It seems my previous question was difficult to understand , here it goes again!.

pepebcn
pepebcn Member Posts: 6,331
edited May 2011 in Colorectal Cancer #1
What I mean is, if you got some minor Mets ,primary already sorted out and operated successfully ,We know that is very possible to make them despair just with chemo,So no tumor evidence so technically NED, not Cured,I know!.Ok if not tumor evidence ,nothing to operate!( it happened once to me).Question :Any body in this situation has achieved more than a few months with not evidence of tumors or CEA Rising?. I think betsydoglover would be an example!..
Thankyou!
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Comments

  • SisterSledge
    SisterSledge Member Posts: 332
    Good question!
    I'm kinda wondering the same thing...I'm stage4, mets to liver...no cancer elsewhere. I've been on chemo for a few months and have recently been told that my tumors have shrunk enough to consider liver resection (awaiting a meeting with Huntsman Cancer Center surgeon when Medicaid is approved). Since I'm not having bad reactions to chemo and I'm scared of the surgery, it would seem easier on me to just do chemo until the tumors are gone.

    However, I'm led to understand that the tumors will not continue to decrease from chemo indefinitely...in fact, my Dr Doom says that this chemo I'm using will stop working sooner rather than later. Then, if liver is not resectionable, we'd need to change chemo to continue getting positive results.

    Also, since all chemo drugs seem to stop being effective at some point for most people, it is best to reserve chemo usage for when surgery isn't an option.
  • pepebcn
    pepebcn Member Posts: 6,331

    Good question!
    I'm kinda wondering the same thing...I'm stage4, mets to liver...no cancer elsewhere. I've been on chemo for a few months and have recently been told that my tumors have shrunk enough to consider liver resection (awaiting a meeting with Huntsman Cancer Center surgeon when Medicaid is approved). Since I'm not having bad reactions to chemo and I'm scared of the surgery, it would seem easier on me to just do chemo until the tumors are gone.

    However, I'm led to understand that the tumors will not continue to decrease from chemo indefinitely...in fact, my Dr Doom says that this chemo I'm using will stop working sooner rather than later. Then, if liver is not resectionable, we'd need to change chemo to continue getting positive results.

    Also, since all chemo drugs seem to stop being effective at some point for most people, it is best to reserve chemo usage for when surgery isn't an option.

    Yes but what's on if you get free of tumors ?
    What means chemo not working forever ?,what would happen if once free of tumors you stop chemo?No chance of staying free of it for long term? .
    What's the difference to be operated and NED or necrosed with chemo and NED as well? Considering cancerous cells wouldn't be in the tumors removed or killed any more, they use to be in the blood flow or lymphatic system so..... both can't be operated so must be killed with chemo,.Resuming don't you think to get free of cancer once you got a met is not more a question of chemo than surgery?.How those mets arrived there from the colon ? via blood or lymph system not via the primary tumor by it self!.
    Well interesting question !
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    pepebcn said:

    Yes but what's on if you get free of tumors ?
    What means chemo not working forever ?,what would happen if once free of tumors you stop chemo?No chance of staying free of it for long term? .
    What's the difference to be operated and NED or necrosed with chemo and NED as well? Considering cancerous cells wouldn't be in the tumors removed or killed any more, they use to be in the blood flow or lymphatic system so..... both can't be operated so must be killed with chemo,.Resuming don't you think to get free of cancer once you got a met is not more a question of chemo than surgery?.How those mets arrived there from the colon ? via blood or lymph system not via the primary tumor by it self!.
    Well interesting question !

    Hi Pepe,
    I am Stage IV and had surgery to remove primary tumor in the rectum 12 lymph nodes removed(7 tested positive) and met removed from liver in Nov 2009. I followed with mop up chemo from Nov 2009 to June of 2010 and was cancer free or NED for about 10 months. Then in March of this year found mets in my lungs. Some people will remain NED for years some don't. Why?? I have no idea. Now I am on 5-Fu to prevent growth and my oncologist insist that they will never go away unless surgically removed but I am not a candidate. Can't wait to prove him wrong!! Hope that helps:) Melissa
  • mukamom
    mukamom Member Posts: 402
    Lilmiss82 said:

    Hi Pepe,
    I am Stage IV and had surgery to remove primary tumor in the rectum 12 lymph nodes removed(7 tested positive) and met removed from liver in Nov 2009. I followed with mop up chemo from Nov 2009 to June of 2010 and was cancer free or NED for about 10 months. Then in March of this year found mets in my lungs. Some people will remain NED for years some don't. Why?? I have no idea. Now I am on 5-Fu to prevent growth and my oncologist insist that they will never go away unless surgically removed but I am not a candidate. Can't wait to prove him wrong!! Hope that helps:) Melissa

    The way I look at it
    cancer is as unique as the person that it has invaded. Regular protocols for your type of cancer pretty much works (to an extent) as a whole. Sometimes it doesn't. Maybe cancer cells mutate according to your genetic make up in order to survive. Maybe your genetic make up does't allow for the cancer to mutate or spread. I think it is a crap shoot.

    Just my .01 cent worth ;-}

    Angela
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Good question!
    I'm kinda wondering the same thing...I'm stage4, mets to liver...no cancer elsewhere. I've been on chemo for a few months and have recently been told that my tumors have shrunk enough to consider liver resection (awaiting a meeting with Huntsman Cancer Center surgeon when Medicaid is approved). Since I'm not having bad reactions to chemo and I'm scared of the surgery, it would seem easier on me to just do chemo until the tumors are gone.

    However, I'm led to understand that the tumors will not continue to decrease from chemo indefinitely...in fact, my Dr Doom says that this chemo I'm using will stop working sooner rather than later. Then, if liver is not resectionable, we'd need to change chemo to continue getting positive results.

    Also, since all chemo drugs seem to stop being effective at some point for most people, it is best to reserve chemo usage for when surgery isn't an option.

    I love how you call your
    I love how you call your onc. Dr. Doom....mine seems to be the same. I think maybe some of these cells are sitting somewhere, on liver or lungs but just are not big enough to be detected by scans. They've travelled via the blood or lymph nodes till they set themselves somewhere and start to grow. Hopefully chemo. will wipe these suckers out before they have an impact. What I don't get is if the chemo is floating around your system why these don't get wiped out when they are just cells floating about. Why do they need to become a tumor before you see the results of chemo. shrinking mets. Or perhaps a lot are wiped out this way, but some escape?? Seems some people are fortunate enough to have these things wiped out and not reappear later, from what I've seen there are a few on here who have gone NED for a long while.
  • John23
    John23 Member Posts: 2,122

    Good question!
    I'm kinda wondering the same thing...I'm stage4, mets to liver...no cancer elsewhere. I've been on chemo for a few months and have recently been told that my tumors have shrunk enough to consider liver resection (awaiting a meeting with Huntsman Cancer Center surgeon when Medicaid is approved). Since I'm not having bad reactions to chemo and I'm scared of the surgery, it would seem easier on me to just do chemo until the tumors are gone.

    However, I'm led to understand that the tumors will not continue to decrease from chemo indefinitely...in fact, my Dr Doom says that this chemo I'm using will stop working sooner rather than later. Then, if liver is not resectionable, we'd need to change chemo to continue getting positive results.

    Also, since all chemo drugs seem to stop being effective at some point for most people, it is best to reserve chemo usage for when surgery isn't an option.

    Pepe’ & Sis….
    Re:
    ”…..it would seem easier on me to just do chemo until the tumors are gone.
    …..However, I'm led to understand that the tumors will not continue to decrease
    from chemo indefinitely...”


    This gets confusing.

    Chemo can’t kill a cancer cell, if it can’t identify it as a cancer cell. That’s the
    problem with today’s technology. The chemicals kill just fine - like an atom bomb,
    and just as arbitrary of a killer as an atom bomb. The bigger problem, is that there
    isn’t technology to aim the bomb accurately, or deliver the bomb to the exact
    target….. it’s like an Iraqi scud missile.

    So (as far as my understanding goes), when/if the tumor shrinks to a small size,
    the chemicals lose the target. The cancer that remains is still strong enough to
    remain alive, and will eventually grow in size once again.

    I know I’ve typed this before, but: There’s some newer studies that seem
    to indicate that the immune system often becomes sensitized to the chemicals
    that dying cancer cells release. If the immune system is strong enough after
    being bombarded with those atom bombs, it often seeks out and destroys
    the balance of cancer cells that remain.

    It makes sense enough, that many oncologists are now using less chemicals
    for shorter durations, and using a “wait and see” approach, rather than the
    old “keep pumping poison until they drop” mentality.

    I hate cancer.

    Stay well, please.

    John
  • SisterSledge
    SisterSledge Member Posts: 332
    John23 said:

    Pepe’ & Sis….
    Re:
    ”…..it would seem easier on me to just do chemo until the tumors are gone.
    …..However, I'm led to understand that the tumors will not continue to decrease
    from chemo indefinitely...”


    This gets confusing.

    Chemo can’t kill a cancer cell, if it can’t identify it as a cancer cell. That’s the
    problem with today’s technology. The chemicals kill just fine - like an atom bomb,
    and just as arbitrary of a killer as an atom bomb. The bigger problem, is that there
    isn’t technology to aim the bomb accurately, or deliver the bomb to the exact
    target….. it’s like an Iraqi scud missile.

    So (as far as my understanding goes), when/if the tumor shrinks to a small size,
    the chemicals lose the target. The cancer that remains is still strong enough to
    remain alive, and will eventually grow in size once again.

    I know I’ve typed this before, but: There’s some newer studies that seem
    to indicate that the immune system often becomes sensitized to the chemicals
    that dying cancer cells release. If the immune system is strong enough after
    being bombarded with those atom bombs, it often seeks out and destroys
    the balance of cancer cells that remain.

    It makes sense enough, that many oncologists are now using less chemicals
    for shorter durations, and using a “wait and see” approach, rather than the
    old “keep pumping poison until they drop” mentality.

    I hate cancer.

    Stay well, please.

    John

    thanks John
    This makes it clear to me why they prescribe a specified amount of chemo cycles when designating treatment. I had wondered about that. I think there's more to learn about this cancer stuff than I'll be able to comprehend so I'm grateful for the shared opinions and ideas of those who have had time/ability to learn more.

    I hate cancer too...and there are so few things in this life I use the word "hate" for, that you gotta know I'm serious :(
  • pepebcn
    pepebcn Member Posts: 6,331

    thanks John
    This makes it clear to me why they prescribe a specified amount of chemo cycles when designating treatment. I had wondered about that. I think there's more to learn about this cancer stuff than I'll be able to comprehend so I'm grateful for the shared opinions and ideas of those who have had time/ability to learn more.

    I hate cancer too...and there are so few things in this life I use the word "hate" for, that you gotta know I'm serious :(

    OK i agree with most you say but that was not the question
    the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    pepebcn said:

    OK i agree with most you say but that was not the question
    the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!.

    i hope so for all our sakes
    hi pepe,

    but my surgeon said even if chemoradiation completely killed the tumour, i had a great response, they said. nothing on pet, nothing on ct or mri he still went ahead and cutout tumour scars/remnants because everytime the cutout tumour is studied some active cancer cells remain.

    its a different senario and hopefully chemo on its own can do it, for some yes and for some no.

    as i understand it, its the cancers ability to adapt and evolve that is how it gets around the chemo.

    good question,

    Pete

    ps of course the natural solutions like tumeric, reseretrol, blueberries, vit d etc etc etc
    and exercise will help, a dash of meditation also helps.
  • John23
    John23 Member Posts: 2,122
    pepebcn said:

    OK i agree with most you say but that was not the question
    the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!.

    Pepe' -
    Re:
    "the question was ,if anybody had achieved some time of NED just
    by having chemo,i did it and i think must be many others out there!."


    Ok, for my two centavo's worth:

    I guess I get confused with the "NED" situation and the concern
    to have "reached NED"...

    I was "NED" for many, many years prior to my first diagnosis
    of colon cancer. They also said it probably took 7 or 8 years for
    the tumor to grow that big! Imagine that? I was NED for over
    eight years while the damned thing was in there, eating away!

    It makes me wonder just how many people are walking around,
    that have had yearly check-ups, physicals, colonoscopy, etc,
    without ever having any indication of a cancer growing within?
    That's being "NED".

    Personally, for me, being told that "we can't say for sure the cancer
    is gone", suits me better than being told I'm "NED".

    It's called "semantics" in our language. It's the use of an alternate word,
    or statement, to make a situation sound different.... The same "meaning"
    but said using different, words.... (did I explain that right?)

    So, in the context that you're asking the question? Anyone, and
    probably -everyone- can achieve "NED" with chemo, radiation,
    or surgery alone. We all were "NED" right up to the day of our
    diagnosis, right?

    The use of semantics is a great sales tool; it can change the illusion
    of a product to suit the needs of an individual. And of course, we
    all use the concept daily in normal conversation, to either avoid
    arguments, or start 'em. (haha)

    I.E. "That dress make you look fat" vs "It really enhances your figure".

    So anyway, great to hear you're doing great! I am hoping to see
    you around for a long, long time!

    I wish I could do something to keep us -all- around for a long, long time!

    Stay healthy!

    John

    PS:

    No-one, that has ever had a diagnosis of cancer, should ever
    let their guard down, or become complacent to any "good sounding"
    report concerning the absence of signs of cancer.

    That -is not- to say that we should go around 24/7/365 in total fear
    that cancer is lurking within, or allow the thought of it to consume us.

    It's the idea that we should not assume that we are in the clear,
    and go back to the lifestyle of ignoring signs of ill health, and by
    taking medications that hide symptoms.


    .
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    John23 said:

    Pepe' -
    Re:
    "the question was ,if anybody had achieved some time of NED just
    by having chemo,i did it and i think must be many others out there!."


    Ok, for my two centavo's worth:

    I guess I get confused with the "NED" situation and the concern
    to have "reached NED"...

    I was "NED" for many, many years prior to my first diagnosis
    of colon cancer. They also said it probably took 7 or 8 years for
    the tumor to grow that big! Imagine that? I was NED for over
    eight years while the damned thing was in there, eating away!

    It makes me wonder just how many people are walking around,
    that have had yearly check-ups, physicals, colonoscopy, etc,
    without ever having any indication of a cancer growing within?
    That's being "NED".

    Personally, for me, being told that "we can't say for sure the cancer
    is gone", suits me better than being told I'm "NED".

    It's called "semantics" in our language. It's the use of an alternate word,
    or statement, to make a situation sound different.... The same "meaning"
    but said using different, words.... (did I explain that right?)

    So, in the context that you're asking the question? Anyone, and
    probably -everyone- can achieve "NED" with chemo, radiation,
    or surgery alone. We all were "NED" right up to the day of our
    diagnosis, right?

    The use of semantics is a great sales tool; it can change the illusion
    of a product to suit the needs of an individual. And of course, we
    all use the concept daily in normal conversation, to either avoid
    arguments, or start 'em. (haha)

    I.E. "That dress make you look fat" vs "It really enhances your figure".

    So anyway, great to hear you're doing great! I am hoping to see
    you around for a long, long time!

    I wish I could do something to keep us -all- around for a long, long time!

    Stay healthy!

    John

    PS:

    No-one, that has ever had a diagnosis of cancer, should ever
    let their guard down, or become complacent to any "good sounding"
    report concerning the absence of signs of cancer.

    That -is not- to say that we should go around 24/7/365 in total fear
    that cancer is lurking within, or allow the thought of it to consume us.

    It's the idea that we should not assume that we are in the clear,
    and go back to the lifestyle of ignoring signs of ill health, and by
    taking medications that hide symptoms.


    .

    Awwe Pepe I think I'm losing
    Awwe Pepe I think I'm losing something in the translation. Are you asking if someone could be declared NED without surgery and just getting chemo. Or being declared NED after a met has disappeared off the radar after chemo, and then that met not reappearing and starting to grow again at a later date? (sorry, my question is probably even more confusing) I think John is the wise one on this.
  • pepebcn
    pepebcn Member Posts: 6,331
    smokeyjoe said:

    Awwe Pepe I think I'm losing
    Awwe Pepe I think I'm losing something in the translation. Are you asking if someone could be declared NED without surgery and just getting chemo. Or being declared NED after a met has disappeared off the radar after chemo, and then that met not reappearing and starting to grow again at a later date? (sorry, my question is probably even more confusing) I think John is the wise one on this.

    Hahahahaha! what a semantics confusion!
    I will try again ! I'm asking if somebody here, has reduced their mets enough to don't be evident to an scan or pet or CEA control just by using chemo.
    In affirmative case for how long they remained with no evidence of visual tumors or High CEA counts ?.UUFFFF!.
    Hahahahaha!.LOL.
  • Randy33
    Randy33 Member Posts: 69 **
    NED 2 1/2 Years after just chemo
    I was stage 4 with mets to neck and liver. After 10 rounds of Folfox/ w Avastin my tumors had disappered. That was 2 1/2 years ago and I am still NED. I too am curious if anyone else has been NED for a long period with just chemo. I am doing everything I can to keep the cancer from coming back. Lots of exercise, Medeterainan diet and lots of supplements.
    Randy
  • GaryinUK
    GaryinUK Member Posts: 62
    pepebcn said:

    Hahahahaha! what a semantics confusion!
    I will try again ! I'm asking if somebody here, has reduced their mets enough to don't be evident to an scan or pet or CEA control just by using chemo.
    In affirmative case for how long they remained with no evidence of visual tumors or High CEA counts ?.UUFFFF!.
    Hahahahaha!.LOL.

    I understand
    My partner already had mets to the liver when diagnosed, the operation to remove the primary from the colon was a total success, no recurrence at all in that area, 21mths later.

    The Liver resection was a 'success', no trace of anything for 3months, then back it came in the Liver and now in the peritoneal cavity, the Chemo did not reduce when it recurred, in my opinion it made it worse.

    CEA last we heard was around 9, all bloods since have been 'excellent', ut no chemo now for 6months, just alternative ideas.

    Did I get it right, understand?

    Hope so, and I hope Barcelona win on Saturday.

    Gary
  • PGLGreg
    PGLGreg Member Posts: 731
    pepebcn said:

    OK i agree with most you say but that was not the question
    the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!.

    No.
    "the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!."

    Yes, I thought that's what you were asking, and here is what I answered in the previous thread: No. You mentioned Betsydoglover as a possible case of someone who was apparently cured without surgery --- well, maybe. But myself, I don't recall such cases. As I said previously, I have seen people report that after chemo and then surgery, the pathologist could find no cancer in tissue the surgeon removed. But this is not the kind of case you're looking for, because just because the pathologist found no cancer, that doesn't mean there was none.

    So if your surgeon and oncologist are recommending surgery, even though you think chemo may have gotten all the cancer, I vote for following the recommendation and having the surgery.

    --Greg
  • janie1
    janie1 Member Posts: 753
    Randy33 said:

    NED 2 1/2 Years after just chemo
    I was stage 4 with mets to neck and liver. After 10 rounds of Folfox/ w Avastin my tumors had disappered. That was 2 1/2 years ago and I am still NED. I too am curious if anyone else has been NED for a long period with just chemo. I am doing everything I can to keep the cancer from coming back. Lots of exercise, Medeterainan diet and lots of supplements.
    Randy

    Randy
    That's some really good news. Do u mind sharing which supplements (and how much) you take? Did you take those same supplements while on chemo, or did you really amp up the diet and supplements after chemo? (still trying to figure out what to take now while on folfox) and what to do after. onc is no help. Going to naturopath next week, but i still like to compare what people are doing. Thanks for your time and sharing!
  • pepebcn
    pepebcn Member Posts: 6,331
    Randy33 said:

    NED 2 1/2 Years after just chemo
    I was stage 4 with mets to neck and liver. After 10 rounds of Folfox/ w Avastin my tumors had disappered. That was 2 1/2 years ago and I am still NED. I too am curious if anyone else has been NED for a long period with just chemo. I am doing everything I can to keep the cancer from coming back. Lots of exercise, Medeterainan diet and lots of supplements.
    Randy

    Thank you Randy we all appreciate your comments!
    Again Greg I don't say cured just not tumors for a while!.
    Hugs!
  • pepebcn
    pepebcn Member Posts: 6,331
    GaryinUK said:

    I understand
    My partner already had mets to the liver when diagnosed, the operation to remove the primary from the colon was a total success, no recurrence at all in that area, 21mths later.

    The Liver resection was a 'success', no trace of anything for 3months, then back it came in the Liver and now in the peritoneal cavity, the Chemo did not reduce when it recurred, in my opinion it made it worse.

    CEA last we heard was around 9, all bloods since have been 'excellent', ut no chemo now for 6months, just alternative ideas.

    Did I get it right, understand?

    Hope so, and I hope Barcelona win on Saturday.

    Gary

    Thank you Gary , hope so!
    LOL.
  • pepebcn
    pepebcn Member Posts: 6,331
    PGLGreg said:

    No.
    "the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!."

    Yes, I thought that's what you were asking, and here is what I answered in the previous thread: No. You mentioned Betsydoglover as a possible case of someone who was apparently cured without surgery --- well, maybe. But myself, I don't recall such cases. As I said previously, I have seen people report that after chemo and then surgery, the pathologist could find no cancer in tissue the surgeon removed. But this is not the kind of case you're looking for, because just because the pathologist found no cancer, that doesn't mean there was none.

    So if your surgeon and oncologist are recommending surgery, even though you think chemo may have gotten all the cancer, I vote for following the recommendation and having the surgery.

    --Greg

    Greg notice that a lymph node can't be operated!
    So we have to play chemo card!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    NED from chemo only
    Hi Pepe - since you mentioned me, I thought I would elaborate. I was diagnosed in 5/05 with sigmoid tumor and liver met. My colon resection was done in June '05 and then I did 6 cycles of Xeloda/oxaliplatin/Avastin. Based upon PET and CT scans I was NED after 3 cycles. I stopped chemo the first week of December 2005 and remained NED based on scans every 3 months until Nov. 2008 when a tiny lung nodule showed up. So, I remained NED for 35 months after stopping chemo.

    My liver is still clear as of last week. The lung nodule was removed via VATS in 4/09 and then I did Xeloda plus Avastin for 6 cycles, continuing Avastin up until 2 weeks ago. Now I am back in watch and wait mode - will be scanning and doing blood work every 3 months.

    I guess what I am saying is that it can happen that chemo alone eliminates liver mets, but that isn't the norm.

    Take care,
    Betsy