sorta bad news...need information

pjenks57
pjenks57 Member Posts: 112
edited March 2014 in Colorectal Cancer #1
It has been a while since writing here. I have read almost daily but, our life was going great until yesterday's dr. visit. Hubby is stage IV and was doing fine on a low dose Xeloda. Then, within the past 2 months his CEA drifted up to 6.4. Originally, according to dr, CEA was 634?!?!?! anyway the Xeloda has obviously stopped working:( Next week hubby begins CPT-11 at dr. office and they will then hook him to a fanny pack with 5FU which will run for 48 hours. Home health will remove it and in 2 weeks he does the same again for 6 treatments. Then, we do CAT scan and see where we are. The only thing that I am afraid of, and what hubby fears, is the side effects. He did Xeloda and oxilaplatin (sp?) before and that put him down- hard! Hubby says if they are sending a home health nurse to the house to unhook him that the effects must be horrible. I told him he was going to make himself sicker by worrying, but that is the way he is. A real worry wart. Please remind me of the side effects (I know that they are different for everyone). Also please tell me the actual name of CPT-11 so that I can research it.
Thank you and may God bless each and everyone of you and the opportunity to be here where I can vent, learn and share.

Comments

  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #2
    hi "pj"..

    The name for CPT-11 is Camptosar. I took that, along with 5 FU and leucovorin. If you go onto www.patient.cancerconsultants.com, you can find wonderful information regarding drugs, side effects, and an array of other information. Best of luck through this minor setback.

    Stacy
  • scouty
    scouty Member Posts: 1,965 Member
    #3
    PJ,

    I take other chemo drugs with the 5FU 46 hour drip, so I won't go into my side effects. BUT, I really like the home nurse who comes to "unhook" me. I learn as much from her as I do the oncology nurses (even more on some things). The 46 hour drip requires a pump and other supplies. The nurse tracks that for you as well as doing all the nursing kinds of things (remove the needle, take care of disposing of the really nasty things that can't go in the trash can, taking temp and blood pressure, answers questions, and has 800 numbers for all kinds of 24 hour support). I consider her an integral part of treatment team, since I can ask her things I may have forgotten to ask 2 days earlier. It saves you a trip back to the chemo room too!!!! It isn't nasty at all!!!! I am always so glad to get the "fanny pack" off, I welcome her visits.

    Lisa P.
  • Btrcup
    Btrcup Member Posts: 286
    #4
    Hi PJ, sorry to hear about your hubby's dr. visit. My hubby was dx Stage IV in February and was "no evidence of disease" in July. He has been on Oxiliaplatin, Leukovorin, Avastin at onc office, and 5FU fanny pack which a nurse came to house to hook and unhook. The effects are not horrible (for my hubby anyway). His side effects were no different from when he was getting 5FU at onc's office. I think they started this at home when they added the Avastin to the mix. Hubby will finish chemo in October (yea!!), then more scans.

    You and hubby will be in our prayers.

    Linda (Baltimore)
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Btrcup said:

    Hi PJ, sorry to hear about your hubby's dr. visit. My hubby was dx Stage IV in February and was "no evidence of disease" in July. He has been on Oxiliaplatin, Leukovorin, Avastin at onc office, and 5FU fanny pack which a nurse came to house to hook and unhook. The effects are not horrible (for my hubby anyway). His side effects were no different from when he was getting 5FU at onc's office. I think they started this at home when they added the Avastin to the mix. Hubby will finish chemo in October (yea!!), then more scans.

    You and hubby will be in our prayers.

    Linda (Baltimore)

    WOW, Linda -

    From IV to NED in that short time?!? That's AWESOME!! Are you guys at Johns Hopkins, Bethesda, or somewhere else? I lived in Laurel for my first couple years in DC area.

    Cheers.

    - SpongeBob
  • pjenks57
    pjenks57 Member Posts: 112
    #6
    StacyGleaso said:

    hi "pj"..

    The name for CPT-11 is Camptosar. I took that, along with 5 FU and leucovorin. If you go onto www.patient.cancerconsultants.com, you can find wonderful information regarding drugs, side effects, and an array of other information. Best of luck through this minor setback.

    Stacy

    Thanks for the info. I will research it there. THANKS & God Bless you and yours
  • pjenks57
    pjenks57 Member Posts: 112
    #7
    scouty said:

    PJ,

    I take other chemo drugs with the 5FU 46 hour drip, so I won't go into my side effects. BUT, I really like the home nurse who comes to "unhook" me. I learn as much from her as I do the oncology nurses (even more on some things). The 46 hour drip requires a pump and other supplies. The nurse tracks that for you as well as doing all the nursing kinds of things (remove the needle, take care of disposing of the really nasty things that can't go in the trash can, taking temp and blood pressure, answers questions, and has 800 numbers for all kinds of 24 hour support). I consider her an integral part of treatment team, since I can ask her things I may have forgotten to ask 2 days earlier. It saves you a trip back to the chemo room too!!!! It isn't nasty at all!!!! I am always so glad to get the "fanny pack" off, I welcome her visits.

    Lisa P.

    Thank you for your information. Hubby likes to talk and he sometimes gets obcessed with cancer talk so someone else besides me will be a blessing for both of us! thanks and God bless you and yours.
  • pjenks57
    pjenks57 Member Posts: 112
    #8
    Btrcup said:

    Hi PJ, sorry to hear about your hubby's dr. visit. My hubby was dx Stage IV in February and was "no evidence of disease" in July. He has been on Oxiliaplatin, Leukovorin, Avastin at onc office, and 5FU fanny pack which a nurse came to house to hook and unhook. The effects are not horrible (for my hubby anyway). His side effects were no different from when he was getting 5FU at onc's office. I think they started this at home when they added the Avastin to the mix. Hubby will finish chemo in October (yea!!), then more scans.

    You and hubby will be in our prayers.

    Linda (Baltimore)

    You are very very fortunate. What a battle and isn't it great to be the victor. Thanks for your support. God Bless you and yours.
  • Unknown
    Unknown
    #9
    Hi PJ and sorry to hear about your minor setback. My hubby's CEA has been between 5.5 and 9.0...back and fourth since January of this year and he remains NED. Sometimes other things can make CEA rise. Has his doc taken a look at all other possibilities...it may be only a temporary increase. Hope all works out well and your and yours will remain in my prayers. My list is so long but I know HE hears us all.

    Hugs,
    Monika
  • nanuk
    nanuk Member Posts: 1,358 Member
    #10
    PJ: does hubby have a port, or IV for the fanny pack? I have a port, and disconnected and flushed my own connection. Also, Camptosar is the brand name, and Irinotecan is the generic name; you can word search any drug on www.drugs.com, and get more information than you want..bud
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #11
    nanuk said:

    PJ: does hubby have a port, or IV for the fanny pack? I have a port, and disconnected and flushed my own connection. Also, Camptosar is the brand name, and Irinotecan is the generic name; you can word search any drug on www.drugs.com, and get more information than you want..bud

    Hiya PJ---all tha support we have is available to you and your hubby--all that we are able to give--prayers/ love/ huggs--and the knowing that we care sweetie-----kanga n Jen

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