What's Coming Down the Pike

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  • GSRon
    GSRon Member Posts: 1,303 Member
    Did someone mention PARP..?

    Did someone mention PARP..?  Here is a 30 minute session from the AACP meeting...  lots of good info... and we can see how results can happen when people team up..!  Hope this treatment starts to help you all.. very soon..!!!  And yes some big words.. but lots of good stuff in easy to understand language.. at times...

    http://webcast.aacr.org/console/player/23132?mediaType=podiumVideo&

    Ron

  • scantillon
    scantillon Member Posts: 3
    Hi Again

    I haven't had energy to comment (or even to read) lately but here I am today.  Just learned my CA-125# increased (is now 100) rather than decreased this month. Gemcitabine has lost its magic touch for me. If the change remains within a 10 point range they will consider it evidence of "stable disease" but in my experience once my number rises it continues to rise.  My very clever cancer cells have figured out a way to grow again.  Treatment is hard enough to suffer when it actually works, but so much more discouraging when it appears not to be doing its job. I won't know more until May 12th.

    Ron (cuz o' mine) thanks for the helpful links.  I will try to look through them between clients (yes, I am still working) or at end of day if my energy holds.  Still waiting for SSDI to review the medical records... soooooo sloooooowwwww.  

    Sometimes I think they're waiting for me to die so they don't have to bother paying at all.  okay, consider some of this moodiness to be caused by steroids on board. I apologize for my glumness.

    on the plus side: I am waiting to hear the results of my gene mutation study.  That might give us more information/options, too.  We'll see!

    I think Matzo Ball Soup for lunch will cheer me up.  Happy Passover!

    here's my own digital story made about 14 months ago - before my first recurrence (I am now in my second recurrence)
     http://www.youtube.com/watch?v=zzcPlItUnw0‎ 

  • GSRon
    GSRon Member Posts: 1,303 Member

    Hi Again

    I haven't had energy to comment (or even to read) lately but here I am today.  Just learned my CA-125# increased (is now 100) rather than decreased this month. Gemcitabine has lost its magic touch for me. If the change remains within a 10 point range they will consider it evidence of "stable disease" but in my experience once my number rises it continues to rise.  My very clever cancer cells have figured out a way to grow again.  Treatment is hard enough to suffer when it actually works, but so much more discouraging when it appears not to be doing its job. I won't know more until May 12th.

    Ron (cuz o' mine) thanks for the helpful links.  I will try to look through them between clients (yes, I am still working) or at end of day if my energy holds.  Still waiting for SSDI to review the medical records... soooooo sloooooowwwww.  

    Sometimes I think they're waiting for me to die so they don't have to bother paying at all.  okay, consider some of this moodiness to be caused by steroids on board. I apologize for my glumness.

    on the plus side: I am waiting to hear the results of my gene mutation study.  That might give us more information/options, too.  We'll see!

    I think Matzo Ball Soup for lunch will cheer me up.  Happy Passover!

    here's my own digital story made about 14 months ago - before my first recurrence (I am now in my second recurrence)
     http://www.youtube.com/watch?v=zzcPlItUnw0‎ 

    Yestarday was pretty good

    Yestarday was pretty good  out here...  My Cardio doc was pleased and took me off of the amlodipine... blood pressure is on the low side of normal without it... nice..!   Then I went to a community Seder at UCSC (Santa Cruz)... there were like 80 students, over half coeds... sat at a table of them... food was awesome..    I told them to look around the room... about 8 people per table... then told them that the odds are that one person per table will have Cancer... and then said.. yes, and at this table, I am it...   I got some odd looks, but the smartest one, politely smiled and thanked me...    No, not the same as we did so many years ago... but then it made me feel 40 years younger....

    Soooze.... I have a hunch some of the ladies here will know if that kind of rise is an indicator of anything or not...  this is an area I have no experience...    But also, as I suggested there are a bunch of clinical trials... one of my favorite people here is preparing for the PARP trial... hope she gets in..  Lots of optimism over this one...  And lots of new treatments on the horizon..

    I have also registered for another confence later this year..  And tomorrow is the big day.. find out what my scans say...

    Be Well All..!!

    Ron

  • scantillon
    scantillon Member Posts: 3
    GSRon said:

    Yestarday was pretty good

    Yestarday was pretty good  out here...  My Cardio doc was pleased and took me off of the amlodipine... blood pressure is on the low side of normal without it... nice..!   Then I went to a community Seder at UCSC (Santa Cruz)... there were like 80 students, over half coeds... sat at a table of them... food was awesome..    I told them to look around the room... about 8 people per table... then told them that the odds are that one person per table will have Cancer... and then said.. yes, and at this table, I am it...   I got some odd looks, but the smartest one, politely smiled and thanked me...    No, not the same as we did so many years ago... but then it made me feel 40 years younger....

    Soooze.... I have a hunch some of the ladies here will know if that kind of rise is an indicator of anything or not...  this is an area I have no experience...    But also, as I suggested there are a bunch of clinical trials... one of my favorite people here is preparing for the PARP trial... hope she gets in..  Lots of optimism over this one...  And lots of new treatments on the horizon..

    I have also registered for another confence later this year..  And tomorrow is the big day.. find out what my scans say...

    Be Well All..!!

    Ron

    rising ca-125#

    I spoke to the clinic when I saw the blood results and the "fellow" that responded assured me that if the number remains within a 10-digit range they don't consider it a sign of new disease. IT IS MY EXPERIENCE, HOWEVER, (having been through this twice before) that once my number starts to rise, it keeps on going up.  This triggers a scan for new evidence of disease and whatever treatment comes next.  I know how it works FOR ME.  Clearly, the "fellow" in the clinic isn't as familiar with my case as I am.  I'm willing to be wrong. I would love to be wrong about this. 

     

    AND my matzo balls are ready!

  • GSRon
    GSRon Member Posts: 1,303 Member

    rising ca-125#

    I spoke to the clinic when I saw the blood results and the "fellow" that responded assured me that if the number remains within a 10-digit range they don't consider it a sign of new disease. IT IS MY EXPERIENCE, HOWEVER, (having been through this twice before) that once my number starts to rise, it keeps on going up.  This triggers a scan for new evidence of disease and whatever treatment comes next.  I know how it works FOR ME.  Clearly, the "fellow" in the clinic isn't as familiar with my case as I am.  I'm willing to be wrong. I would love to be wrong about this. 

     

    AND my matzo balls are ready!

    Yes sadly the wait and see...

    Yes sadly the wait and see... so when is your next CA125 test..?  I was hoping one of the other women would reply.. they have a lot more experience than I do...  So, do you put any garlic in your Matzoh Balls..?  Which reminds me.. time to get mine going...  Tomorrow is a big day here.. first another Phlebotomy, then meet with a couple of Oncologists to discuss my scans... 

    Love

    Ron

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    Yes sadly the wait and see...

    Yes sadly the wait and see... so when is your next CA125 test..?  I was hoping one of the other women would reply.. they have a lot more experience than I do...  So, do you put any garlic in your Matzoh Balls..?  Which reminds me.. time to get mine going...  Tomorrow is a big day here.. first another Phlebotomy, then meet with a couple of Oncologists to discuss my scans... 

    Love

    Ron

    More trials

    Hi All..!!  OK here is a great video.. much easier to understand than some... the message is pretty clear, and exciting..  I bet there is a trial that is for Ovca as well... check out the Governemtn clinical trials section and see if there is a trial for you...

    http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

    Oh yes, scan results were mostly good... the Warden gave me another 6 weeks off for bad behavior... heh..

    Ron

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    More trials

    Hi All..!!  OK here is a great video.. much easier to understand than some... the message is pretty clear, and exciting..  I bet there is a trial that is for Ovca as well... check out the Governemtn clinical trials section and see if there is a trial for you...

    http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

    Oh yes, scan results were mostly good... the Warden gave me another 6 weeks off for bad behavior... heh..

    Ron

    Video

    Hi All... here is a link to an interesting video on Immunotherapy...  I did not hear OVCA specifically mentioned, but "all Cancers" is pretty inclusive... and I know there are some Clinical Trials going on for OVCA...   This is an hour long video... pull up a chair... a bad of popcorn or..??

    https://www.youtube.com/watch?v=XGeqAEr1RnE&list=UUIRzxohZ6SbwsPqHFQGMJ7A

     

    Ron