calling all long term stage IV lurkers

ittapp
ittapp Member Posts: 383 Member
edited March 2014 in Colorectal Cancer #1
I go onto other cancer sites and lurk, this is the only one that I post comments.So, I was wondering if their are any longterm stage IV's or at any stage, who are out there that may be lurking, that would come on and offer support and treatment plan? We have many on here posting and offering amazing help to others. Just wanted to invite you in to this wonderful group of survivors.God Bless, Patti
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Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    #2
    I
    Agree Patti, would be nice to hear from the others who are to shy.

    Hugsss!
    ~Donna
  • zenmonk
    zenmonk Member Posts: 198
    #3
    lurker
    you lurker
  • KATE58
    KATE58 Member Posts: 299
    #4
    OK,I ADMIT IT, I LURKED A
    OK,I ADMIT IT, I LURKED A FEW TIMES AND THOUGHT I DIDN'T WANT TO BE WHINING ON SOME WEB SITE OR HAVE SOMEONE WHINING TO ME.
    BUT I HAD A DREAM A FEW MONTHS AGO,I WOKE UP AND TRIED TO TALK TO PEOPLE BUT NO ONE COULD SEE ME OR HEAR ME. I SHOUTED IN PEOPLES' FACES AND IT WAS LIKE I WAS NOT THERE AT ALL.I TRIED TO GRAB THEM BUT MY HAND WENT RIGHT THRU THEM.I WOKE UP REALLY DISTURBED AND IT'S BOTHERED ME SOME SINCE.
    THEN WHEN I WAS 'LURKING' A FEW DAYS AGO I REALIZED, NO ONE WAS WHINING, THEY WERE JUST HAVING CONVERSATIONS AND EXCHANGING INFORMATION.I CAME ABOARD A COUPLE DAYS AGO AND I'M GLAD I DID. I HAVE A GOOD SUPPORT GROUP OF FRIENDS,WHO ARE VERY EMPATHETIC, BUT NONE HAVE CANCER,SO I WONDER SOMETIMES IF THEY EVEN KNOW WHAT I AM TALKING ABOUT.ANYHOOO,GLAD I'M HERE!
    GLAD YOU ARE ALL HERE! :-)
  • luv3jay
    luv3jay Member Posts: 533 Member
    #5
    KATE58 said:

    OK,I ADMIT IT, I LURKED A
    OK,I ADMIT IT, I LURKED A FEW TIMES AND THOUGHT I DIDN'T WANT TO BE WHINING ON SOME WEB SITE OR HAVE SOMEONE WHINING TO ME.
    BUT I HAD A DREAM A FEW MONTHS AGO,I WOKE UP AND TRIED TO TALK TO PEOPLE BUT NO ONE COULD SEE ME OR HEAR ME. I SHOUTED IN PEOPLES' FACES AND IT WAS LIKE I WAS NOT THERE AT ALL.I TRIED TO GRAB THEM BUT MY HAND WENT RIGHT THRU THEM.I WOKE UP REALLY DISTURBED AND IT'S BOTHERED ME SOME SINCE.
    THEN WHEN I WAS 'LURKING' A FEW DAYS AGO I REALIZED, NO ONE WAS WHINING, THEY WERE JUST HAVING CONVERSATIONS AND EXCHANGING INFORMATION.I CAME ABOARD A COUPLE DAYS AGO AND I'M GLAD I DID. I HAVE A GOOD SUPPORT GROUP OF FRIENDS,WHO ARE VERY EMPATHETIC, BUT NONE HAVE CANCER,SO I WONDER SOMETIMES IF THEY EVEN KNOW WHAT I AM TALKING ABOUT.ANYHOOO,GLAD I'M HERE!
    GLAD YOU ARE ALL HERE! :-)

    Welcome Kate! I lurked for
    Welcome Kate! I lurked for a while too, but I'm so glad I joined in! And sometimes I do tend to whine, but always feel better after my cyber friends cheer me up!

    -Sheri
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #6
    long term
    Hi
    I do post once in a while, and answer questions, I'm a bit over 5 years out now, stage 4 cc, tumor grew outside of colon, into overy and positive in lymph nodes. Doing well, have CEA level and colonoscopy coming up soon, keeping an eye on lesion on liver, they think is just hemangenoma (sp?) a cluster of blood vesels. Lump found in breast, mammogram looked good, not appearing to be ca, so everything staying stable! 50 years old and now I'm in college, looking forward to graduating and finding a job, I hope. I only made it through 7 of 12 chemo treatments, had a colostomy for about a year, and had it reversed. So, there is a lot of hope even when stage 4, I don't think a lot of the doctors expected me to go this long without a reoccurance, but I am very glad I have made it this far! Best hopes for all who are fighting their battles, and hope my story gives hope to all.
    Pam
  • ittapp
    ittapp Member Posts: 383 Member
    #7
    PamPam2 said:

    long term
    Hi
    I do post once in a while, and answer questions, I'm a bit over 5 years out now, stage 4 cc, tumor grew outside of colon, into overy and positive in lymph nodes. Doing well, have CEA level and colonoscopy coming up soon, keeping an eye on lesion on liver, they think is just hemangenoma (sp?) a cluster of blood vesels. Lump found in breast, mammogram looked good, not appearing to be ca, so everything staying stable! 50 years old and now I'm in college, looking forward to graduating and finding a job, I hope. I only made it through 7 of 12 chemo treatments, had a colostomy for about a year, and had it reversed. So, there is a lot of hope even when stage 4, I don't think a lot of the doctors expected me to go this long without a reoccurance, but I am very glad I have made it this far! Best hopes for all who are fighting their battles, and hope my story gives hope to all.
    Pam

    Thanks for posting guys, I
    Thanks for posting guys, I knew it was a long shot to get lurkers out of their comfort level. Would still love to hear from you! Patti
  • ganders2
    ganders2 Member Posts: 13
    #8
    Another lurker coming in
    I too have been lurking on this board since my original dx 5/08. Like many others, the dx was a major shock, especially being Stage IV since I actually had a colonoscopy just 4 years previously and was told that the polyps were benign.
    so I had a resection and chemo, Foxfox with Avastin, and finally RFA for the final lesions. The ca came back and I started 5FU, Leucovorin and Avastin in July. So far, so good -my labs are good and the last MRI showed reduction in the lesions.
    I can't tell you how helpful it has been to read the posts on this board - there is an awful lot of wisdom, love, and help here.
    If anyone has any questions about the treatments I have had, I am more than happy to answer.
    Thank you all for being the very bright lights that you are!
  • ittapp
    ittapp Member Posts: 383 Member
    #9
    ganders2 said:

    Another lurker coming in
    I too have been lurking on this board since my original dx 5/08. Like many others, the dx was a major shock, especially being Stage IV since I actually had a colonoscopy just 4 years previously and was told that the polyps were benign.
    so I had a resection and chemo, Foxfox with Avastin, and finally RFA for the final lesions. The ca came back and I started 5FU, Leucovorin and Avastin in July. So far, so good -my labs are good and the last MRI showed reduction in the lesions.
    I can't tell you how helpful it has been to read the posts on this board - there is an awful lot of wisdom, love, and help here.
    If anyone has any questions about the treatments I have had, I am more than happy to answer.
    Thank you all for being the very bright lights that you are!

    Thank you for coming on and
    Thank you for coming on and posting. I too am stage IV since May of 09 and this is still new to me. I am so encouraged that you are doing well. I am inoperable right now and they don't even want to do RFA on me now. So, I wait and pray for good results. My cea was elevated at chemo on Wed. I am having it re tested on Monday. God Bless, Patti
  • mcsauder
    mcsauder Member Posts: 68
    #10
    Hi everyone
    Hi everyone
    I'm new at this and trying my hardest on write things down
    But one thing I would like to say is I like to read donna's postings she is always upbeat and has an positive things to say
    PS
    Don't look at my spelling and grammar
  • Shayenne
    Shayenne Member Posts: 2,342
    #11
    mcsauder said:

    Hi everyone
    Hi everyone
    I'm new at this and trying my hardest on write things down
    But one thing I would like to say is I like to read donna's postings she is always upbeat and has an positive things to say
    PS
    Don't look at my spelling and grammar

    Awwww....
    Thank you sweetheart, I think a load of people here have helped me come to being positive, and helped me here in dark times, and I hope to be able to do the same, I just like to put a smile on peoples faces :)

    And don't worry about the spelling and grammar, heck, I'm sure not good at it either LOL


    Hugsss!
    ~Donna
  • geotina
    geotina Member Posts: 2,111 Member
    #12
    Lurker
    Went from lurker to joiner last month. Hubby Stage IV colon cancer. I didnt' have a lot of questions at first because of all the info already on here, especially about side effects that the doc does not tell you about which avoided a lot of anxiety. During our initial six months of treatment only had to call he onc office one time due to a fever because I was able to read about side effects, in English, on this board. Tina
  • ittapp
    ittapp Member Posts: 383 Member
    #13
    geotina said:

    Lurker
    Went from lurker to joiner last month. Hubby Stage IV colon cancer. I didnt' have a lot of questions at first because of all the info already on here, especially about side effects that the doc does not tell you about which avoided a lot of anxiety. During our initial six months of treatment only had to call he onc office one time due to a fever because I was able to read about side effects, in English, on this board. Tina

    So glad to have you all
    So glad to have you all coming on and posting, my brother is the one who found this site for me. I was welcomed with open arms! I can't tell you how it got me through my dark times. I still get the blues but have come a long way with the support with this site. Thanks again to everyone, I know I keep saying that but I mean it!!1 Patti
  • pluckey
    pluckey Member Posts: 484 Member
    #14
    I lurk and post occasionally
    Hi Patti -

    I do find this board to be extraordinary! I wish I can meet you all in person- Craig, Buzzard, Donna etc..

    I was dx'd 3/2009 Stage 4 with mets to liver. I am not resectable at this time. Just finished 12 rounds of 5-FU,Erbatux,Leaucavorin. Wednesday I will meet with interventioanl radiologist for TheraSpheres treatment. Hoping to further reduce liver tumors so I can get part of the liver resected.

    Keep us posted on your treatments, concerns and questions. so many wonderful people will help!

    Peggy
  • Shayenne
    Shayenne Member Posts: 2,342
    #15
    pluckey said:

    I lurk and post occasionally
    Hi Patti -

    I do find this board to be extraordinary! I wish I can meet you all in person- Craig, Buzzard, Donna etc..

    I was dx'd 3/2009 Stage 4 with mets to liver. I am not resectable at this time. Just finished 12 rounds of 5-FU,Erbatux,Leaucavorin. Wednesday I will meet with interventioanl radiologist for TheraSpheres treatment. Hoping to further reduce liver tumors so I can get part of the liver resected.

    Keep us posted on your treatments, concerns and questions. so many wonderful people will help!

    Peggy

    OoOo
    Let me know how it goes Peggy with the Theraspheres, I think they may be looking at that down the road for me as well, if chemo stops working, I'd like to hear how that goes~ good luck with the meeting, hope it all goes well!

    Hugsss!
    ~Donna
  • ittapp
    ittapp Member Posts: 383 Member
    #16
    pluckey said:

    I lurk and post occasionally
    Hi Patti -

    I do find this board to be extraordinary! I wish I can meet you all in person- Craig, Buzzard, Donna etc..

    I was dx'd 3/2009 Stage 4 with mets to liver. I am not resectable at this time. Just finished 12 rounds of 5-FU,Erbatux,Leaucavorin. Wednesday I will meet with interventioanl radiologist for TheraSpheres treatment. Hoping to further reduce liver tumors so I can get part of the liver resected.

    Keep us posted on your treatments, concerns and questions. so many wonderful people will help!

    Peggy

    Hey Peggy, I also met with
    Hey Peggy, I also met with an Interventional Radiologist, he said to continue chemo and get the most out of it and then do Sir spheres no sure if that is the same thing. Did your chemo stop working or are they just doing this for the liver? Patti
  • suenj8
    suenj8 Member Posts: 3
    #17
    pluckey said:

    I lurk and post occasionally
    Hi Patti -

    I do find this board to be extraordinary! I wish I can meet you all in person- Craig, Buzzard, Donna etc..

    I was dx'd 3/2009 Stage 4 with mets to liver. I am not resectable at this time. Just finished 12 rounds of 5-FU,Erbatux,Leaucavorin. Wednesday I will meet with interventioanl radiologist for TheraSpheres treatment. Hoping to further reduce liver tumors so I can get part of the liver resected.

    Keep us posted on your treatments, concerns and questions. so many wonderful people will help!

    Peggy

    lurking
    I've been looking for a way to try to help other people dealing with cancer. I have now been in complete remission for a year but was diagnose 9/2007 with Stage IV colon cancer with mets to lymph nodes,spine and liver and was considered nonresectable. First chemo was folfox with oxaliplatin, 5fu, avastin. Spot on spine radiated Dec 07. Mixed results after 10 wks of folfox. Onc switched to folfiri Spring 08 and had great results and felt much better - everything shrank some enabling me to have surgery. Surgery at Fox Chase - Philadelphia. Plan was to microwave liver mets while surgeon was removing part of my colon and ovaries. While in there she ultrasounded my liver twice and called in a radiologist to help. She could find nothing wrong with my liver!

    Histology from section of colon and area lymph nodes indicated adenocarcinoma in colon and highgrade (poorly differentiated) neuroendocrine carcinoma in lymph nodes. Plan after surgery was another round of chemo. Onc and I chose to use CPT 11 and Cisplatin as I had great results from the CPT 11 and Cisplatin has been proven to work on what I have. Was scared of chemo fog but turns out did not need to be. Completed my 4 rounds November 2008. Pet Dec 2008 and all ct scans since indicate I am in complete remission (and hope it stays that way!)

    Hopefully my story will help others. Advice is get tested and know the specific type of cancer you are dealing with - not just what body part is affected. Keep faith you will survive by living each day and showing your love. We are all rooting for you!
    Sue
  • mvancott
    mvancott Member Posts: 8
    #18
    suenj8 said:

    lurking
    I've been looking for a way to try to help other people dealing with cancer. I have now been in complete remission for a year but was diagnose 9/2007 with Stage IV colon cancer with mets to lymph nodes,spine and liver and was considered nonresectable. First chemo was folfox with oxaliplatin, 5fu, avastin. Spot on spine radiated Dec 07. Mixed results after 10 wks of folfox. Onc switched to folfiri Spring 08 and had great results and felt much better - everything shrank some enabling me to have surgery. Surgery at Fox Chase - Philadelphia. Plan was to microwave liver mets while surgeon was removing part of my colon and ovaries. While in there she ultrasounded my liver twice and called in a radiologist to help. She could find nothing wrong with my liver!

    Histology from section of colon and area lymph nodes indicated adenocarcinoma in colon and highgrade (poorly differentiated) neuroendocrine carcinoma in lymph nodes. Plan after surgery was another round of chemo. Onc and I chose to use CPT 11 and Cisplatin as I had great results from the CPT 11 and Cisplatin has been proven to work on what I have. Was scared of chemo fog but turns out did not need to be. Completed my 4 rounds November 2008. Pet Dec 2008 and all ct scans since indicate I am in complete remission (and hope it stays that way!)

    Hopefully my story will help others. Advice is get tested and know the specific type of cancer you are dealing with - not just what body part is affected. Keep faith you will survive by living each day and showing your love. We are all rooting for you!
    Sue

    Inspirational- my husband
    Inspirational- my husband was just diagnosed with stage IV colon cancer with no symptoms! A radiologist oncologist said he has 6 months to 2 years and that people do not survive it!!!
  • ittapp
    ittapp Member Posts: 383 Member
    #19
    mvancott said:

    Inspirational- my husband
    Inspirational- my husband was just diagnosed with stage IV colon cancer with no symptoms! A radiologist oncologist said he has 6 months to 2 years and that people do not survive it!!!

    What a horrible thing to
    What a horrible thing to hear, my Dr.said about two years and I fell apart. Where else is your husband have it in the body? How old is he? have they talked about any other treatment besides chemo, assuming he has chemo? Not to be nosey just wanting to know if I can help. I am cc with mets to liver and had it in my peritenum and omentum lymphnodes. Chemo knocked out what was in the b elly but has grown in the live with a few more new spots. So, Dr. changed chemo. Praying for this one to do the trick. God Bless, Patti
  • idarochny
    idarochny Member Posts: 13
    #20
    lurkers
    My name is Ida and I am a lurker. I try to write but don't always feel comfortable. I have stage IV colon cancer and have had a colon resection followed by 15 chemo treatments. My PET scan is Tuesday(12/8). This discussion board has given me great hope! Thank you all.
  • ittapp
    ittapp Member Posts: 383 Member
    #21
    idarochny said:

    lurkers
    My name is Ida and I am a lurker. I try to write but don't always feel comfortable. I have stage IV colon cancer and have had a colon resection followed by 15 chemo treatments. My PET scan is Tuesday(12/8). This discussion board has given me great hope! Thank you all.

    welcome, stay aboard and ask
    welcome, stay aboard and ask any questions, or offer support.when were you diagnosed? let us know how your scan comes out. I will pray for you. God Bless, Patti

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