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Gemzar and carboplatin for lung mets

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Christine B View Drop Down
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    Posted: Sep 05 2009 at 3:11am
I have been speaking with folks at Bi Par regularly for the past month, and agree with Steve that the application for expanded access compassionate use is in the works.  I volunteered my legal services to help expedite matters and am hoping they take me up on it.  I also spoke with someone at FDA who told me that, once they receive the materials, by regulation they must act within 30 days;  she indicated with something this big and promising they would not take that long, but would rather act quicker.
 
A couple of other things to consider.  Astra Zeneca also has a PARP, oliparb, so you could try contacting them.  My understanding thus far is that theirs has been geared more toward studying the effect on BRCA mutation, not triple negative.  Also, there is a single patient compassionate use exemption where you can try to obtain the drug outside a clinical trial through your doctor.  My understanding is that you must first get the company to agree to provide it and then have your doctor fill out the necessary paperwork (all of which is on FDA's website).  I'm not sure how difficult this route is to go, but you may want to discuss with your doc.
 
This is so heartbreaking for all involved with the is awful disease.  Your family is in everyone's thoughts.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 8:23pm
Hi cdenunzio,

Heather is lovely....thank you for posting the picture...

She has been, is and will be in my prayers..

Please keep on top of the BiPar folks...It is my understanding that there will be a "compassionate use" trial "soon."

I don't know if this will help, but it certainly seems worth a try...

please let us know what they tell you or send me a PM...

my heart is with you both....

By the way, when my daughter was dx with TNBC I told her "if you could 'give me' your cancer I would take it in a heartbeat." She knew I meant it. I know how you feel. There is no rhyme or reason to any of this, just an awful, awful disease.

in your corner,

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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cdenunzio View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cdenunzio Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 12:51pm
Bette,
Yes, of couse you can pray for us. In particular Heather - she doesn't deserve this no way no how, however I can think of many who do. Ask God why her for me, I get angry when I think about asking him this. Thank you very much for doing so.  It's just me.
 
Heather gets frequent fevers on gemzar/carbo.  we have decisions to make next week about how to treat the new brain met.  whole brain radiatioin, radio surgery (novalis), plain brain surgery or nothing and hope we find a  chemo that will kill her cancer..please let us know anything on the PARP, we can't get it cause the recent treatment of gemzar/carbo, we are looking at a trial for Sunitinib (something different basically), not sure yet..
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 12:16pm
cdenunzio, Would it be OK with you if I prayed for your family and what Heather is going through with the TNBC? Faith in God and His care is what has got me through over a year of TNBC and a summer of bad news from scans. If it is not offensive to you, I would like to pray for hope and healing.

I am in the PARP trial right now. It involves a lot of travel and effort for Tom and I, but we are doing it in the hope that participating will help not only me, but others in the near future. So far the gemzar/carboplatin that they give with it has given me fevers. We look forward with hope to the first scan at the end of September to see if my mets are shrinking.

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 cdenunzio Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 10:36am
Yes she is indeed beautiful..this inself keeps me going.  thank you.
 
Originally posted by dmwolf dmwolf wrote:

Heather is beautiful, by the way, though I'm sure you know that.
d

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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: Sep 04 2009 at 7:17am
Heather is beautiful, by the way, though I'm sure you know that.
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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 7:14am
Cdenunzio,
It does indeed suck however sliced.  And a cold one is as good or better than anything else for getting through the day (and night).

I guess the reason I asked is that I was really affected by what Michael Lerner wrote about hope in 'Choices in Healing'.  He said that hope is important to all of us, including all cancer patients, whatever their stages/prognosis, but that what we can hope for changes.  This struck me as beautiful and true, and made me want to focus on hope in my life, no matter what happens.  We each hope for different things, at different times in our lives.  We can hope for the ability to enjoy the gifts of each day in the midst of our struggles.  We can hope to live well while alive, and to die well when the time comes.  We can hope for concrete things, like making it to an important event, like a wedding or child's birthday.  We can hope to share love every day.   I try to tell myself that there is a lot to hope for even if we get bad news.  Even if things are not turning out as we liked.  Even if we don't get as much life as we wanted and planned on.    These thoughts have been a struggle, and a comfort for me when the future has dimmed in my sight.   So I guess I was asking, if you want to talk about it, how you have oriented yourselves toward hope, or whether another way entirely has shown itself to you.

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 Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 6:45am
Dear Pattysue,
 
First, so good to hear that the blizzard now looks like a gentle snowstorm
Smile
 
You did not mention where you were going for treatments, but CarynRose receives all the "extras" that you said you wanted, at the Cancer Treatments of America (CTCA). Now having said that, they seem to be the exception and not the rule for treatments. Do you want complimentary treatments or alternative treatments, as there is a difference.
 
Many here on the site did acupuncture, yoga, etc., but...they had an onc who was up-to-date on these things.
 
You can begin all that you have stated by simply doing them. Yoga will never hurt you, and my daughter Lori did visual imagery and meditation all through her treatments. She never took any meds for depression or anxiety in her life, and relied on these methods to get her through what would be the most difficult time in her life. I am thinking that she is the exception to the rule. Lori teaches second grade and did so all through chemo, with the exception of the day of chemo, Friday and did not go back to school until the following Wednesday.
 
Also, Lori ran, hiked or biked all through chemo and rads, and the only thing she did not do was to work out at the gym, which she had done 3 times a week for over 25 years before her dx.  Her onc is a runner, so he said whatever she felt well enough to do...just do it!! However, there were not any suggestions as to the other things I mentioned. Dang!! They really need to get more informed, don't you think?
 
Lori has the dvd...Body Wisdom which she got off the internet, and practices this now. She is also on biodentical hormone replacement therapy, since June of this year and has gotten her life back after bc.
 
I think this is probably the 100th time I have posted this...but...get the book Anticancer a New Way of Life, by David Servan Shreiber. This man beat brain cancer twice, and did many complimentary treatments while on chemo. It is a fasinating, informative book. Debs, user name dmayes has been following his diet the entire time she was on chemo, and has done so well. Of course, her onc was very open to anything which would help her keep her body healthy.
 
Please keep posting and let us know what other treatments you have begun, and how they are helping.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Pattysue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pattysue Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 5:52am
I've been doing Carbo Platin and Gemzar for 9 weeks now and my recent CT showed "phenomenal" results.  Where the original CT looked like a blizzard there were so many mets, the current one is only a snowstorm and most of the mets have shrunk by almost half.  I am starting another 9 week cycle and then if the results keep improving, I'll do one more for good measure, so a total of 12 weeks.  I want to get more involved in alternative therapies, nutrition, exercise, yoga, acupuncture.  Any advice? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cdenunzio Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 4:11pm
hi denise,
 
Quite frankly it sucks every which way you slice it.  We have been strong emotionally and things have bounced off but are starting to make dents.  Meditation sounds nice but a cold beverage seems to work better for me. We have been fighting TNBC since Feb 08 and unfortunately losing, roller coasters have an up climb we haven't seen much of those.  The kids are kids, they will be ok. Its tough having to take on everything.  I didn't mean to hijack this thread,  just wanted to  comment on the gemzar being ineffective and all the other chemicals for that matter in Heather TNBC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 12:52pm
Cdenunzio,  What you and Heather are going through sounds very difficult and sad.  I'm really sorry, and wish there was something I could do.  How are you guys coping with this emotionally? Are you using meditation or the like to help 'adjust' your consciousness for this roller coaster ride?  How are your kids doing?
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 cdenunzio Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 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 bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 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 Christine B Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 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 Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 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 bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 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 bettelou68 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 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 Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 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 Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 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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