2nd opinion for stage IV? Boston area
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Topic: 2nd opinion for stage IV? Boston area
Posted By: megarita
Subject: 2nd opinion for stage IV? Boston area
Date Posted: Mar 12 2015 at 10:49am
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My Mom had a reoccurrence (after 8 yrs) over the summer, now is stage IV TNBC, she has an oncologist at Mass General, and they have done the gene snapshot, she's got a mutation in the PI3Kinase. Anyways she started on Xeloda and in December we just found out it didn't work, tumors have grown. She now has mets to spleen, liver and lymph nodes and some fluid in her plurea. Her oncologist wants her to talk to Dr Dejan Juric next week who is doing treatments with GWO32 along with taxol or taxotere. So I have a few questions:
1. Has anyone used this kind of treatment (GWO32 with taxol) and if so can you tell me if it worked for you and any bad side effects? She had no side effects on xeloda (but it didn't work) and she got through her 1st chemo treatments 8 yrs ago really well (she is a fighter). I see the taxol a lot on the forum but I'm not familiar with GWO32. I think she is really factoring side effects and quality of life balance.
2. I'm thinking she should have a second opinion and maybe see Dr Eric Winer at Dana Farber (he is listed as one of the founders of this site), would this be a good person to get a second opinion from, or do you typically get one from another oncologist? Or another specialist in the Boston area?
Thank you for your help.
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Replies:
Posted By: 123Donna
Date Posted: Mar 12 2015 at 5:50pm
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Megarita,
I'm so sorry your mother had a recurrence after 8 years. Was she TNBC the first time?
Dr. Winer would be an excellent choice.
-Eric Winer, MD
Dana Farber Cancer Institute Boston
http://doctors.dana-farber.org/directory/profile.asp?dbase=main&setsize=16&pgt=Eric+P.+Winer%2C+MD&grouptype_typeid_data=1&gs=c&nxtfmt=r&display=Y&pict_id=0000262" rel="nofollow - http://doctors.dana-farber.org/directory/profile.asp?dbase=main&setsize=16&pgt=Eric+P.+Winer%2C+MD&grouptype_typeid_data=1&gs=c&nxtfmt=r&display=Y&pict_id=0000262
http://www.tnbcfoundation.org/ourpeople_winer.htm" rel="nofollow - http://www.tnbcfoundation.org/ourpeople_winer.htm
I have not heard of GW032. Do you know what it is? Does it have a clinical name? I googled GW032 and couldn't find anything relating to breast cancer. Is it a new study drug? If it's a clinical trial, do you know what phase it is?
Wishing you the best as you try to nagivate treatment with your mom. I hope you can get a second opinion. Please keep us posted.
Donna
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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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Posted By: megarita
Date Posted: Mar 14 2015 at 12:55pm
Thanks Donna, Yes, she was TN the 1st time as well at age 60. She had a lumpectomy, chemo and radiation. It was also in at least 5 lymph nodes (that I can recall). I can't find anything on the GW032 either, I guess we'll learn more Monday and I'll share. Apparently Dr Winer is not seeing new patients, they recommended for her to see a fairly new hematologist there. I can't find much info on her on-line. Megan
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Posted By: nancykind
Date Posted: Mar 14 2015 at 9:09pm
2nd opinions are a great idea almost any time. i haven't heard of that either but do keep us posted and my best wishes go out to you both.
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Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Posted By: 123Donna
Date Posted: Mar 15 2015 at 8:23pm
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Megarita,
Please send Steve a pm asking him if he could recommend someone in the Boston area. Steve is a patient advocate and has helped many of us on this forum. He's much more knowledgeable about the different specialists around the country and could possibly help with a recommendation. Steve goes by Sagepatientadvocate.
http://forum.tnbcfoundation.org/second-opinionsplease-share_topic11878.html" rel="nofollow - http://forum.tnbcfoundation.org/second-opinionsplease-share_topic11878.html
Donna
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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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Posted By: megarita
Date Posted: Mar 16 2015 at 5:57pm
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Thanks Donna, The Dr today at Mass Gen has recommended Taxol with Taselisib, aka GWC0032 why must every drug have multiple names and sub types? Its so confusing.
Taselesib is a PI3 Kinase Inhibitor used in treating HER2Neg met breast cancer with women who have that mutation. The Taselisib is a clinical phase two drug but has shown a lot of promise according to the DR. It seems pretty promising, and we were feeling much better after the meeting although nobody looks forward to taxol. He did say it would be only half the dose that she had the first time around, but every week instead of every other so hopefully less neuropathy and side effects.
We meet with Dr Winer's co-worker tomorrow otherwise I'd reach out to Steve. It will be interesting to see what they say.
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