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bottkota View Drop Down
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    Posted: Feb 18 2014 at 4:37pm
so it looks like I have been accepted to get compassionate use of this drug. I will be on the higher dose without chemo. My onc wants to wait till I progress on gem/carbo (I have been on gem since 2009 with a 12 month break from it and on carbo since 2010 with a 9 month break) but I am so tired of it, my heart rate is very high and my counts are always trashed.

Has anyone been on this drug? I posted on another forum and got no replies so I thought I would post the question here.

For those who have been on it.....what kind of side effects does it give? Any advice on the effectiveness of the drug alone? Words of advice and wisdom always welcome!

Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2014 at 7:23pm
Hi Cathi,

Let me check, I think I know someone that has been on this trial.  She's in another group, but maybe you two could talk?

I did a search on this forum and there seems to be a couple people that have been in this trial:


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2014 at 2:50pm
Just my two cents worth - if what you are on now is kicking butt, stay on it as long as you can!
 
I had gem/carbo and then just gem.  My platelets just wouldn't come back in time to get sensible dosages so had to move on.
 
Take care of yourself and God bless,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2014 at 4:33pm
Hi, Cathi.  Are you BRCA+?  I don't know much about side effects, other than (from a friend) a potential for headaches and some nausea, but I do know that ABT-888 is supposed to be a pretty specific PARPi, unlike Inipirib.  My guess is that it's worth a shot on its own, though it should be most effective for BRCA1 or BRCA2 mutant carriers rather than sporadic TNBC.  For the latter, it might really need to be coupled to a DNA damaging agent. Then again, you are in a special situation because you are NED, right?  Things that might not be effective at controlling full blown tumors might be good for controlling micromets. 
One more thought concerns immune modulators.  I am super optimistic about CTLA4 inhibitors for us, possibly even curing some stage IV TNBCs the way it is working for some stage IV melanomas.   Anyways, something to keep in mind. 
I'm glad you are doing so well!
love,
d
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 bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2014 at 5:44pm
Thanks for all the replies. I am both BRCA 1 and 2 positive that is why my onc pushed for compassionate use of veliparib. I am no longer NED sneaky cancer came back in sept to my lymph lodes and liver. Went back on gem/carb and first scan in nov showed my liver improving and the lymph nodes cleared up. Next scan is March 7th will see how the liver looks. I will keep the CTLA4 inhibitors in mind as well for down the road.

I feel very fortunate that I am over 4 years with mets and still only on a second line treatment. Something must be working on it. Who knows. Just take it one day at a time, and put my trust in Jesus.

Cathi

Edited by bottkota - Feb 19 2014 at 5:45pm
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2014 at 12:02am
Hi Cathi,
 
Glad things are going good for you and that you get to try a new drug. I like your last statement. I do exactly the same thing. Smile
 
Let us know how you do on Veliparib.
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2014 at 1:34pm
Cathi,
I was wondering why you have not stopped the carbo/gem combo when it gave you NED.  You have been on them for a long time even with the breaks!  I stopped my carbo/gem combo after NED.  Onc says I could always go back to it if I progress.  The gemzar really does a number on your platelets and blood counts.
Hugs,
Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KKickCA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2014 at 4:07pm

This is the first time that I am posting.   It is gives me hope to hear from other people like me.   I am 43 years old, BRCA 2+a nd had stage 1 breast cancer 4 years ago.   I had a masectomy and CMF chemotherapy.  Unortunatley, on a routine scan to check my implants,  they found a mass on my right lung, enlarged lumph nodes and a spot on my back - now metastic breast cancer:(.   I started a clinical trial with Velaparib at the end of September (high does 800mg a day).  My first scan showed a decrease in the lung spot and everything else stable.  The second scan showed a decrease in lung spot but enlarged lymph nodes.   Therefore, the next phase of the trial is combo Velaparib with Carboplatin.  I was quite depressed about starting the chemo regimen as I was hoping to stick with just pills for awhile.   I am still hopeful about Velaparib and need to hear other positive results.    What scares me is being on chemo regimen forever.  

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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 10:56am
So I haven't updated in awhile been dealing with getting sick, tanking counts, transfusion, scans and just life in general.

So my platelets bottomed out at 10,000 and my hemoglobin dipped to 6.7 no wonder I felt so horrible....not to mention I was already dealing with a nasty cold bug of some sort that took my voice, which still hasn't fully returned. So I got a blood transfusion and platelets. Wow...what a difference having some blood can make a person feel.

I had a PET and CT scan on the 7th of March and I am happy to report that I have pretty much achieved NED again. Depending on what report you read, PET scan says that the liver lesion has resolved and the CT scan says it is less apparent. When you look at the images my liver looks like any other liver out there. My onc says that my cancer is inactive.

So I am on a 3 week break from chemo. I return on the 31st. In the meantime I have to decide if I want to move onto veliparib and save gem/carbo in my back pocket for when I progress on veliparib or continue with gem/carbo until I progress even tho it is kicking the snot out of me.

I have to make my final decision by Monday so that the research nurse can get the drug from the company and I can get started soon after seeing my onc on the 31st.

Just having a hard time making a final decision. I am tired and my body is worn out and I know that going on veliparib would be the best thing. Giving my body a chance to get strong again. Just don't know about the side effects.

Kjrichman....how were your side effects when you were doing just the pills??? Can you give me any advice??? Just looking for answers from someone on it. The trial that my onc set up is only with the drug, that is how we got compassionate use of the drug, so when I progress I will go back to chemo, no more veliparib.

I have been on chemo since Nov. 2009 with only a 9 month break during that time, but chemo is keeping me alive so I try to roll with it, even when it is hard. That's bad part of TNBC.....chemo is the only thing we got, that isn't being tested in clinical trials.

Any advice for me anyone???? I know that I have to make the decision that is best for me but......ugh what a crapshoot!!! HELP!!!

Cathi



Edited by bottkota - Mar 21 2014 at 10:58am
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 1:59pm
I was given 3 choices after NED:  stop all treatments, continue with gem/carb until new mets appear, go on femara (I know, we don't treat TN with femara, but my second dx. was 25% er+).  I took the 3rd route because 2 doctors are recommending this.  My gut tells me not to do anything, be happy until I no longer have NED.

I think you need a break from chemo, especially now that you have NED by your side.

Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KKickCA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2014 at 9:25am
I was on velaparib alone, high dose for approx 5 months.   The side effects for me were minimal.   The first few weeks, I was a bit nauceus and had some loss of appetite but that went away.   Once I got used to it, I felt like myself and continued exercising, etc.   I was disapppointed that this path did not continue longer since I felt good on the treatment.   I am now on carbo plus velaparib for 2 cyles.   I feel ok on this as well - a little tired after chemo.   I will know how I am doing on this regimen at the end of the April.   I think the drug alone is worth a try - my lung spot did decrease quite a bit. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2014 at 10:37am
Thank you so much for your reply. The few people that I have found on this drug have said that nausea was their biggest issue in the beginning. Sorry that it didn't work longer as a single agent for you, but glad that you are still getting it with carbo. Hopefully the combo of the two will kick that cancer right out of your body!!!! :) I have to make a decision today....and I am still not there yet. Do I, don't i.......ugh!!!!! Will make my decision sometime today or even tomorrow. Who knows......


Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KKickCA Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2014 at 10:18am
Hi Cathi,
 
Just curious what you decided to do about velaparib?   I have had 3 cycles now with Carbo/Velaparib and my scan is next week.   Since this treatment, the spot on my back has felt inflammed.   I called my doc and he said this could be a good sign that treatment is working.   All is dependent on scan and really hoping for good results.   Anyone else on same trial? experience inflammation as good sign?
At 39 09/09-Stage 1A, 1.7cm, BRCA2+, ER+/PR+/Her-,masectomy and ovaries removed, CMF chemo
At 43 10/2013- lung met and lesion on back, trip neg, on trial Velaparib and Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2014 at 10:49am
I decided to go on veliparib alone the first part of April. I have been on it for 8 weeks now and had my first set of scans on Monday. Results showed that I was stable. The liver lesion is still there unchanged. There is still a little bit of uptake around the outer edges of the tumor but for the most part the tumor is inactive. There are no other areas of cancer in my body. So I continue with veliparib another 8 weeks and see what scans show again! My only side effect of this drug is it is dropping my magnesium levels I have to supplement with 800mg daily of magnesium. Otherwise no other side effects, yeah!!!

I have been at this a long time....4 1/2 years but will continue to fight each and everyday!!! There is HOPE for metastatic triple negative breast cancer. So many of us that are thriving while facing this disease.   

Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2014 at 11:39am
Cathi,

Stable is good!  It's good to hear that there are no side effects beyond the magnesium levels.  Thanks for sharing and giving us HOPE!

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2014 at 2:07pm
Dear Cathi,

I also thank you for sharing. I am facing my physical exam, chest x-ray, mammogram and such the first part of July. It is the courage and tenacity that you, and so many others on this forum, show that makes me know that should I face the TNBC journey again, I CAN.

God Bless you in this journey and may Stable or NED be with you for years to come. You are so brave.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2014 at 9:31pm
Another 8 weeks under my belt and the radiologist's report said 'distinct improvement' in my liver and there are no signs of disease elsewhere in my body!!! YEAH for veliparib. So I continue another 8 weeks and scan again!

Just wanted to share my good news with all of you!

Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2014 at 9:51pm
Cathi,

Yeah! Such wonderful news!  How are the side effects on Veliparib?

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2014 at 9:30am
Pretty nonexistent! Occasional upset stomach and fatigue. But the fatigue could be from years of chemo and that my body went into chemically induced menopause! This is so much better than chemo! :)

Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2014 at 1:33pm
Cathi,

What great news that velaparib is working so well for you!  This makes me happy.  Hoping and praying for you that this is a LONG-term fix.  You deserve many years of peace after the long years of chemo.

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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