Maintenance therapy - What does it mean?

Aicirtap
Aicirtap Member Posts: 55
in Colorectal Cancer #1

Hi everyone,

 

here re I am again with questions  My fiancee has stage IV colon cancer into the 5th year now. He has had more than ten surgeries (minimal-invasive and major) for the primary, liver Mets and lung mets As well as all normal chemo protocols and antibodies. Unfortunately, while being resectable, his mets always return after a short time (< 3 months). He is still well, works, plays tennis. This time his doctors don't want to do surgery although they are willing to do so if we insist. He has small mets (mm) on both sides of the lung and a 2cm met in the liver which is difficult to resect due to resection as well as two to three enlarged lymph nodes. We have been discussing surgery, radiation and of course chemo. Our doctors are pushing for maintenance therapy - right now he is only on an antibody and we will see what the next scan shows. I was always under the impression that surgery is the way to go if at all possible but this time he would have to undergo three Major surgeries and would not be treated during this time with chemo. His doctors are saying that it's a risk that he will build resistance against chemo during this time. 

i can't seem to find much on maintenance therapy. The numbers on chemo in General are not very encouraging. Do we have any people out here who have been on chemo protocol for extended amounts of time, successfully so? How long have you been on it - without growth. How did side effects develop? Would anyone here actually opt for maintenance therapy in this situation? I am a little confused since his doctors are pushing so hard. 

Many insight is much appreciated. 

Best

patricia 

Comments

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #2
    multimodal

    Maintence chemo aims to suppress metastasis and tumor growth with tolerable amounts of chemo for longer time periods.  ADAPT with low dose xeloda and celebrex is likely the longest, most tolerable treatment near "standard" acceptance. 

    What is technically doable is far different than what is typically offered or, even if intelligently demanded, available at advanced hospitals.   Probably the ...two to three enlarged lymph nodes are what pause them on surgery - they can't do both surgery and antimetastatic chemo by standard means, at the same time. To try to be curative, your fiance' is deep into multimodal territory - multiple rounds of sophisticated chemo and surgery, presciently applied, IF the dessimination is not too great for their combined, coordinated skillsets. Wash and repeat.  Many aspects are not "standard" and require far sight and attention to detail.  

    ...his mets always return after a short time (< 3 months)

    Several approaches to recurrent mets might be considered.  Has he used cimetidine (Tagamet) and/or Celebrex in the between time off chemo, before and after surgery ?   More aggressive is to do oral chemo closer to surgery - it scares litigation adverse drs and takes some biological sophistication on a patient in good condition.  (Instead of a stop weeks before, my wife took her oral chemo 24 hrs before surgery and 24 hours after surgery, some experimental tx have done chemo even closer, with high dose cimetidine for surgery).     

    Would anyone here actually opt for maintenance therapy in this situation?

    Most people don't have much choice about surgery or personalized multimodal treatments.  For surgery, first you have to be able to find (scan it) and remove (access) the mets, that derails many patients using local talent.  Second you have to someone(s) capable and willing to perform various steps - that's not automatic, rather a distinct minority of institutions and doctors going beyond into nonstandard tx.  Third, the forced chemo vacation before/after surgery is not intelligently addressed in standard practice, and things tend to spread and grow without treatment.  Fourth, finance is not a given - you have to have wonderful insurance and/or substantial wealth for nonstandard treatments, if you can't cut the costs.     Some people can and do hurdle these barriers, but it is not done for you.   

    Whereas, mCRC patients can go around the corner to the local oncology center and get pumped up with chemo until progression or it becomes intolerable, with few questions asked.   Again, some version of ADAPT might also be considered, whether or not treated multimodal. 

    who have been on chemo protocol for extended amounts of time, successfully so? How long have you been on it - without growth

    My mCRC wife with previous para aortic lymph nodes has been (self)experimentally on daily immunochemo for 3.8 years without scanned growth (biomarkers move up, beat down).  An ADAPT protocol modified with Life Extension recommendations would be the closest similar approach.   The distant lymph nodes make them want to move faster to stop spread.  ADAPT if someone like Dr Lin agrees for the tumor load, might answer both the demands for maintenance now and to preserve strength for multimodal surgeries.

     

  • Aicirtap
    Aicirtap Member Posts: 55
    #3
    tanstaafl said:

    multimodal

    Maintence chemo aims to suppress metastasis and tumor growth with tolerable amounts of chemo for longer time periods.  ADAPT with low dose xeloda and celebrex is likely the longest, most tolerable treatment near "standard" acceptance. 

    What is technically doable is far different than what is typically offered or, even if intelligently demanded, available at advanced hospitals.   Probably the ...two to three enlarged lymph nodes are what pause them on surgery - they can't do both surgery and antimetastatic chemo by standard means, at the same time. To try to be curative, your fiance' is deep into multimodal territory - multiple rounds of sophisticated chemo and surgery, presciently applied, IF the dessimination is not too great for their combined, coordinated skillsets. Wash and repeat.  Many aspects are not "standard" and require far sight and attention to detail.  

    ...his mets always return after a short time (< 3 months)

    Several approaches to recurrent mets might be considered.  Has he used cimetidine (Tagamet) and/or Celebrex in the between time off chemo, before and after surgery ?   More aggressive is to do oral chemo closer to surgery - it scares litigation adverse drs and takes some biological sophistication on a patient in good condition.  (Instead of a stop weeks before, my wife took her oral chemo 24 hrs before surgery and 24 hours after surgery, some experimental tx have done chemo even closer, with high dose cimetidine for surgery).     

    Would anyone here actually opt for maintenance therapy in this situation?

    Most people don't have much choice about surgery or personalized multimodal treatments.  For surgery, first you have to be able to find (scan it) and remove (access) the mets, that derails many patients using local talent.  Second you have to someone(s) capable and willing to perform various steps - that's not automatic, rather a distinct minority of institutions and doctors going beyond into nonstandard tx.  Third, the forced chemo vacation before/after surgery is not intelligently addressed in standard practice, and things tend to spread and grow without treatment.  Fourth, finance is not a given - you have to have wonderful insurance and/or substantial wealth for nonstandard treatments, if you can't cut the costs.     Some people can and do hurdle these barriers, but it is not done for you.   

    Whereas, mCRC patients can go around the corner to the local oncology center and get pumped up with chemo until progression or it becomes intolerable, with few questions asked.   Again, some version of ADAPT might also be considered, whether or not treated multimodal. 

    who have been on chemo protocol for extended amounts of time, successfully so? How long have you been on it - without growth

    My mCRC wife with previous para aortic lymph nodes has been (self)experimentally on daily immunochemo for 3.8 years without scanned growth (biomarkers move up, beat down).  An ADAPT protocol modified with Life Extension recommendations would be the closest similar approach.   The distant lymph nodes make them want to move faster to stop spread.  ADAPT if someone like Dr Lin agrees for the tumor load, might answer both the demands for maintenance now and to preserve strength for multimodal surgeries.

     

    Thank you so much for this oh

    Thank you so much for this oh so very helpful post! I actually sent his doctors an email (and as always, my partner will feel the strong urge to kill me ;) asking about the option of continuing chemo while doing the surgeries. I believe they are capable of doing the surgeries, the head surgeon has said so. however, after bringing the case to the tumor board once agaim, they strongly recommended to stick to chemo and skip the surgeries (Which scares me). I even met with the oncologist alone and it's hard to come to conclusions when recommendations are so strong. 

    neither Tagamet not celebrex have been part of his treatment, I am just Looking it up. He has had the two antibodies that you use for metastasized chemo (avastin and vectibix in Germany) and the normal chemo protocols. Howany surgeries has your wife had so far, if I may ask? It is very interesting for me to read of similar treatments and there don't seem to be too many out there. 

    Thanks again!

    all the best for your wife and you!

    patricia 

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #4
    Aicirtap said:

    Thank you so much for this oh

    Thank you so much for this oh so very helpful post! I actually sent his doctors an email (and as always, my partner will feel the strong urge to kill me ;) asking about the option of continuing chemo while doing the surgeries. I believe they are capable of doing the surgeries, the head surgeon has said so. however, after bringing the case to the tumor board once agaim, they strongly recommended to stick to chemo and skip the surgeries (Which scares me). I even met with the oncologist alone and it's hard to come to conclusions when recommendations are so strong. 

    neither Tagamet not celebrex have been part of his treatment, I am just Looking it up. He has had the two antibodies that you use for metastasized chemo (avastin and vectibix in Germany) and the normal chemo protocols. Howany surgeries has your wife had so far, if I may ask? It is very interesting for me to read of similar treatments and there don't seem to be too many out there. 

    Thanks again!

    all the best for your wife and you!

    patricia 

    I am currently on ADAPT

    I am currently on ADAPT maintenance therapy.  We will see how it is working on the next scan in April.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #5
    Aicirtap said:

    Thank you so much for this oh

    Thank you so much for this oh so very helpful post! I actually sent his doctors an email (and as always, my partner will feel the strong urge to kill me ;) asking about the option of continuing chemo while doing the surgeries. I believe they are capable of doing the surgeries, the head surgeon has said so. however, after bringing the case to the tumor board once agaim, they strongly recommended to stick to chemo and skip the surgeries (Which scares me). I even met with the oncologist alone and it's hard to come to conclusions when recommendations are so strong. 

    neither Tagamet not celebrex have been part of his treatment, I am just Looking it up. He has had the two antibodies that you use for metastasized chemo (avastin and vectibix in Germany) and the normal chemo protocols. Howany surgeries has your wife had so far, if I may ask? It is very interesting for me to read of similar treatments and there don't seem to be too many out there. 

    Thanks again!

    all the best for your wife and you!

    patricia 

    making uncommon successes

    My wife has had two surgeries: the primary resection, 13.5 months of immune and chemotherapy after dx; then surgery for the pre-existing para-aortic lymph nodes, followed by another 3.8 yrs of immunochemo.    

    Mainstream, they are not personally familiar with metronomic chemo like UFT or ADAPT+, cimetidine for CRC, and what more surgeries can be successful once the mets are stopped.  They are afraid for themselves on chemo+surgery and know little about supernutritional post op and wound healing (e.g. IV vitamin C and some supplements).

     

  • Aicirtap
    Aicirtap Member Posts: 55
    #6
    tanstaafl said:

    making uncommon successes

    My wife has had two surgeries: the primary resection, 13.5 months of immune and chemotherapy after dx; then surgery for the pre-existing para-aortic lymph nodes, followed by another 3.8 yrs of immunochemo.    

    Mainstream, they are not personally familiar with metronomic chemo like UFT or ADAPT+, cimetidine for CRC, and what more surgeries can be successful once the mets are stopped.  They are afraid for themselves on chemo+surgery and know little about supernutritional post op and wound healing (e.g. IV vitamin C and some supplements).

     

    That is very interesting.

    That is very interesting. Would you mind sharing where your wife is being treated? We are in Germany so it's not going to be of immediate use but my family is in the US. 

  • Aicirtap
    Aicirtap Member Posts: 55
    #7
    janderson1964 said:

    I am currently on ADAPT

    I am currently on ADAPT maintenance therapy.  We will see how it is working on the next scan in April.

    Keep my fingers crossed that

    Keep my fingers crossed that it's going well! 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
    Aicirtap said:

    That is very interesting.

    That is very interesting. Would you mind sharing where your wife is being treated? We are in Germany so it's not going to be of immediate use but my family is in the US. 

    nih

    Mostly at home, another direction.

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