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Parp Inhibitor Continues after Chemo

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    Posted: Dec 20 2010 at 6:56pm
Hi.  I am on presently on the open access iniparib study.  The idea according to my oncologist is to do about 6 rounds of carbo/gem/parp, hopefully showing NED and then continuing on with the iniparib 2 x a week on its own.

There is a woman at my site who finished in June and is still NED and on the parp alone.  I've tried to research this but can't find any info if the parp helps to keep you NED once you finish chemo.  I know there have been trials of the parp alone but that was not with NED.

Any thoughts or comments would be appreciated.

Hugs,

Caryn C.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2010 at 8:57pm
Caryn,

When I went for my second consultation about my recurrence, the onc I met with said he agreed with the Parp clinical trial for me.  He mentioned that he'd recommend 4 - 6 rounds of the trial (carbo/gem/iniparib), then if possible, continue on the Parp for 6 - 12 months longer.  It sounds like you're hearing the same thing. 

The one question I have is if it's not FDA approved, can you get the Parp outside of the clinical trial and as a single agent?  Are you hearing anything about when it may be approved by the FDA?

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 zacar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2010 at 9:24pm
Donna,

I believe continuing on the parp alone is still considered part of the trial so the company provides it.  That is what is going on with the woman at my site.

I just have concerns about staying on the parp.  It makes me really nauseous and gives me a horrible headache and of course we have no idea what this can do to the body in the long term.

How are you doing on the treatment?  I get so fatigued and have to do neupogen which causes me awful bone pain.  My blood counts get so low and I've had 2 dose reductions already.  My liver enzymes jumped over 500 at one point!  This week will end my 4th round.  I really noticed a difference this time after the dose was lowered.  So much less nausea and I'm not half as sick.

Caryn C.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy49 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2010 at 10:30pm
Caryn,
I start my 4th round of carbo/gem/iniparib the week after Christmas. My onc. hasn't mentioned that I would go off the chemos if there was NED's. I have my scan mid January. I have to wonder why I've never heard that they could take you off the chemo but continue on the parp. Keep us updated on your progress.
 
I have been nauseous and have had serious headaches as well. They took me off the Emend (nauseous meds).  I have been taking Emend for the last year and it only effected me this way when I started this trial. I feel soooooo much better. I can actually enjoy my ten days off. I am still taking nauseous meds of course but I do not miss the Emend. Daisy49 
Inflammatory BC with medtastatic disease involving the bone - ER/PR/Her-2 Negative - Dec. 29, 2009
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2010 at 10:32pm
Caryn,

It's good to know that the trial would include just the parp.  I sure hope I can stay on the trial, but fighting my health insurance provider over Carboplatin.  I may have to leave the trial after once cycle.

They had to lower the dose of Gemzar/Carbo after the first week because neutraphils and wbc was low.  My liver enzymes elevated too.  I've notice a little blood when I blow my nose, but nothing like a nose bleed.  I haven't been nauseous or any problems with headaches.  Maybe the side effects change with more cycles.  This is my off week and I'm feeling pretty good.

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 trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 2:14pm
Caryn I found this article showing great response rate,
 
 
Where is your website?
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy49 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 3:03pm
Donna,
I had to fight the insurance company also. They declined me the first time because carbo and gem aren't usually used together. You have to appeal. My company rushed it through for me. Have you HR person help you or the hostipal liason help you. They will send the appeal to to their outside doctor. The outside doctor said that it had to be approved because both are already approved by FDA. Ask your insurance company for a case worker, they can help you also. Good luck, Daisy49
Inflammatory BC with medtastatic disease involving the bone - ER/PR/Her-2 Negative - Dec. 29, 2009
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 4:06pm
Hi Pam,

The article you posted was for oliparib.  We are on a study with iniparib.  Oliparib is given orally while the iniparib is infused.  I don't really know the differences although the Oliparib was initially in studies for cervical cancer.

Donna, you will win the carboplatin.  It's impossible that they would deny you a common drug.  just nuts.  I'm crossing my fingers for you.

Daisy, I hope you are doing well on this too.

I have had at least 70% reduction in lymph node metatases so I'm happy.  Hopefully looking at NED in the new couple of cycles.

Hugs,

Caryn
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 9:20pm

Caryn - that is wonderful news about your lymph node tumors are shrinking.

I haven't been scaned since I have started the trial but I no longer have pain from the chest wall met. I'll take that as it is working.
 
I hope that we will be able to jump from one parp to another if we have progression.  I don't know how many are out there in trials.
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 10:14pm
Tonya98,

How long have you been on the trial?  I wanted to scan after 3 rounds - no sense in continuing if it wasn't working.  It will be interesting to see what happens on the parp alone.  If it returns I understand we are not eligible to go back on the regime and would be out of the trial.  

Re another trial, if there needs to be measurable metastases to qualify that might be difficult if progression is slow after NED.  It's all up in the air until they are FDA approved.  All I know is that I want this to be over with and I want to have NED forever!  I want this for everyone too!

Take care and let me know how it's going for you.

Hugs,

Caryn C.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2010 at 10:22pm
What are you hearing about FDA approval?  First I heard maybe the end of this year, now I'm hearing maybe first quarter 2011.  With the FDA, anything can happen.
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 SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 10:31am
I'm nearly done with the second round of the Iniparib open access protocol.  My platelets dropped and I had a transfusion.  I'm giving myself Neupagen shots at home for four days after the chemo weeks.  They are keeping my white cells up.  I take Decadron for three days after chemo, which keep my temperature down.  Apparently the Gemzar gives me fevers without it.  I haven't had any nausea.  I'm given Aloxi as a pre-med, and it has always worked for me. So far I haven't had any problems with insurance that I know of.  I guess when the montly bills are sent out I could get a surprise.
Sadly, the parp doesn't seem to be working for me.  I think I was too late in winning the lottery.  I waited 15 weeks.  I'm having pain in my liver now and some shortness of breath on exertion.  I will continue the three rounds and have the Pet scan.  I've had liver mets since the beginning, and I suspect it's in my lungs now.  So I think the pet scan after three rounds will knock me out of the protocol. 
My best to all of you.
Susan
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
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4/10 liver mets
11/22 Parp Car/gem
parp failed
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 2:42pm
Susan,

I'm so sorry to hear you think the protocol isn't working.  I hope the scan proves otherwise.

The shortness of breath is something I have as well and I do not have cancer in my lungs.  This protocol is very fatigue inducing due to the platelets and low wbc.  Sometimes in a conversation I have to stop to catch my breath or even after taking a few steps.  My liver enzymes went off the charts over 500 due to the toxicity and I do not have it in my liver according to the scan.  Perhaps you are like me and it's hitting you hard.  I've had 2 dose reductions and a 3 week break due to the toxicity.  I'm hopeful that is what is happening and what you are feeling is not indicative of the protocol not working.  If you would have asked me what I thought because of all the sickness and pain I was in I would not have believed it was working.  

I hope you can find some peace of mind between now and the scan.  It all just sucks!

A big hug to you.

Caryn C.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 3:28pm

Caryn,  Thanks so much for your encouraging words.  I know I need to ask more questions.  I used to ask for my labs, etc., but I've been so discouraged lately, I've stopped doing it.  I'm not getting good vibes from the onc and the staff, but I'm hanging in there.  I agree the whole thing sucks, but I guess that's the breaks.  I feel fortunate at I reached aged 62 and my children are all independent and healthy.  So many of us can't say that.

Susan
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 8:01pm
Susan,

I pray that Caryn is right and you're just feeling the side effects of the chemo/parpi.  Sending you hugs,

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 zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 9:35pm
Susan E
When my RBC's would get real low, I would be terribly out of breath and could only walk a few steps at a time.  I got a transfusion once.  The Neupogen kept my white count up.  Of course, it dipped drastically a few days after chemo, but came back up by the next treatment.  I think you had to wait a terrible amount of time to get the Parp.  Keep on the trial as long as they will let you.  I'm praying that you aren't having the further mets that you suspect.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote catmax1954 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2010 at 6:17pm

I was on G/C/Iniparib for 4 full cycles from Sept. to Dec.  NED scan 1st of Dec.  I am now on iniparib only  twice a week for two weeks then off a week.  Recurrence has always been in lymph nodes.  From Sept. to Dec. doses had to be reduced twice due to low counts and once treatment was delayed another week because of low counts.  Onc took me off G/C because of counts not bouncing back and NED.  I am doing great on iniparib only, except for day of txt, then I am really tired at night.  I will post back when scans are done again....probably Mar. ot April.  I am really HOPING for 2011 NED year. Happy 2011 Sisters.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2010 at 7:57pm
Catmax,

Thanks for the update.  I just started gemz/carbo/iniparib and after one cycle have to wait an extra week because of low counts.  I'm hoping the parpi works for you and you continue NED!

How long will you be on Iniparib only?

Donna


Edited by 123Donna - Dec 29 2010 at 7:57pm
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 catmax1954 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2011 at 6:17pm
Hey Donna, I am not sure how long I will be on parp inhibitor only.  We see what next scans show.  I'll let you know.  Good luck with your txt.  As my son-in-law says "thank God for Chemo".  Catmax
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rbasu Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2011 at 4:34am
Hi everyone
This is my first post although I have been following this forum for a month now.

My mother age 60, was diagnosed with triple-neg squamous cell carcinoma of the breast in Nov 2009. She underwent lumpectomy, 8 cycles of chemotherapy (FEC90 # 4 followed
by Paclitaxel/Carboplatin # 4)  followed by adjuvant radiation to breast. This treatment ended in August '10.

Sadly the cancer returned 3 months post her radiation ended, in Nov10 and she is now being treated for metastasis in the lungs:(.  She has been given 3 cycles of Taxotere/ Xeloda, and she just had a CT scan last week. The scan shows there has been some reduction in the patches in her lungs, but not as much as we were hoping.
Hence now we are switching drugs to Gemcitabine & Carboplatin/Cisplatin. We were also told about PARP inhibitors but because she has squamous cell carcinoma, which is a rare variant of triple-neg,  our doctor was not sure whether PARP would work in my mother's case.
The additonal challenge is that we are based in Calcutta, India...and getting the PARP inhibitor drug imported to India will also be a big hassle.

My questions are as follows:
Has anyone heard of PARP inhibitors having any effect on squamous cell carcinoma of the breast?
Can anyone recommend/share info on a doctor who has treated squamous cell carcinoma of the breast?

Our doctor in India is not very encouraging of PARP as it is not very well known in India and is wary of the risks, however I have read the articles and posts about PARP on this website and am very encouraged by it.  But Im not sure how to go about getting my mother involved in it.
Any advise/thoughts would be greatly appreciated.

thanks,
Raka



 




 
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