Not so encouraging news

Kelly41
Kelly41 Member Posts: 15
edited March 2014 in Colorectal Cancer #1
My mom and I went to Mayo Clinic this week looking for hope and we got the opposite. She has stage 4 cancer but they are still unsure if it started in her colon or somewhere in the GI tract. The doctor said either way they will treat her with Folfox since that is the standard treatment for GI/colon cancer. What is so different about her cancer is it has spread throughout her entire pelvis (ovaries, uterus, spleen, appendix) but her lungs are good and liver is alright. But they are not able to operate because of how bad it is and they said the operation would not help. Her only hope is chemo and they said this will only buy her more time. THe hardest thing to hear was that if chemo doesnt work the doctor gave her 3-6 months to live. So does anybody know how often chemo works? What happens when one chemo stops working? Are there alot of different types to try or does the body eventually get used to chemo? I was hoping for better answers than what we got or at least hoping for clinical trials but they are just doing chemo right now. My worry is that if Folfox doesnt work it will be too late to try another chemo.

Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #2
    Praying
    I really don't have answers for you, but I just wanted to tell you that I'll be praying for you and your mom.

    *hugs*
    Gail
  • JDuke
    JDuke Member Posts: 438
    #3
    tootsie1 said:

    Praying
    I really don't have answers for you, but I just wanted to tell you that I'll be praying for you and your mom.

    *hugs*
    Gail

    Kelly
    I am so sorry that you had to hear such discouraging news. I do not have any answers either, but I will also be praying for your mother and you. There will be others that will jump on soon that will have plenty of information to share with you. Hang in there, this is a place that inspires hope.
    Blessings,
    Joanne
  • coloCan
    coloCan Member Posts: 1,944 Member
    #4
    JDuke said:

    Kelly
    I am so sorry that you had to hear such discouraging news. I do not have any answers either, but I will also be praying for your mother and you. There will be others that will jump on soon that will have plenty of information to share with you. Hang in there, this is a place that inspires hope.
    Blessings,
    Joanne

    Give the FOLFOX a chance; its powerful stuff!!!There are also second and third opinions to look into by other doctors. Never give up hope, as you've learned in your own battle. Wishing the best for your mother (and yourself)...Steve
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Hi Kelly
    Best to do the chemo first to try and knock this cancer down and see how it goes. Folfox is powerful stuff. Maybe later they can give you surgical options. Are they also going to give her Avastin in addition to the Folfox? The Folfox is the first line of treatment most people get. There are other chemos available should Folfox not work, others will chime in on that.

    Take care - Tina
  • Crow71
    Crow71 Member Posts: 679 Member
    #6
    Hey Kelly,
    First - Don't
    Hey Kelly,
    First - Don't loose hope. Sometimes it's all we have. I don't know why your mom's cancer is different, but you should know. Knowledge is power. I call my doctor from time to time when I have a question, and he is really good at getting back and taking a few minutes to talk to me on the phone. Try not to focus on the "3 to 6 months," focus on the fact that lots of us have had great results from Folfox. It is great stuff. Sometimes it does not work, and sometimes the cancer begins to adapt. In that case, there are other drugs that also work very well.
    Stay strong.
    Peace,
    Roger
  • Kelly41
    Kelly41 Member Posts: 15
    #7
    geotina said:

    Hi Kelly
    Best to do the chemo first to try and knock this cancer down and see how it goes. Folfox is powerful stuff. Maybe later they can give you surgical options. Are they also going to give her Avastin in addition to the Folfox? The Folfox is the first line of treatment most people get. There are other chemos available should Folfox not work, others will chime in on that.

    Take care - Tina

    Tina, They did not say they
    Tina, They did not say they are giving her Avastin with the Folfox. I will ask the doctor on Tuesday and see what they say. I am glad to hear that Folfox is powerful. THey didnt think there would be an option for surgery but until they see how chemo work you never know. Thank you for your reply
  • Kelly41
    Kelly41 Member Posts: 15
    #8
    Crow71 said:

    Hey Kelly,
    First - Don't
    Hey Kelly,
    First - Don't loose hope. Sometimes it's all we have. I don't know why your mom's cancer is different, but you should know. Knowledge is power. I call my doctor from time to time when I have a question, and he is really good at getting back and taking a few minutes to talk to me on the phone. Try not to focus on the "3 to 6 months," focus on the fact that lots of us have had great results from Folfox. It is great stuff. Sometimes it does not work, and sometimes the cancer begins to adapt. In that case, there are other drugs that also work very well.
    Stay strong.
    Peace,
    Roger

    Thank you Roger, I am trying
    Thank you Roger, I am trying so hard to not lose hope. Sometimes I wish doctors would not tell us how long they think we have. It seems from the replies that Folfox is a good drug so hopefully it will work.
  • kimby
    kimby Member Posts: 797
    #9
    HIPEC
    Did anyone mention the possibility of HIPEC? It is basically a heated chemo wash throughout the abdomen. I don't know what the criteria are or if it would help. Since I don't know much about it, I have a friend that can help you sort some things out. Her name on here is: JenHopesPrays. Please PM her and I will send an email to her so she comes to the board and finds you.

    Hugs and prayers,

    Kimby
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #10
    Prayers for your Mom
    Keeping the faith is so important in the fight. Don't know what your personal situation is but if you have the ability, and your Mom is agreeable, perhaps another opinion or two would be in order.

    I think it is hardest when we get bad news from such a well known place as Mayo, but they don't know everything or it may not be in their proticol to consider surgery.

    In one way we all want to know about how much 'good time' we have left, yet no one but God knows how long we will be here. I think using the numbers as a goal to beat is the best use of such information!

    I know the folks here will chime in on what alternative chemo's may be out there so you can ask about them with the doc.

    Praying that your Mom does well with whatever treatment is determined best.

    Marie
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #11
    Lovekitties said:

    Prayers for your Mom
    Keeping the faith is so important in the fight. Don't know what your personal situation is but if you have the ability, and your Mom is agreeable, perhaps another opinion or two would be in order.

    I think it is hardest when we get bad news from such a well known place as Mayo, but they don't know everything or it may not be in their proticol to consider surgery.

    In one way we all want to know about how much 'good time' we have left, yet no one but God knows how long we will be here. I think using the numbers as a goal to beat is the best use of such information!

    I know the folks here will chime in on what alternative chemo's may be out there so you can ask about them with the doc.

    Praying that your Mom does well with whatever treatment is determined best.

    Marie

    Second opinion
    Dear Kelly,
    I highly reccommend a second or third opinion..They told me when my carcer spread to my liver (after 7 months NED) that it was inoperable too...I thought I was doomed...But went to a specialist at Sloan Kittering Memerioal in NYC..He was very surprised the other doc told me I was inoperable...He told me I had MANY options to do yet.......SOOOOOOO please go to another doc and see what they have to say..If for nothing else than you get a peace of mind knowing you did EVERYTHING you could....Good Luck my prayers are with you...JULIE
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #12
    Other options..
    Hi Kelly,

    I think you need to see a surgical oncologist. How old is mom? Is she in good shape? I had abdominal mets and I had them removed along with everything not nailed down such as ovaries. Then I had the chemo wash to kill any lingering cancer cells.

    If you would like more information on the new studies that have come out on this last year please send me an email at HIPECworks@gmail.com. I set this email up so folks who need the info can get it to take to their docs and discover more about this amazing treatment.

    I have been NED for one year. As Kimby said I would be happy to chat with you anytime.

    Jennifer
    Stage IV mets to liver, ovaries with peritoneal carinomatosis.... removed with CRS and HIPEC
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #13
    Kelly
    Hi Kelly
    I am a little over 5 years out from first surgery/Dx. I had spread from colon, into overies,uterus and lymph. They took half my colon, total hysterectomy, appendix out and lots of lymph nodes out of abdomin. Had standard chemotherapy, only able to do 7 out of 12 twelve of them. It sounds like the organs your mom has cancer in is all ones they could remove also just on what you are telling us, chemo could reduce the size of the tumors also where they could be more successful with surgery, get second, third and more opinions, with no involvement of the liver or lungs she could have a very good chance as I have had. If your mon is willing to fight and is able to withstand surgery and cheom she may have a fighting chance. I know Mayo has a very good reputation, but it never hurts to find a doctor who is more proactive and wants to fight for you. Best hopes for your mom and you.
    Pam
  • KathiM
    KathiM Member Posts: 8,028 Member
    #14
    Hope is a powerful thing....
    I was originally given 6 months to live. 5 years ago. Granted, unlike your mom, my cancer was contained in the rectum, with lymph involvement...but the stats were fairly dismal.

    It it true that the first course of treatment is fairly standard. These are 'tried and true' options that are known for their sucesses.

    My advice is to not look beyond the current time. If you don't have faith in the suggested treatment, get a second opinion. Mom can get this even if she has started chemo. For my breast cancer that followed the rectal cancer by 6 months, I sought out 5 second opinions. There is nothing wrong with feeling good and having faith in whatever is suggested for treatment. And most insurances will spring for a second opinion, no question.

    The big thing is to keep the hope going. Both for you and mom. But ESPECIALLY for mom...

    Hugs, Kathi
  • kmygil
    kmygil Member Posts: 876 Member
    #15
    Hope on
    Hi Kelly,

    Keep on hoping. Get more opinions. Ask about the HIPEC; one of my friends just had that treatment and he is doing better. Know that doctors are human and can only go by what they know. What they don't know is how long we have, so work the system and see what other options you have. Keeping your mother and you in my prayers.
    Hugs,
    Kirsten
  • maglets
    maglets Member Posts: 2,576 Member
    #16
    kmygil said:

    Hope on
    Hi Kelly,

    Keep on hoping. Get more opinions. Ask about the HIPEC; one of my friends just had that treatment and he is doing better. Know that doctors are human and can only go by what they know. What they don't know is how long we have, so work the system and see what other options you have. Keeping your mother and you in my prayers.
    Hugs,
    Kirsten

    Hold on Kelly
    here's another given 6 months to live...5 years later. Hold on Kelly and try to take one step at a time. I know it is so difficult to turn the "what ifs" off in your head.

    Keep moving forward, try to enjoy each day and do not give up hope.

    huge hugs

    mags
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #17
    Sorry
    Sorry to hear the news. Not sure the answer to that question, but doctors aren't always correct on time lines. Please seek another opinion and someone that could give you alternatives in conjunction with chemo. Good Luck

    Kim
  • Paula G.
    Paula G. Member Posts: 596
    #18
    Kelly get a second opinion.
    Kelly get a second opinion. She may very well respond to the chemo enough for surgery or other options people have mentioned. Don't give up hope and try to keep a clear head. It is very hard. People here have given great advice.Good luck, Paula

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