ALL ABOARD THE PINK BUS FOR MAGGIE CAT THIS WEEK**

GlowMore
GlowMore Member Posts: 789 Member
in Breast Cancer #1

Pink Bus filling up for a trip to M. D. Adersen in Houston....  ALL ABOARD***  I'll set up the Pink Waiting Room there and maybe we can get a Courtesy Car for side trips to get food & drink....or see the sights  (between keeping the Oncs & Nurses and Technicians and BLOOD SUCKERS on their toes) 

 

We are with you Maggie Cat............Prayers that you find answers and make decisions*** 

 

Comments

  • GlowMore
    GlowMore Member Posts: 789 Member
    #2
    I think I mis spelled M D Anderson............ sawee

    Never was good at spelling.......

  • Lilly9
    Lilly9 Member Posts: 155
    #3
    GlowMore said:

    I think I mis spelled M D Anderson............ sawee

    Never was good at spelling.......

    I'm all ready in my seat!  

    I'm all ready in my seat!    Kick it Maggie Cat!

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #4
    Lilly9 said:

    I'm all ready in my seat!  

    I'm all ready in my seat!    Kick it Maggie Cat!

    Wait for Meeeee!

    I am coming as well ..    Positive thoughts, prayers and magic sprinkles coming your way, Maggie Cat!

     

    Gentle hugs,

    Vicki Sam

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    count me in
     
    Denise

    count me in

     

    Denise

  • MaggieCat
    MaggieCat Member Posts: 54
    #6
    Back Home Early

    Back home quicker than expected.  Met with an awesome team. 

    Recommendation is for the Dana Farber study (ATEMPT Trial) and the

     

  • GlowMore
    GlowMore Member Posts: 789 Member
    #7
    MaggieCat said:

    Back Home Early

    Back home quicker than expected.  Met with an awesome team. 

    Recommendation is for the Dana Farber study (ATEMPT Trial) and the

     

    Not sure

    Not sure what this all means...  Maybe when you have a little time you can lay it out for us in a bit more simple terms....  never heard of that study and have no idea what   T-DM1 Lottery is.....   sorry.    Anyway it all sounds like you are moving forward and that is comforting  :)    Stay Strong  :)

     

  • MaggieCat
    MaggieCat Member Posts: 54
    #8
    GlowMore said:

    Not sure

    Not sure what this all means...  Maybe when you have a little time you can lay it out for us in a bit more simple terms....  never heard of that study and have no idea what   T-DM1 Lottery is.....   sorry.    Anyway it all sounds like you are moving forward and that is comforting  :)    Stay Strong  :)

     

    What I Meant Glo

    Kadcyla (T-DM1) is the research drug in the ATEMPT clinical trial for Her2/neu positive BC.  3/4 of the participants get T-DM1... 1/4 get standard chemo paclitaxel and trastuzumab.  Winning the lottery to me is to be in the "random" 3/4 for T-DM1.  I like my hair though I have found a wig that looks pretty close.  MY biggest concern with taxol(paclitaxel) is the possibility of long term neuropathy.  I am a retired chemist and now am able to spend time using my hands for other things, quilting, sewing, etc.  The thought of loosing my touch sense for whatever life I have remaining scares me.  I'm only 5 weeks and 2 days into this "journey".... and well, reaching for the positives but pretty scared to be honest....

  • GlowMore
    GlowMore Member Posts: 789 Member
    #9
    MaggieCat said:

    What I Meant Glo

    Kadcyla (T-DM1) is the research drug in the ATEMPT clinical trial for Her2/neu positive BC.  3/4 of the participants get T-DM1... 1/4 get standard chemo paclitaxel and trastuzumab.  Winning the lottery to me is to be in the "random" 3/4 for T-DM1.  I like my hair though I have found a wig that looks pretty close.  MY biggest concern with taxol(paclitaxel) is the possibility of long term neuropathy.  I am a retired chemist and now am able to spend time using my hands for other things, quilting, sewing, etc.  The thought of loosing my touch sense for whatever life I have remaining scares me.  I'm only 5 weeks and 2 days into this "journey".... and well, reaching for the positives but pretty scared to be honest....

    Well of course you are...

    Of course you are scared..........we all live with that underlying fear....but you are making progress & decisions .... the drugs sound yukky...as usual.   Probably best not to look for the bad things that could happen...and concentrate on the positive.  :)          Keep us updated and prayers headed your way.  :)

     

  • New Flower
    New Flower Member Posts: 4,294
    #10
    GlowMore said:

    Well of course you are...

    Of course you are scared..........we all live with that underlying fear....but you are making progress & decisions .... the drugs sound yukky...as usual.   Probably best not to look for the bad things that could happen...and concentrate on the positive.  :)          Keep us updated and prayers headed your way.  :)

     

    Good luck with the trial
    • Hi Maggie,
    •  Do you know what are you going to get if you are not winning this lottery, what is the standardtreatment patients will be given instead of Kacyla?
    • Kadcyla has been approved for Metastaic cancer about 11/2 years ago
    • KADCYLA is the first HER2-targeted treatment of its kind for metastatic breast cancer. It is made up of 2 cancer-fighting drugs in 1:
    • The monoclonal antibody trastuzumab (the same monoclonal antibody in Herceptin®)
    • A chemotherapy drug
    • Like Herceptin, a cancer treatment you have already taken, KADCYLA is a targeted treatment
    • When you take KADCYLA, you are getting both a HER2-targeted treatment and chemotherapy—at the same time

     

    I wish you to win this lottery. Paticipating in clinical trial with potent new drug is like a full time job. It is usually more blood tests, questionaries ect

    Good luck 
  • MaggieCat
    MaggieCat Member Posts: 54
    #11
    New Flower said:

    Good luck with the trial

    • Hi Maggie,
    •  Do you know what are you going to get if you are not winning this lottery, what is the standardtreatment patients will be given instead of Kacyla?
    • Kadcyla has been approved for Metastaic cancer about 11/2 years ago
    • KADCYLA is the first HER2-targeted treatment of its kind for metastatic breast cancer. It is made up of 2 cancer-fighting drugs in 1:
    • The monoclonal antibody trastuzumab (the same monoclonal antibody in Herceptin®)
    • A chemotherapy drug
    • Like Herceptin, a cancer treatment you have already taken, KADCYLA is a targeted treatment
    • When you take KADCYLA, you are getting both a HER2-targeted treatment and chemotherapy—at the same time

     

    I wish you to win this lottery. Paticipating in clinical trial with potent new drug is like a full time job. It is usually more blood tests, questionaries ect

    Good luck 
    Yes Flower.. Std Care is

    The standard of care for the clinical trial is taxol and herceptin.   12 weeks combined, then radiation, and herceptin for the remainder of the 12 months.  It is the same treatment that the local oncologist recommended/offers. 

    Looking at travel...  Local treatment is a 20 minute drive.  The two options for the clinical trial are either a 3 hour drive each way or a 3 hour plane ride each way plus a layover in Atlanta.  The T-DM1 group is once every 3 weeks infusion for 12 months, the std/taxol group is once a week for 12 weeks, then once every three weeks for a total of 12 months.

    For the moment the decision is out of my hands... Will the insurance company ( clinical trials are not covered as a policy std, needs an individual assessment) approve the trial.... and if so, will I test OK and have the needed tumor tissue amount in cold storage to get an approval from Dana-Farber to be a participant....

    We will see!!!!

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #12
    MaggieCat said:

    Yes Flower.. Std Care is

    The standard of care for the clinical trial is taxol and herceptin.   12 weeks combined, then radiation, and herceptin for the remainder of the 12 months.  It is the same treatment that the local oncologist recommended/offers. 

    Looking at travel...  Local treatment is a 20 minute drive.  The two options for the clinical trial are either a 3 hour drive each way or a 3 hour plane ride each way plus a layover in Atlanta.  The T-DM1 group is once every 3 weeks infusion for 12 months, the std/taxol group is once a week for 12 weeks, then once every three weeks for a total of 12 months.

    For the moment the decision is out of my hands... Will the insurance company ( clinical trials are not covered as a policy std, needs an individual assessment) approve the trial.... and if so, will I test OK and have the needed tumor tissue amount in cold storage to get an approval from Dana-Farber to be a participant....

    We will see!!!!

     

    Waiting with you Maggie Cat ....

    tap tap tap ...  hummmm  hate to play this waiting game.  tap tap tap

     

    Vicki Sam

  • GlowMore
    GlowMore Member Posts: 789 Member
    #13
    VickiSam said:

    Waiting with you Maggie Cat ....

    tap tap tap ...  hummmm  hate to play this waiting game.  tap tap tap

     

    Vicki Sam

    OFF THE BUS AND INTO THE WAITING ROOM**

    This Pink Waiting Room needs some new chairs.........it's getting crowded in here.

    Hope you learn soon Maggie..............  Hugs,  Glo

  • MaggieCat
    MaggieCat Member Posts: 54
    #14
    GlowMore said:

    OFF THE BUS AND INTO THE WAITING ROOM**

    This Pink Waiting Room needs some new chairs.........it's getting crowded in here.

    Hope you learn soon Maggie..............  Hugs,  Glo

    Bus is heading out - again...

    Tomorrow morning we head out to University of North Carolina @ Chapel Hill Medical School. Last stop.  Meeting with MO and RO.  Plan to sign the ATEMPT Trial consent for the closer location (vs Houston/MD Anderson).  Our family has a wonderful history with this institution.. going back several generations.  Our son did his undergraduate work at UNC...  I am, however, a NC State grad, heading into Tarheel territory .. wish me the best!!!  Maggie

     

  • GlowMore
    GlowMore Member Posts: 789 Member
    #15
    MaggieCat said:

    Bus is heading out - again...

    Tomorrow morning we head out to University of North Carolina @ Chapel Hill Medical School. Last stop.  Meeting with MO and RO.  Plan to sign the ATEMPT Trial consent for the closer location (vs Houston/MD Anderson).  Our family has a wonderful history with this institution.. going back several generations.  Our son did his undergraduate work at UNC...  I am, however, a NC State grad, heading into Tarheel territory .. wish me the best!!!  Maggie

     

    SOUNDS GOOD MAGGIE **

    This sounds very good Maggie....and I can see the hope and the uplift in what you wrote above....so prayers for safe travel and let us know how it goes.  I can't travel with you tomorrow because I have to take my own bus for more Blood Work..........have to have my Gallon of Blood taken again tomorrow to do the Tumor Marker  CA 27-29 over again since it was too high in Sept....and they are doing about 3 or 4 more.......but this time I'm going to a better Lab so maybe they won't punch all the way thru my arm like that last girl did.  :)     Hugs for continued Encouraging news.    

  • MaggieCat
    MaggieCat Member Posts: 54
    #16
    GlowMore said:

    SOUNDS GOOD MAGGIE **

    This sounds very good Maggie....and I can see the hope and the uplift in what you wrote above....so prayers for safe travel and let us know how it goes.  I can't travel with you tomorrow because I have to take my own bus for more Blood Work..........have to have my Gallon of Blood taken again tomorrow to do the Tumor Marker  CA 27-29 over again since it was too high in Sept....and they are doing about 3 or 4 more.......but this time I'm going to a better Lab so maybe they won't punch all the way thru my arm like that last girl did.  :)     Hugs for continued Encouraging news.    

    Signed and Interesting RO Discussion

    Thanks Glo and all of the other gals!  Signed the papers and now have to leave it to my tissue tests and amount available, future blood draw and heart health as to the outcome of "in or out" for the Dana-Farber clinical trial. 

    Met with some amazing people.  The RO understudy/fellow graduated from my alma mater NCSU  - biochem as undergrad (biochem was my minor) - Then met with the Dept Head in RO.  Lengthy discussion concerning partial breast irradiation vs whole breast irradiation.... and the history of how BIG lumpetomies were in the past and how much SMALLER today... oh and how that might influence one's view in reviewing the literature in support of (or not) decisions to go smaller or full...

    Bus is now unloading.... handing out imaginary tomatoes and peppers ... our garden produced so much this year!!!  Wish I could send some to you!

    Maggie

Discussion Boards