Update on ****

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
You are wonderful in your love and support. After getting that very hard news last Thursday we are settling in for a plan. I can't believe how absolutely shocking it is to hear that the cancer is back. Those first days were so hard.
We met with the oncologist here yesterday and spoke to Dr. Lenz. Both agree that **** should start on Erbitux next week. We are not yet sure what drug he will be taking with it. What have others done? CPT-11? 5 FU? Please let us know.
We hope that Erbitux is effective and will stop growth for awhile or for a very long time (like our friend Phil).
We have some clarification on the spread. Small nodes in the lungs and lymph node spread. It looks like the mass they saw is a lymphocele, it did not light up on the PET. We are relieved about that.
We will let you know when we have a plan finalized. We are Fed Exing the PET and CAT disks to doctor Lenz as he wants the radiologist at USC to see them.
I am so sorry my dear husband has to go back on chemo but so happy to have hope.
Thank you for your prayers.

Aloha,
Kathleen
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Comments

  • Crow71
    Crow71 Member Posts: 679 Member
    #2
    I never did erbitux; so I
    I never did erbitux; so I can't help you with that.
    All I can offer is sparks and loads of good vibes and hope.
    Stay strong and focussed.
    Roger
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Kathleen:
    Well, now that the news has sunk in, a plan of action seems to be in place, the only thing I can offer is my very best wishes.

    Phil can help you with the Erbitux and the rash. The only thing I have heard is to try and get on top of it even before it starts. Good news is that if you get the rash, drug is working.

    As far as CPT-11, that is what George is on now. Diarrhea, not bad for George, no urgency, an Immodium AD takes care of it and he only had to use one and it was after infusion and the next day 1. Manufacturer says take 2, but George found that to be too much. Hair loss and fatigue, fatigue, fatigue.

    Take care and best wishes - Tina
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #4
    Kathleen
    I am glad to hear that you guys are settling into working the plan out with the doctors and that Dr. Lenz will be looking at the scans. I wish the very best for you!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #5
    A plan!!
    Awright... now we are talking! A plan! Everyone needs a plan to chase away the fear. As long as there is a plan in place, then you know everyone is working on your team and the battle continues... just with new arsenal!!

    I can't help you with the Erbitux question... that is the next chemo I will be going on if the CPT-11 doesn't do it's thing and work for me. So I will be interested in following how/what it does for ****. And yes, Phil will be an excellent resource for you two because he has been on it for a long time and it seems to be working well for him.

    I'm so glad the "mass" is nothing to worry about. Now it is the small nodes in lungs and lymph nodes. My guess is the Erbitux will kicked those nodes in the "you-know-where" ;)

    I'm thinking of you two all the time!!

    Cheryl
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #6
    geotina said:

    Kathleen:
    Well, now that the news has sunk in, a plan of action seems to be in place, the only thing I can offer is my very best wishes.

    Phil can help you with the Erbitux and the rash. The only thing I have heard is to try and get on top of it even before it starts. Good news is that if you get the rash, drug is working.

    As far as CPT-11, that is what George is on now. Diarrhea, not bad for George, no urgency, an Immodium AD takes care of it and he only had to use one and it was after infusion and the next day 1. Manufacturer says take 2, but George found that to be too much. Hair loss and fatigue, fatigue, fatigue.

    Take care and best wishes - Tina

    CPT-11
    Hey Tina,

    I know you've mentioned George's side affects with the CPT-11 and I'm glad to hear that an immodium does the trick for the diarrhea... but a question about the fatigue. When you say "fatigue, fatigue, fatigue", do you mean he's fatigued 24/7 all the time... or just a couple of days during each cycle?

    I can't remember what cycle he's on. I'll be getting a 90 minute infusion every 3 weeks.... is that what he's doing too?

    Thanks!

    Cheryl
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    Thank you for the update!
    Keeping you both in my prayers!

    Dutch hugs, Kathi
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #8
    I'm so glad to hear that the

    I'm so glad to hear that the doctor will be able to prescribe Erbitux. Hey, if works great for Phil, there's simply no reason why it can't work great for **** too! Right? My thoughts and prayers are with you both. Hugs! Cynthia
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #9
    Hi Kathleen
    Thanks for the update. I want to wish **** well with the Erbitux. I may be on that in a few months also.
  • Nana2
    Nana2 Member Posts: 255
    #10
    Sounds like you're getting
    Sounds like you're getting your legs back under you. I'll keep praying for you and your family Kathleen.
    (Hugs)
    April
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    Praying for you
    Hey, Kathleen.

    I've been thinking about you and **** a lot the past few days. I mentioned your situation to my circle from church on Tuesday and put you on our prayer list. It's so good to hear that you're settling in with the news and getting some news that is a bit better.

    Please tell **** to hang in there. We're with y'all all the way!

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #12
    tootsie1 said:

    Praying for you
    Hey, Kathleen.

    I've been thinking about you and **** a lot the past few days. I mentioned your situation to my circle from church on Tuesday and put you on our prayer list. It's so good to hear that you're settling in with the news and getting some news that is a bit better.

    Please tell **** to hang in there. We're with y'all all the way!

    *hugs*
    Gail

    Kathleen and ****......I have a feeling about this........
    That some very good things are going to come out of this.....don't ask me why, I just got a funny feeling that all will be ok......lets go with that and see just how good my gut feeling is........Love to all 4 of you........Buzz
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #13
    Buzzard said:

    Kathleen and ****......I have a feeling about this........
    That some very good things are going to come out of this.....don't ask me why, I just got a funny feeling that all will be ok......lets go with that and see just how good my gut feeling is........Love to all 4 of you........Buzz

    Kathleen, think about you
    Kathleen, think about you guys often, so hard to have to go through chemo again. wish you guys lots of strength to get through this battle.... HUGS. petrina
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #14
    I am so relieved that the one mass is nothing to worry about. Erbitux will knock those other tiny things out! Keeping you and your family in my prayers.

    Amy
  • chicoturner
    chicoturner Member Posts: 282
    #15
    thank you for sharing the
    thank you for sharing the plan! You have been on my heart since you posted the results. You will be stronger then you ever thought you could be or would have to be, but you will do it.
    I will continue to pray for you. Best to you. Jean
  • chicoturner
    chicoturner Member Posts: 282
    #16
    thank you for sharing the
    thank you for sharing the plan! You have been on my heart since you posted the results. You will be stronger then you ever thought you could be or would have to be, but you will do it.
    I will continue to pray for you. Best to you. Jean
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #17
    HOPE
    Kathleen,

    Your last words say it all "...I'm so happy to have hope". You and **** DO have hope and that cannot be taken away! You're going to get through this-
    Thinking of and praying for your family-

    Lisa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #18
    dear **** and kathleen
    Really glad your making progress fast.

    I told my onc Dicks story last Monday as it kind of rocked me personally.

    My onc said " don't worry that far in the future, lets get through the next chemo cycle"

    so thats what we talked about.

    Our situations are similar ie Dad with bowel cancer, wife and two kids.

    I felt like I was looking at my future when I read your post.

    My prayers are with you.

    Pete
  • AceSFO
    AceSFO Member Posts: 229
    #19
    Dear Kathleen,
    I only just
    Dear Kathleen,
    I only just learned of ****'s recent scan and the ensuing bad news. My heart sank to read it. I'm glad however for the good news about the mass not lighting up and I like Buzzard's sense of something good coming of this. I'll focus on that as well and continue to send you light and love. I know I'm not all that close to USC, but if there's anything I can do from this end, please let me know. Maybe I can even drive down.
    with love and gratitude,
    Adrian
  • Kerry S
    Kerry S Member Posts: 606 Member
    #20
    I am with Buzz on this one
    Kathleen Darlin and ****,

    I am with Buzz on this one. Call it an old mans intuition or what. I am older then Buzz, therefore mine has to be better then his. Yes, I also have a gut feel that **** is going to be just fine. You both have a damn good attitude. Stick with it. The power of positive thinking always does better with any problem.

    Kerry (old intuitive SOB)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #21
    Kerry S said:

    I am with Buzz on this one
    Kathleen Darlin and ****,

    I am with Buzz on this one. Call it an old mans intuition or what. I am older then Buzz, therefore mine has to be better then his. Yes, I also have a gut feel that **** is going to be just fine. You both have a damn good attitude. Stick with it. The power of positive thinking always does better with any problem.

    Kerry (old intuitive SOB)

    Here Here !!!
    Kerry, I fished in the Red Sea with Moses just prior to watching him part it....Now, Young man, just how old are you ?

    :)


    OH. BTW...Hi Kat and ****.......

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