Recent Stage IV Diagnosis

sfmarie
sfmarie Member Posts: 602
edited March 2014 in Colorectal Cancer #1
My sister, age 39 with three small children, was recently diagnosed with Stage IV colon cancer. She had NO symptoms, and ended up in the ER after severe stomach pains. Emergency surgery revealed the cancer, mets to the liver and peritoneum. She has done 5 months of aggressive chemo; CEA levels went down, but still hovering at just under 100. She is hoping to have her liver resectioned. We would love to hear from some Stage IV survivors that have a similar experience. Research online is not that encouraging. She is being treated at a NCI cancer center, which after reading the posts, we are thankful for. Thank you.
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Comments

  • ittapp
    ittapp Member Posts: 383 Member
    Hello, I am 41 with two
    Hello, I am 41 with two children 13 and 10, Dx. in May 09 stage IV with liver mets and in stomach and 9 lymphnodes. I have completed 4 Chemo treatments of Folfox with Avastan.My CEA was 15 when I started and after my waiting 6 wks. after my colon resection my CEA went to 89.5. After two treatments my CEA level went to 21.9. I am new to this as well and very scared but praying that my scans will look good in between my 5 and 6 treatment.Tell your sister to come on here and talk with all of us. It has helped me. God Bless Patti
  • amcp
    amcp Member Posts: 251 Member
    HOPE
    CLICK ON MY NAME amcp IN THE BLUE BOX AND YOU CAN READ MY HUSBAND'S BATTLE WITH THIS MONSTER. HE JUST HAD LIVER RESECTION DONE ON APRIL 30 OF THIS YEAR AND IS DOING GOOD. AT LAST SCAN THERE WAS NO EVIDENCE OF DISEASE BUT CEA WAS STILL 39.6 BUT DOCTOR WAS PLEASED WHEN SHE LOOKED AND SAW THAT IT WAS 221.6 FOUR WEEKS BEFORE. KEEP POSITIVE...THERE ARE SO MANY GREAT AND HOPEFUL STORIES HEAR. PEOPLE ON THIS SITE ARE AMAZING. THEY HELPED ME GET THROUGH SOME ROUGH TIMES AND STILL DO. GOOD LUCK AND I WILL KEEP YOUR SISTER AND YOU IN MY PRAYERS.
    HUGS
    ANNA
  • ittapp
    ittapp Member Posts: 383 Member
    ittapp said:

    Hello, I am 41 with two
    Hello, I am 41 with two children 13 and 10, Dx. in May 09 stage IV with liver mets and in stomach and 9 lymphnodes. I have completed 4 Chemo treatments of Folfox with Avastan.My CEA was 15 when I started and after my waiting 6 wks. after my colon resection my CEA went to 89.5. After two treatments my CEA level went to 21.9. I am new to this as well and very scared but praying that my scans will look good in between my 5 and 6 treatment.Tell your sister to come on here and talk with all of us. It has helped me. God Bless Patti

    I forgot to add that my
    I forgot to add that my liver can't be resected at this time, have to wait but Onc. is wanting them to melt away and avoid surgery....Not sure if that is possible but all things are possible with the Lord. So, I wait...Has your sister had a scan? what was her CEA levels when she starte and how many treatments has she had? Patti
  • sfmarie
    sfmarie Member Posts: 602
    amcp said:

    HOPE
    CLICK ON MY NAME amcp IN THE BLUE BOX AND YOU CAN READ MY HUSBAND'S BATTLE WITH THIS MONSTER. HE JUST HAD LIVER RESECTION DONE ON APRIL 30 OF THIS YEAR AND IS DOING GOOD. AT LAST SCAN THERE WAS NO EVIDENCE OF DISEASE BUT CEA WAS STILL 39.6 BUT DOCTOR WAS PLEASED WHEN SHE LOOKED AND SAW THAT IT WAS 221.6 FOUR WEEKS BEFORE. KEEP POSITIVE...THERE ARE SO MANY GREAT AND HOPEFUL STORIES HEAR. PEOPLE ON THIS SITE ARE AMAZING. THEY HELPED ME GET THROUGH SOME ROUGH TIMES AND STILL DO. GOOD LUCK AND I WILL KEEP YOUR SISTER AND YOU IN MY PRAYERS.
    HUGS
    ANNA

    Thank you for your story
    It is amazing and inspiring to read your husbands journey. It is comforting to share with others that have been through this. I will ask her to join this board. Thank you for replying.
  • sfmarie
    sfmarie Member Posts: 602
    ittapp said:

    I forgot to add that my
    I forgot to add that my liver can't be resected at this time, have to wait but Onc. is wanting them to melt away and avoid surgery....Not sure if that is possible but all things are possible with the Lord. So, I wait...Has your sister had a scan? what was her CEA levels when she starte and how many treatments has she had? Patti

    Such a similar story
    I read your story and it is so similar to my sister's. She was diagnosed in March of 09. She too, had a tremendous pain in her abdomen. She went to the ER and after many tests, was diagnosed. She had a tumor that grew outside of her colon, but penetrated the colon and was causing the pain and blockage. She had surgery the next day and had her colon resected and her ovaries removed. She has had 4 months of chemo, continuous, with the same 48 hours drip Her levels when she started were close to 500, and they are now just under 100. They have been at that marker for the past month. I believe in faith, hope and a positive attitude are key, and she has all of those things. I appreciate you sharing your story and will ask her to join this board. I am so inspired by the survivor stories. I will keep you and your family in my prayers. marie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Long Time Stage IV...
    Hi Marie

    Click on my name and you will see my story and its unique joourney...I'm under way in my 6th year, so the fight has been a long one...but I'm still here to tell about it. I'm at the CROSSROADS in my journey right now and am trying to nail down which path I will take after we take some more scans and compare those with the previous and decide if its going to be another surgery...mets to the pleura of my right lung. The last 2 months trying to get this all sorted out has taken awhile, but hopefully in another 3 weeks or so, the verdict will be in.

    I'm living proof that you can live with Cancer for a number of years, and I've got no plans on checking out yet.

    Take care and please keep us all posted...we can all do it together. So great that you found the site - it will be a lifeline during your darkest and brightest hours!

    -Craig
  • eric38
    eric38 Member Posts: 583
    Sundanceh said:

    Long Time Stage IV...
    Hi Marie

    Click on my name and you will see my story and its unique joourney...I'm under way in my 6th year, so the fight has been a long one...but I'm still here to tell about it. I'm at the CROSSROADS in my journey right now and am trying to nail down which path I will take after we take some more scans and compare those with the previous and decide if its going to be another surgery...mets to the pleura of my right lung. The last 2 months trying to get this all sorted out has taken awhile, but hopefully in another 3 weeks or so, the verdict will be in.

    I'm living proof that you can live with Cancer for a number of years, and I've got no plans on checking out yet.

    Take care and please keep us all posted...we can all do it together. So great that you found the site - it will be a lifeline during your darkest and brightest hours!

    -Craig

    I`ve only been at this game
    I`ve only been at this game for a little over 4 months. I`m stage 4 with 3 - 4 mets to liver and active lymphs throughout my abdominal and pelvic region. The Doc believes that I am responding well to treatment and may even already be in remission. I won`t know for sure for another week or so but even if I am not in remission he believes I will show significant improvement. I`m telling you this so you will know that it is possible to come a long way in a short period of time when it comes to treatment for this type of cancer. It`s also possible to beat this or live with it for many years. There are people on here that will amaze you with their testimonies. No matter how bad you have it there is always someone who had it worse and beat it.

    Eric

    p.s.

    Pay attention to the people that have been at this for a while. They know what they are talking about.
  • sfmarie
    sfmarie Member Posts: 602
    Sundanceh said:

    Long Time Stage IV...
    Hi Marie

    Click on my name and you will see my story and its unique joourney...I'm under way in my 6th year, so the fight has been a long one...but I'm still here to tell about it. I'm at the CROSSROADS in my journey right now and am trying to nail down which path I will take after we take some more scans and compare those with the previous and decide if its going to be another surgery...mets to the pleura of my right lung. The last 2 months trying to get this all sorted out has taken awhile, but hopefully in another 3 weeks or so, the verdict will be in.

    I'm living proof that you can live with Cancer for a number of years, and I've got no plans on checking out yet.

    Take care and please keep us all posted...we can all do it together. So great that you found the site - it will be a lifeline during your darkest and brightest hours!

    -Craig

    Thank you for sharing
    Craig,

    Your story and strength are inspiring. I will keep you in my prayers.

    Thank you for responding.

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    eric38 said:

    I`ve only been at this game
    I`ve only been at this game for a little over 4 months. I`m stage 4 with 3 - 4 mets to liver and active lymphs throughout my abdominal and pelvic region. The Doc believes that I am responding well to treatment and may even already be in remission. I won`t know for sure for another week or so but even if I am not in remission he believes I will show significant improvement. I`m telling you this so you will know that it is possible to come a long way in a short period of time when it comes to treatment for this type of cancer. It`s also possible to beat this or live with it for many years. There are people on here that will amaze you with their testimonies. No matter how bad you have it there is always someone who had it worse and beat it.

    Eric

    p.s.

    Pay attention to the people that have been at this for a while. They know what they are talking about.

    Fantastic
    Eric,

    Your news of your great progress in beating this is great! I am glad the chemo is working. Thanks for the words of HOPE.

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    eric38 said:

    I`ve only been at this game
    I`ve only been at this game for a little over 4 months. I`m stage 4 with 3 - 4 mets to liver and active lymphs throughout my abdominal and pelvic region. The Doc believes that I am responding well to treatment and may even already be in remission. I won`t know for sure for another week or so but even if I am not in remission he believes I will show significant improvement. I`m telling you this so you will know that it is possible to come a long way in a short period of time when it comes to treatment for this type of cancer. It`s also possible to beat this or live with it for many years. There are people on here that will amaze you with their testimonies. No matter how bad you have it there is always someone who had it worse and beat it.

    Eric

    p.s.

    Pay attention to the people that have been at this for a while. They know what they are talking about.

    Fantastic
    Eric,

    Your news of your great progress in beating this is great! I am glad the chemo is working. Thanks for the words of HOPE.

    Marie
  • KFen725
    KFen725 Member Posts: 108 Member
    eric38 said:

    I`ve only been at this game
    I`ve only been at this game for a little over 4 months. I`m stage 4 with 3 - 4 mets to liver and active lymphs throughout my abdominal and pelvic region. The Doc believes that I am responding well to treatment and may even already be in remission. I won`t know for sure for another week or so but even if I am not in remission he believes I will show significant improvement. I`m telling you this so you will know that it is possible to come a long way in a short period of time when it comes to treatment for this type of cancer. It`s also possible to beat this or live with it for many years. There are people on here that will amaze you with their testimonies. No matter how bad you have it there is always someone who had it worse and beat it.

    Eric

    p.s.

    Pay attention to the people that have been at this for a while. They know what they are talking about.

    So great!
    Eric, that is fantastic! Your case seems very similar to my mom's, so I am VERY glad to hear you have responded so well to the chemo. Hoping & praying for a FULL remission for ya, buddy!
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    Totally understand!
    Hello!

    I can totally relate to your sister's diagnosis. I was 33, and my kids were 2, 4,& 7 when I was diagnosed almost 8 yrs ago (Oct, 2001). I have been clear ever since my surgery in Jan 2002. Mine was also liver mets with lymph node involvement. Take each day as it comes! Some days will be "conquer the world" days, while others are totally "pajamas" days...both are acceptable. I had 5 FU, Leucovorin, and camposar. I still have my port...aka, my security blanket. I had an ileostomy which was reversed after 9 months. Let me know if I can help. Sometimes it helps to hear from us on this board who really mean it when we say, "I understand."

    Hugs,
    Stacy
  • sfmarie
    sfmarie Member Posts: 602

    Totally understand!
    Hello!

    I can totally relate to your sister's diagnosis. I was 33, and my kids were 2, 4,& 7 when I was diagnosed almost 8 yrs ago (Oct, 2001). I have been clear ever since my surgery in Jan 2002. Mine was also liver mets with lymph node involvement. Take each day as it comes! Some days will be "conquer the world" days, while others are totally "pajamas" days...both are acceptable. I had 5 FU, Leucovorin, and camposar. I still have my port...aka, my security blanket. I had an ileostomy which was reversed after 9 months. Let me know if I can help. Sometimes it helps to hear from us on this board who really mean it when we say, "I understand."

    Hugs,
    Stacy

    Thank you for sharing
    Stacy-

    Thank you! I love hearing your story and I am sorry you are battling this disease. I have told my sister to join this board and let her know about you and your courage and strength!

    Many hugs and prayers your way.

    Marie
  • eric38
    eric38 Member Posts: 583
    sfmarie said:

    Thank you for sharing
    Stacy-

    Thank you! I love hearing your story and I am sorry you are battling this disease. I have told my sister to join this board and let her know about you and your courage and strength!

    Many hugs and prayers your way.

    Marie

    ( : . )
    Kfen - Thanks for being my cheering section. I will let you know how my scan turns out. If it turns out to be as positive as the doctor suspects maybe it will make you feel better about your mother`s situation.

    Stacy - Thanks for the post. You are an inspiration.

    Eric
  • Devasted
    Devasted Member Posts: 185

    Totally understand!
    Hello!

    I can totally relate to your sister's diagnosis. I was 33, and my kids were 2, 4,& 7 when I was diagnosed almost 8 yrs ago (Oct, 2001). I have been clear ever since my surgery in Jan 2002. Mine was also liver mets with lymph node involvement. Take each day as it comes! Some days will be "conquer the world" days, while others are totally "pajamas" days...both are acceptable. I had 5 FU, Leucovorin, and camposar. I still have my port...aka, my security blanket. I had an ileostomy which was reversed after 9 months. Let me know if I can help. Sometimes it helps to hear from us on this board who really mean it when we say, "I understand."

    Hugs,
    Stacy

    question
    Stacy,

    It's always so encouraging to hear these stories vs. reviewing the stats on the internet.
    Did you have a liver resection? My husband was dx in May 09- stage 4 rectal cancer.
    They did a PET scan and only liver mets showed up and oncol. seemed to think that
    was good...liver specialist thought 5 mets were too spread out and it was "advanced"
    stage.... He just completed 6 weeks of xeloda and radiation and did great, minim. side effects. Next is CT scan and ultrasound. Then maybe folox / avastin for 3 months and surgery?
    His CEA was 10 at the initial dr. visit.

    Any thoughts? Thanks for your encouraging post! It gives me hope.
    We have one son, he's tweleve.....
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Devasted said:

    question
    Stacy,

    It's always so encouraging to hear these stories vs. reviewing the stats on the internet.
    Did you have a liver resection? My husband was dx in May 09- stage 4 rectal cancer.
    They did a PET scan and only liver mets showed up and oncol. seemed to think that
    was good...liver specialist thought 5 mets were too spread out and it was "advanced"
    stage.... He just completed 6 weeks of xeloda and radiation and did great, minim. side effects. Next is CT scan and ultrasound. Then maybe folox / avastin for 3 months and surgery?
    His CEA was 10 at the initial dr. visit.

    Any thoughts? Thanks for your encouraging post! It gives me hope.
    We have one son, he's tweleve.....

    When diagnosed
    When I was diagnosed I had 5 bilobar mets that were spread apart. 3 were in the left lobe, one in the right and one between the left and right lobes. First oncologist said inoperable. Second oncologist said "close" to resection. 5 chemo treatments and then had liver resection, entire left lobe removed and 2 wedge resections for the right one and middle one. Liver re-generated in about 6-8 weeks and currently NED (although still doing adjuvant chemo).
  • Devasted
    Devasted Member Posts: 185
    mom_2_3 said:

    When diagnosed
    When I was diagnosed I had 5 bilobar mets that were spread apart. 3 were in the left lobe, one in the right and one between the left and right lobes. First oncologist said inoperable. Second oncologist said "close" to resection. 5 chemo treatments and then had liver resection, entire left lobe removed and 2 wedge resections for the right one and middle one. Liver re-generated in about 6-8 weeks and currently NED (although still doing adjuvant chemo).

    That's great

    It is so helpful to know there is hope...Thanks so much!

    What type of chemo treatments did you have before resection?
    What type of chemo are you doing now?
  • Paula G.
    Paula G. Member Posts: 596
    sfmarie
    We are also new to this. My husband was DX in Oct. of last year and has mets to the liver and lungs and a small spot on one of his adrenal glands. He is on treatment #11. This site has been such a help to us. We have found so many people that are living with this. So much information that has helped us. Read people's post's and their stories and I am sure you will feel better. We have learned so much about different treatments and gained many friends. Good luck to your sis.Paula G.
  • sfmarie
    sfmarie Member Posts: 602
    Devasted said:

    question
    Stacy,

    It's always so encouraging to hear these stories vs. reviewing the stats on the internet.
    Did you have a liver resection? My husband was dx in May 09- stage 4 rectal cancer.
    They did a PET scan and only liver mets showed up and oncol. seemed to think that
    was good...liver specialist thought 5 mets were too spread out and it was "advanced"
    stage.... He just completed 6 weeks of xeloda and radiation and did great, minim. side effects. Next is CT scan and ultrasound. Then maybe folox / avastin for 3 months and surgery?
    His CEA was 10 at the initial dr. visit.

    Any thoughts? Thanks for your encouraging post! It gives me hope.
    We have one son, he's tweleve.....

    Devastated
    Initially my sister was told she only had 2 months to live. That was the stupidity of the doctor in the er, someone who clearly did not have experience with the disease. That was in March of 09. One doctor also told her there was nothing he could do for her, and this was at UCLA! Now, we are with a fantastic team at Stanford with a liver surgeon who thinks he can resect. She did complete 4 months of chemo. That helped shrink some of the tumors, enough to operate. I liked one survivor on here, Amy, who said, she found an oncologist that said I cannot predict outcomes. Everyone reacts differently and I will treat you as aggressively as you can and want to be treated.
    So-do not give up! There are so many options that I know your husband can and will beat this. It sounds like he is responding well. My sister has three children: 8, 6 and 4. I will keep you and your family in my prayers. PM if I can be of any assistance. I have found comfort in this board and the kindness of strangers here.
  • ittapp
    ittapp Member Posts: 383 Member
    Paula G. said:

    sfmarie
    We are also new to this. My husband was DX in Oct. of last year and has mets to the liver and lungs and a small spot on one of his adrenal glands. He is on treatment #11. This site has been such a help to us. We have found so many people that are living with this. So much information that has helped us. Read people's post's and their stories and I am sure you will feel better. We have learned so much about different treatments and gained many friends. Good luck to your sis.Paula G.

    How is your husband doing?
    How is your husband doing? Patti