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PARP Success Stories??

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thinkpositive View Drop Down
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    Posted: 28 May 2010 at 3:59pm
It seems a lot of us are putting a lot of hope into the PARP.  Has anyone been on it long enough to report a real success story?   
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hdeall Quote  Post ReplyReply Direct Link To This Post Posted: 28 May 2010 at 8:01pm
Thanks for asking this question- it will definately be good to hear what the actual results have been.  Plus, I was wondering about side effects from this cocktail....if anyone can share on that it would be great.Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ameline Quote  Post ReplyReply Direct Link To This Post Posted: 01 Jun 2010 at 10:01pm
After fighting like a tiger to get on a PARP trial (I qualified for none having been treated by everything under the sun), I THINK I'm in -- CT done, bloodwork done, genetic study done, final appointment before pills in mouth not done.  The PARP I qualified for is ABT288(?), a pill.  There are so many and this is a phase 1 trial which means I am going to be sitting in a chemo lab for 9 hours having them draw blood by the hour after taking the pills to determine toxic levels.  Sounds really scary but I'm running out of options so off I go.  I'll keep you posted.Question
DX12/02mast,A/Cx4,NED,4/07liver,lungs,bone mets, Tx/Ax4,5/08liver/lymph mets, gemzar/sorafinibfail,A/Ax2+RFfail,doxil+cispfail,xelodia fail,navelbine fail,ixempra1hit, ABT888fail, A+Apresent,brain met
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: 01 Jun 2010 at 10:45pm
Ameline,  please do keep us posted.  I should be starting the week of June 14th.  I still have tests to do but hope to get over all the hurdles.   Wish we had more survivors with first hand experience and success to talk with.  

Good luck ,  ChrisSmile
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: 02 Jun 2010 at 2:32am
I just wanted to mention that my onc said yesterday that the PARP study is about 3 weeks from starting the process of evaluating results, and he said that means it could be available by the end of the summer.

So that echoes what other people are saying -- lets keep our fingers crossed the results end up being as good as we're all hoping for!
Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.
4xAC-->dd Taxol. Dbl mast, 6/10. Rads done, 8/10. NED, 6/10, 11/10, 3/11, 7/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: 04 Jun 2010 at 9:52pm
Today, my onc speculated that after some big meeting this summer where trials/studies/papers will be presented, Parp might soon thereafter get released.  He thinks they are delaying the compassionate care sites because they don't want bad results to suddenly appear and mess up fda approval.  Interesting, at least.  suec
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: 05 Jun 2010 at 12:18pm
Does anyone else find it odd that we do not have any actual participants or success stories from our group?    We have a lot of people trying to get on the study based on what we hear is a great drug but no first hand experiences.   I am hoping this drug is as good as the PR.   Confused
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mutti Quote  Post ReplyReply Direct Link To This Post Posted: 05 Jun 2010 at 1:17pm
As I understand, the PARP Inhibitor is most successful  for women who are BRCA 1 and 2 positive.  I started the clinical trial at my oncologist's office last September.  I felt so lucky to have been able to qualify for the study AND make it into the group that got the PARP in addition to the standard treatment (Carboplatin + Gemzar).

After 2 cycles my scans showed mixed results (some reductions, but also some progressions as well as some new  lesions).  That meant I was out of the trial.  I was bummed.  Since then I found out that I'm BRCA 1 and 2 negative and have been on 3 other protocols with the same mixed  results.

I know one lady who was in the trial with me had fantastic results after her first scan.  At the time she didn't know her BRCA status.

Andrea in Georgia


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mutti Quote  Post ReplyReply Direct Link To This Post Posted: 05 Jun 2010 at 1:21pm
I forgot to mention that I was on the BSI-201 PARP Inhibitor which was given intravenously.

Andrea in Georgia
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: 05 Jun 2010 at 2:33pm
There were several women on here who had tried PARPis in the very very early trials, I think even without carbo and gemzar.  I don't remember them having a lot of success, at least not for long.  But the trials have been big and the results published impressive, so it has to be working for a whole lot of women (hopefully not just those with BRCA mutations).   I think one woman who tried it recently with Carbo/Gemzar stayed on it for a long time to good effect.  I don't think she was BRCA mutated.  Then there have been about three others I can think of who tried it in the current incarnation and were promptly booted due to progression.  I agree that so far, what we've seen on here does not exactly scream miracle-drug, despite all the hoopla.   ASCO is going on right now, so there should be more info coming out about this soon.  I just hope someone had the good sense to calculate the response statistics in subgroups of TN with and without BRCA mutations so we know how specific it is.  The other thing to consider is it may really help the next wave of women with early stage bc if given as part of their treatment  (doing a good job preventing met disease in the first place even if it doesn't help a lot of women like us who already received initial treatment).  Herceptin has been like that - it provides about the same number of added survival months to women with Her2+ met disease as PARPi does to ours, but importantly saves a huge number of women with early stage bc from ever recurring (reduces rate by about 10% (absolute)).
Anyways, we'll see how it evolves and let's keep eachother posted.
much love,
Denise


Edited by dmwolf - 05 Jun 2010 at 2:34pm
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kemrdx Quote  Post ReplyReply Direct Link To This Post Posted: 06 Jun 2010 at 2:49pm
I've been on the BSI Parp w/Gemzar & Carbo trial since my diagnosis of stage IV in Dec 09.  My original lesion on the chest wall was >2cm and is now <1cm, I also have pleural mets with fluid build-up which I still treat with monthly Thorocenticis.  I have had to delay chemo twice due to very low platelets and will be getting a reduced dose this cycle.  Other than the blood issues and mild shortness of breath from the fluid, I really have no major SE's.  I do get CT scans every 6 weeks and am currently considered stable.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: 06 Jun 2010 at 3:39pm
Wow, it sounds like you are doing really well.  I'm so happy for you!  Thanks for letting us know.  By the way, do you know whether you have a BRCA1 or -2 mutation? 
(Welcome to our community, by the way.  Did you just find us, or just decide to join?)
much love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kemrdx Quote  Post ReplyReply Direct Link To This Post Posted: 07 Jun 2010 at 9:00am
I've not been tested since I am the only one in my family to have had breast cancer.  I was originally diagnosed in Aug of 2008 had neoadjuvant chemo TAC X 6, bilateral mast (didn't want to wait for the other shoe to drop), radiation and DIEP recon in Oct 09.  Had trouble breathing in Dec 09 and found out the beast was back :(  I have just been visiting the site and when I saw the post I decided to join since no one else seemed to have any personal experience with the PARP trials - thank you for the welcome!!  Kathy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote butterfly Quote  Post ReplyReply Direct Link To This Post Posted: 30 Jun 2010 at 7:59am
Hi Everyone
I have been on PARP trial since Oct 08. I have posted here infrequently... had PARP and Taxol initially. Taxol ended Feb 09. Have continued on daily PARP tablets since. Initial scans showed reduction, then stability, now slow growth... however i am lucky to be continuing on trial, as the trial has closed, so the guidelines are a little more flexible.... if they weren't I would be off it. I am living well, and have found PARP to be very tolerable, few side effects.... Success??? Maybe not...Depends what we view as success..... Ideally NED would be good, or stability, but I will take feeling well and heading towards 2 years on the trial in Oct, next will be chemo... as not many other options... unless another trial comes up that is suitable...
 
All the best
Jo
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Diamond2Wheels Quote  Post ReplyReply Direct Link To This Post Posted: 30 Jun 2010 at 3:23pm
I'm going into a PARP as the hospital discovered more cancer...originally in left breast...took that off along with the pectoral muscle & every possible layer under the skin so I am...concave with lovely scars.  Having a time wearing any sort of bra to hold up my prosthetic breast of 38D...now to find that there are cancers adhered to my main vein in my clavicle, my rib cage, my lungs and a lymph way over on the other side (my right side under my arm)

When does this STOP already!

MSKCC does not treat TNBC...which I did not know...they all say they treat cancer, and cancer is just that...just cancer!  Well not TNBC!  Lets get a grip here.

I saw a lovely doctor who visited my bedside in the hospital after 3 harsh doses of radiation my nerves went a-flutter and had uncontrollable neck spasms and pain in my chest.  This doctor referred me to a doctor who does clinical trials with PARP...I am somewhat excited...I say somewhat because I just dislike taking drugs...unless they make you happy!

So, on Friday after radiation, off I go to meet with him...and I will also interview another...which I am on my way there now with my Tea Cup Yorkie who just became a 'service dog' (I thought she was so sweet that I'd love to bring joy to some of the kids in the hospital..since my grandchildren love her)

I'll keep you posted as long as you keep me posted of any Success Stories...I'm praying...

Peace and Hugs of Love
Tia

Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had
Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Diamond2Wheels Quote  Post ReplyReply Direct Link To This Post Posted: 30 Jun 2010 at 3:28pm
Jo, the wonderful Butterfly

Would love to hear more from you!  I am so interested in this PARP and wonder why they have not placed it on the market for us TNBCers.

I'm happy to hear you are doing well and I pray that everything keeps up with your spirits as well as your health.

Hugs of Love
Tia
Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had
Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: 30 Jun 2010 at 7:36pm
sorry for pitiful email -  typing one handed after going thru gamma knife and shoulder surgery last thurs.   i had seizure and fell into eliptical so now have titanium shoulder to add to my other cancer trophies.       the good news is i was drawn for parp so will start on tuesday along with carbo gemzar combo      there was only one lesion on the right front lobe so hopefully gamma took care of that     praying parp will work on lung mets and hold off other areas   am hoping that i have a lot of tnbc sisters having great successes so we can celebrate     hugs chris
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kemrdx Quote  Post ReplyReply Direct Link To This Post Posted: 01 Jul 2010 at 4:54pm
Hi all:) Just an update - I'm still on the PARP trial and still stable, however due to the chemo (Gemzar & Carboplatin) my blood counts are not able to keep up.  I've had to have packed blood  X3 and platelets X2 so far, not so concerned about red counts since it just makes me tired but the platelet thing is very worrisome.  I've had my chemo both reduced and delayed twice so now they are going to put me on carbo only with the PARP, so we'll see how that works.  Keeping my fingers crossed.  Overall I consider the trial a success, especially since I have none of the typical sickness side effects that went along with my original TAC chemo and the lesions are smaller and stable.  Wishing you all well and hoping this stuff gets put on the market as soon as possible.  Kathy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bevk Quote  Post ReplyReply Direct Link To This Post Posted: 01 Jul 2010 at 7:00pm
I met with a clinical trial doctor recently who said that since one of the PARPs has completed Phase III testing, and applied to FDA for approval, the other companies are kind of in a holding pattern.  The (moving) estimate for approval was February.  I am praying for a fast approval.  The Phase III conclusions were not ready to present at ASCO, so no one really knows how good it works.
Dx 9/07, stage 1, node neg; lumpectomy, mammosite rad; A/C&T, herceptin; 11/08 mets -lungs & lymph; navelbine, gemzar, ixempra/xeloda, avastin/abraxane, brain mets 4/10, avastin/xeloda, avastin/carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bonnie Quote  Post ReplyReply Direct Link To This Post Posted: 06 Jul 2010 at 5:58pm
Kathy:  Your issues sound so much like my daughter, Ashley's.  Low platelet and WBC counts have delayed and reduced treatments a number of times since she's been on Carbo and Gemzar.  Two hospitalizations, 3 packed blood transfusions, 4 platelet transfusions.  One good thing is that even if her counts are too low to get chemo, she still gets the PARP.  They haven't mentioned removing Gemzar yet from her treatment.
Bonnie
Bonnie - Daughter Ashley dx TN 8/09 @ 22; St3, BRCA1/2-; AC&Ixempra done 2/10; mets to lung 3/10; G/C 3/10; PARP 6/10; sternum mets 9/10; NK012 failed; mets to liver, spine, kidney; Avastin/Xeloda
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