Treatment Options

nanuk
nanuk Member Posts: 1,358 Member
edited March 2014 in Colorectal Cancer #1
After reading a stage IV cc patient's summary of his efforts to "cure" his cancer with conventional and experimental options, and the research, travel, misinformation, time wasted and frustrations encountered by this person, it
became clear that a section or forum dealing with conventional, experimental and alternative therapies is needed. Many people have given up hope because a doctor or other practitioner has advised them they are out of options, when the truth may be that the practitioner just wasn't aware of another treatment option.
Every patient should be made aware of the therapies available for Advanced Colorectal cancer, their response rates, progression free survival times, and overall survival times.
Once the patient has exausted any conventional therapies, information about drugs in development-(trials) should be made available.
Their are semi-colons, lurkers, professionals and practitioners on this site who do contribute
to this knowledge on a post-to-post basis, but the information gets lost in the archives, and is difficult to extract.
I would like to see a section/forum/site on CSN that organizes and summarizes treatment information in topical form with associated links
where new and old semi-colons can access information pertinent to their particular situation, and educate themselves regarding all
options available.
There is just too much information out there for any one person to make sense of, but a group effort on this site could save lives..

Comments

  • scouty
    scouty Member Posts: 1,965 Member
    #2
    Awesome idea Bud!!!!!

    Jose, how much longer are y'all going to ignore our ideas. Let's take this bad boy to the next level with some good technology. I know you can do it!!!! ACS needs to give y'all more $$$$, how can we help?

    Lisa P.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #3
    Excellent idea. Another thing I'd like to see is a "cheat sheet" (summary sheet) listing all the various chemo drugs and combination of drugs used to treat colorectal cancer. Sometimes people use the 'chemical' name, sometimes the 'brand' name, and sometimes the 'regime' (combination of drugs). Maybe also with the brief information on when used (eg stage 1, stage 4) and most common side effects. It took me a while to sort this out for myself, and it would be a nice tool for newbies.
  • kerry
    kerry Member Posts: 1,313 Member
    #4
    Hey guys, I have exhausted my efforts here in Austin with the ACS (sorry Jose). I have a lot of support and volunteer experience behind me, not to mention some $$$'s, but I get NO response.

    I have been asked by the Colon Cancer Alliance to open an office here in Austin to provide support, awareness and all other information to colon cancer patients.

    This I have decided to do.

    Kerry
  • MoonDragon
    MoonDragon Member Posts: 183
    #5
    Awesome idea, one can NEVER have enough information! I love the cheat sheet idea too!

    MoonDragon
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    kerry said:

    Hey guys, I have exhausted my efforts here in Austin with the ACS (sorry Jose). I have a lot of support and volunteer experience behind me, not to mention some $$$'s, but I get NO response.

    I have been asked by the Colon Cancer Alliance to open an office here in Austin to provide support, awareness and all other information to colon cancer patients.

    This I have decided to do.

    Kerry

    Kerry - YOU ROCK!!!

    Count me in for a CCA office in DC if they need one!!

    - Sponge... (hic - woo-hoo! great night in Miami!! Just ask Maura!!!)
  • aspaysia
    aspaysia Member Posts: 250
    #7
    spongebob said:

    Kerry - YOU ROCK!!!

    Count me in for a CCA office in DC if they need one!!

    - Sponge... (hic - woo-hoo! great night in Miami!! Just ask Maura!!!)

    Good Lord, Man! What time zone are you in? 04:18? No body GETS up that early--they just never went to bed.
    My late brother-in-law who died of colon cancer 10 years ago helped a neighbour establish a cancer suppport program at Duke. The Dragon took her 20 year old daughter and she began a career as an advocate. He was an MD/PHD that did drug research and knew where all the grant $$$ was buried. Space is a big issue there but he talked to the powers that be and by the time I became ill the place had been up and running for years. It is very well organized with computers and comfy chairs and a slew support groups. Yes, they have cookies and crap but the woman running it is such a power house and helped me and my sister so much over thed years I did not want to carp about a little sugar (sorry, Em)
    Good luck trying to move ACS off their butts. Every time I write them about a technical problem it takes at least a week for a reply about how they cannot do something.
    Aspaysia, awarding everyone on this message board because just by having this disease we are a reminder tot hose around us that IT CAN HAPPEN TO YOU!
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #8
    aspaysia said:

    Good Lord, Man! What time zone are you in? 04:18? No body GETS up that early--they just never went to bed.
    My late brother-in-law who died of colon cancer 10 years ago helped a neighbour establish a cancer suppport program at Duke. The Dragon took her 20 year old daughter and she began a career as an advocate. He was an MD/PHD that did drug research and knew where all the grant $$$ was buried. Space is a big issue there but he talked to the powers that be and by the time I became ill the place had been up and running for years. It is very well organized with computers and comfy chairs and a slew support groups. Yes, they have cookies and crap but the woman running it is such a power house and helped me and my sister so much over thed years I did not want to carp about a little sugar (sorry, Em)
    Good luck trying to move ACS off their butts. Every time I write them about a technical problem it takes at least a week for a reply about how they cannot do something.
    Aspaysia, awarding everyone on this message board because just by having this disease we are a reminder tot hose around us that IT CAN HAPPEN TO YOU!

    Well maybe I just have to become the Carry Nation of the Colon Cancer Centers and go around smashing cookies to crumbs and donuts to dust. I'll just wield my juicer and those who do not quit serving cancer feeding foodstuff will quake in my path.

    Bud, great idea!!!

    Do you sometimes wonder that those in power would prefer us to stay uninformed and ignorant in order to be more pliable to their regimens and protocols? Afterall, knowledge is power and when more and more of us demand to know we may, just may, uncover the truth?

    just a thought.

    peace, emily who has only known having to be her own advocate-ever
  • nanuk
    nanuk Member Posts: 1,358 Member
    #9
    2bhealed said:

    Well maybe I just have to become the Carry Nation of the Colon Cancer Centers and go around smashing cookies to crumbs and donuts to dust. I'll just wield my juicer and those who do not quit serving cancer feeding foodstuff will quake in my path.

    Bud, great idea!!!

    Do you sometimes wonder that those in power would prefer us to stay uninformed and ignorant in order to be more pliable to their regimens and protocols? Afterall, knowledge is power and when more and more of us demand to know we may, just may, uncover the truth?

    just a thought.

    peace, emily who has only known having to be her own advocate-ever

    Strength in numbers - we too shall overcome..
    It really should be easier for cancer patients to access ALL information pertinent to their disease
    in ONE location. Think of it Jose..Power to the people..
  • Unknown
    Unknown
    #10
    scouty said:

    Awesome idea Bud!!!!!

    Jose, how much longer are y'all going to ignore our ideas. Let's take this bad boy to the next level with some good technology. I know you can do it!!!! ACS needs to give y'all more $$$$, how can we help?

    Lisa P.

    This comment has been removed by the Moderator

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