First posting

Sharon57
Sharon57 Member Posts: 4
edited March 2014 in Colorectal Cancer #1
I am so glad to have found this discussion board. My husband was diagnosed in Sept., with Stage IV cancer, mets to liver and lung. We were devastated, and thought it was all over. Fortunately the oncologist on call at the hospital was wonderful and gave us much hope. Jerry started chemo and has tolerated it very well. His CEA counts have been steadily decreasing, although still high--but it does look like the treatment is working.

A friend suggested I explore this site, and it has helped so much to read your stories. It has given us a great deal of hope and also great information. We will continue the fight, knowing there are a lot of folks out there that are also sharing this journey. Thanks to you all and may we all have a great New Year.

Comments

  • ittapp
    ittapp Member Posts: 383 Member
    #2
    Welcome, I am also stage IV
    Welcome, I am also stage IV with mets in the liver (inoperable)at this point, I was dx in May of 09. To tell you the truth other than chemo days I feel better that I have felt in a long time. I am a candidate for Sir Spheres procedure, that will be happening in January. You can google sirspheres and get the low down. I will be keeping everyone updated along the way. Good luck with your chemo, I am so glad you found us. It is really like family here. God Bless you, Patti ( Feel free to ask me any questions, if I can help I would love to do so)
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    Welcome Sharon
    Hi Sharon,

    Welcome to the board- sorry you're here because of your husband Jerry's stage IV diagnosis. I am also stage IV- was diagnosed w/ mets to liver and lungs in Aug. 2007. 2-1/2 yrs later I'm still around- still fighting- but am feeling good most of the time and actually feel quite hopeful. I remember all too well that horrible gutwrenching helpless and hopeless feeling of thinking I was going to die soon after I was diagnosed. There IS HOPE, as you have now read about by several stage IV survivors on this site! I'm doing an "off market" treatment now. Although I haven't had a scan yet to see exactly what's it's doing inside me, I just FEEL like it's working. My CEA has stopped rising since starting on it 3-1/2 wks ago, which is a good sign since it had been steadily rising prior to that.

    Well, as difficult as dealing with cancer is- especially stage IV cancer- don't despair. Don't let the opinions and comments of others get you down(and those "sad looks" that well meaning people will now give you and your husband)- most people just aren't knowledgeable on what the latest in cancer treatments and possibilities. The word I hate hearing or seeing the most is that my diagnosis is "terminal" because it's stage IV. My doctors never used that word with me- I just happened to see it on a form that my onc had filled out for me to qualify for disability. I know they have to make it sound really, really bad on those forms, but it was still like a punch in the gut seeing that. My onc then told me that he doesn't really think of me that way, but it's the technical term that goes along with a stage IV diagnsos. I believe that is now changing!! Many doctors now realize there's hope and that there are people who have been diagnosed stage IV, then have become NED (no evidence of disease- the more modern term for "in remission").

    I will pray that your husband will do well on chemo. My prayer has always been for myself, "maximum effect with minimum side effects", so that will be my prayer for your husband, as well.

    Take care,
    Lisa
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #4
    lisa42 said:

    Welcome Sharon
    Hi Sharon,

    Welcome to the board- sorry you're here because of your husband Jerry's stage IV diagnosis. I am also stage IV- was diagnosed w/ mets to liver and lungs in Aug. 2007. 2-1/2 yrs later I'm still around- still fighting- but am feeling good most of the time and actually feel quite hopeful. I remember all too well that horrible gutwrenching helpless and hopeless feeling of thinking I was going to die soon after I was diagnosed. There IS HOPE, as you have now read about by several stage IV survivors on this site! I'm doing an "off market" treatment now. Although I haven't had a scan yet to see exactly what's it's doing inside me, I just FEEL like it's working. My CEA has stopped rising since starting on it 3-1/2 wks ago, which is a good sign since it had been steadily rising prior to that.

    Well, as difficult as dealing with cancer is- especially stage IV cancer- don't despair. Don't let the opinions and comments of others get you down(and those "sad looks" that well meaning people will now give you and your husband)- most people just aren't knowledgeable on what the latest in cancer treatments and possibilities. The word I hate hearing or seeing the most is that my diagnosis is "terminal" because it's stage IV. My doctors never used that word with me- I just happened to see it on a form that my onc had filled out for me to qualify for disability. I know they have to make it sound really, really bad on those forms, but it was still like a punch in the gut seeing that. My onc then told me that he doesn't really think of me that way, but it's the technical term that goes along with a stage IV diagnsos. I believe that is now changing!! Many doctors now realize there's hope and that there are people who have been diagnosed stage IV, then have become NED (no evidence of disease- the more modern term for "in remission").

    I will pray that your husband will do well on chemo. My prayer has always been for myself, "maximum effect with minimum side effects", so that will be my prayer for your husband, as well.

    Take care,
    Lisa

    Hello
    Hey Sharon,
    I was diagnosed stage 3 I had a resection and did 12 rounds of chemo..Was NED(no evidence of disease) for 7 months then it came back to my liver...The reason I am telling you this is that one oncologist told me my liver was inoperable and to come back in 3 months and we will take it from there...Well my hubby and I was not willing to except that answer and went for a second opinion..I just had a consult with a liver specialist and this doc told me I have lots of options..I had a MRI and now waiting to hear from him on what course of treatment we are going to do.....So there are ALWAYS options...What one doc says doesn't mean its so...Good luck and make sure you ask questions and do research..You and your hubby are his best advactes....Keep us post and don't be afraid to ask us anything..We have all been there and done that in one way or another....JULIE
  • krf
    krf Member Posts: 98
    #5
    Welcome Sharon! You are not
    Welcome Sharon! You are not alone!
    My husband was diagnosed at the end of July with stage IV rectal cancer. He has mets to the liver and in the peritoneal lining. He is on his 9th treatment of Folfox + Avastin. He is doing great- has had a 30% shrinkage since beginning treatment on Sept. 1.
    I am also pretty new to this board, and like you, have found the stories and information here very helpful.
    Sorry you are here, sorry everyone is here, but I am grateful to you and all the others on this board that are sharing this journey.

    Kim
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
    Hi Sharon
    Hi Sharon,
    Welcome to the board, we're glad you found us. Everyone on this board is tremendous help, so full of info and hope. This community has been wonderful for my husband and me.

    Aloha,
    Kathleen
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Welcome
    I am so sorry you had to find this site due to your husband's diagnosis, but you have found a great group. We here are diversified so able to help you and your husband get through this terrible journey in your life. But we are all survivors and here to help. If you have a question, please post it at anytime as there is usually someone here at all hours. Glad you and your husband have hope - that is the most important part of this journey.

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Hi
    Sharon,

    Welcome to the board. I hope we can be of help to you and your husband. We have a wonderfully supportive group here.

    Sounds like y'all have a great attitude. Keep us posted on his progress.

    *hugs*
    Gail
  • JDuke
    JDuke Member Posts: 438
    #9
    Annabelle41415 said:

    Welcome
    I am so sorry you had to find this site due to your husband's diagnosis, but you have found a great group. We here are diversified so able to help you and your husband get through this terrible journey in your life. But we are all survivors and here to help. If you have a question, please post it at anytime as there is usually someone here at all hours. Glad you and your husband have hope - that is the most important part of this journey.

    Kim

    Hi Sharon,
    Welcome! As others have stated we wish you didn't have the necessity of finding this site, but it has been a Godsend for me. Whatever you need in the way of support you will find waiting for you here, anytime day or night. Caring, experience, wisdom, reality, humor, and HOPE come to mind when I think of what I have received in the short time I have been here.
    I hope you find comfort in knowing that there are others that truly understand and care.
    Warmly,
    Joanne
  • amcp
    amcp Member Posts: 251 Member
    #10
    welcome
    I too am a caregiver. My husband was diagnosed stage IV colorectal cancer with multiple mets to the liver in Aug 2006. He has had a colostomy surgery, 2 plus years of chemo, 75% of the right lobe of his liver removed, 4% of the right lung removed, even been NED for a few months, but now he is in a Phase 1 clinical trial at Vanderbilt. Everyday is a blessing and a victory against cancer. There is ALWAYS HOPE!! Stay strong, live each day to the fullest, and keep fighting. This site has been such a support and help to me and I pray that it is for you too. Will add you to the prayer list.
    Anna
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • pf78248
    pf78248 Member Posts: 209
    #12
    Great support from this group
    Dear Sharon,
    I always hate to read about another diagnosis of cancer, but you really have come to the best discussion and support group ever! My husband David is also stage 4, diagnosed in April 2008 as stage 3, NED for two months and then the cancer spread to his liver. So we've been at this for a while and my husband is doing quite well. He was told his liver tumor was inoperable, but we sought a third opinion at M D Anderson in Houston and he is scheduled for a liver resection in February.

    Please feel free to ask questions. This is a wonderful group of cancer survivors and caregivers who will do their best to help you navigate these difficult times. And know that others care and will keep you and your family in your thoughts and prayers. There is hope and amazing treatments out there so be proactive and don't ever give up. I know you are probably still in shock and confusion, but the more you learn the better you can fight this beast. Please let me know if there is anything I can do to help you.

    Hugs to you both!
    Priscilla
  • Shayenne
    Shayenne Member Posts: 2,342
    #13
    pf78248 said:

    Great support from this group
    Dear Sharon,
    I always hate to read about another diagnosis of cancer, but you really have come to the best discussion and support group ever! My husband David is also stage 4, diagnosed in April 2008 as stage 3, NED for two months and then the cancer spread to his liver. So we've been at this for a while and my husband is doing quite well. He was told his liver tumor was inoperable, but we sought a third opinion at M D Anderson in Houston and he is scheduled for a liver resection in February.

    Please feel free to ask questions. This is a wonderful group of cancer survivors and caregivers who will do their best to help you navigate these difficult times. And know that others care and will keep you and your family in your thoughts and prayers. There is hope and amazing treatments out there so be proactive and don't ever give up. I know you are probably still in shock and confusion, but the more you learn the better you can fight this beast. Please let me know if there is anything I can do to help you.

    Hugs to you both!
    Priscilla

    Welcome Sharon and Jerry!
    How are you both? Yep, cancer sure sucks, but it's going to be ok! I am also Stage 4 cc with mets to the liver that is inoperable right now. I was dx'd on Jan 18, last year! almost a year ago, still on chemo, tumors have shrunk, but my liver tumors look like "shattered glass" on my liver, probably in places they can't get too, but I am so hopeful and pray one day that God will heal it, and now take it just day by day, life is so precious, so make sure he doesn't dwell on the up and down emotional rollercoaster that also comes with it. Anti-Depressants and anti-anxiety meds do help with that, and don't be afraid to ask for it. Make sure you get wonderful anti-nausea meds as well, like Emend, and Zofran and Dexamethasone when he starts chemo. The chemo nurses will take good care of the both of you, they are angels.

    We are here to help you through this, we are all brothers and sisters in cancer, that goes to the family members and caregivers who know someone with cancer, or are taking care of someone with cancer, everyone is welcomed, and it's a pleasure to meet you! Please post away on anything you need to know about. We're here :)

    Hugsss!
    ~Donna
  • Lawlak
    Lawlak Member Posts: 21
    #14
    The bad news in that your
    The bad news is that your husband is in the same boat as all of us, we are all going to die at some point. Now having said that, your husband can have a long good survival period and there are occasional cases of full blown cures to stage four patients. I was diagnosed five years ago with stage three and then went to stage four almost three years ago. Try not to waste time that you have today worrying about what might or might not happen. I spent the first year of treatment thinking I was going to be dead within six months and here I am five years later with very small amounts of cancer. The medicines have really improved during the past 5-7 years and there are promising new medicines and techniques in the pipe line.

    I know it is like being run over by a truck, again and again, but with time you can adjust to your new circumstances and enjoy some of what life has to offer. I would also suggest, if you are not already doing so, go to a major cancer clinic like MD Anderson in Houston or Sloan Kettering in NY to get another opinion on your husbands care. He is probably getting exactly the right treatment but the research centers have options not available at non-research facilities.

    The last thing I would add is that I don't often post but I read almost every new posting. The people on this board have a tremendous amount of knowledge and are more than willing to share it with you.

    Tony

Discussion Boards