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Gemzar and carboplatin for lung mets

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bettelou68 View Drop Down
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    Posted: 17 Aug 2009 at 2:01pm
Starting in a clinical trial for TNBC with mets this week. I am in the arm which will get G&C. My onc says platinum based chemo is good for TN's.

Any one with experience with GC? I have lung mets, discovered only one month after I finished my chemo/surgery/radiation.

Bette
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Terry3N View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 2:31pm
Is this the trial that has an arm that includes BSI-201 (PARP Inhibitor)?  I am trying to get into this trial as soon as it opens at Stanford.  They said within 2 to 3 months.  
dx 02/07 3N Inv Lobular mets/spine, 4 FEC, 12 Taxol, Dbl Masect 11/16, 28/28 nodes pos., radiation, Xeloda 8months, Abraxane June 09 - Oct 09, Arimidex Oct 09 - Jan 2010, Xeloda & Curcumin Jan 2010
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bettelou68 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 2:41pm
Yes, Terry, that is the trial.
I am enrolled in Arlington, VA, and start this Friday.
It is a three hour drive for me, but my husband is willing to do it to get me this treatment. There is a crossover to the BSI-201 arm built in if you show progression on the GC.
Bette
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kcsacco Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 2:58pm
I'm on Carbo/Gemzar currently (not on study).  Have lung mets and skin mets.    What doses are they using on the study, do you know?
(mg/m2/dose)?  
Alisa
DX 3/07 7cm tumor L breast, Neoadjuvant Chemo
L Mastectomy 8/07
Radiation and more chemo
Finished 12/08   NED 3/08
Reconstruction 9/08
Recurrance 1/09 Multiple chemos
3/10 Parp with chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 4:50pm
I'm on gemzar and carbo too.  Would really like to get the PARP but I started gemzar and carbo already so not eligible.  Don't think its fair.  I've had 2 complete cycles.  In the middle of the 3rd cycle now.  Having problems with the platelet counts.  Mine have been low after the 2nd week so I have had to miss chemo twice.  Both cycles ended up being 2 weeks on with 2 weeks off instead of the norm of 2 weeks on and 1 week off. 
 
Not bad.  Tolerable.  Any ideas on how to get the PARP?
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bettelou68 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 6:19pm
Beachgirl, I don't know how to get on the PARP without being in the trial. My hope in participating is to help it get approved so that everyone who needs it can have it. This is a Phase III trial, so hopefully it will be coming soon.

Bette
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kcsacco Quote  Post ReplyReply Direct Link To This Post Posted: 17 Aug 2009 at 7:58pm
yea, I think alot of us are hoping to see those PARP's on the market by the end of the year (which would be REALLY fasttracking for the FDA but they have been getting better in the past few years......
Alisa
DX 3/07 7cm tumor L breast, Neoadjuvant Chemo
L Mastectomy 8/07
Radiation and more chemo
Finished 12/08   NED 3/08
Reconstruction 9/08
Recurrance 1/09 Multiple chemos
3/10 Parp with chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: 18 Aug 2009 at 7:41am

Hi,

My mom had 4 cycles of G/C a few months back.  We followed with Doxil as her cancer seemed to find it's way right aroun the Gemzar/Carbo mix.  My mom has metaplastic spindle cell carcinoma with mets to the lungs.
 
We are now moving to Ixempra. 
 
Was wondering, if you have already had unsuccessful cycles of a combo can you enroll in a clinical trial for the same?
 
Marietta
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: 18 Aug 2009 at 11:32am
Marrietta,

You need to check each individual trial to see what the exclusions are.  I am just squeaking in on this one as I have had two chemos post adjuvant which is the maximum allowed.  The trials are listed at www.clinicaltrials.gov .  This one is NCT00938652.   You could always call them and ask if your mom could qualify.

As far as the BSI-201 being available outside the trial, when my oncologist called them about it they said this Phase III trial is for FDA approval.  It sounded like they had good results from Phase I and II and they want to get this to market as soon as possible for us triple negatives.  Maybe a year?  

I am not in yet myself.  I am going to wait until it opens in California, but then I will have to fit into what they are looking for.  Over the phone they said I should be eligible, but who knows when it comes time. 

Terry
dx 02/07 3N Inv Lobular mets/spine, 4 FEC, 12 Taxol, Dbl Masect 11/16, 28/28 nodes pos., radiation, Xeloda 8months, Abraxane June 09 - Oct 09, Arimidex Oct 09 - Jan 2010, Xeloda & Curcumin Jan 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: 20 Aug 2009 at 9:41am
Bette,

I am really interested in the details of the study as I will have to travel about 3-4 hrs each way to Stanford.  I am curious how many times you will be treated, (I think it said once every 3 weeks) and if your local doc can provide support services (like neupagen) if needed.  Also did the enrolling facility do the scans/tests that you needed to enroll or could you bring your own scans.  Finally, how is it paid for?  Right now I have Anthem Blue Cross, but will be eligible for medicare in oct, due to disability.

Thanks for any info you have.  It is hard to wait.  Let's hope this Parp trial is a home run for all of us triple negs.

Terry
dx 02/07 3N Inv Lobular mets/spine, 4 FEC, 12 Taxol, Dbl Masect 11/16, 28/28 nodes pos., radiation, Xeloda 8months, Abraxane June 09 - Oct 09, Arimidex Oct 09 - Jan 2010, Xeloda & Curcumin Jan 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: 20 Aug 2009 at 3:57pm
Terry,  I have Anthem Blue Cross too and have had difficulty getting them to pay for Pet Scans.  Have you had Pets, and has Anthem paid for yours?
Good luck getting into the Parp trials.  My onc has mentioned it to me as his "back up" plan when I relapse.  I just finished six rounds of Taxol and Avastin.  Am now NED.
 
Susan


Edited by SusanE1104 - 20 Aug 2009 at 3:59pm
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: 20 Aug 2009 at 4:41pm
Hi Susan,

Yes, I have had many PET scans and Anthem has paid for them.  I usually go to MD Anderson for my tests and sometimes the doctor has to get on the phone with them and it can go down to the wire, but they have paid so far.  I just got an authorization in the mail from them today.  Maybe it is where the mets are that make it more or less difficult.  My mets are bone only so far.  My doctor at MD Anderson is Dr. Cristofanilli who is also the head of the Inflammatory Breast Cancer Clinic which is another type of cancer that you can't dawdle around with, so he goes to bat for the tests.  At least that is what I think is going on.   I think it might be easier for the big cancer centers to get insurance approval rather then the local oncologists who can get pushed around more by the insurance companies.  Just my opinion, not sure if it is true.

Terry
dx 02/07 3N Inv Lobular mets/spine, 4 FEC, 12 Taxol, Dbl Masect 11/16, 28/28 nodes pos., radiation, Xeloda 8months, Abraxane June 09 - Oct 09, Arimidex Oct 09 - Jan 2010, Xeloda & Curcumin Jan 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: 21 Aug 2009 at 3:02am
Bette
Where exactly are you having treatment? I live in the same area and have been treated at Mercy in Balt. and Georgetown in DC. Wondering where you are being treated.
Wendy
dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: 21 Aug 2009 at 5:56am
Wendy, I m being treated at Virginia Hospital Center in Arlington for the clinical trial. Just had my first infusion yesterday and just got back to PA from VA.
Bette
God had not given us the spirit of fear, but of power and of love and of a sound mind. 2 Tim. 2:7
Dx 8/20/08 TN IBC
TAC 8/08
Mx 1/09
rads 5/09
Dx lung,chest node mets 7/09
Gem/Carb 8/09-present
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: 21 Aug 2009 at 11:15am
Terry,
They did their own scans and billed them to research. They did ask for copies of prior scans when considering me for the trial, but needed baseline scan right before treatment. In this trial, my insurance, Capitol Blue Cross, will pay for the standard costs of treatment: GC, bloodwork, etc. The trial will pay for study-related exams and tests and the BSI-201. They are also considering helping us with our hotel room as my chemo is late in the day, and we usually stay over that night (Beltway fear). They have been good about scheduling everything we need around my husband's days off.
They have financial counselors in Arlington where I go to help you work out the insurance details. I also have an appointment next week with their oncology social worker as I feel overwhelmed by all the implications of Stage IV.
Hope this helps,
Bette
God had not given us the spirit of fear, but of power and of love and of a sound mind. 2 Tim. 2:7
Dx 8/20/08 TN IBC
TAC 8/08
Mx 1/09
rads 5/09
Dx lung,chest node mets 7/09
Gem/Carb 8/09-present
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: 21 Aug 2009 at 2:05pm
Bette,
Thanks for the info about the trial.  Right while I was typing this I got a phone call from a representative from BiPar Sciences and he said that the financial arrangements differed by site.  So I guess I am going to have to wait and see what they say at Stanford.   I hate waiting if I am going to be told I am ineligible for whatever reason.  But I guess that is part of this game, lots of waiting.

I hope your meeting with the oncology social worker next week helps you.  I have been stage IV for over 2.5 yrs and being overwhelmed is a normal part of the process.  It comes and goes and it is entirely normal.  It sounds silly but it is okay to be overwhelmed and it is even normal under the circumstances.  I have learned to be compassionate with myself when I fall apart.  For me, it took a while to adjust but I have a new way of seeing myself and life. 

Terry


dx 02/07 3N Inv Lobular mets/spine, 4 FEC, 12 Taxol, Dbl Masect 11/16, 28/28 nodes pos., radiation, Xeloda 8months, Abraxane June 09 - Oct 09, Arimidex Oct 09 - Jan 2010, Xeloda & Curcumin Jan 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christine B Quote  Post ReplyReply Direct Link To This Post Posted: 22 Aug 2009 at 6:37am
Bette:
How wonderful to hear that you have started the trial and are in the arm receiving the PARP! This study looks so promising. Please do keep us posted as to how things are going. I am tracking this for a dear family member who is stage 4 but cannot qualify for the trial due to already being on carboplatin. It is my understanding from Bi Par that they are working through the process with the FDA to hopefully make the PARP available to others who cannot participate in the study on a "compassionate use" basis.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: 29 Aug 2009 at 1:48pm
The trial took a new turn for me when on Day 3 after my first infusion, I spiked a fever and was hospitalized for 3 days. Managed to recover to get my infusion on Day 8. It is now Day 10, and praying for no more fevers!

I now get a week off to recover!

Bette
God had not given us the spirit of fear, but of power and of love and of a sound mind. 2 Tim. 2:7
Dx 8/20/08 TN IBC
TAC 8/08
Mx 1/09
rads 5/09
Dx lung,chest node mets 7/09
Gem/Carb 8/09-present
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: 29 Aug 2009 at 7:05pm
Terri
 
What does BiPar consider as "compassionate use"?  I started gemzar and carboplatin in mid June after a PET scan in May revealed that I had a small hotspot in my supraclavicular area.  Docs seem to think that it may have been left over from my original diagnosis and TAC.  There were no open trials when I had to start and had no choice but to start.  It seems cruel that since I have now started carboplatin that I am now excluded.  Is there some way my doc could petition BiPar for use of the PARB?  Does anyone have any idea on how much longer before they release it for all to use?  I heard that its suppose to be "our" tamoxifen so does that mean they will be looking at us taking it every day for a period of time even after chemo is done? 
 
Desperately seeking PARB.
Thanks
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cdenunzio Quote  Post ReplyReply Direct Link To This Post Posted: 03 Sep 2009 at 12:47pm
Beachgirl,
 
my wife Heather is on the same boat as you. she is currently on gemzar and carbo. she missed yet another treatment today due to low platelets,etc.  every new scan reveals new tumors it seems.  today's brain scan found a 1.4cm tumor that was not there a month ago, she has been having headaches. new lung mets were found in the last chest scan. My point (at least with Heather) is that none of the conventional treatments have been effective with treating Heather's TNBC and we don't have many options left but the PARP but we are too now excluded from any trials of this promising drug.
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