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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 6:57pm
Susan,

I agree with you.  Years ago my father, who was suffering from emphysema, was then dx with pulmonary fibrosis.  They gave him a time frame and he lived more than twice as long as they predicted.  He was a fighter and said I'm going to show all these doctors they're wrong.   I think he was one of the longest hospice patients they had - over 2 years. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Ameline View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ameline Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2010 at 2:56pm
To all:
 
Just totally failed ABT888 PARP Phase 1, single agent trial.  After waiting, dangerously waiting some more, and finally being accepted my tumor markers were at 800 at the start and 1500 8 weeks later.  To top that off, new lesions on lungs and liver, bones and lymph.  The trial doc for all intents and purposes told me to go home, give up and die.  I've been treated so heavily that my liver, though still functioning, has some pretty high enzymes and add that to the tumors and it's due to fail in a few months.  I have never been a quitter but this is daunting.  Be very careful when playing the waiting game.  I know the PARP was what I'd hoped for as a way even to stability but if it is a single agent, the PARP is not that effective as it is designed to work in concert with other agents.  Hoping this is not farewell.
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 Bonnie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2010 at 3:10pm
Oh, Ameline.  I am so sorry to hear this.  But whatever he tells you, please don't give up.  Keep fighting.  I see you've had every chemo agent under the sun  - is there anything else you can  throw at it? Hang in there.  You never know when a huge breakthrough will come our way. 
Love,
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2010 at 3:11pm

Ameline,

Words do not begin to express what my heart is feeling for you.  I am so very sorry for all that you are going through.  The mountain that lies in your path must seem impassable right  now.  You will be in my thoughts and prayers constantly.

Sending you love and hope,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2010 at 7:09pm
Hello Ameline, what a beautiful name.
 
I am very sorry to read your story, have you thought about a second opinion?
 
Not being in your shoes I cannot understand how you are feeling but I want you
to know that we all care about you very much and please, keep the HOPE that
something will come up.  There has to be something that will help you, reach out
for a nother opinion, ok?
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2010 at 7:41pm
Ameline, sweetie.  How discouraging to not have the PARP work, though maybe not so surprising as it only has single agent activity in BRCA-mutated cancers.  As you say, it might work a lot better with something like carboplatin.  I can imagine feeling daunted, especially at the stupid words coming out of the trial docs' mouth.  But I can hear your spirit in your voice and it sounds strong, very strong.  What a miracle for it to shine out like that after all you've been through.     There's more to staying alive than having a low cancer burden.   Some people can walk around with a huge cancer burden and still feel relatively good and keep going a long, long time.  Others can have a really small cancer burden, but something about the way their body responds to the cancer makes it super deadly.  Am I right in thinking you are the previous sort?  So don't believe what that fool says.  Another treatment may work, and even if good treatments are hard to come by the rest of your body might be strong enough to carry you a long, long distance.

Much love,
Denise

**have you tried Herceptin?  I know it's not supposed to work for TNs, but I've heard that it actually can help with some.    What about Avastin?  Maybe Avastin with another drug you had once before that helped slow it down?   Just because you progressed on a drug doesn't mean it can't have value for you later.  Cancer mutates, and over the past couple treatments it will have mutated away from whatever new 'tricks' it learned to move beyond an earlier drug that worked for a while.
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2010 at 10:32pm
Dear Ameline,

I have no brilliant words...just very sad that the parp didn't help..

I really don't know what to say except thank you for sharing and we will be here for you..

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2010 at 10:32am
God Bless you, Ameline, and give you stength, courage and healing.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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