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CT scan this morning

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Post Options Post Options   Thanks (0) Thanks(0)   Quote macska-ma Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2014 at 4:45pm
Dear Beth, great you have more choices, and all of them are promising. But i woulnt choose imunosuppressive chemo after pd1 too.
May i ask, what kind of pd1 trial and where it was? I am not from US, i dont know much about these trials. I know mayo clinic with Dr.Pockaj do some research (but no trials yet?) and MD Anderson? Or you have more pd1 studies in many places around US?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2014 at 6:56pm
Beth,

So sorry for the less than stellar news. There never seems to be an easy answer :(

I can't remember if they have biopsies your lung mets...I have a friend who was diagnosed at Stage 4, TN, and a year or so ago they biopsies her liver mets and receptor status had changed! She has just hit her six year mark!

I hope that you get some input that makes the path a bit more clear and with good results. So happy that you got to enjoy a fantastic trip with your daughter and are feeling well.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2014 at 7:07pm
Beth,

So sorry to hear about the progression, but glad you have many options available to you.  Let us know what Dr. Ma and Dr. E suggest.

There are 2 clinical trials for IMMU-132.  One is open and the other says it has a start date of Aug 2014 (but hasn't begun recruiting).  The second one uses Carbo with Immu-132.

http://clinicaltrials.gov/ct2/show/NCT01631552?term=breast+cancer+and++IMMU-132&rank=2


An interesting article by Dr. OShaughnessy


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 macska-ma Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2014 at 4:02am
Donna, you are angel
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2014 at 10:55pm
Hi Mackska-ma,

The anti-PD1 trial that I was in was for MK-3475 as monotherapy, and the site that I was treated at was the University of Chicago Medical Center.

Donna, the IMMU-132 trial I am exploring is the first one you listed (since the second one isn't recruiting yet, as you point out).

Deb, no my lung mets have never been biopsied but we just scheduled a biopsy for Sept 10 to re-check the receptor status, and if they can get enough sample we will also have the 48- gene tumor panel that the Wash U GPS center has.  The biopsy will be performed via bronchoscopy, and I will be under anesthesia for it.  

Deb, what did your friend's receptor status change to?  Was she ER+ or her2+?  And if so did an estrogen blocker or herceptin help her?  

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2014 at 9:09am
Hi Beth,

I just double checked with my friend. She has liver mets, and they changed to slightly ER+. They switched her to Faslodex. She says it got rid of all mets outside of the liver and kept her liver mets stable for 16 months. At her very recent scan there was some growth of liver mets but all others still gone. They have opted to put her on AC to knock them down but keeping her on the Faslodex.

I will be thinking of you on the 10th, hoping for helpful results!

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2014 at 7:39pm
Thanks Deb.  I hope the AC works for your friend and glad the Faslodex is keeping mets outside the liver at bay.
 
I  have a consultation at Mass General Hospital in Boston scheduled for this Thursday Sept 4, for second opinions and to discuss the possibility of the IMMU-132 clinical study.  It would be a big undertaking to travel to Boston on a regular basis to be treated in this antibody-drug conjugate (ADC) study, but I want to at least consider it if it sounds like the side effects aren't bad. 
 
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2014 at 8:06pm
Beth,

I hope the second opinion gives you good news.  Can you participate in a trial closer to home where you won't have to travel so far?  Good luck on the visit and your biopsy next week.

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2014 at 9:49pm
Beth,

A TNBC sister posted this on FB.  She just started the study and heard that of the 20 people in the study, 6 are TN and have seen positive results.



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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2014 at 8:06pm
Thanks Donna!  I am going to try to do this IMMU-132 clinical study.  I heard similar (very early and preliminary) positive results from Dr. Bardia at MGH when I visited last Friday, and there have been 20 TNBC patients enrolled now.  Many are seeing benefits.  There are some study sites closer than Boston, but none that are as easy and fast to get to as the 2.5 hr direct flight on Southwest from STL to Boston.  Plus my company has offices in the Boston area where I often travel to, so I can combine work trips with treatment trips.

First we will confirm with a biopsy that the lung mets are TNBC, then I will do the screening tests (just the usual  EKG, blood chemistry, etc) to get into the study.  I am now off Xeloda and have started the 4-week chemo washout period required for study entry.

And in the meantime, I am doing a detox program according to the book Clean.  I have also been reading the book Radical Remissions, and am inspired to start eating a mostly vegan diet.  I will occasionally eat seafood and eggs, but I have read so many places now that dairy products can promote breast cancer that I am going to completely give them up - I cut back several years ago bu will take the next step.  There is some good scientific rationale for it, so I need to do the experiment.  Good-bye feta, mozzarella, goat cheese, and gelato - I loved you!  But I love my kids and my life more!  

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2014 at 10:46pm
Beth,

Any word? Thinking of you...

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote rahul2630 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2014 at 3:02am
It is the pray to almighty God and wishes of all near and dear ones help you to get over you anxiety which is very much natural at this juncture of time. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 2:01am
Hi Beth!
I am hoping that you are not posting because you are busy traveling and having a good time.  I wanted to share with you and the others here that the Abraxane seems to be working for now.
Hugs,
Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 8:28am
Yeah Brenda!

Been thinking of you Beth! Hope you are kicking some cancer butt in your spare time!

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2014 at 8:34am
Brenda,

So glad to hear the Abraxane is working for you!  

Beth,

Hope the new immunotherapy trial is gearing up to attack those cancer cells!  When will you have your first scan?


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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2014 at 7:59pm
Brenda, great news!  So happy to hear the cancer is more stable or maybe even on the retreat?

Thanks all for checking on me.  I have either been busy with work, traveling back and forth to Boston, or not feeling well due to the chemo I have had 2 doses of IMMU-132 so far, and I have this week off thank goodness.  Then back to Boston on the next 2 Fridays for the cycle 2 infusions.

The side effects are a little rougher than I expected, to be honest.  I got treatment on 2 Fridays in a row and the fatigue and icky feeling hits about 5 hours after the infusion.  I have some nausea and other GI probs and fatigue through Monday.   I feel OK after that. BUt today about half my hair fell out and I have been itching all over like crazy for about 3 days.  Sigh.  This drug better work, is all I can say!  I will have a scan about early December, after 8 weeks of treatment.

Dr. Bardia recommended that I try taking American Gingseng for the fatigue.  A clinical study was run at Mayo Clinic demonstrating that it decreases fatigue symptoms in a significant number of patients as compared to placebo.  I haven't found any yet though that is pure American ginseng - probably just need to search online.

I will keep you posted, dear Friends.  Thanks for all your support!

Love from Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2014 at 8:20pm
I wasn't home when he called.  I had a ct-scan of my chest on Wednesday.  He left a message on the same day saying he had good news about my scan.  He wants to talk in greater detail on my appointment day, which is Monday.  I think his call is the best birthday present!  I will turn 60 tomorrow!

'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2014 at 8:24pm
Beth,
I hope the gingseng helps with your fatigue!  You need your energy to keep doing your work, which is obviously something you love to do or else you wouldn't be doing it?  Let us know if it works on your fatigue.  I would like to give it a try if it does.
Love,
Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2014 at 9:09pm
Hey Brenda,

Happy 60th birthday!!! So glad that you will be hearing some good news after the weekend. That does make for a fantastic birthday present.

Have a great weekend :)
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2014 at 9:15pm
Hi Beth,

I just wanted to send you my good wishes for a positive result from this round of treatment. I know you have been through so much (an understatement!), I pray so that this is the one that gets you back to NED - and for good. You have many many people here in your corner hoping for the best for you.

Have a restful weekend.

Best,
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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