Finally in PARP Phase 3

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g94u67
g94u67 Member Posts: 436
edited June 2014 in Triple-Negative Breast Cancer

It's been a tormenting rollercoaster 2 months.(& almost 2 years) But after battling IPA groups, winning my Ins. appeal, moaning, groaning, crying, pleading and praying, I have finally made it into the PARP Inhibitor Phase 3 study with UCLA. I start tomorrow. Unfortunately I did not get randomized for the new PARP drug but I have my foot in the door with a team who understands us TN's.

After undergoing 8 rounds of AC/T and 4 rounds of Ixempra & Xoleda (to no avail) I'm ready for round 3. My bc is still localized to my rt. Axilla. I'll be doing the Carbo & Gemzar chemo on Day 1 & Day 8.

If you have undergone PARP Phase 1 or 2, currently undergoing the clinincal trial,  a TN sister battling or just a bc sister who feels me... I'd love to hear from you.

Wish me luck. Much Love.

Jeannine

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited February 2010

    I participated in phase 2 PARP in the UK. Here it is not being developed for TN but for genetic cancers, which was why I was accepted (I'm BRCA2). I found it very tolerable, with few side effects. It held the cancer stable for several months, before I had further progression, and needed therefore to return to conventional chemo. Good luck.

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  • g94u67
    g94u67 Member Posts: 436
    edited February 2010

    Thanks Elaine. Very interesting. A researcher told me it is very beneficial for BRAC+ people. Unfortunately I'm not getting yet. He also told me very low toxicity. At least I'm getting the chemo though and am in the trial.

    (You didn't do Herceptin?)

    Take care

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Good luck to you, jeannine, I have heard great things about PARP.  The side effects appear to be minimal.  Keep fighting.  Thinking of you as you heal.  Maryiz

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  • g94u67
    g94u67 Member Posts: 436
    edited February 2010

    Thank you Maryiz! I will.

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited February 2010

    I did indeed do herceptin-initially with taxotere and had good results. But when given in isolation the tumours quicky regrew. I'm now on carboplatin...and herceptin again, and hoping for promising results. A scan done after 3 cycles showed stabilty. As I am stage 1V I will need treatment for the rest of my life, so am hoping to take advantage of as many drugs as possible. Since the PARP was originally designed to be used in conjunction with chemo, then I plan to use it like this in the future (have already been given tentative permission on compassionate grounds from the research team).

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited February 2010

    I did not qualify for the PARP trials in Southern Cal,so onc put me on the combo I would have gotten had I been in your situation (accepted but not in the PARP arm).  I'm currently on cisplatin and gemzar.  It is a pretty easy chemo combination and I think cisplatin is a bit tougher than carboplatin, so you should be good.  Tiny bit of hair thinning, but no hair loss.  Slight nausea and tiredness, but very few problems with taste buds, neuropathy, etc.  Best of luck to you and here's hoping it's a winning combination for us both.

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  • thenewme
    thenewme Member Posts: 1,611
    edited February 2010

    Jeannine,

    Wishing you nothing but the absolute best results and minimal side effects!!!!   Will you be switching all your care to the new team?  It's wonderful that you'll be able to get some TN-specific advice!

    ETA:  Cathy - best to you too!

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  • g94u67
    g94u67 Member Posts: 436
    edited February 2010

    Hi Cathy: It was very difficult to qualify for PARP. I made it out of 3. (2 got the drug) I didn't comprehend that and have some questions. They only gave the screening a 2 wk. period and if your blood counts were down or anything else questionable, you were excluded. (There were many sites in Ca so I got lucky because UCLA insisted on the study and extended the date).The Research Co should have allowed a 2nd screening in IMO since there are so few trials for us TN's. Onc. Nurse said I will lose my hair but let's see. It's just starting to grow back!  Yes..sending out positive vibes for both of us! :)

    Newme: Thank you for the warm wishes! I feel great (yesterday was day 1) and I feel inspired. I think I will be switching my team (next year at open enrollment) but if I'm eliminated from the trial, I'm in a catch 22. So let's pray I can stay in the trial for a long time.

    Prayers & Hugs,

    Jeannine

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited February 2010

    Jeannine--so glad you got into the study.  UCLA is a great place! My aunt with bc had a stem cell xplant there 10 years ago and was treated very well and remained NED til she died (suicide unfortunately).

    Anyway,  I am now stage IV but had carboplat so I am excluded from the PARPs...

    Wishing you well and keep in touch

    Carole 

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  • quarterdeck
    quarterdeck Member Posts: 4
    edited March 2010

    PARP does indeed seem to be  the treatment of the future.  Where can one get it?  Are there PARP trials for people who are just estrogen receptor positive and not TN or genetic?  When is it likely to be FDA approved?

     I have stage 1V breast cancer that was treated with CMF in 2001, Arimidex for five years after, then it came back in 2007.  I was on Faslodex and Zometa for two years, and now I will be taking Avastin, Zometa and Xeloda.  But I would like to be taking PARP.  Can you help? 

    I could go to UCLA if I  could get into a trial.  

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  • g94u67
    g94u67 Member Posts: 436
    edited March 2010

    Hello there Carole & Quater,

    Carole: I do feel like I'm in the BEST place possible for my BC. When I returned this past Wed. for TX#2, they asked so many more questions (because of study) than my prev. onc. and they treat you very kind. Thanks for the warm wishes! I hope to get the PARP drug though. Let's hope!!

    Quater: The PARP clinical study is only for TN's that are Stage IV and have not previously been on Carbo/Platinum chemos. Since you are estrogen positive, unfortunately the PARP inhibitor would not be used for your type. It is still in the clinical rounds but it seems they are pushing it to be marketed soon - hopefully within the next 2 years. I will check w/my coordinator on other studies being conducted. What are your receptors? You can also check at www.clinicaltrials.gov for current studies. But I must say, UCLA is truly the one best facilities you can be at and is worth the 2 hour drive home.

    Hang in there! I will let you know any info I get.

    Jeannine

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  • thenewme
    thenewme Member Posts: 1,611
    edited April 2010

    Jeannine,

    I've been following your progress and I'm celebrating your scan results!!!  I'm so very happy for you!  Such awesome news!!!

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  • g94u67
    g94u67 Member Posts: 436
    edited April 2010

    Thank you Newme!

    I just don't want to get my hopes up (like last time) because anything can change at anytime. We do though, have to celebrate our good news and CT's when we have them!

    I just want to dance w/NED for a long time.

    Thanks for the support!

    Jeannine

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  • JWallace
    JWallace Member Posts: 33
    edited May 2010

    My mom is on parp and it is a very tolerable chemo. She is too a TN. She did loose a little bit of weight on it but other than that she is tolerating it very well. 

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  • g94u67
    g94u67 Member Posts: 436
    edited May 2010

    Hi JW

    That's good to hear.  After a lenghty discussion w/my team, I may be out of the study soon. If my next CT scan is clear, we've decided to end my TX .  The good thing is that I can go on Carbo/Gemzar if I ever need to (along w/PARP).

    The PARP trial has been a blessing and I'm very grateful I got in.

    I wish your mom all the best! Happy Mother's Day!

    Jeannine

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  • thenewme
    thenewme Member Posts: 1,611
    edited May 2010

    Hi Jeannine,

    Sorry you're having such a hard time.  I'll be sending lots of good vibes for a clear CT scan for you and some much-needed time off!   Hope you had a great Mother's Day too!

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  • g94u67
    g94u67 Member Posts: 436
    edited May 2010

    Thanks New,

    Well my CT was clear again (AMEN!!) and I had my final exit - end of TX appt. @ UCLA.  Now I'll be on to RADS then my oophorectomy. I'm almost there...

    I'm feeling much better since it's been a month I'm off chemo. & my hair is growing.

    I hope your mom's day was great too!

    Jeannine :)

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