newest treatment plan

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jana11
jana11 Member Posts: 705
edited March 2014 in Colorectal Cancer #1
Hi again. I have been reading the posts, but haven't written much.. sorry.

I met with my onc last Friday. He said we need to take it all one step at a time. Part of me likes that expression, part of me is terrified by it. I met with radiation onc today. I will start radiation next Wed. I can't wait.

My tumor in my lung in growing!! I saw an x-ray on Friday and I can easily see a difference. I told my onc I wanted to re-start chemo ASAP. He wrote me script today, after I talked to the rad onc. I am taking xeloda, as of tonight. I am grateful to have the drugs to fight the beast, but HATE that I need it. Hmmm.

My family is starting to crack. I can tell they want to say things to make me better, but are at a loss. It is so sad to see them feel so helpless. I hate what this disease is doing to my family. I have relatives I've never met sending my parents information on experimental treatments. Yuck.

Anyhow. I am trotting along, trying to slay this horrible creature that is living inside me. I will have 5 weeks of radiation and then I might start trying some new experimental drugs... all depends on what the radiation does to my tumor.

Sorry this is so long. jana

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
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    Oh, Jana, what a brave, strong, sweet gal you are! Even though your family there is starting to go bizarre, US FAMILY HERE are RIGHT BEHIND YOU! As far as the relatives sending junk, if you don't want to do anything other than put them aside, that's ok.
    Horrible creature, yes so it is. I wish I could send it packing for you! (hey, maybe try LAUGHING at it EVERY DAY...it might leave in a sulk!).
    BIG, WARM HUGS
    Kathi
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
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    Hi Jana,
    You are very strong and brave, and You will beat this horrible creature! Have Faith in God. It must be difficult, but try... Have you thought about alternative methods, like Chinese doctors, etc.? I am glad that your family is supporting you. I will pray for you.

    Best wishes and God Bless.
    Eleonora
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #4
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    AuthorUnknown said:

    Hi Jana,
    You are very strong and brave, and You will beat this horrible creature! Have Faith in God. It must be difficult, but try... Have you thought about alternative methods, like Chinese doctors, etc.? I am glad that your family is supporting you. I will pray for you.

    Best wishes and God Bless.
    Eleonora

    Jana my dear...I told Kerry off for not being honest with me and telling me lies.She bin givin you lessons? When I asked you last night if you were ok you said you were fine. "NAUGHTY GAL..BAD GAL!" Now kanga is going to have to make an "example" of you sweetie in front of the "rest of the class" on thursday night. I am thinking big time "bear huggs with copious kisses" your pennance for not telling me you were upset on the phone. tsk! tsk!...bad girl...you wait 'til thursday...BOY...are you going to cop it!
    And no telling me you are changing your mind and not coming!Until then Jana you are to write "rainbow" 50 times on 1 A4 sheet of paper and hand into me on thursday...no excuses will be tolerated.
    I am not sending huggs this message....it's time you came TO ME and considering I came thousands of miles to see you thats a fair deal....ain't it?....hmmmmm?,,,,huh?
    ...from the oh so sleepy ag'ed kanga.
    (Jen's still zzzing)
  • goldfinch
    goldfinch Member Posts: 735
    #5
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    Jana,
    Your posts always seem so positive, even when you are passing on bad news to us. You exude optimism and I'm hopeful this will help you beat this terrible beast.
    You remain in my thoughts and prayers.
    Mary
  • Kanort
    Kanort Member Posts: 1,272 Member
    #6
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    Dear Jana,

    I hate that you need radiation and the chemo, but am grateful that your oncologists are working together on a plan of attack. Please know that we are with you all the way. Thank you for sharing you feelings with us. I am so looking forward to meeting you.

    Hugs,

    Kay
  • jenalynet
    jenalynet Member Posts: 361 Member
    #7
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    Hi Jana,
    I am glad you are starting this new plan and hope that you get good results. I am with you on what this disease does to families, I know from taking care of my mom when she had cancer..I felt helpless a lot of days. I will keep you in my thoughts and prayers that this plan helps you and that the radiation goes well. You are such an inspiration to me. Hugs to you. Audrey
  • DK2006
    DK2006 Member Posts: 126
    #8
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    Jana,
    I'm glad to hear that you have a plan. Our thoughts and prayers are with you. Best wishes, Donna
  • spongebob
    spongebob Member Posts: 2,565 Member
    #9
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    Jana -

    Sounds like you have a good plan. I know you probably can't WAIT to get started. Just know that EVERYONE here is behind you and we're here for you for anything you may need. I'm looking forward to seeing you in May.

    Be well and let us know if you need us to sharpen that sword for you.

    love ya

    - Bob
  • markatger
    markatger Member Posts: 314
    #10
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    Jana,

    I'm glad to hear you have a new plan starting! I was at support group last week. There was a gentleman there talking about some kind of radiation pill(??) he is going to start on in Portland for his liver and lung mets. He said it was a new kind of treatment that travels in your bloodstream to the tumor and then radiates it. Is that what kind of radiation you are doing? (I'm so sorry if by asking, this sounds like more experimental suggestions like the ones you're receiving from distant relatives.)

    I hope your family can focus on celebrating every day with you rather than focusing too much treatments and "what ifs". That is something I really struggle with, myself.

    Keep the faith gall! We're all pulling for you HARD!!!!

    Best Wishes!!
    Maria

    I hope your family can
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #11
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    Hi Jana -

    It sounds like you have a real plan and I wish you the best. You are such a trooper and a serious inspiration to everyone.

    I think the family often cracks long before the patient does. As patients we at least feel like we are doing something. Families can feel pretty helpless and either bury their heads in the sand and pretend it doesn't exist or get a bit nutty with their "help". Either way it means they love you, which may make the nuttiness slightly easier to take.

    Wish you all the best.

    Betsy
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #12
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    Hi Jana,
    The best thing to do under any circumstances is to let yourself and others to have feelings whatever they are. Alowing yourself and others to feel what you feel would help to move forward on a path that lies ahead. It is not necessary to be strong all the time. If it feels like crying, it is best to cry; if it feels like yelling, it is best to yell, etc. In other words just be there for your feelings and do not run away from them. This is the only way they will go away. If you hide from them, they will sneak out on you unexpectedly. But if you allow your feelings to be, they will go away. Just observe them and then let them go. And they will go. Let your family feel what they feel; it is not good, it is not bad; it just IS. They will feel what they feel and then it will settle...
    This is from Zen teachings. I am sorry, I did not mean to lecture, I just am trying to help.

    With this said, I am sending all good thoughts and prayers to you.

    Best wishes, Eleonora
  • jerseysue
    jerseysue Member Posts: 624 Member
    #13
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    Jana stay strong! Hope to see you in Austin as well. Sue
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #14
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    Jana,

    You are so very strong. I will continue to pray for you that you will win this. Good luck with the new treatment plan. We are all rooting for you.

    Maureen
  • taraHK
    taraHK Member Posts: 1,952 Member
    #15
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    Hi Jana -- My heart goes out to you. I can understand your ambivalence about the phrase "one step at a time". I remind myself, however, that that is all any of us (humans) can really do....I am sorry to hear that your family is crumbling at the moment. Of course it is understandable -- it is a tough time for all. What I sometimes found useful to was to actually tell them what I needed/wanted to hear at that particular moment. Sometimes I wanted to discuss things like "worse case scenario" and other times I craved nothing but lightness. I think it was useful to them for me to be quite explicit. But of course they will go through their own dark moments and difficulties. I sure know what you mean about unsolicited advice from distant relatives/friends. I tried to just discard what didn't 'speak' to me, without insulting anyone -- but not always easy! It sounds like you have a good "battle plan". My understanding is that chemo can sometimes enhance the effectiveness of radiation. I hope you go OK with the Xeloda and that also the radiation goes well. I'll be counting down those days with you! Best wishes, Tara
  • terril
    terril Member Posts: 296
    #16
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    Jana,
    I agree with you about family. This disease is horrible. If hits everyone. I pray for your family. I will especially pray for you and your radiation treatments. Lets hope the rads just blast the hell out of the tumor. The beast will die!!!! Bottom line...cancer sucks. Terri
  • jana11
    jana11 Member Posts: 705
    #17
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    kangatoo said:

    Jana my dear...I told Kerry off for not being honest with me and telling me lies.She bin givin you lessons? When I asked you last night if you were ok you said you were fine. "NAUGHTY GAL..BAD GAL!" Now kanga is going to have to make an "example" of you sweetie in front of the "rest of the class" on thursday night. I am thinking big time "bear huggs with copious kisses" your pennance for not telling me you were upset on the phone. tsk! tsk!...bad girl...you wait 'til thursday...BOY...are you going to cop it!
    And no telling me you are changing your mind and not coming!Until then Jana you are to write "rainbow" 50 times on 1 A4 sheet of paper and hand into me on thursday...no excuses will be tolerated.
    I am not sending huggs this message....it's time you came TO ME and considering I came thousands of miles to see you thats a fair deal....ain't it?....hmmmmm?,,,,huh?
    ...from the oh so sleepy ag'ed kanga.
    (Jen's still zzzing)

    Oh Kanga, I will give you my homework on Friday, not Thurs. I'm not coming until Friday - I have all that radiation stuff scheduled for Friday afternoon.

    You are absolutely the sweetest man alive! Thank you for being so caring, coming all this way, etc. Thanks for being such a tremendous friend!

    Can't wait to see you. jana
  • jana11
    jana11 Member Posts: 705
    #18
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    terril said:

    Jana,
    I agree with you about family. This disease is horrible. If hits everyone. I pray for your family. I will especially pray for you and your radiation treatments. Lets hope the rads just blast the hell out of the tumor. The beast will die!!!! Bottom line...cancer sucks. Terri

    thanks to each and every one of you. I greatly appreciate everyone's posts and look forward to reading them.

    I wish all of you good health! jana
  • jsabol
    jsabol Member Posts: 1,145 Member
    #19
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    Hi Jana,
    Sounds like you are back in fighting mode; you are amazing. I don't think those cancer cells understand what a formidable opponent you are; my money is on you! Your onc sounds tops; I can imagine the "one step at a time" is scary, but
    that is all anyone can take..you know, each journey begins with one small step....
    Family can be singularly useless when overwhelmed; I was the only person I or they knew with colon cancer, so this board became my family all through treatment. Post whenever you need a boost; you know we are all standing behind you.
    Keep up your amazing strength. Judy
  • ccartwri
    ccartwri Member Posts: 82
    #20
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    Jana
    I think about you all the time. Fight like hell. I am so glad you have good doctors and are getting treatment started. do NOT lose hope. You will kick its ****. I just know it.

    Love,
    claudia

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