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  1. Replies
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    Keith, I had the slurred speech with my last bag...

    Keith, I had the slurred speech with my last bag of FOLFIRINOX every infusion.i couldn't focus with my eyes and my ability to walk was more like shuffling. I was also better by bedtime. Hang in...
  2. Thread: Ca 19-9

    by susanmac
    Replies
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    1,461

    Jackie, to change your signature, go up to the...

    Jackie, to change your signature, go up to the top right next to your login
    go to "settings"
    Then under "MY settings"
    Go to "Edit signature"

    Took me awhile to figure it out...I think...
  3. As i understand clinical trials for PARP...

    As i understand clinical trials for PARP inhibitors and gene mutations have dealt Breast Cancer exclusively. SO FDA approved drugs for BRCA are approved for BC but not PC.!!! my ONC says this...
  4. Thread: Ca 19-9

    by susanmac
    Replies
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    1,461

    I am SO happy for you Jackie ;) Whoo Hoo!

    I am SO happy for you Jackie ;)

    Whoo Hoo!
  5. more good info....thx Dave. My BRCA came back...

    more good info....thx Dave. My BRCA came back negative so that's something good.
    I have some really good info to gointo my ONC appt. tomorrow!
    Hhope you are doing well!
  6. Dave, i do not qualify for the John Hopkins 2 day...

    Dave, i do not qualify for the John Hopkins 2 day clinic :(
    However i may qualify for a Neoantigen DNA vaccine trial. What's your 2 cents on this?
  7. Thread: Olaparib

    by susanmac
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    4
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    463

    Dave, that's a good point....im sure that why...

    Dave, that's a good point....im sure that why she was pointing towards a trial. I assume its the same for the other PARP drugs? Thx Dave!

    Rambling, thanks for the links!
  8. Thread: Olaparib

    by susanmac
    Replies
    4
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    463

    Olaparib

    I may have mentioned a while back that my guardant 360 blood test came back with an ATM mutation.
    The suggested FDA therapy is Olaparib. My onc said there was a trial BUT i couldn't do it I took...
  9. All great suggestions Dave...i really appreciate...

    All great suggestions Dave...i really appreciate it!! Making my checklist now.

    I am feeling amazing. Getting ready to go camping labor day weekend and then further in the fall to see the leaves.
  10. What do you think about my having the SBRT in...

    What do you think about my having the SBRT in June, and then nothing until i am scanned in October? we know about the ATM but still waiting on BRCA 1 and 2.....i feel like a sitting duck just...
  11. I am now 4 weeks past my radiation and feeling...

    I am now 4 weeks past my radiation and feeling much better. Fatigue and chronic pain has subsided ;)
    Now i just wait to be scanned in October. So hard to just wait...no treatment. I also got...
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    Keith, I am sorry to hear about your diagnosis! ...

    Keith, I am sorry to hear about your diagnosis! But you are in a good place....a lot of great people and information!
    Good luck with your treatment, You can do this!!!
  13. Thread: ascites

    by susanmac
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    Good news Jackie! I seem to have that...

    Good news Jackie! I seem to have that tightness quite often...and i usually find that it turns out to be gas. ;)
  14. thx for all your feedback. I got through the...

    thx for all your feedback. I got through the full week and did pretty well...I think Ive conquered my MRI fears ;) But this week i've had a lot of abdominal discomfort and a very bad/strong pain...
  15. I'm trying to find some patient...

    I'm trying to find some patient experiences/feedback from SBRT . I dont think i will find much on View Ray specifically b/c its so new and only in 9 locations in the world. What i want to know...
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    can you only get PARP inhibitor thru a trial? Has...

    can you only get PARP inhibitor thru a trial? Has she been taking that alone or in combo w/any other treatment? THanks ;)
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    I had hives once after my 2nd session of...

    I had hives once after my 2nd session of gem/abrax...also no breathing issues. THey went away by next infusion.
    When i was on Folirinox i experienced the same muscle twitches (they would last...
  18. ....im kinda hoping i dont have those issues...my...

    ....im kinda hoping i dont have those issues...my plate is kind of full..but if i do...i will take your advice thank you! ;)
  19. thx Jamie, I know will have to take omiprazole...

    thx Jamie,
    I know will have to take omiprazole (pepcid) for 90 days post treatment to protect my stomach lining. That makes me a lil nervous.
    I also cannot expect results immediatlly after...
  20. here is a quick overviews on the VIew Ray 5 day

    I'm not sure of all the differences either but this video may help!


    www.viewray.com/mri-guided-roar/
  21. I’ve been in quite a few MRI machines over the...

    I’ve been in quite a few MRI machines over the last 6 years, for 45-90 minutes at a time. I’m the one that falls asleep and they have to wake me up to breathe more deeply. If you are “cooperative”,...
  22. VIEW RAY MRI guided adiation vs traditional radiation

    I have a node that has appeared in my surgical site, it is cancer and the course of action suggested is radiation. I was presented with the option of the traditional 5 week radiation OR a newer...
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    thx Jaimie, i think about you!! Folifirnox...

    thx Jaimie, i think about you!! Folifirnox was rough for me....my digestion was just a mess...i couldnt leave the house b/c i never knew when i would have to go! I never thought i would poop...
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    thx Dave! When i was on Folifirnox i was right...

    thx Dave! When i was on Folifirnox i was right out of surgery and NED...but my ca 19 did go up by small amounts. WE chalked it up to inflammation. After Folifirnox was completed, about a...
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    in over my head...help me ;)

    So, see below for my story, but long story short, diagnosed 3/18 w/stage 2 pc....3 mos gem/abrax....distal pancreatomy/splenectomy...3 mos Folirinox.
    Ned since 1/19...BUT a node showed up in my...
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