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Stage IV - now NED

I haven't posted or read much on the message boards as I have a med-onc family member, but I recognize the value of this forum and the support it provides to so many - so thank you all.

This is to those newly diagnosed - *THERE IS HOPE*. I was diagnosed with stage IV in March 2011 with one liver met. At the time I was 46 years old, very healthy, physically active, with no risk factors or family history - but there it is. I am now NED, and hoping and praying that future tests continue to show NED-ness. My treatment was 3 months of chemo (FOLFOX+Avastin), then liver surgery to remove one lobe, then another 3 months of chemo, then the partial colon resection.

Jim

Comments

  • buckeye2
    buckeye2 Member Posts: 428
    Sending hopes of many more
    Sending hopes of many more NED years for you. Congratulations! Lisa
  • sdp
    sdp Member Posts: 181
    Hi
    Hi jim,

    You are very fortunate to be NED and I pray that it stays that way.

    I was dx 31st dec 2011 with cancer in column and several metatsases to all segments of liver.

    The largest in liver being 11 cm x 7 cm x 8 cm.

    The Docs in India, where I am, have started me on FOLFOX and erbitux.

    Have had three cycles so far , the fourth treatment is next week.

    Have side effects of rash due to erbitux, was hospitalised once as my WBC after second
    Folfox treatment went down to 1000 and I had a fever for two days.

    Neupogen shots gave me side effect of extreme pain in thighs and lower back which
    Lasted several hours and i found difficulty in walking for few hours.

    I am also taking supplements for enhancing immunity, such as turmeric, AHCC, sprulina,
    Juicing on wheatgrass, and on flax seed oil - sort of a bit on bud wig but not entirely.
    For side effects I take R alpha lipoic acid and L glutamine at times for neuropathy.

    I also do yoga three days a week for an hour.

    I would appreciate if you can share your details treatment and supplements.

    Also, pl ask your family doc if I am on the correct path.
    I would appreciate whatever help , support , and information that u can provide.

    Sdp ( shitul)
  • sdp
    sdp Member Posts: 181
    Want to be NED - from stage 4
    Hi jim,

    You are very fortunate to be NED and I pray that it stays that way.

    I was dx 31st dec 2011 with cancer in column and several metatsases to all segments of liver.

    The largest in liver being 11 cm x 7 cm x 8 cm.

    The Docs in India, where I am, have started me on FOLFOX and erbitux.

    Have had three cycles so far , the fourth treatment is next week.

    Have side effects of rash due to erbitux, was hospitalised once as my WBC after second
    Folfox treatment went down to 1000 and I had a fever for two days.

    Neupogen shots gave me side effect of extreme pain in thighs and lower back which
    Lasted several hours and i found difficulty in walking for few hours.

    I am also taking supplements for enhancing immunity, such as turmeric, AHCC, sprulina,
    Juicing on wheatgrass, and on flax seed oil - sort of a bit on bud wig but not entirely.
    For side effects I take R alpha lipoic acid and L glutamine at times for neuropathy.

    I also do yoga three days a week for an hour.

    I would appreciate if you can share your details treatment and supplements.

    Also, pl ask your family doc if I am on the correct path.
    I would appreciate whatever help , support , and information that u can provide.

    Sdp ( shitul)
  • lauragb
    lauragb Member Posts: 370
    Here's to a long future of
    Here's to a long future of NEDness!
    Congratulations!

    More healing light to you.
    Laura
  • tommycat
    tommycat Member Posts: 790
    lauragb said:

    Here's to a long future of
    Here's to a long future of NEDness!
    Congratulations!

    More healing light to you.
    Laura

    Ditto Laura---and thanks for
    Ditto Laura---and thanks for sharing your story!
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 520
    Congratulations
    Jim,
    Great to hear the good news. Prayers for your continued NED Status.
    NB
  • xbarjoe
    xbarjoe Member Posts: 7
    NED
    Congrats Jim! Hope the future continues to be bright for you.

    Ron
  • kmygil
    kmygil Member Posts: 876
    YAY!
    Congratulations, Jim!!!! I am so very happy for you! NED are the best letters in the world, aren't they? I am now NED for 5 years and know how hard you worked to get that way. Now STAY that way!!!
    Hugs,
    Kirsten
  • Sonia32
    Sonia32 Member Posts: 1,071
    Congrats
    No matter if it's ned for today or until your 75, it's good to read that word.
  • plh4gail
    plh4gail Member Posts: 1,238
    Congratulations on the great
    Congratulations on the great news! And thank you for sharing it...it's what we all need to hear! Celebrate life!

    plh4gail
  • peterz54
    peterz54 Member Posts: 341
    sdp said:

    Want to be NED - from stage 4
    Hi jim,

    You are very fortunate to be NED and I pray that it stays that way.

    I was dx 31st dec 2011 with cancer in column and several metatsases to all segments of liver.

    The largest in liver being 11 cm x 7 cm x 8 cm.

    The Docs in India, where I am, have started me on FOLFOX and erbitux.

    Have had three cycles so far , the fourth treatment is next week.

    Have side effects of rash due to erbitux, was hospitalised once as my WBC after second
    Folfox treatment went down to 1000 and I had a fever for two days.

    Neupogen shots gave me side effect of extreme pain in thighs and lower back which
    Lasted several hours and i found difficulty in walking for few hours.

    I am also taking supplements for enhancing immunity, such as turmeric, AHCC, sprulina,
    Juicing on wheatgrass, and on flax seed oil - sort of a bit on bud wig but not entirely.
    For side effects I take R alpha lipoic acid and L glutamine at times for neuropathy.

    I also do yoga three days a week for an hour.

    I would appreciate if you can share your details treatment and supplements.

    Also, pl ask your family doc if I am on the correct path.
    I would appreciate whatever help , support , and information that u can provide.

    Sdp ( shitul)

    supplements

    You will probably want to check out information provided by the Angiogenesis Foundation on foods which have research to support their impact on preventing or slowing cancer growth.

    http://www.angio.org/understanding/diet.php

    http://www.angio.org/
  • TMac52
    TMac52 Member Posts: 352
    plh4gail said:

    Congratulations on the great
    Congratulations on the great news! And thank you for sharing it...it's what we all need to hear! Celebrate life!

    plh4gail

    Hey Jim
    Congrats Jim, Your an inspiration to all. Thanks for sharing.
    Tom
  • Kenny H.
    Kenny H. Member Posts: 502
    TMac52 said:

    Hey Jim
    Congrats Jim, Your an inspiration to all. Thanks for sharing.
    Tom

    Nice report. Hope I can say
    Nice report. Hope I can say the same one day. (mets to lungs tho)
  • joemetz
    joemetz Member Posts: 493
    Awesome News Jim
    Jim

    congrats on the great news of being NED.

    I am a lot like you... but was dx'd November 2011, instead of March 2011.

    I'm so excited to read your news. You have inspired me today.

    Joe.
  • wmcbane
    wmcbane Member Posts: 33
    Also stage iv & NED going on 2 years
    To all the newly diagnosed & terrified: you see here, in our stories and journeys, that there is reason for hope & optimism. I was dx in sept. 2009 with stage iv rectal cancer, one met in the liver, age 53, busy professionally, single mom, teenage chilldren still at home. How bleak & horrifying & unfair it was. Now -- after radiation, chemo, several surgeries, i am status NED. Will be having another f/u CT Monday, hoping to stay that way. While everyone's case is different, some doing better, some worse, there is hope. Thank goodness for the information & support on this board and good doctors of duke.
  • barbebarb
    barbebarb Member Posts: 464
    wmcbane said:

    Also stage iv & NED going on 2 years
    To all the newly diagnosed & terrified: you see here, in our stories and journeys, that there is reason for hope & optimism. I was dx in sept. 2009 with stage iv rectal cancer, one met in the liver, age 53, busy professionally, single mom, teenage chilldren still at home. How bleak & horrifying & unfair it was. Now -- after radiation, chemo, several surgeries, i am status NED. Will be having another f/u CT Monday, hoping to stay that way. While everyone's case is different, some doing better, some worse, there is hope. Thank goodness for the information & support on this board and good doctors of duke.

    Stage IV colon cancer-ENCOURAGEMENT WELCOMED
    Thank you for your inspiration. I was diagnosed stage IV - lung mets and 1 liver met and had left lung lobe removed 2 weeks ago. Tomorrow I see lung and liver surgeon to schedule 2nd surgery (other) side lung wedge and liver wedge. The plan is chemo rounds after healed from surgery. I have a 20 & 22 year old young adults with me. This discussion board and information helps me stay positive on this rocky road. I am 53 also and had stage I in 2008. I was feeling great, exercising, etc., and a chest - ray led to lung nodules, biopsy, and diagnosis. I am being treated at N. Western Hospital in Chicago. I wish you the best on your CT.
    God bless u and your family
  • janderson1964
    janderson1964 Member Posts: 2,215
    That is great news. I am NED
    That is great news. I am NED for the third time over the past 6+ years.
  • barbebarb
    barbebarb Member Posts: 464
    stage iv too
    Hi Jim
    how are you doing? I had a left lung lobectomy and am healing. Will have a right tumor wedge and liver wedge next. My diagnosis was a shock and I was feeling great.I was stage I in 2008.
    My friends are great support and my doctors are positive but I am struggling at times with being positive.
    I find this board helpful. Was the surgery for your liver painful? My lobectomy has been painful but I am now walking up my street uphill and plan to increase distance.
    Barb
    Great news for NED!