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Need info on Chemo

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Mel_H View Drop Down
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    Posted: Mar 20 2012 at 2:52pm
I have just recently been dx with TNBC.  At least at this point they think it is.  Originally onc had indicated that I was amplified for Her 2.... but 1+ ...so sending for FISH test to verify.   Dr felt that it was more  than likely it  is negative.  Had Lumpectomy on March 1st. 8/11 nodes.  CT scan and biopsy show mets on my liver.   Originally, dr had indicated ACT for Chemo...   Now they are saying something about possibly using Avastin or clinical trail with Brostacillian/ Platinum.  Anyone know anything about this and how it fits in with other chemo?  .... Scared and confused. CryConfused
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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: Mar 20 2012 at 3:59pm
Mel_H

I am so sorry to hear about your disease. I don't know too much about first line treatment for TNBC presenting as stage IV but I am sure you will hear from others.

I think you need to consider a second opinion ASAP -- there are many TNBC specialists around the country that forum members have been to see and they will chime in.  Where are you located?

Regarding the trial with Brostacillian/platinium, here's the link to the trial
http://clinicaltrials.gov/ct2/show/study/NCT01091454?term=NCCTG+N0937&rank=1&show_locs=Y#locn

Note that this is a Phase 2 trial, meaning that only safety and dosing have been tested previously in a phase 1 trial and phase 2 is where they start to test efficacy in patients with the disease.

Information about the 3 phases of clinical trials:
http://www.nlm.nih.gov/services/ctphases.html

Lee
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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Mel_H View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mel_H Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 4:26pm

Thanx Lee..

I am in Council Bluffs, Iowa. (right next door to Omaha, NE).  I have been treated at our local hospital but

made appt next week at UNMC (University of Nebraska Med Center)...  Thanx for the info on the Phase II trials.   

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 6:27pm
Mel, you poor thing dealing with a load of difficult news.   Being diagnosed with cancer is so traumatic.  We have all been there.   

By being diagnosed with distant involvement, you have hit on a philosophical crossroads, treatment-wise.  One approach is to give low dose, likely weekly chemo in an effort to manage the disease without overly compromising your quality of life.  This approach might mean doing something like weekly Taxol or Abraxane with Avastin.    The other approach is to treat with the same hard-hitting drugs/doses given to early stage patients and then later switching to a low dose maintenance regimen.  This might mean doing the same dose dense ACT you would have done had your liver been clear.  This approach will initially make you much sicker and damage your core health more, but might have a bigger impact on the disease, at least in the short term (but maybe not in the long run).  Currently, to the best of my knowledge there is no solid evidence backing up one approach over the other in terms of maximizing lifespan.    How's that for sucky?  So, you need to get several independent opinions and then decide what you want to do.  

I don't know what I would do in your shoes.  Though if I were lucky enough to just have the one liver lesion and no other evidence of metastatic disease, I would look seriously into some sort of treatment after chemo to shrink the tumor - either surgery or radioablation.  Local treatment of oligometastatic disease (mets but in just one or a couple of places) have been known to lead to cures.    And if not a cure, increased lifespan.

Anyways, good luck navigating the cancer maze.   We are here to support you in any way we can.

Much 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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 7:11pm
Mel,

I second what the others have said and strongly urge you to get another opinion from an NCCN facility as quickly as possible.  We'll help you navigate through this maze and be there for you and offer all the support we can.



Also check out clinical trials.  It did a search of Phase II or higher, metastatic TNBC in Iowa and Nebraska.  Here's a link to those studies:

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 10:08pm
Dear Mel,

I, too, wish you good luck..

have you seen a Certified Genetic Counselor with a view to testing for the BRCA mutation?

warmly,

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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Mel_H View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mel_H Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2012 at 10:47pm
Thank you all for the information.  I do see that UNMC is a NCCN facility and I will definantly ask about the BRCA mutation.  I appreciate all the information.
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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: Mar 21 2012 at 7:12am
Mel

I would recommend that you migrate over to the NEW MEMBERS > OPEN ACCESS thread where a number of us have posted links to journal articles and websites on a variety of topics related to TNBC.

In my experience, it is best to be armed with as much information as possible so you will ask the right questions when you see your doctor. It may seem overwhelming at first, like it was for me back 3.5 months ago, when I found out I was TNBC an hour before I was to meet with the breast care team and didn't ask the right questions. Since then with the help of members here, I have learnt a great deal and feel much better prepared for decision making.

Best of luck,

Lee
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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tjm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2012 at 1:41pm
Hello Mel,
My name is Traci and I am just down the road from you a couple of hours, near St. Joseph, MO.
I was also a Stage 4 TNBC with mets to my lungs. Because of this and because my initial tumor in my breast was so large and growing daily, we started on chemo first. The first dose of chemo I had was Taxotere, Carboplatin and Avastin. I was so sick that I ended up in the hospital. Before my next treatment I went for my second opinion at the University of Kansas in Kansas City, KS and they recommended that my quality of life was not going to be good on this type of chemo. My primary oncology doctor agreed with this and I was started on Taxol and Avastin. Taxol weekly for 3 weeks and Avastin the 1st and 2nd weeks and off the 4th week. I have some side effects, but minimal compared to being in the hospital. I have been on this treatment plan since August 2011.
At this time I have no evidence of disease and am preparing for a mastectomy of the right breast after I finish this cycle of chemo. I am not doing a lumpectomy, because I do not want to do radiation therapy.
I have also had a third opinion at MD Anderson and they also agreed with the plan of treatment I am currently on. Those other opinions were very helpful to me 
Thoughts and prayers going out to you.
 
 
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2012 at 1:00am

Hi Mel_H,

Noticed today 6/30/12 is your birthday.
(Bottom of   Forum Home   page has birthdays of members who put that info on their
member profile on joining the forum.)
Just posted Birthday Greetings to you on the Birthday Wishes thread.
   http://forum.tnbcfoundation.org/topic9203_post103669.html#103669

Just wanted to also say thinking of you and sending you caring thoughts,
Grateful for today.............Judy

Addendum:
There is some recent info on liver mets on the thread: ( If you have already seen, just disregard. )
    http://forum.tnbcfoundation.org/diagnosed-with-liver-and-lung-mets_topic10011.html

Edited by Grateful for today - Jun 30 2012 at 1:07am
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