PET/CT Results......... :(

idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
Wellllllll..... NOT good results..... It seems NED has gone away and left me. They found 4 nodules in my right lung and 1 in my left lung. Only 2 of them are lighting up. The larger one is 1.8cm and the small is 5mm. I am seeing a surgeon the 21st to see if they can be removed. Onc seems to think NO.Not operable because the big one too close to my air passage. Not enough clear margin for RFA either. So what ARE my other options???? I already called Craig and asked him about the Divinci Robot surgery.... that MAY be an option. I really don't know what other options are available for lung surgery. Onc put me back on Folfiri in hopes that it will do the same job it did the first time around.... I am not feeling it will and I am not crazy about MORE chemo. Dang.... my hair just got 4" long!!!! Now I gotta lose it all again.... and not to mention there goes my surgery to get rid of the excess skin from weight loss. Just when ya think it's safe... BAM~! What a friggin tease!

I am not as bummed as I thought I would be. I think in the back of my mind I expected this. Recurrence seems like a given in stage IV..... It is at this point however that I will be looking into ALL treatment options out there. Chemo is a band-aid..... I am looking for a more permanant fix.... did I say cure??? I think I did!!!

All I know is someone is going to have to shoot my a$$ or run me over or something cause I am NOT letting this crap take me down..... no way homey!

So... off to another battle in this nasty A$$ war..... Searching for new weapons so if you have any ideas....PLEASE share.... Thank you semi's for all your prayers and good vibes. I still feel blessed even tho this has happened. Craig..... thank you for all your support on the phone today.... I really needed that!

Jennie
«1

Comments

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #2
    Just keep on Battling
    I've sworn when my obit is read, these words will be included, "she went kicking and screaming", I won't lay down and let this cancer take me easily. I'm fighting every inch
    of the way.
    And your are too!!! I'm proud of you. I'm sorry about the loss of your skin surgery and hair.
    I had planned on having surgery this year, 30 years ago, they removed a tumor from my left breast and ever since the darn thing has been HALF the size of the right one. My God, I said, couldn't they have stuffed something back in there????? Then I discovered I had cancer in February and there went my surgery to make me even. Someday though, someday, I will have that surgery. (um, well, okay, I was hoping they would lift the darn things back where they used to be as well).
    Keep the thought, that you will get to have that surgery, that excess skin will be gone, and the hair will re-grow once again. (P.S. I really despise my flab from my stomach too!!!)
    They say beauty is in the eye of the beholder, unfortunately we're the beholders, and by golly critical of ourselves.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #3
    strength
    I can hear the strength in your words and I have no doubt that you will again fight and conquor this horrible illness. Get your boxing gloves on and get ready, it may be a rocky road, but you will find a smooth path. Petrina
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    man oh man
    Jennie,

    Not what I expected and hoped to hear, but I'm glad you're already on it and so is your onc in looking into all options. Dang on the hair, too.
    Well, this is part of living with cancer- you keep on living and fighting.
    I'm so sorry, really. No one deserves the crap cancer dishes out. But I know you are a fighter and you're ready to get the boxing gloves on!

    Hugs,
    Lisa
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #5
    Jennie
    Awwww I really was hoping for good news for you, really was :-( But I so admire your determination that you are going to battle on. I hope they can remove these nodules, was it a six month scan that you had? Cancer just makes me want to go arghhhhh, so different for everyone.
    Will be keeping you in my prayers and thoughts.
    Hugs
    Sonia
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    You Are Welcome
    It was nice talking to you:)

    Remember, things are bigger and better in Texas - we've got the lung option open down here now thanks to that last surgery, so you jump on a big jet plane and I'll get you hooked up with Dr. D - he'll know what to do:)

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
    #7
    I hear you Jennie
    after the results of my last PET/CT with the two nodules and one lymph node (5-9mm. the 9mm has the 2.8 SUV uptake) but nothing is conclusive for me yet and am waiting on the followup CT scan in Sept. Both my oncologists are worried but hopeful a false positive.

    Meanwhile have upped modified citrus pectin to 15 gm/day in divided doses, high quality Reishi mushroom 6 gm/day in divided doses. Now taking in capsules (see www.AlohaMedicinals.com) and tea but my acupuncturist is looking into tincture. Acupuncture twice/week. Also 1 gm resveratrol liquid and capsule in 2 divided doses/day. Juicing daily red and green cabbage, celery, carrots. Exercising as I have been (horseback riding and walking) and which includes weight lifting 2x/week. Plus off to see my internal medicine/anthroposophical doc in Fair Oaks CA near Sacramento for 2 weeks in July who has been prescribing the subcutaneous mistletoe since I was diagnosed. I will be receiving IV misteltoe there plus other therapies. In some ways a cancer spa vacation :-) I'm also not willing to let that NED status just quietly slip away.

    thinking of you, Leslie

    PS thanks to Craig for the telephone conversation too. Thinking of you as well as the surgery date comes closer.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #8
    Hi Jennie, I am sorry you
    Hi Jennie,

    I am sorry you didn`t hear `clear scan`again. I was really hoping this for you. I totally admire your spirit, + it will see you through this. As for the hair, I am on folfiri + avastin, lost most of my hair, + it started growing back after treatment 9 or 10. Now my head is covered, but it is really short. I actually don`t mind it even though I had longish hair most of my life. Keep on inspiring us!
  • WinneyPooh
    WinneyPooh Member Posts: 318
    #9
    Together we will
    Jennie,
    You have a wonderful attitude and i hope you really do continue to be positive in the sight of speed bumps, I know this is hard and we are all here for you,

    Your strong and together we will get thru this one day at a time.

    Penny
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #10
    That just BLOWS!!
    But like you said in your post. "I am NOT letting this crap take me down..... no way homey" That's the way you got to be in this fight. Fight it like you would a bear and no need to fight fair!! Kick, scratch, poke it in the eye, and kick it where it counts!!

    Brooks
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    Sorry!
    Hey, Jennie.

    I'm so sorry the results were not what you wanted, but I love your fighting spirit. Try all the treatments you can find, and tell cancer to take a seat.

    *hugs*
    Gail
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #12
    Jennie
    Jennie,
    Sorry about those results... crap! It is good to see your spirit is strong. You are a fighter and you will beat this thing. Thinking about you and holding you in prayer.

    Aloha,
    Kathleen
  • khl8
    khl8 Member Posts: 807
    #13
    Kathleen808 said:

    Jennie
    Jennie,
    Sorry about those results... crap! It is good to see your spirit is strong. You are a fighter and you will beat this thing. Thinking about you and holding you in prayer.

    Aloha,
    Kathleen

    Jennie,
    Time to dust off the
    Jennie,
    Time to dust off the boxing gloves and get down to business! You can an you will do this.
    Kathy
  • Paula G.
    Paula G. Member Posts: 596
    #14
    Damn it! I was so hoping
    Damn it! I was so hoping this would not be the case. John hasn't gave up either but still is saying no more chemo. He did tell the Onc yesterday that he may do it again later on.
    He does need to get stronger.
    Sorry Jennie. Keep up the fight. Love Paula
  • karguy
    karguy Member Posts: 1,020 Member
    #15
    Sorry
    I'm sorry about the bad news,but you just keep on fighting,You will win.I'll pray for you.
  • Aud
    Aud Member Posts: 479 Member
    #16
    Jennie
    sorry to hear about the results of the scan. Keep up the fight. You've got a winning, strong spirit.
    Holding you in the Light for healing.
    Aud
  • sheri22
    sheri22 Member Posts: 273
    #17
    YEP KEEP FIGHTING
    Jeannie

    Just keep fighting dont believe everything you hear espiccaly if it is negative, I was lucky I think my DR couldnt do anything else for me but he sent me to cleveland clinic and I get surgery hopefully will be NED for awhile, just keep getting other opinions which I know you will I will let you know how it goes with me and if all goes well maybe you can get in cleveland too life counts the money is just paper as my husband says.
  • MelanieT
    MelanieT Member Posts: 186
    #18
    YOU are amazing!!!! I have
    YOU are amazing!!!! I have spent so much time feeling sorry for myself for my husband having cancer and then BAM I read this today and realize that this sucks for everyone but giving up and failure are NOT options! Thank you so much for being such a fighter... you have just helped me more than you will ever no... thank you!! I will keep all my fingers and toes crossed that they get on the right track .... for your cure!! God bless

    Loves,
    Mel

    if you dont mind me asking,how long were you NED?
  • taraHK
    taraHK Member Posts: 1,952 Member
    #19
    You are amazing
    I'm so sorry to hear the results were not what you/we were hoping for (to put it politely!)

    I don't have "practical" suggestions to offer you at this stage -- I am sure you will be exploring various options with your medical team/loved ones, over the next little while.

    I have followed a fairly traditional ("Western medicine") route myself -- and will continue to pursue this option for the forseable future. But I also like to think of myself to someone who is open to options (traditional, 'alternative', spiritual)... I want to be open to all miracles that may come my way, and I trust and hope they are coming your way too.

    I love your spirit. I am just starting my 5th time on chemo. I know what it takes to get back on that horse -- and to stay on the horse, and to fall off again, and to get back on again.....

    I also really relate to the hair/appearance issues. I'm about to loose my hair (Xeliri), feeling sad, feeling like I shouldn't be sad....buying new underwear, wondering if I should be....Life goes on - all parts of it. And so it should.

    You are amazing! Sending ALL my available weapons your way

    Love,
    Tara (a fellow Dragon Slayer)
  • dorookie
    dorookie Member Posts: 1,731 Member
    #20
    I Hate cancer
    I am so sorry Jennie, I hate to hear this news. Stay strong, I will be praying for you!!!

    HUGS
    Beth
  • Unknown
    Unknown
    #21
    This comment has been removed by the Moderator

Discussion Boards