Go To Main TNBC Website


  New Posts New Posts RSS Feed - My Visit with Dr Tiffany Traina and new treatment
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

My Visit with Dr Tiffany Traina and new treatment

 Post Reply Post Reply
Author
Asovey View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Topic: My Visit with Dr Tiffany Traina and new treatment
    Posted: Dec 22 2017 at 2:39pm
On Tuesday morning I had a consultation appointment with Dr Tiffany Traina. What an amazing experience! I feel so lucky to have her on my team now. She is just the most kind,supportive and caring physician I have ever met! Her knowledge of TNBC and what to do to improve prognosis just blew me away. Generally, she agreed with the treatment plan that was developed by our local hospital cancer center. She agreed with double dose Andriamycin and Cytoxan every other week for four cycles. Then Taxol for 12 weeks with Carboplatin added every third week. My local plan never mentioned Carboplatin. Why not? Next would be surgery of course and prayers for a pathological complete response. If that happens, there would be possible adjuvant treatment with Enzalutamede (?) after determining if I am androgen receptor positive. If the chemo response is not complete, she suggested 6 months of Capecetabone which is oral chemo. I am hoping the chemo will shrink the mass enough to be able to do a lumpectomy. If that is the case, there will be radiation for 3 weeks. Dr Traina also suggested a ultrasound biopsy of the lymph nodes befor Chemo is started. My local oncologist said no needed since I had a PET scan. I said yes it will be done so we get more detailed info about what we are starting with. Slone Kettering is also sending in tissue for genomics. When I had my first visit with our cancer center here, they said I was not eligible for any trials, but after getting the Slone report, things changed. Hmmmmm... I wonder why? I will now be taking part in the FLEX study that determines the likelihood of distant matastisizing but I forget the tests they use.

I am totally feeling my local hospital cancer center was planning the “basic” treatment plan and that really scares me. All of the information that was talked about at Slone by Dr Traina was information I had raed about myself. Why did it take this second opinion to get the Herbert Herman Cancer Center on its toes. Scary!

I now feel confident with my treatment with the oversight of Dr Traina. Without my son and daughter pushing me to get a second opinion, I never would have gone to NYC. They very likely could have saved my life. My advice to anyone that is diagnosed with TNBC s to get a second opinion if you are not working with a major breast cancer center like Slone Kettering, Dana Farber or MD Anderson. I know there are more than these but please do not have just one opinion. It could save your life.
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4910
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 5:42pm
That is such great news and it's very wonderful that your son and daughter pushed you to get the 2nd opinion with a Tneg specialist. Makes all the difference in the word! And once a plan is put in place and you get started so much of the anxiety will be removed.

All clinical trials are not available to all clinics and facilities. I was on one and found that because we were adding a trial drug to my treatment and the pharmaceutical manufacturer had a hand in overseeing things it meant I was scanned more and the results went on to the trial researcher for oversight. For me, that meant I had the luxury of more sets of eyes keeping track of my progress. A couple of times that turned out to be very worthwhile.

A tneg expert is something fairly new to the medical field, there's not that many of them around and they are gold.

Merry Christmas, and thanks so much for sharing your experience!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
Asovey View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2017 at 9:54am
I do feel very fortunate! Wish there were more physicians like Dr Traina!
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 826
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2017 at 10:15am
I am so very happy for you, I've heard she's wonderful! I felt this same way both times I had my second opinions. It's a "Eureka!!" Moment and it's awesome. I adore MD Anderson the same way, and my doctor there. When I told my local oncologist there was a chance i might be able to get an appointment with him she said, " wow, that would be great! I'd love to work with him" it made me respect _her_ more as well. A good Dr. Will welcome another physicians opinions.
Congrats on having such awesome kids, too! Y'all have a wonderful holiday!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
Asovey View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2017 at 4:11pm
Thanks! You too!
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Online
Points: 12702
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 24 2017 at 12:42am
Asovey,

I'm so glad you got a 2nd opinion.  If there was one advice I'd give anyone newly diagnosed, it would be a 2nd opinion. 

I've heard Dr. Traina is wonderful.  So glad she gave you some good advice that will impact your treatment plan.

Here's a thread that talks about adding Carboplatin.  


Additional drug shows promise for women with triple-negative breast cancer

 IMAGE: A new study suggests additional drug shows promise for women with triple-negative breast cancer.

Click here for more information.

SAN ANTONIO— In a nationwide study of women with "triple-negative" breast cancer, adding the chemotherapy drug carboplatin or the angiogenesis inhibitor Avastin to standard chemotherapy drugs brought a sharp increase in the number of patients whose tumors shrank away completely, investigators will report at the 2013 San Antonio Breast Cancer Symposium.

The results are especially promising in the case of carboplatin, study leaders say, as Avastin has shown little effectiveness as a long-term preventer of cancer recurrence. The study is scheduled to be presented Friday, December 13, at 9:30 a.m., CT.

"Our findings suggest that carboplatin could be used either in addition to or instead of some of the drugs in the standard chemotherapy regimen for women with triple-negative breast cancer," says the study's senior author, Eric Winer, MD, chief of the division of Women's Cancers in the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute.

Triple-negative breast cancer, named for the lack of three growth-spurring receptors on its cells' surface, accounts for 15 to 25 percent of all breast cancer cases. Although it often goes into remission in response to chemotherapy, it can be more aggressive and more likely to recur than other breast cancers. Because of the dearth of three common receptors on the cell surface, triple-negative cancers usually aren't vulnerable to drugs that block these receptors in other types of breast cancer.

The current study involved 450 women with stage II or III triple-negative breast cancer. It was sponsored by the Cancer and Leukemia Group B, which is part of the Alliance for Clinical Trials in Oncology, a national clinical research network supported by the National Cancer Institute. As a pre-surgery treatment, the women were randomly assigned to receive either standard chemotherapy (a combination of paclitaxel, adriamycin, and cyclophosphamide), standard chemotherapy plus carboplatin, standard chemotherapy plus Avastin (a drug that blocks cancers from generating blood vessels), or standard chemotherapy plus both carboplatin and Avastin.

Among patients who received standard chemotherapy alone, 34 percent had their tumors disappear. That compares with 48 percent of patients in the chemotherapy plus carboplatin group, 51 percent those in the chemotherapy plus Avastin group, and 61 percent of those in the chemotherapy plus carboplatin and Avastin group.

Promising as the results are, "more research is needed to determine which women with triple-negative breast cancer particularly benefit from added carboplatin and which do not," says Winer. "As we learn more about triple-negative breast cancer, we'll be better able to determine which set of drugs is most effective for individual patients.

###

The lead author of the study is William Sikov, MD, of Brown University. Co-authors are Donald Berry, PhD, of University of Texas M.D. Anderson Cancer Center; Charles Perou, PhD, and Lisa Carey, MD, of UNC Lineberger Comprehensive Cancer Center, Chapel Hill, N.C.; Baljit Singh, MBBS, MD, of New York University Medical Center; Constance Cirrincione, MD, Alliance Statistical Center, Durham, N.C.; Sara Tolaney, MD, MPH, Mehra Golshan, MD, and Jennifer Bellon, MD, of Dana-Farber; Charles Kuzma, MD, of Southeast Cancer Control Consortium, Winston-Salem, N.C.; Tim Pluard, MD, of Washington University-St. Louis Medical Center; George Somlo, MD, of City of Hope Comprehensive Cancer Center; Elisa Port, MD, of Mount Sinai Medical Center, New York, N.Y.; Deborah Collyar of Patient Advocates in Research, Danville, Calif.; Olwen Hahn, MD, of University of Chicago Medical Center; and Clifford Hudis, MD, of Memorial Sloan-Kettering Cancer Center.

http://www.eurekalert.org/pub_releases/2013-12/dci-ads120613.php#.UqtrghRjhhk.scoopit



Edited by 123Donna - Dec 24 2017 at 12:45am
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

Back to Top
HopefulToday View Drop Down
Newbie
Newbie


Joined: Oct 30 2017
Location: Seattle
Status: Offline
Points: 18
Post Options Post Options   Thanks (1) Thanks(1)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2018 at 3:56pm
Hi Asovey, 

It was nice to read your notes on your visit to Sloan and Dr Traina.  I also went to Sloan for a 2nd opinion and met with Ayca Gucalp, MD - she is part of the TNBC group there. She was also kind and through.  She also agreed with some of the Drs I had seen here in Seattle about the type of chemo I should do which was AC. 

I spent an unbelievable amount of time researching AC, Carboplatin, Taxol and other chemo.  In the end I was not comfortable with the AC because of possible side effects I read about.  I read a lot of positive and some negative about the Carboplatin and in my heart that was what I wanted. I would believe any chemo has pros and cons.  

First I had a breast lumpectomy, but within 3 months the cancer had returned and I had to do chemo. It was now under my arm in a few spots which I could actually feel. The largest was 2 cm. Having not done chemo right away - I had to do it now. I am also BRCA positive TNBC. Everyone advised me to do the chemo right away. I held out for 90 days but...

Someone suggested Dr Ben Chue of LifeSpring Cancer Care here in Seattle and at this point I figured - why not get one last opinion? My friend said Dr Chue thinks out of the box and has been treating cancer for more than 25 years. He was incredible, he told me about women with TNBC, their stages and what their treatment had been.  He offered a type of chemo nobody else had spoken about. It's called Metronomic. The theory is that it's given in lower doses and with no break so the cancer doesn't have a chance to become resistant to the chemo. 

I did 12 weeks of Carboplatin and Taxol, both every week, with no break between. At the end I had a double mastectomy because Dr Chue felt that if the cancer were to come back it would most likely come back in my breast first. 

ALL the tumors were DEAD! The cancer was gone under my arm and the dead tumors were removed.  It's 3 1/2 months past the mastectomy and I wanted a breast MRI for my sanity. It showed some enlarged lymphs. Dr Chue said I could wait and see what developed or have them out. I decided I wanted to know right away and had them out within a week of finding them. My surgeon agreed; "best to see them in the jar," he said.  GREAT news - NO CANCER! It's only a week past 3 1/2 months post mastectomy, the tumors turned out to be reactive but I feel better knowing they were not cancer. I could have biopsied them but that would not have told the whole picture.  I've got a long way to go hoping this doesn't come back and I know that but I feel like I've been given a gift. 

Everyone has to find their own path to deal with this horrible ordeal. I hope that cancer patients know that there may be more than one path in dealing with this. Since I am not a Dr I will just surmise that in reading these boards and seeing positive and negative outcomes I'm thinking there are multiple paths to success and failure. I have no way to know whether the AC would have worked for me or if I would have encountered the side effects down the road.  In the end we all have to make the best decisions for ourselves. 

I strongly agree with your children about getting the second opinion, maybe even a third or more and be comfortable with your path. 

My initial tumor was stage 2A, grade 3, BRCA positive









Back to Top
gordon15 View Drop Down
Senior Member
Senior Member


Joined: Jun 22 2015
Location: San Diego CA
Status: Offline
Points: 765
Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2018 at 10:12pm
Thank you for your story, I will pass-along to my wife, it means a lot, God bless.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
Back to Top
Asovey View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 08 2018 at 6:53pm
I am so happy to hear of your recovery!  You are right that we all have to find our own path.  I have just had one AC infusion, and so far so good.  Not fun but not horrible either.  I have heard good things about Dr. Chu on this site from members and so glad his approach worked for you.

Hoping your progress continues to be positive!

Ann
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.