And the next curve in the road...

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toddi1973
toddi1973 Member Posts: 41 Member
in Colorectal Cancer #1
Hi All,
2.5 weeks ago, beginning of round 9 of 12 Folfox after 30 minutes of Oxi infusion, my field of vision narrowed and I was on the brink of fainting. Nurses caught me and stopped the infusion. I was given Hydrocortisone and then they continued with a slower infusion pace. However, that round knocked me out like Muhammad Ali his opponents. My Oncologist simply shrugged and ordered it to continue as planned. I found that weird. However, 3 days ago I went in for round 10 and was told that another Oncologist overruled the orders and cancelled this round. So I had to meet this 'other' Oncologist and it turns out that my previous Onc got fired in the meantime for no reason given and I now have a new one. Turns out I can be quite happy about it as this was the first time in this Journey that I actually heard the magical term "What do you mean, you have no saying ? It's your life, your body and I want to hear your opinions". So long story short as this is supposed to be a stage 2 adjuvant chemo, switching to FolFiri would not have made sense so we're stopping right here after 9 rounds. PET scan is supposed to happen now withint 2 weeks and then we will finally know what we're dealing with. Since day 1 of the Diagnosis it was a shrouded mistery if it was a stage 2 or 3 (they didnt take enough lymphnodes at time of surgery). Even Stage 4 was in the air a few days when CT scan indicated lesions on the liver (that -THANK GOD- turned out to be cysts (I guess working on cruiseships took a toll on my liver ;-) ).
So now I will finally get a proper staging. Praying for no more signs of Disease but even if, at least I know what I am up against.

What a ride this is... I have to say that even though I am not a frequent poster on this forum, I am a frequent lurker and take great comfort and knowledge out of this unique group of humans.

Toddi

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
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    Dear Toddi
    So sorry for your trials and tribulations, but very glad you now have an onc. who will be treating you as a person with a mind.

    Now it is up to you to keep him informed of your physical and mental feelings. One of the things here that will be helpful is you will hear what others are doing to treat their cancer. Don't ever hesitate to bring any and all to your onc's notice and discuss.

    We have to be our own advocate for sure. There is no dumb question and no doctor or other medical professional knows all.

    Best thoughts coming your way as you move forward.

    Marie who loves kitties
  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    #3
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    What a ride you have had!
    Toddi,

    Wow, your story is something else. I guess we have to remember that our Oncologists are just people too and they can be good and bad. Puts a different spin on things when we rest our lives practically in one person! I am so happy that you have been referred to a new oncologist who will get a handle on your disease. Thank God for that!

    I hope the rest of this journey goes smooth for you ~ stay positive and don't let your head get ahead of your body in thinking to much! Been there and done that!

    Blessings from Minnesota~

    "Minnie"
  • LilBitaWitch
    LilBitaWitch Member Posts: 10
    #4
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    It is just a number...
    I am on my 3rd go around with genetic colon cancer & now have hindsight dealing with doctors. My 1st doctor did little or nothing to help with the side effects. My 2nd time I was referred to another doctor and discovered there is a difference in doctors. You do have a say in any treatment you receive. You do not have to "just deal with the side effects" as I was told by my 1st dr. Sounds like you now have a GOOD dr who will try to make sure you have quality & quantity of life. When my brother was diagnosed he was given a choice of the 2, he chose quality and got 4 1/2 yrs. Hindsight he might have had both with a different dr. Do not base too much on the stage of your cancer, my experience with that is it just the number of lymph nodes that show positive. As for your allergic reactions with infusions, been there and done them all including my tongue swelling. Some of my treatments which were supposed to be 3 hrs turned into all day sessions because of reactions and having to slow down the infusions to prevent any further reactions.
    LilBitaWitch
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #5
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    LilBitaWitch said:

    It is just a number...
    I am on my 3rd go around with genetic colon cancer & now have hindsight dealing with doctors. My 1st doctor did little or nothing to help with the side effects. My 2nd time I was referred to another doctor and discovered there is a difference in doctors. You do have a say in any treatment you receive. You do not have to "just deal with the side effects" as I was told by my 1st dr. Sounds like you now have a GOOD dr who will try to make sure you have quality & quantity of life. When my brother was diagnosed he was given a choice of the 2, he chose quality and got 4 1/2 yrs. Hindsight he might have had both with a different dr. Do not base too much on the stage of your cancer, my experience with that is it just the number of lymph nodes that show positive. As for your allergic reactions with infusions, been there and done them all including my tongue swelling. Some of my treatments which were supposed to be 3 hrs turned into all day sessions because of reactions and having to slow down the infusions to prevent any further reactions.
    LilBitaWitch

    Wow, sounds good you have a
    Wow, sounds good you have a different onc. now. Hope all is well from here on!!

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