NED! Stage IV

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  • lisa42
    lisa42 Member Posts: 3,625 Member
    #22
    wouldn't that be awesome
    Wouldn't that be awesome if we could all celebrate NED in these next couple of weeks?
    I've always had such a strong faith, but I've had a hard time w/ it lately- I'm really going to be surprised if my scans this week show that I'm NED. It's just that I was told I was NED one other time, a little over a year ago, then I really wasn't- the reporting radiologist left some info out of my report & my doctor didn't catch everything himself. So, I found myself ecstatically celebrating, just to find out a few months later the stuff in my lungs never really was totally gone. I know God can do anything (I know He did help my rectal tumor to disappear last March), so I'm praying hard that either supernaturally or through the chemo that good things will come of this scan. I'm scared, too. I feel like if there's still stuff there this time (after 4 more months of chemo since my last scan), that kind of means that I'll always be fighting this. There's not really more I can take- I've done Folfox, can't take Erbitux due to my k-ras status, and have just done 7 months of irinotecan/Avastin/Xeloda. If this hasn't done it, I don't know what will!
    Sorry to sound down, I definitely like being the encourager to others more, but I just don't feel so great right now (physically either- it's been a cr**py week- literally!
  • kimby
    kimby Member Posts: 797
    #23
    lisa42 said:

    wouldn't that be awesome
    Wouldn't that be awesome if we could all celebrate NED in these next couple of weeks?
    I've always had such a strong faith, but I've had a hard time w/ it lately- I'm really going to be surprised if my scans this week show that I'm NED. It's just that I was told I was NED one other time, a little over a year ago, then I really wasn't- the reporting radiologist left some info out of my report & my doctor didn't catch everything himself. So, I found myself ecstatically celebrating, just to find out a few months later the stuff in my lungs never really was totally gone. I know God can do anything (I know He did help my rectal tumor to disappear last March), so I'm praying hard that either supernaturally or through the chemo that good things will come of this scan. I'm scared, too. I feel like if there's still stuff there this time (after 4 more months of chemo since my last scan), that kind of means that I'll always be fighting this. There's not really more I can take- I've done Folfox, can't take Erbitux due to my k-ras status, and have just done 7 months of irinotecan/Avastin/Xeloda. If this hasn't done it, I don't know what will!
    Sorry to sound down, I definitely like being the encourager to others more, but I just don't feel so great right now (physically either- it's been a cr**py week- literally!

    Lisa
    I'm there with you, girl! It is really hard some days to keep the spirits high, but we must. I've also done folfox, folfori, erbitux and currently xeloda,avastin and mitomycin. Not much left and that is very scary. It's gotta work this time, right?

    Yes, we may always be living with canzer. I've turned my fight into a negotiation - we can share the same body. My minister sister-in-law did a sermon on me and my status at Christmas time. She describes it as the lion laying down with the Lamb. As a Christian, I'm sure you get the reference and I LOVE it! A perfect analogy - the lion of canzer laying with the lamb of the human body vs the Biblical reference. We can do this because we're not alone. We have each other and we have Him.

    And I so understand about irinotecan and your crappy week! LOL

    Kimby
  • msccolon
    msccolon Member Posts: 1,917 Member
    #24
    good news!
    So glad to hear your news of NED! How did the Naked Happy Dance go?! Hope you are really enjoying your respite!
    mary
  • rrob
    rrob Member Posts: 158
    #25
    msccolon said:

    good news!
    So glad to hear your news of NED! How did the Naked Happy Dance go?! Hope you are really enjoying your respite!
    mary

    Naked Happy Dance!
    Mary,

    I just had to laugh--my Naked Happy Dance had to be a little subdued. I worked at my new job last Friday and, I'm sure due to new job shock, I absolutely did not like it. Then I spent my "free time" working on a mid-term exam that requires me to evaluate a company based on its financial statements and performance (another absolutely did not like) and finally, my septic tank had problems and was going to have to have a new lid to the tune of $750. Well, when the septic tank guys showed up 5 1/2 hours late, they proceeded to dig and tell me that my problem was not quite that simple or cheap. My home is about 40 to 50 years old, so when the septic system was put in, they didn't put in lateral lines. To make a long story short, I have to have a totally new system to the tune of around $4,000. So my Naked Happy Dance is going to be celebrated this afternoon, after I've turned in my mid-term and after the sticker shock goes away. The bright side is.....I still get to do a Naked Happy Dance, so I'll put up with all of the other any time!

    Lisa, I am so sorry you're having a tough time. Every time I hit a bump in the road, I feel sure that it's bad news, so I understand your feelings before this scan. I already posted about my oncology massage therapist who had her church pray for me before scans, but it's so good I'll tell it again. Her church believes in praying by thanking God for answering the prayer request. So, here is my prayer: God, thank you for healing Lisa and letting her scans come back clean. Thank you for healing Lisa, Kimby, and Mary. God, thank you for helping Amy's husband through his chemo treatments. Amen.

    I wish I could wave a magic wand, but I'm saying prayers instead.

    Rebecca
  • msccolon
    msccolon Member Posts: 1,917 Member
    #26
    rrob said:

    Naked Happy Dance!
    Mary,

    I just had to laugh--my Naked Happy Dance had to be a little subdued. I worked at my new job last Friday and, I'm sure due to new job shock, I absolutely did not like it. Then I spent my "free time" working on a mid-term exam that requires me to evaluate a company based on its financial statements and performance (another absolutely did not like) and finally, my septic tank had problems and was going to have to have a new lid to the tune of $750. Well, when the septic tank guys showed up 5 1/2 hours late, they proceeded to dig and tell me that my problem was not quite that simple or cheap. My home is about 40 to 50 years old, so when the septic system was put in, they didn't put in lateral lines. To make a long story short, I have to have a totally new system to the tune of around $4,000. So my Naked Happy Dance is going to be celebrated this afternoon, after I've turned in my mid-term and after the sticker shock goes away. The bright side is.....I still get to do a Naked Happy Dance, so I'll put up with all of the other any time!

    Lisa, I am so sorry you're having a tough time. Every time I hit a bump in the road, I feel sure that it's bad news, so I understand your feelings before this scan. I already posted about my oncology massage therapist who had her church pray for me before scans, but it's so good I'll tell it again. Her church believes in praying by thanking God for answering the prayer request. So, here is my prayer: God, thank you for healing Lisa and letting her scans come back clean. Thank you for healing Lisa, Kimby, and Mary. God, thank you for helping Amy's husband through his chemo treatments. Amen.

    I wish I could wave a magic wand, but I'm saying prayers instead.

    Rebecca

    septic troubles
    should have done the naked happy dance while the septic tank people were there, you might have been able to negotiate a lower fee ;)! Ick! Just remember, this too shall pass!
    mary
  • Sandi1
    Sandi1 Member Posts: 277
    #27
    Great News
    That's great news Rebecca. I'm just wondering, will you be on maintenance chemo for the rest of your life. My husband is stage 4 and they told him that he would be maintenance chemo for the rest of his life.

    Sandi
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #28
    Dear Rebecca and Kimby,

    Thank you for your kind words and for your prayers! I so appreciate them- and I needed to hear them!
    I woke up on the happier side of the bed this morning, so I believe I'll be fine. As much as I'm praying for NED, I know God holds me in his hands- I really do believe that.

    Thanks again & I'll keep you all informed when I get my results.
    Have a blessed day!
    Lisa
  • kmygil
    kmygil Member Posts: 876 Member
    #29
    Whoopie!!!
    Congratulations on remaining NED. Scan time is always anxious time. I'm so very, very pleased for you!

    Kirsten
  • rrob
    rrob Member Posts: 158
    #30
    Sandi1 said:

    Great News
    That's great news Rebecca. I'm just wondering, will you be on maintenance chemo for the rest of your life. My husband is stage 4 and they told him that he would be maintenance chemo for the rest of his life.

    Sandi

    Maintenance Chemo
    Sandi,

    When I originally started chemo, my oncologist told me I would be on chemo for the rest of my life, with short breaks, until the toxicity proved too great. However, after starting my treatment, my first scans showed NED, and have continued to be NED. My oncologist evidently met with the other oncologists in his group (probably 15 other oncologists) and their thought process is to monitor me every 3 months with scans and bloodwork, but not to treat me with chemo unless it is needed. So I have been off chemo since the end of June 2007. I'm so happy for you and your husband that he is doing so well. What chemo is he doing for maintenance? I'm curious as to the regimen they'll have him on.

    Rebecca
  • lizbiz
    lizbiz Member Posts: 120
    #31
    What wonderful news!
    I'd write more, but it's time to pray to the toilet God (good old CPT-11).

    Hope and prayers to all,
    Elizabeth
  • Sandi1
    Sandi1 Member Posts: 277
    #32
    rrob said:

    Maintenance Chemo
    Sandi,

    When I originally started chemo, my oncologist told me I would be on chemo for the rest of my life, with short breaks, until the toxicity proved too great. However, after starting my treatment, my first scans showed NED, and have continued to be NED. My oncologist evidently met with the other oncologists in his group (probably 15 other oncologists) and their thought process is to monitor me every 3 months with scans and bloodwork, but not to treat me with chemo unless it is needed. So I have been off chemo since the end of June 2007. I'm so happy for you and your husband that he is doing so well. What chemo is he doing for maintenance? I'm curious as to the regimen they'll have him on.

    Rebecca

    Maintenance Chemo
    Oddly enough, it will be the same regimen he just finished, just not as big of a dose. Do you have mets to your liver and lungs. My husband does, the oncologist told him that if he does not keep up with his chemo that it will come back, and be worse than the first time. I'm confused, and I feel betrayed. I feel like the oncologist lied to us, and just wants to keep him on chemo so she can keep getting paid. I would like to change oncologists but my husband likes her and trusts her.

    Thanks
    Sandi
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #33
    lisa42 said:

    Dear Rebecca and Kimby,

    Thank you for your kind words and for your prayers! I so appreciate them- and I needed to hear them!
    I woke up on the happier side of the bed this morning, so I believe I'll be fine. As much as I'm praying for NED, I know God holds me in his hands- I really do believe that.

    Thanks again & I'll keep you all informed when I get my results.
    Have a blessed day!
    Lisa

    Glad for this, Lisa....
    Your post last night made my heart so heavy. I'm so glad to see you happier today. I'm praying for you today.

    Diane
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #34
    rrob said:

    Hope and prayers
    To all of the semi-colon family,

    Thanks for all of your good wishes. The main thing I want to share with you is my hope. When I was diagnosed in Oct 2007 at Stage IV, no one, not my doctors and not me, thought I would be here now. Surprise--here I am and I'm NED. My prayer is that this gives you hope, too. I hope and pray that every day brings us one step closer to a cure, no matter what the stage, for all of us and for our families, our loved ones, our friends, and our children. Thank you again for all of your support.

    Hugs and hope for our tomorrows,

    Rebecca

    Almost 2 years NED?? That's wonderful!
    This really is great news!
  • taraHK
    taraHK Member Posts: 1,952 Member
    #35
    Yea!!
    Yea!! congratulations

    Tara
  • Glv49
    Glv49 Member Posts: 206 Member
    #36
    Great news! Congratulations
    Great news! Congratulations and God Bless

    Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #37
    lisa42 said:

    Dear Rebecca and Kimby,

    Thank you for your kind words and for your prayers! I so appreciate them- and I needed to hear them!
    I woke up on the happier side of the bed this morning, so I believe I'll be fine. As much as I'm praying for NED, I know God holds me in his hands- I really do believe that.

    Thanks again & I'll keep you all informed when I get my results.
    Have a blessed day!
    Lisa

    Glad you are feeling better, Lisa
    Sorry... I'm just catching up on posts so I didn't see your post until today. Do you think it was the chemo that was making you feel down, or just the fact you have to take it and what will be next once this chemo is over?

    I think that's where my anxiety comes from. Right now, I'm not on chemo or any kind of treatments... and as Martha Stewart would say, this is a GOOD thing. But the team of doctors seem to think it's just a matter of time and then I will have to go back on chemo.. this time it will be FOLFIRI and Avastin (the first 12 rounds were FOLFOX with 9 rounds of Oxy). I thought I handled the FOLFOX really well, but was glad when she cut the Oxy short since I did get bad neuropathy in my feet and still have it. She figures, if the mets on my lungs grow, even though I had "toxicity"?? from the FOLFOX, we will still try the FOLFIRI with the Avastin. But I haven't asked her what the plan will be if the FOLFIRI doesn't work... and that's what gives me anxiety. Not the "What if I need to go back on chemo" but "What if there is no more chemo to try?"

    I go for my follow up lung CAT scan on Friday and then the follow up appt. with the radiologist who did my lung ablation. I have no doubts the lung ablation is healing just fine... I'm a little concerned he is going to say there are more mets or the ones I have have grown. He's the one who was talking doom and gloom and just assumed it's a matter of time before they start growing and he thought I should go on chemo right then and there (my onc did not agree with that plan at all, and she's the chemotherapist) ;)

    Sooooo... all this "What if..." is enough to cause big anxiety, so I totally hear where you are coming from!! But when you feel like that... come back and post it here. Sometimes just writing down our anxieties and having other comment can lift up the spirits... and I am a firm believer that our state of mind and attitude will get us through and keep the beast submissive :)

    Huggggggs,

    Cheryl
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #38
    CherylHutch said:

    Glad you are feeling better, Lisa
    Sorry... I'm just catching up on posts so I didn't see your post until today. Do you think it was the chemo that was making you feel down, or just the fact you have to take it and what will be next once this chemo is over?

    I think that's where my anxiety comes from. Right now, I'm not on chemo or any kind of treatments... and as Martha Stewart would say, this is a GOOD thing. But the team of doctors seem to think it's just a matter of time and then I will have to go back on chemo.. this time it will be FOLFIRI and Avastin (the first 12 rounds were FOLFOX with 9 rounds of Oxy). I thought I handled the FOLFOX really well, but was glad when she cut the Oxy short since I did get bad neuropathy in my feet and still have it. She figures, if the mets on my lungs grow, even though I had "toxicity"?? from the FOLFOX, we will still try the FOLFIRI with the Avastin. But I haven't asked her what the plan will be if the FOLFIRI doesn't work... and that's what gives me anxiety. Not the "What if I need to go back on chemo" but "What if there is no more chemo to try?"

    I go for my follow up lung CAT scan on Friday and then the follow up appt. with the radiologist who did my lung ablation. I have no doubts the lung ablation is healing just fine... I'm a little concerned he is going to say there are more mets or the ones I have have grown. He's the one who was talking doom and gloom and just assumed it's a matter of time before they start growing and he thought I should go on chemo right then and there (my onc did not agree with that plan at all, and she's the chemotherapist) ;)

    Sooooo... all this "What if..." is enough to cause big anxiety, so I totally hear where you are coming from!! But when you feel like that... come back and post it here. Sometimes just writing down our anxieties and having other comment can lift up the spirits... and I am a firm believer that our state of mind and attitude will get us through and keep the beast submissive :)

    Huggggggs,

    Cheryl

    Diane and Cheryl
    Thanks Diane and Cheryl for your encouraging words. I actually have felt pretty peaceful about it all today. You're right, Cheryl, it's good to post it when we're feeling this way- others always help uplift us again! I was just feeling physically more down this week (I discovered I had a slight fever today- 99.5, not too bad, but enough to give me a headache and just want to sleep. And on your other "why" question- it probably is the thought of the "what if" for why I need to take chemo and what happens next if there's nothing left to take for it. Again... I believe God holds me in his hands & I have peace about that today. I'll post after I get results (mid to end of week).

    Take care-
    Lisa
  • rrob
    rrob Member Posts: 158
    #39
    Sandi1 said:

    Maintenance Chemo
    Oddly enough, it will be the same regimen he just finished, just not as big of a dose. Do you have mets to your liver and lungs. My husband does, the oncologist told him that if he does not keep up with his chemo that it will come back, and be worse than the first time. I'm confused, and I feel betrayed. I feel like the oncologist lied to us, and just wants to keep him on chemo so she can keep getting paid. I would like to change oncologists but my husband likes her and trusts her.

    Thanks
    Sandi

    Maintenance Chemo
    Sandi,

    I was on FOLFOX w/Avastin for my 6 months. I didn't have mets to my liver and lungs, instead my cc had spread to my ovaries (not something your husband would have to worry about!). They removed my ovaries, along with other bits and pieces, and then I had a second primary cancer within a month of my first surgery, an adenocarcinoma of the jejeunum. Big words, but they removed it with a resection and it had not spread, plus would also be treated the same way as my original cc. So the two surgeries removed my mets and the adenocarcinoma, but did not remove the area of my colon were it started. I did my 6 months of chemo, ending last June, with my scans showing NED from February 2008 on. This past December 2008, I had a colonoscopy and a resection to remove the original area where my cc started. My colonoscopy and the biopsy from the resection showed no trace and no microscopic evidence of disease. I had a PET scan December 30 and the one last week and they are still showing NED.

    Your husband's oncologist knows his situation, which is different from mine. If you are really concerned about continuing the chemo, you could get a 2nd opinion from a major cancer center. I'm not sure where you live, but Kimby has recently posted a link to find a major cancer center. Good luck and please keep me posted on how you both are doing.

    Rebeca

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