Officially Stage 4

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lizbiz
lizbiz Member Posts: 120
edited March 2014 in Colorectal Cancer #1
Hello all,

First of all, I want to thank everyone for their kind thoughts and well-wishes. I received some devastating news today. Not only do I have a met to my liver (thankfully, it is operable), but I also have two walnut sized mets in my peritoneum. It hasn't even been a month since I finished my 12th FOLFOX treatment. We're now going forward with 3 months of FOLFIRI with Avastin to try and shrink the tumors and kill any "seedlings". Then on to surgery.

I'm so upset by this news. I feel worse than I did when I received my initial diagnosis.

Feeling very scared,
Elizabeth
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Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375
    #2
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    Huggggs Elizabeth!
    Deep breathing!! Keep taking some deep breaths! Of course you are scared, my friend. You would not be human if you weren't scared. Every time we get news from the docs/specialists that is anything other than the desired words "You are NED", there is grounds to be scared. And the only reason to be scared is because of the years and years that are ingrained in us that "Shhhhh... we don't talk about the C word. Cancer = death! Shhhhhh" That was years ago, Elizabeth, yet the fear that the C word puts into us is just as powerful now as it was back then when there really was not much hope. And even then, I wonder how many times people did get better but, of course they were not documented, so we never heard about them??

    Ok... so you have some not fun news. No one wants to hear of new tumors that have been found. But let's look at it a different way. If you had not been diagnosed when you were, then you would be living today with all those tumours in you .. or else, because they had not been found, you might not be here today to tell us about them. But they were found and you are still here and your medical team is going to come up with another plan to fight the beast. So, it will take a bit longer than you were hoping. More chemo, then more surgery... but that day will come when the tumours have been shrunk enough that you can then have surgery to remove them. Meanwhile, this extra 3 months of FOLFIRI and Avastin is going to go a long way in killing off any of those pesky "seedlings". They are the problem... they can't be seen so you have no idea where they are... and if ignored, then they swim around, looking for a good place to take root.

    So, allow yourself to have some "fear" time, but just a very short time... then look at it realistically. They were caught and they are going to be dealt with... and life will be good :)

    Hey, I have to fight these d*mn lung tumours, and I was expecting two of them to be gone after this procedure on Tuesday, but he only took one because it was too "risky". I was definitely disappointed... but now that I've had some time to absorb the information and get my brain wrapped around it, it's onward ho! I, too, am Stage IV... but that's just a number to me. Whether I was Stage I or Stage IV, the big deal is... can we still treat it? The answer is yes... so onward we go! And when we do treat it and throw it into remission, then we get bragging rights "I survived Stage IV cancer! Neener, neener, neener!!"

    Huggggggs! Don't ever give up... let's do it together, my friend! I'll hold your hand if you hold mine!!

    Cheryl
  • pamness
    pamness Member Posts: 524 Member
    #3
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    I can understand that, all the best.
    It is like my worst nightmare, I hope that you can keep your spirits up and beat this thing.

    They say that positive thought help. I don't know, but it is worth a try.

    Pam
  • pamness
    pamness Member Posts: 524 Member
    #4
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    I can understand that, all the best.
    It is like my worst nightmare, I hope that you can keep your spirits up and beat this thing.

    They say that positive thought help. I don't know, but it is worth a try.

    Pam
  • kimby
    kimby Member Posts: 797
    #5
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    Chin Up
    I know you are scared: I felt exactly the same way. I was originally diagnosed stage 3 8/2007. It wasn't until I was stage 4, 8/2008, that I got really, really scared. Panic. It will be ok. WE will be ok. You can fight this and you are NOT alone! I have inoperable liver mets and now mets in distant lymphnodes. Checking out clinical trials, more chemo, sirt spheres....whatever I must. We are in this together and can fight this together. Our paths may be different but our will and determination can fuel each other. We are young and otherwise healthy (isn't it weird, I do think of myself as healthy with stage 4 cancer?)....we will beat the odds. Do not look at statistics. They don't matter.

    Your new partner in crime,

    Kimby
  • msccolon
    msccolon Member Posts: 1,917 Member
    #6
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    craptastic :(
    bummer. I know you were hoping for better news, I certainly was! I know you will pick yourself up after you have time to adjust, but it still SUCKS big time! I remember the fear when we confirmed the enlargement of my abdomen was due to a large tumor growing in there back in 2006. By the time we got in there, the tumor was the size of a soccer ball and there were multiple tumors in my omentum and abdominal fat. They removed everything and I am still here! FOLFIRI for 6 months twice since then, and now my CEA is rising again. I go in to see another surgeon on Feb 4th to see what he has to say. I know you are like me, so jealous of those who have been able to hear NED and for years on end! Our time will come! You are strong and will do what's necessary for yourself and your family. Send those dammed cancer cells packing and onto dancing with NED!
    mary
  • msccolon
    msccolon Member Posts: 1,917 Member
    #7
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    kimby said:

    Chin Up
    I know you are scared: I felt exactly the same way. I was originally diagnosed stage 3 8/2007. It wasn't until I was stage 4, 8/2008, that I got really, really scared. Panic. It will be ok. WE will be ok. You can fight this and you are NOT alone! I have inoperable liver mets and now mets in distant lymphnodes. Checking out clinical trials, more chemo, sirt spheres....whatever I must. We are in this together and can fight this together. Our paths may be different but our will and determination can fuel each other. We are young and otherwise healthy (isn't it weird, I do think of myself as healthy with stage 4 cancer?)....we will beat the odds. Do not look at statistics. They don't matter.

    Your new partner in crime,

    Kimby

    healthy
    I always laugh when I am asked am I healthy ... well, except for that minor thing we call colon cancer, I'm damned healthy!
    mary
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
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    I'm hugging you so tightly....
    Oh, my dear...I am sending warm, fuzzy hugs.

    There is really nothing I can say that would help. I am here, whatever I can do, sweet soul. I know a bit what it's like to think you are done, just to have to start again...sigh...

    Hugs, Kathi
  • Unknown
    Unknown
    #9
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    msccolon said:

    craptastic :(
    bummer. I know you were hoping for better news, I certainly was! I know you will pick yourself up after you have time to adjust, but it still SUCKS big time! I remember the fear when we confirmed the enlargement of my abdomen was due to a large tumor growing in there back in 2006. By the time we got in there, the tumor was the size of a soccer ball and there were multiple tumors in my omentum and abdominal fat. They removed everything and I am still here! FOLFIRI for 6 months twice since then, and now my CEA is rising again. I go in to see another surgeon on Feb 4th to see what he has to say. I know you are like me, so jealous of those who have been able to hear NED and for years on end! Our time will come! You are strong and will do what's necessary for yourself and your family. Send those dammed cancer cells packing and onto dancing with NED!
    mary

    This comment has been removed by the Moderator
  • dorookie
    dorookie Member Posts: 1,731 Member
    #10
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    I share your fears
    I too only had a few months of being NED, then it was back, like you it has hit me harder then the first DX, not sure why, it just has. You are not alone, sure wish I could say something to make you feel better, other then to let you know I know what your going through. Please let me know if I can do anything.

    God Bless
    Beth
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
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    Praying
    Elizabeth, I'm so sorry you got that news. I was hoping it wouldn't be like this. Other people have already posted some wonderful, uplifting comments, but I just want to give you a hug and tell you I will be praying for your miracle to come sooner rather than later.

    *hugs*
    Gail
  • MoonDragon
    MoonDragon Member Posts: 183
    #12
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    Oh Liz, I'm so sorry! I know
    Oh Liz, I'm so sorry! I know your fear, we all do and we're all here for you! Wrapping a warm cozy blanket of comfort around you.

    Jorie
  • VickiCO
    VickiCO Member Posts: 917
    #13
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    I am sorry
    Elizabeth,

    There isn't much I can add, except to say I hold you in my prayers and thoughts. I know you must be scared, angry, sad - all the emotions. I wish I could be there to give you a hug.

    Vicki
  • kmygil
    kmygil Member Posts: 876 Member
    #14
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    So Sorry
    I'm so sorry to hear this, Liz, but you will pick yourself up and go on. I know it's devastating, but you are strong. Take things one at a time just like before. You will kick this beast's a--.

    Hugs and prayers,
    Kirsten
  • lizbiz
    lizbiz Member Posts: 120
    #15
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    kmygil said:

    So Sorry
    I'm so sorry to hear this, Liz, but you will pick yourself up and go on. I know it's devastating, but you are strong. Take things one at a time just like before. You will kick this beast's a--.

    Hugs and prayers,
    Kirsten

    Thank you, all...
    It means a lot to me to have this board and everyone on it. We've been doing a lot of crying here and my husband is trying to convince me that I'm not going to die at the age of 33.

    This is definitely harder than the initial diagnosis. I was hoping for an end to all of this...or at least a new beginning. I'm not giving up, I'm just wallowing at the moment. I too have always been so healthy. I never used to wonder why this happened - all I knew is that it did and I had to take certain steps to fight it. Now I am always wondering why this happened. We really felt like things were at their lowest and now we've sunk even lower.

    Thanks again to everyone here! It does make me feel better to hear words of encouragement. I'm just praying to God that the FOLFIRI/Avastin works better than the FOLFOX (which didn't seem to).

    Love and Hugs,
    Elizabeth
  • keepnthefaith
    keepnthefaith Member Posts: 36
    #16
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    I'll be praying
    Elizabeth,
    I know there are no words that I can say that will alleviate the fear and frustration you are feeling right now. So I will just tell you that I am praying for you and your doctors - that all the right decisions are made and that the tumors respond to the chemo.
    Hugs,
    Felicia
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #17
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    I understand
    Hi Elizabeth,

    Your post has just brought back all the feelings and emotions I had when I had my own recurrence after just three months. It was overwhelmingly scary at the time and I definitely did a lot of crying too. So many have given you their comforting words already, but I want to echo the same and give you a "cyberhug"! I'm now in the midst of doing Folfiri (or whatever they call it when oral Xeloda is substituted for the Leucovorin and 5FU- glad I'm doing the oral instead of the 5FU pack this time). Anyhow, I'm doing okay- mentally my brain is much less foggy doing this than when I did Folfox. I felt like I was in a constant haze while on Folfox. I've had one CT scan while on treatment & my next is due beg. of March. November's scan (after 2-1/2 months of treatment) showed everything "stable" and my hilar lymph node in my lungs did not show up on the scan anymore. So, it was good news- actually I had hoped for better (like everything is GONE), but I'll take stable. I'll certainly be praying for good news on my next scan.
    I am lifting you up in prayer before the Lord right now. Whether you know Him or not, I believe that He knows and loves you, and He has a plan... hard to understand what that plan is, but He does have a plan. I'm starting to see and understand part of that plan for my life and current situation lately. Oh, if we could only know the "why"- but we can't put ourselves through the extra stress of wondering that. We just have to move on and press onward on this fight!
    You will get through it because you have to! We will all be here for you.

    God bless,
    Lisa
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #18
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    sending hugs
    I am sending hugs to you. I wish I could help more.

    I hope that you are being seen at a major cancer center.

    Please keep us posted, we care.

    Maureen
  • menright
    menright Member Posts: 256 Member
    #19
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    new tumors
    Sorry for your news. The chemo is supposed to keep this from happening. Good luck with the new treatment. Lets hope and pray for good news next time.

    Mike
  • maglets
    maglets Member Posts: 2,576 Member
    #20
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    menright said:

    new tumors
    Sorry for your news. The chemo is supposed to keep this from happening. Good luck with the new treatment. Lets hope and pray for good news next time.

    Mike

    Crapiola
    Elizabeth that is indeed crappy news. I know what you mean about the second time round....it does seem scarier and more threatening and just plain devastating because you thought you were doing all the right things. I have been there twice.....i am there right now

    So you do need to take some time and absorb this news. Honestly it will calm down this fear and anger and you will be able to cope with the next phase.

    I am thinking about you and sending a million hugs and best wishes to you

    There are lots of us here who can do this together.

    Best love,
    Mags
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #21
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    maglets said:

    Crapiola
    Elizabeth that is indeed crappy news. I know what you mean about the second time round....it does seem scarier and more threatening and just plain devastating because you thought you were doing all the right things. I have been there twice.....i am there right now

    So you do need to take some time and absorb this news. Honestly it will calm down this fear and anger and you will be able to cope with the next phase.

    I am thinking about you and sending a million hugs and best wishes to you

    There are lots of us here who can do this together.

    Best love,
    Mags

    Elizabeth.........
    Prayer got Hop through it...VickiCo...Mike49...and me and we're still on mensright...Now young lady, you are and will for as long as it takes stay at the top of my prayer list until we turn this around....and we will turn this around....quit dwelling on it and resume your life as it was as best possible, there is nothing you can do to "fix" anything for now so try to enjoy life right now until the next path takes you on your next treatment regimen...Live , love and laugh.....Then buckle down and get mad again and come out on top..again!!!......God Bless you and yours hun..........You got the right people on your side......... :-)

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