Maintenance or no maintenance?

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi Everyone,

Have all of you had a conversation with your oncologist about whether or not maintenance chemo was suggested for you? Is this only for stage 4 patients? Is it only for patients who have had a reoccurance? Who are NED? I think that from reading everything oncologists are all over the place on this. Please chime in.

**** is going to see Dr. Lenz in about a week to discuss this. I'll let you know what he says.

Aloha,
Kathleen

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    Hi Kathleen:
    We wish you the best of everything with your upcoming visit with Dr. Lenz.

    When George was diagnosed with very advanced Stage IV in March, 09, he did six months of Folfox after his transverse colectomy which occurred April 2nd. When done with Folfox which really worked for him, he had a couple week break, then the onc put him on an IV of 5FU weekly, adding Avastin every other week. The whole infusion, including blood draw, took about 30/40 minutes. He remained stable, no growth or progression for over a year. He never had the chemo pills. This kept things in check until recently when we were confronted with the news that the cancer was on the move again. It still remains in his liver and lungs and no progression to bones, etc.

    Our onc never called it maintenance chemo, but that is what it was. Our onc didn't rush to the second line of chemo after folfox because of the advanced disease we knew surgery, radiation, or anything else would not accomplish a no evidence of active disease status and would limit future treatments when they became necessary.

    If memory serves **** is currently NED. If he is currently stable, no active disease, and has been so for several months why go back on chemo just yet. If he is being monitored very, very closely with monthly blood draws including CEA you will be able to catch anything that acts up rather quickly.

    Now if there is anything whatsoever that is even questionable, do the maintenance.

    Don't know if this helps, hope it does.

    Take care - Tina
  • mukamom
    mukamom Member Posts: 402
    geotina said:

    Hi Kathleen:
    We wish you the best of everything with your upcoming visit with Dr. Lenz.

    When George was diagnosed with very advanced Stage IV in March, 09, he did six months of Folfox after his transverse colectomy which occurred April 2nd. When done with Folfox which really worked for him, he had a couple week break, then the onc put him on an IV of 5FU weekly, adding Avastin every other week. The whole infusion, including blood draw, took about 30/40 minutes. He remained stable, no growth or progression for over a year. He never had the chemo pills. This kept things in check until recently when we were confronted with the news that the cancer was on the move again. It still remains in his liver and lungs and no progression to bones, etc.

    Our onc never called it maintenance chemo, but that is what it was. Our onc didn't rush to the second line of chemo after folfox because of the advanced disease we knew surgery, radiation, or anything else would not accomplish a no evidence of active disease status and would limit future treatments when they became necessary.

    If memory serves **** is currently NED. If he is currently stable, no active disease, and has been so for several months why go back on chemo just yet. If he is being monitored very, very closely with monthly blood draws including CEA you will be able to catch anything that acts up rather quickly.

    Now if there is anything whatsoever that is even questionable, do the maintenance.

    Don't know if this helps, hope it does.

    Take care - Tina

    Kathleen
    When Robert was NED for 3 months in Oct 09 his onc said it was up to him to decide to continue
    his treatments. He also said there was no right or wrong answer, but given the chances of a progression at stage iv...Robert decided to continue. His dosages were cut and the avastin was eliminated. Unfortunately, his scan in Jan showed another lesion in his liver. It is a real difficult decision to make..so many what ifs that can't be answered. You just do what makes you comfortable.

    My best to you
    Angela
  • John23
    John23 Member Posts: 2,122 Member
    The definitive answer:

    There isn't one. And asking what others think, won't do -you-
    much good, since we are all very different, and we all feel differently
    regarding what keeps us healthy.

    Chemotherapy is designed to kill any cell that's growing faster than
    the cells that surround it. If the cell starts in the colon, it grows at
    a specific rate; when it travels to an area out of the colon, it grows
    at it's same rate, but the new surrounding cells may be growing
    faster - the same chemicals won't do the job. (There's more to
    it that that, but that's the quick version).

    The important thing to remember, is that chemicals used presently,
    were not, is not, and probably never will never be used as a
    "preventive medicine"; it can't kill what it can't identify, and attempting
    to use it against a single cancer cell, will usually kill more good
    cells first.

    Using it as "maintenance" is wishful thinking. It's nice to hope for,
    but the evidence pretty much indicates that it simply can't be used
    like that with any success.

    If the idea is to keep the cancer they can identify in check, then yes,
    it'll do that. It does do that for many people here! The physicians
    are treating cancer as a "chronic disease" and using the only tools
    they have in their tool bag, to work with.

    It's a well known and accepted fact, that every chemotherapy
    chemical is a carcinogenic chemical. Every form of radiation,
    is a carcinogenic. There are presently no exceptions. So if you're
    trying to fight cancer, and don't wish to add more problems to the
    mix, you should question the validity and usefulness of every
    medical approach and treatment you are going to undergo.

    It's terrible, but the fear of dying a slow death from cancer has
    too, too many people doing things that cause them more harm
    than good. Physicians have seemed to have lost their promise
    to "first, do no harm", and instead apply medicine and chemistry
    as if it's mandatory. It is not. There -are- other options.

    There are more people here doing chemo and radiation, than those
    that have opted to do other alternatives. It's unfortunate that
    the ones that remain alive after using alternatives, aren't here on
    this forum to provide their insight and confidence. The fears
    outweigh the curiosity and courage, and the industry prevails
    on most of these forums.

    You have to choose what -you- feel is best for -you-. But you're
    not going to be able to make a good decision, if it isn't a well informed
    decision. And unless you hear from all others that have opted to try
    other things at the juncture you're presently at, you won't know
    what the options are, or just how good they've worked.

    And you can't trust 90% of the websites that promote alternatives
    to any major malady.

    Confused? Good! With confusion, usually comes a desire to learn.

    The info is out there........ don't be too hasty, and don't fear losing your life.

    Best wishes to you,

    John
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    John23 said:

    The definitive answer:

    There isn't one. And asking what others think, won't do -you-
    much good, since we are all very different, and we all feel differently
    regarding what keeps us healthy.

    Chemotherapy is designed to kill any cell that's growing faster than
    the cells that surround it. If the cell starts in the colon, it grows at
    a specific rate; when it travels to an area out of the colon, it grows
    at it's same rate, but the new surrounding cells may be growing
    faster - the same chemicals won't do the job. (There's more to
    it that that, but that's the quick version).

    The important thing to remember, is that chemicals used presently,
    were not, is not, and probably never will never be used as a
    "preventive medicine"; it can't kill what it can't identify, and attempting
    to use it against a single cancer cell, will usually kill more good
    cells first.

    Using it as "maintenance" is wishful thinking. It's nice to hope for,
    but the evidence pretty much indicates that it simply can't be used
    like that with any success.

    If the idea is to keep the cancer they can identify in check, then yes,
    it'll do that. It does do that for many people here! The physicians
    are treating cancer as a "chronic disease" and using the only tools
    they have in their tool bag, to work with.

    It's a well known and accepted fact, that every chemotherapy
    chemical is a carcinogenic chemical. Every form of radiation,
    is a carcinogenic. There are presently no exceptions. So if you're
    trying to fight cancer, and don't wish to add more problems to the
    mix, you should question the validity and usefulness of every
    medical approach and treatment you are going to undergo.

    It's terrible, but the fear of dying a slow death from cancer has
    too, too many people doing things that cause them more harm
    than good. Physicians have seemed to have lost their promise
    to "first, do no harm", and instead apply medicine and chemistry
    as if it's mandatory. It is not. There -are- other options.

    There are more people here doing chemo and radiation, than those
    that have opted to do other alternatives. It's unfortunate that
    the ones that remain alive after using alternatives, aren't here on
    this forum to provide their insight and confidence. The fears
    outweigh the curiosity and courage, and the industry prevails
    on most of these forums.

    You have to choose what -you- feel is best for -you-. But you're
    not going to be able to make a good decision, if it isn't a well informed
    decision. And unless you hear from all others that have opted to try
    other things at the juncture you're presently at, you won't know
    what the options are, or just how good they've worked.

    And you can't trust 90% of the websites that promote alternatives
    to any major malady.

    Confused? Good! With confusion, usually comes a desire to learn.

    The info is out there........ don't be too hasty, and don't fear losing your life.

    Best wishes to you,

    John

    Many times now
    It seems that the Hippocratic oath has gone from "Do no harm" to "Save a life no matter how much or little time added, no matter what the cost". And by cost I also mean the cost to quality of life. You have to understand that though. It's just human nature and doctors are human. No one wants to lose a patient. That's why it's important for the patient to take the reins and decide what cost they are willing to pay for how much time. It's got to be an individual choice.

    As for maintenance chemo, it's tough because that's so individual too. Only the patient can decide if their quality of life hits the point where it is no longer feasible to continue. And then there are those that do maintenance and end up NED for an extended periods of time and have a good quality. So much to consider. From what I gather that type of chemo is saved for stage 4s

    Let us know how it goes with Dr. Lenz. Lisa had an excellent consultation with him last week and he gave her a lot of good personal information to help her make those tough decisions about treatment. HUGS to you both. Aloha!
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    John23 said:

    The definitive answer:

    There isn't one. And asking what others think, won't do -you-
    much good, since we are all very different, and we all feel differently
    regarding what keeps us healthy.

    Chemotherapy is designed to kill any cell that's growing faster than
    the cells that surround it. If the cell starts in the colon, it grows at
    a specific rate; when it travels to an area out of the colon, it grows
    at it's same rate, but the new surrounding cells may be growing
    faster - the same chemicals won't do the job. (There's more to
    it that that, but that's the quick version).

    The important thing to remember, is that chemicals used presently,
    were not, is not, and probably never will never be used as a
    "preventive medicine"; it can't kill what it can't identify, and attempting
    to use it against a single cancer cell, will usually kill more good
    cells first.

    Using it as "maintenance" is wishful thinking. It's nice to hope for,
    but the evidence pretty much indicates that it simply can't be used
    like that with any success.

    If the idea is to keep the cancer they can identify in check, then yes,
    it'll do that. It does do that for many people here! The physicians
    are treating cancer as a "chronic disease" and using the only tools
    they have in their tool bag, to work with.

    It's a well known and accepted fact, that every chemotherapy
    chemical is a carcinogenic chemical. Every form of radiation,
    is a carcinogenic. There are presently no exceptions. So if you're
    trying to fight cancer, and don't wish to add more problems to the
    mix, you should question the validity and usefulness of every
    medical approach and treatment you are going to undergo.

    It's terrible, but the fear of dying a slow death from cancer has
    too, too many people doing things that cause them more harm
    than good. Physicians have seemed to have lost their promise
    to "first, do no harm", and instead apply medicine and chemistry
    as if it's mandatory. It is not. There -are- other options.

    There are more people here doing chemo and radiation, than those
    that have opted to do other alternatives. It's unfortunate that
    the ones that remain alive after using alternatives, aren't here on
    this forum to provide their insight and confidence. The fears
    outweigh the curiosity and courage, and the industry prevails
    on most of these forums.

    You have to choose what -you- feel is best for -you-. But you're
    not going to be able to make a good decision, if it isn't a well informed
    decision. And unless you hear from all others that have opted to try
    other things at the juncture you're presently at, you won't know
    what the options are, or just how good they've worked.

    And you can't trust 90% of the websites that promote alternatives
    to any major malady.

    Confused? Good! With confusion, usually comes a desire to learn.

    The info is out there........ don't be too hasty, and don't fear losing your life.

    Best wishes to you,

    John

    Is there a breakdown of how
    Is there a breakdown of how patients using alternatives have done over a period of time
    for each type of of cancer and stage?

    Examples would be
    1. Alternative type option method
    2. Specific type of cancer and stage
    3. Initial dx or recurrance of cancer
    4. Use of chemo or/and radiation in conjunction with Alternative option
    5. Recurrance rate over 1, 2 and 5 yr
    6 Survial rate 5 yrs
    7. Age group, gender

    Lets use colon cancer, stages 2, 3 and 4 as an example for both first time dx and recurrance and TCM exclusivly as treatment plan.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    great info
    You guys are a great group. All your words give us more to think about. I know that the research is just not out there on maintenance. We tend to think that ****'s lymph system is doing a good job keeping the cancer from other parts of his body. That's its job to capture and fight. We are thinking of looking at ways to boost his lymph system and immune system. Too bad everything is a crap shoot. Right now **** is exercising, running 4 miles a few times a week, going to the gym, drinking green tea, keeping a pretty good diet. He knows he needs to add some meditation and/or yoga. We know nothing is a sure bet. Then again what in life is?

    I'll keep you posted on his visit with Dr. Lenz.

    Aloha,
    Kathleen
  • dorookie
    dorookie Member Posts: 1,731 Member

    great info
    You guys are a great group. All your words give us more to think about. I know that the research is just not out there on maintenance. We tend to think that ****'s lymph system is doing a good job keeping the cancer from other parts of his body. That's its job to capture and fight. We are thinking of looking at ways to boost his lymph system and immune system. Too bad everything is a crap shoot. Right now **** is exercising, running 4 miles a few times a week, going to the gym, drinking green tea, keeping a pretty good diet. He knows he needs to add some meditation and/or yoga. We know nothing is a sure bet. Then again what in life is?

    I'll keep you posted on his visit with Dr. Lenz.

    Aloha,
    Kathleen

    Hi there
    Gosh I have been so busy havent been on the board in a while so got lots of catching up to do.

    my 2 cents is this, if Dr Lenz recommends maintenance then I would do it. I was originally DX stage 3 then it went from my butt to my lung via lymph system I am guessing, another surgery and many months of chemo again and just past 2 yrs cancer free. I finished my last chemo in june of 2009, and my docs just watch me closely, checks every 3 months, no mention of maintenance chemo, lucky i guess, either you both are in my prayers..

    hugs
    Beth
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Don't know
    I don't really have an answer, but my first thought would be to not do chemo unless something shows up. Then again, I have no medical degree. I'll be praying that you and **** will find the answer that's right for his situaion.

    *hugs*
    Gail
  • lesvanb
    lesvanb Member Posts: 905

    great info
    You guys are a great group. All your words give us more to think about. I know that the research is just not out there on maintenance. We tend to think that ****'s lymph system is doing a good job keeping the cancer from other parts of his body. That's its job to capture and fight. We are thinking of looking at ways to boost his lymph system and immune system. Too bad everything is a crap shoot. Right now **** is exercising, running 4 miles a few times a week, going to the gym, drinking green tea, keeping a pretty good diet. He knows he needs to add some meditation and/or yoga. We know nothing is a sure bet. Then again what in life is?

    I'll keep you posted on his visit with Dr. Lenz.

    Aloha,
    Kathleen

    Kathleen
    a quick recap
    dx 5/08 stage 4 rectal cancer; 1 met to liver
    radiation 28 tx xeloda/oxaliplatin 6/08
    LAR surgery 9/08
    R hepatectomy 10/08; NED after surgery
    FOLFOX 10 tx 1/09-5/09
    I stopped all chemo after 5/09.
    baseline PET/CT after surgeries/chemo 8/09; continued NED after 3/10 CT scan.
    Diet plus juicing, exercise (including yoga and weightlifting), acupuncture, and my 20 yr zen practice have been key to my recovery. This summer I felt the best I had in seven years.

    My PET/CT 6/10 showed 2 lung nodules-bilateral, 1 lymph node enlarged, but all less than 1 cm. One nodule had uptake of 2. Then my PET/CT 9/10 showed the 2 nodules, now with uptake (both under 6); slight growth on one, and lymph node stable. All still less than 1 cm. Both of my medical oncologists said I could watch and wait after 6/10 and 9/10 scans; or opt for a lung biopsy which would need to be VATS because of where nodules were. I've delayed a lung biopsy but have not just been watching and waiting. I want to avoid adding chemo unless I absolutely have to. Diet and supplements have been reviewed by all of my complementary team (acupuncturist, naturopath, and anthroposophical/internal medicine docs). I've added IV mistletoe (Iscador) when I've visited my anthroposophical docs in CA, and recently MI. (I've been doing subcu mistletoe since dx). I also added IV Vitamin C UKansas clinical trial protocol at the end of Sept (got a new port) and have been at therapeutic levels since mid-October. My most recent blood work CBC, CMP, cholesterol etc. was excellent. My WY oncologist is supporting me with the IV C infusions. I continue to feel stronger and continue to add more back into my life - exercise, hobbies, work etc. Most recently I joined Weight Watchers which has been great for structure around portion control and a reward for what I eat these days. Yes, indeed it is a crap shoot, but I sure am enjoying how I feel right now.

    So I have my Dec PET/CT Thursday and well, we'll see.

    Good luck with ****'s appointment with Dr. Lenz!

    all the best, Leslie
  • KathiM
    KathiM Member Posts: 8,028 Member
    I was only stage III....
    But just moved back to my regular GP....my oncologist is stepping back....

    No maintenance nothing....except Tamoxifen for my breast cancer, that will end in July, 2011. Then, I'll be flying completely without a net....

    Listen to Dr. Lenz....he will tell you...

    Hugs, Kathi
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    lesvanb said:

    Kathleen
    a quick recap
    dx 5/08 stage 4 rectal cancer; 1 met to liver
    radiation 28 tx xeloda/oxaliplatin 6/08
    LAR surgery 9/08
    R hepatectomy 10/08; NED after surgery
    FOLFOX 10 tx 1/09-5/09
    I stopped all chemo after 5/09.
    baseline PET/CT after surgeries/chemo 8/09; continued NED after 3/10 CT scan.
    Diet plus juicing, exercise (including yoga and weightlifting), acupuncture, and my 20 yr zen practice have been key to my recovery. This summer I felt the best I had in seven years.

    My PET/CT 6/10 showed 2 lung nodules-bilateral, 1 lymph node enlarged, but all less than 1 cm. One nodule had uptake of 2. Then my PET/CT 9/10 showed the 2 nodules, now with uptake (both under 6); slight growth on one, and lymph node stable. All still less than 1 cm. Both of my medical oncologists said I could watch and wait after 6/10 and 9/10 scans; or opt for a lung biopsy which would need to be VATS because of where nodules were. I've delayed a lung biopsy but have not just been watching and waiting. I want to avoid adding chemo unless I absolutely have to. Diet and supplements have been reviewed by all of my complementary team (acupuncturist, naturopath, and anthroposophical/internal medicine docs). I've added IV mistletoe (Iscador) when I've visited my anthroposophical docs in CA, and recently MI. (I've been doing subcu mistletoe since dx). I also added IV Vitamin C UKansas clinical trial protocol at the end of Sept (got a new port) and have been at therapeutic levels since mid-October. My most recent blood work CBC, CMP, cholesterol etc. was excellent. My WY oncologist is supporting me with the IV C infusions. I continue to feel stronger and continue to add more back into my life - exercise, hobbies, work etc. Most recently I joined Weight Watchers which has been great for structure around portion control and a reward for what I eat these days. Yes, indeed it is a crap shoot, but I sure am enjoying how I feel right now.

    So I have my Dec PET/CT Thursday and well, we'll see.

    Good luck with ****'s appointment with Dr. Lenz!

    all the best, Leslie

    Leslie
    i am so happy you are doing so well! Getting stronger is awesome!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Kathleen
    I will be curious to see what Dr. Lenz says. I am not NED .... maybe someday?
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Hello Kathleen
    I was told not too long ago, if I never qualified for surgery, but I was told that I would be able to do maintenance chemo for many years and still have quality of life. I thought that would be my only option, and it was at the time what was offered. Now I'm looking at surgery, so, yes, I think maintenance chemo is a wonderful thing, it offers you extended life, while new things are being discovered, and open up possibilities for NED eventually.
    Winter Marie
  • John23
    John23 Member Posts: 2,122 Member

    Is there a breakdown of how
    Is there a breakdown of how patients using alternatives have done over a period of time
    for each type of of cancer and stage?

    Examples would be
    1. Alternative type option method
    2. Specific type of cancer and stage
    3. Initial dx or recurrance of cancer
    4. Use of chemo or/and radiation in conjunction with Alternative option
    5. Recurrance rate over 1, 2 and 5 yr
    6 Survial rate 5 yrs
    7. Age group, gender

    Lets use colon cancer, stages 2, 3 and 4 as an example for both first time dx and recurrance and TCM exclusivly as treatment plan.

    HOS -

    Re:
    "Is there a breakdown of how patients using alternatives have done
    over a period of time for each type of of cancer and stage?"


    There are plenty of records for TCM and cancer, etc., but I doubt
    there is very much available for the other alternatives.

    Even the existing (and more recent) records for TCM are denounced,
    because they do not adhere to the "standards of testing" for western medicine.

    It's amusing, since the cancer industry pays for the studies, they
    are not legally compelled to release anything they choose not to;
    they provide the FDA with only the data they choose to provide.
    The FDA makes decisions based on the data they are provided...

    That's why things like VIOXX were licensed and released to
    market. The studies that indicated the erosion of the insides of
    blood vessels and arteries were not provided... oops?

    So many people denounce "statistics", yet seem so demanding to
    see the "statistics" of alternatives...

    I try to pay attention to simple things, like how many post to this forum,
    how many have recurrences with conventional medicine, and how
    many remain doing well with the alternative they've turned to.

    The "statistics" here alone, should encourage some serious interest
    in using an alternative.

    I personally would encourage using TCM (or any other alternative)
    with the conventional medicine one is presently taking. Why not?
    If there's a chance it will help, and it's not expensive, why not?

    Using any alternative does not mean you "give up" your usual
    medicine and/or examinations. Even for those of us that no longer
    do any conventional medicine, we remain getting examinations and
    check-ups, along with scans and blood tests. And we still have
    our western medicine physicians to call on.

    There's nothing radical about using an alternative, unless one
    is determined to be radical. For those..... good luck.

    Stay well!!

    John
  • Crow71
    Crow71 Member Posts: 679 Member

    great info
    You guys are a great group. All your words give us more to think about. I know that the research is just not out there on maintenance. We tend to think that ****'s lymph system is doing a good job keeping the cancer from other parts of his body. That's its job to capture and fight. We are thinking of looking at ways to boost his lymph system and immune system. Too bad everything is a crap shoot. Right now **** is exercising, running 4 miles a few times a week, going to the gym, drinking green tea, keeping a pretty good diet. He knows he needs to add some meditation and/or yoga. We know nothing is a sure bet. Then again what in life is?

    I'll keep you posted on his visit with Dr. Lenz.

    Aloha,
    Kathleen

    Total crappy crap shoot
    . . . and lots of surfing too right? I always picture **** surfing. I bet cancer just hates the heck out of surfing.

    Tough decision. You are right that oncs are all over the place on this one. My onc definitely wanted me to do "maintenance chemo" after my surgery. I was on the fence. I had hoped that the initial chemo and then surgery would put me in a position where I could super charge my immune system so that I could "maintain" myself. But since the cancer came back/never left so soon after surgery, I didn't have to decide.

    I'm a fan of juicing, although I haven't been able to lately due to ostomy problems. Yuck!! Whatever you decide, I encourage **** to keep up the good work. It sounds like he's doing great.

    Have fun with the Holiday season in your classroom. I really miss teaching this time of year.

    Take Care,

    Roge
  • taraHK
    taraHK Member Posts: 1,952 Member
    tough call
    Hi Kathleen,

    I have heard opinions on both sides of this debate -- and they both make some sense (to me, at least). Maintenance chemo certainly seems to make sense for some of us who appear to have a high chance of recurrence. At the same time, there is an argument for withholding the 'heavy guns' until they are really needed (ie recurrence) - that they might then be more effective. And then there are the quality of life issues -- sometimes we might need a chemo break.

    For what it's worth: I'm on FOLFIRI + Avastin now, battling a few bone mets. If/when the mets disappear, my oncologist and I have discussed staying on Xeloda only as maintenance chemo -- but coming off the CPT11, so that I could go back on it if necessary to wollup any new mets. But, it remains to be seen what I do in the end.....right now I'm dreaming about a wee chemo break....

    Good luck with your decision making

    Tara
  • dmdwins
    dmdwins Member Posts: 454 Member
    taraHK said:

    tough call
    Hi Kathleen,

    I have heard opinions on both sides of this debate -- and they both make some sense (to me, at least). Maintenance chemo certainly seems to make sense for some of us who appear to have a high chance of recurrence. At the same time, there is an argument for withholding the 'heavy guns' until they are really needed (ie recurrence) - that they might then be more effective. And then there are the quality of life issues -- sometimes we might need a chemo break.

    For what it's worth: I'm on FOLFIRI + Avastin now, battling a few bone mets. If/when the mets disappear, my oncologist and I have discussed staying on Xeloda only as maintenance chemo -- but coming off the CPT11, so that I could go back on it if necessary to wollup any new mets. But, it remains to be seen what I do in the end.....right now I'm dreaming about a wee chemo break....

    Good luck with your decision making

    Tara

    My oncologists thoughts
    Hi Kathleen

    Quick reminder.....Stage 4 10/2007....ovary removed 11/2008 +mets.

    I asked my oncologist about maintenance chemo. His response was that since I was R0 (residual tumor-none)that it was not recommended as there was no evidence that there was disease to treat. He said that he was sure that if I really pushed that there were docs out there that would give me maintence chemo.... he just wasnt on board with that while being NED. I would be interested to get Dr. Lenz opinion on that.

    I am at a major cancer center and have high regard for my oncologist ......I am still NED on scan friday though my CEA has risen a bit( my CEA was normal at diagnosis also)I will see my onc today. It is so hard to know what to do but just giving my oncs thought on the issue.

    Sounds as if **** is doing well..... I am so glad to hear that :)

    smiles,
    Dawn
  • lisa42
    lisa42 Member Posts: 3,625 Member
    maintenance or not
    Hi Kathleen,

    I will also be interested in hearing what Dr. Lenz has to say about maintenance or not. As you said, it depends upon the stage and person's situation. I don't know, but my personal thoughts about now are that keeping up the great activity, eating right, and adding juicing and a few good cancer fighting supplements might be the way to kick up the body's immune system to kill off any possible remaining microscopic cancer cells.
    I'm on the "forever" chemo plan right now & hate that I am reliant on the chemo. I am also taking numerous supplements (Dr. Lenz saw my list, didn't comment much on them though), but my regular oncologist Dr. Helton said he honestly doesn't know if they will help me but he doesn't believe they will interfere w/ my treatment or hurt me in any way.
    There's a few anyhow, that could do **** good- turmeric & cimetidine (Tagamet- 800 mg/day- 2 pills in a.m & 2 more in p.m.) are two biggies. Also, adding a "green" supplement like kelp or spirulina would be good. I look at it like this- even if they don't end up helping kill off the cancer, they are going to keep the body strong and fight off other little nasty illnesses.

    Hugs to you & looking forward to what Lenz says-

    Lisa
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  • Nana b
    Nana b Member Posts: 3,030 Member
    unknown said:

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    Dx nov 2008. After liver
    Dx nov 2008. After liver surgery April 2009, there has been no cancer but continued 3 months if the. 6 month chemo. Last .chemo Aug 2009. NED since, no maintenance chemo but lots of supplements, good food, and some juicing. Don't get me wrong I still indulge in the good food, but portion control and not often. I go many months without beef but them I might have a bite or two. Lately, I have noticed that the bites are not that great. Taste buds are changing.

    I would hate doing maintenance chemo. My ONC, never brought it up and he hpis very aggressive.

    Hugs!