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debB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 6:17pm
Hi Barb,

I go on the 20th for my physical, bloodwork, EKG, and Echo. I won't know until after that which ar mof the trial I get. I forgot to ask about the premeds but will email the clinical coordinator and ask her. I have been meaning to do that anyway. They gave me Dex with the A/C and that seriously messed with my blood sugar.

I know what you mean about heading back into the fire, but I just figure I have to do everything that I can to know that I have the best chance of beating this. After that, if it comes back, well, I guess it would have no matter what. This I can at least control and give it my best shot. The doctor I met with said it would clean up any 'micro-metastases' that might be floating around. I had a surgeon, who was a TN guy tell me that at my age (46) that if I could find a trial willing to give me more chemo that he would recommned it.

I had a very good response to chemo- only 2mm left. But, the cancer had made it to one node and the chemo had knocked it out. That scared me. Also, everyone had thought I had a pCR and was close, but not there. After I reacted so quickly to AC, it didn't make sensse that it wasn't all gone. I didn't know if I was becoming resistant to that or if it started coming back with Taxol... the brain thinks too much on those sleepless nights!

I did have a port with the ACT but they removed it with my lumpectomy since they all thought I had a pCR. bummer. We will be doing these through the veins and hope for the best. but man, I hate IVs!!

Bottom line is I felt like this was the best choice for me as well as my family! I certainly am not looking forward to chemo again but figure I did chemo once and made it through so I know I can do it again.

I will let you know what I find out about the premeds...
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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rigatonismom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 10:47pm
You pretty much said what I did before I started the trial.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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debB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2012 at 6:09pm
Barb,

I heard back from the clinical coordinator at Indiana University about the premeds for the Hoosier Oncology Cisplatin/PARP study. She indicated that with the Cisplatin (which you get with either arm) that I will be getting 12 mg Dexamethasone, 0.25 mg Aloxi, and 150mg Emend, all given by IV, all for nausea. I personally was concerned with the Dex and she indicated that this is the protocol and they can't change that part. Apparently you also get Dex in pill form for several days as with other chemo.

I am wondering if maybe the person your asked to misunderstood what you were asking. I did not ask what drugs are given with the PARP since I don't know yet if I will be getting that one.

Best wishes with deciding what to do.
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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rigatonismom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2012 at 8:02pm
Hi Deb thiand Barb,
The meds you mentioned are exactly what I got.  You don't get anything but dextrose and water with the PARP when you are getting it by itself (days 2 and 3) after the Cisplatin and then when you are finished with the Cisplatin.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2012 at 11:17am
Hi,
I found this caveat about clinical trials:
http://www.medpagetoday.com/PublicHealthPolicy/ClinicalTrials/30405

What the piece says is that trial results generally don't include patients with other co-morbid diseases and the efficacy/toxicity of a drug may not apply to the general population.  How that applies to BC I am not sure, I suspect the results are less of a problem with younger women in the mix.


Edited by Lee21 - Feb 07 2012 at 11:21am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Firegal Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2012 at 7:01pm
HELLO ALL!  I was diagnosed with TNBC last May.  I had a large  split tumor in my right breast and a very large node in my right axilla.  I started off with nedoadjuvant  DD ACT (4) and when I showed some "shadows" in my lungs, I was switched to Taxol (12). i did ok on on the chemo, or I guess at least better ?
My surgery on 2-3-12 included a right mastectomy and axilla. I had asked for a double mast but due to my other health problems including chronic digestive problems and chronic malnutrion (am on chronic TPN), the drs only did the bare minimum. At my first recheck, I was told the right breast was full of cancer and it was removed entirely.  The axilla was crammed with 6 tumors and 3 of those still had active cancer after 6 mos of neoadjuvantchemo.  So the plan now is for me is to start on a trial basis of PARP Inhibitors. In fact it is likely I will be on some type of chemo now for as long as i live. That's a little depresssing.  Oh well, one day at a time is how the old saying goes.  I'm suppposed to start rads in next 2 wks.
 
Anyone here ever been told they'll be on some form of chemo for life?  Please advise. I'm starting to get a little bit down now while trying to smile at the same time.   -- Laura
 
Dx 5/11. TNBC, St IIB/Gr 3, 4.9 cm, 6.8 cm & 3.1 cm, neoadjuvant AC (4)& Taxol (14), R mastect & R axilla on 2/3/12, 3/6 nodes, rads start approx 3/10/12, PARP trial after rads
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debB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2012 at 7:51pm
Hi Laura,

It sounds like you have really had a time of it! I would suggest that you put your story over on the TNBC Talk Forum since that gets way more traffic than here. You are more likely to have people see it and get some good responses on that forum.

A couple of questions that I would have that maybe you could clarify if you repost...
-Did you do all 4 cycles of AC?
-It seems like there was a lag in time before they did surgery. I was diagnosed at the very end of April and had 4 DD A/C and 12 Taxol but had surgery at the end of October. They typically try to do surgery 3-6 weeks after chemo ends.
-Was there residual tumor in the breast also when they did the mx?
-Did they confirm/biopsy lung mets?
I think the folks who have chemo on an ongoing basis are those who are Stage 4 with mets, and then the plan is to try to reduce them or stay ahead of the game.

Sorry for all the questions, just might save you a few question/answer posts later!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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