Madre said:

    For nausea I have emend and
    For nausea I have emend and decodron but also compozine and adavan which also helps with anxiety. I know i don't get enough fluids and that makes the nausea worse but a friend told me during her treatment she drank country time lemonade and I tried it and i have to say I can drink it all day although now I have reflux so I need to watch the acid. I can't tolerate plain water anymore but even koolaid is going down good, but the sugar might not be a good thing. Your mom is so lucky to have you.

    country time lemonade
    CAN I JUST SAY....THAT IS ALL MY MOM DRINKS!!!! It has been for a while. When she was in the hospital unable to drink anything, she asked for it. I went to every vending machine in the hospital, no luck. I had to leave the hospital and go down the road to two different gas stations to get her the lemonade. I wonder why her body craves it.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #8
    krystiesq said:

    country time lemonade
    CAN I JUST SAY....THAT IS ALL MY MOM DRINKS!!!! It has been for a while. When she was in the hospital unable to drink anything, she asked for it. I went to every vending machine in the hospital, no luck. I had to leave the hospital and go down the road to two different gas stations to get her the lemonade. I wonder why her body craves it.

    country time lemonade
    And did you mention to everyone who would stop for more than a minute about not being able to find the lemonade in the vending machines? Might encourage them to stock it for future patients! I am sure it's the same reason all onc offices have those lemon hard candies... the tart cuts the metallic medicine taste and encourages production of saliva.
    Mary
  • kimby
    kimby Member Posts: 797
    #9
    Madre said:

    For nausea I have emend and
    For nausea I have emend and decodron but also compozine and adavan which also helps with anxiety. I know i don't get enough fluids and that makes the nausea worse but a friend told me during her treatment she drank country time lemonade and I tried it and i have to say I can drink it all day although now I have reflux so I need to watch the acid. I can't tolerate plain water anymore but even koolaid is going down good, but the sugar might not be a good thing. Your mom is so lucky to have you.

    lemonade
    Yep, I have acid reflux too so the lemonade is a problem. Then I developed mouth sores, again, no lemonade. What I found was the G2 lemon/lime flavor. It's the lower sugar version of Gaterade. It goes down well, doesn't taste like monkey butt and without any carbonation and low sugar, isn't so bad for me (still chemicals, though). HTH

    Kimby

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