Good day turned to %^$#*&

LOUSWIFT
LOUSWIFT Member Posts: 371 Member
in Colorectal Cancer #1
Well I am on my last treatment #12 of Folfox today. I thought it would be a good day but I have had a a bloated distended abdomen since about threatment #9 with some locatized pain on the right side over the liver. My liver function numbers are still good and my CEA has remained around 1. My ONC listened today and got a strange look on his face. He said we need to do another CEA and a CT scan as soon as possible (Thursday)because there is a 1 in five chance I now have liver cancer and all these 12 folfox treatments were for nothing. After the scan they may need to put a needle in my abdomen and draw out some fluid for the lab. I know one in five seems to me on my side but my chances of reoccurrence were 1 in 9 and cancer returned. So numbers and odds don't go so well for me. I have decided with my family that I will not due chemo again so if liver cancer I may have about two years left. I thanked my ONC nurse today knowing that regardless I will not do chemo again. She is about the only person who has a brain there and seems to care about patients. They put off genetic testing for me as well since there may not be a point now according to them. I asked my ONC if he is nervious about liver cancer today why didn't I get a CT scan seven weeks ago. The truth is they don't keep up on their patients. He even had to pull up my liver labs to see if they were good. Inspires a lot of confidence. It's really is my fault I trusted doctors. I knew better because I worked with them for years when I was a parmedic and wow were some of them ae dumb and many just don't care. Well I should know for sure by next Monday if I have liver cancer just when it looked like it was over...Lou

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #2
    Lou
    Don't give up so soon. Even if you do have mets to the liver it can be treated with surgery.

    I'm stage IV and have a great oncologist. This last week we talked about whether or not to do mop-up chemo if my scans were clean. He actually liked the idea of waiting for a tumor to appear, because then they could **** whether or not the chemo was working (he also said that would not be his recommendation if I were stage 3).

    What part of the country are you in? It sounds like you could use a new medical team, and I am sure there is someone here who could recommend a better cancer hospital.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    %^$#*& so sorry about your news
    dear lou,

    damit you made it through folfox and this.
    now i am scared.

    like blake said you still have options. I am desparately sipping my chinese herbal tea as we speak.

    if you are into meditation , now might be a helpful time, try and keep the peace if possible and don't let our persistent troublesome guest rattle your soul.

    hugs,

    pete
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #4
    pete43lost_at_sea said:

    %^$#*& so sorry about your news
    dear lou,

    damit you made it through folfox and this.
    now i am scared.

    like blake said you still have options. I am desparately sipping my chinese herbal tea as we speak.

    if you are into meditation , now might be a helpful time, try and keep the peace if possible and don't let our persistent troublesome guest rattle your soul.

    hugs,

    pete

    sorry lou
    for this news.i too am back stage 4 found out in feb2011.i kept my surgen and went with a whole new team of oncs.it is actually a cancer center(no not of America).dont give up the hope yet...Godbless...johnnybegood
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #5
    Lou
    First off ... congratulations for making it through the full 12 treatments. I know how tough it was for you and I am proud that you were able to stick it out.

    I am so sorry to hear this lastest from you and will put out some good vibes and hope that it is not as bad as it might feel right now. I can really relate to how you feel about having this happen after going through the FOLFOX. They discontiued mine due to my reactions and now I am dealing with a recurrence that happened during and in spite of the miserable FOLFOX. I know it must feel like it was all for nothing. That's what I thought too.

    Hang in there and try to take it just one step at a time. I will definitely be hoping for better news. HUGS to you Lou.
  • geotina
    geotina Member Posts: 2,111 Member
    #6
    Hey Lou:
    That doctor actually said it may be liver and not colon? I can't believe what I am reading. He put you through Folfox and it may have been for nothing because he made a mistake? Can we say "malpractice".

    Now don't give up so soon. Get yourself on the phone and go down to Karmanos, its only a couple hours from you, and if memory serves you are Grand Rapids, and get some exact and direct answers. Our onc has done well by us and works with teams from Karmanos so if we run into a wall, Karmanos will be our next stop.

    Take care - Tina
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #7
    Lori-S said:

    Lou
    First off ... congratulations for making it through the full 12 treatments. I know how tough it was for you and I am proud that you were able to stick it out.

    I am so sorry to hear this lastest from you and will put out some good vibes and hope that it is not as bad as it might feel right now. I can really relate to how you feel about having this happen after going through the FOLFOX. They discontiued mine due to my reactions and now I am dealing with a recurrence that happened during and in spite of the miserable FOLFOX. I know it must feel like it was all for nothing. That's what I thought too.

    Hang in there and try to take it just one step at a time. I will definitely be hoping for better news. HUGS to you Lou.

    I would like some body gives me an 80 % of chances of non
    reoccurrence so odds are excellent !
    Wish you the best I'm sure you I'll be ok I will pray for that!
    Rest, get cool and tomorrow you will see the bright side of odds !

    Hugs dear Lou !
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #8
    Lou
    Lori is right, congratulations on making it through 12 rounds of folfox. I am really sorry for this latest issue, I hope the odds are with you + there is a simple fix.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    See someone else
    If I were you, I'd see another oncologist before giving up!

    *hugs*
    Gail
  • Nana b
    Nana b Member Posts: 3,030 Member
    #10
    tootsie1 said:

    See someone else
    If I were you, I'd see another oncologist before giving up!

    *hugs*
    Gail

    Yeah on 12!!
    I had cancer in my liver and I didn't have pain on my right side. After my liver resection, my ONC told me the pain would be in my shoulder and back and keep an eye on it. So, it isn't cancer until it is proven! Keep smiling and send positive energy to your side. Hugs@
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #11
    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #12
    LOUSWIFT said:

    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou

    Lou
    Hope is a good thing. I'm glad that there could be other reasons for what you're experiencing. Hang in there. I will be waiting to hear that the thyroid meds help the situation.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #13
    LOUSWIFT said:

    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou

    Lou
    Thank goodness for the family doctor!!!! I'm glad the news isn't as dire as you thought. And please remember they can do liver resections, so if it is the liver, I'm putting out every good vibe and thought that I can, that if it is your liver that it is quite able to get a resection.
    Hugs at you Lou.
    Winter Marie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #14
    LOUSWIFT said:

    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou

    WOW!
    It sounds like you have a great family doctor!
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #15
    AnneCan said:

    WOW!
    It sounds like you have a great family doctor!

    Hey Lou
    Yes...HOPE is a wonderful thing. I will be sending good vibes your way and HOPE that all this turns around in your favor. Take care my friend.

    Jennie
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #16
    LOUSWIFT said:

    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou

    Hope is our mutual friend
    he turns up when we need him most.
    I hope he stays by your side.

    Pete
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #17
    LOUSWIFT said:

    update
    After doing this post I received a phone call from my family doctor. He is the one that ordered a colonoscopy when my ONC wouldn't and they found my colon reoccurrence. Anyway, he did his lab thing and found that my chemo is messing up my thyroid so bad that I need thyroid medication every day because my thyroid isn't telling my body to do its functions. He also said that this could be causing the build up of fluid in my abdomen because the organs are leaking fluid waiting for chemical orders from my thyroid to do their jobs. Anyway I start the medication tomorrow and it will take two to six weeks for the medication to right the problem. It may still be the case that I have Liver Cancer and Thursday will tell but I am feeling a little better about my odds. ONC specialists:( give me a family doctor any time. To answer some questions I do live in Grand Rapids Michigan and besides Lacks Cancer Center we have one of the best Onc hospitals and research Centers in Devos Hospital. But as always it is a money thing. My insurance requires Lacks and will not authorize Devos (way more expensive) so I am sort of a prisoner and can't leave Lacks. I had hopes today of never seeing Lacks again thus my disapointment! I'm not out of the woods with the possibility of cancer but it seems less certain. A thing called hope has popped up and welcome to it! hugs Lou

    Good to hear Lou!
    Best of luck to you and yours!

    Blake

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