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blackn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote blackn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 9:00pm
I have been diagnosed with TNBC I was told today.  I am in desparate need of a doctor that specialize in this cancrer located in Northern Virginia.
 
My cancer is stage 3 and is spreading.  I am a single parent and I REFUSE to let this take over!
 
I NEED A DOCTOR!
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 9:52pm
blackn,
I am sorry that you have been diagnosed with this beast & had need to come find us. At the same time you have come to a fantastic group of men & women that are strong, knowledgeable, compassionate etc. All the things we need when our heads are swimming like yours is now.
In answer to your question, I don't know but I am sure someone will be along shortly.
 Many many many people here for all sorts of support.
Can you tell us what you have done thus far? Biopsy, lumpectomy? To the best of my understanding, you can't really get a true staging until either Lumpectomy or Mastectomy along with sentinal node biopsy. 
Has any doctor discussed genetic counseling for the BRCA 1&2 gene? 
You came to the right place here, to cry, rant, share, ask questions. We all know here what it is to feel the way you must right now.
Sending thoughts of strength your way.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 10:47pm
Hi Blackn,

I'm sorry you had to join us, but you found a good place for information and support.  I don't know of a specific doctor to recommend in your area, but there is a thread listing member recommendations for doctors.  Please click on this link:


Please consider going to an NCCN facility for a consultation.  The link below lists the member institutions, plus contains a breast cancer guideline.

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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blackn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote blackn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2012 at 7:59am
Thanks Natalie... this is what has been done
Mammogram
Ultrasound
Ultrasound w/ vacuum assisted needle biopsy
 
Meeting with Breast surgeon
 
Breast MRI
CT Scan
Bone Scan
 
The Breast surgeon was not understanding my holistic approach especially since I also have a fibrous uterine and they found something on 1.3cm on my liver.
 
With all of that being said I really need a knowledgable doctor and FAST!
 
I have researched online regarding dietary changes and I have started incorporating them.....
 
GOD IS GOOD AND BY HIS STRIPES I AM HEALED!!!
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blackn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote blackn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2012 at 8:07am
Thanks
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2012 at 8:08am
Sounds like you are one fierce fighter right out of the gate. Did you see the guide above yur entry on docs that specialize? Some doctors are just don't believe. You have to find the doctor and team that is right for you.
Sounds like you have some heavy stuff going on, I'm sorry that this happened to you.  
Seize the Day
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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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: Oct 10 2012 at 1:42pm
Afterglo,

Thank you for letting us know your decision to enjoy your time and check in with your oncologist
every 6 months (maybe). It is true everyone's situation is unique. I can not begin to imagine what it
would be like to have chronic illnesses for 25 years. You had a lot of things to consider.
I am so glad you took the time and effort to get more info and then made your decision.

If you find abbreviations on the forums, please do ask on the abbreviations forum what the
abbreviation means........and someone will post the meaning. When I first started on the forums,
there were a few abbreviations that took me awhile to figure out.
http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524_page1.html?KW=Abbreviations

With caring thoughts,
Grateful for today...............Judy

=======================================================

blackn,

Sending you caring thoughts.

It was fine to post here about your looking for a TNBC physician in north Virginia.
Hope it was OK........I started another thread
    http://forum.tnbcfoundation.org/tnbc-expert-in-north-virginia_topic10391.html
with hopes that between the question on this thread and a thread with the title of ? TNBC expert
in north Virginia, some one with additional info may post.

Grateful for today...........Judy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2012 at 8:00am
< ="" ="text/" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> Hi Blackn,
I will stand with you in faith that God will give you wisdom in which Doctor/Clinic to go to and that the treatments they design will be further enhanced by God's hand.  I know Jesus as my healer too, and we just need to trust and walk with Him one day at a time.  He has already won the battle!
 
Blessings and hugs to you,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Boo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2012 at 12:23pm
Traci,

Would it be too intrusive of me to ask you which trial drug MD Anderson suggested?  I am fighting lung mets as well and there are so many trials.  I am not suggesting that one persons situation is the same as the other, but I do respect MD Anderson.  That all said, I sure hope this works.  I will be cheering for you.  Blessing Traci and hugs to you too.

Anne
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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majjers View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2012 at 11:28am
< ="" ="text/" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> Hi Anne,
I am on a Bayer Trial (NCT01439152). One infusion every 21 days.  This is a mesothelin antibody linked to a chemo drug.  So it targets cells that over-express mesothelin, which apparently trip negs do, and the chemo is released to kill only the bad cells, not the good ones.  It is a Phase 1 so not alot of feedback yet. They told me one patient (who is lung cancer pt) has seen 50% reduction!  But I am tolerating the first dose very well; we'll see how it works in about 3-4 more weeks. Doing it more for all of us Trip Negs as I am the only pt with Trip Neg mets in the study.
 
Blessings to you and thanks for the cheers and hugs! God be ever with you,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2012 at 12:22pm
Thanks for the information, Traci and best of luck on the trial.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Boo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2012 at 8:47am
Thank you so much Traci for your response.  I am currently in a trial but my last lung scan showed increase in size of my mediastinal and supraclavicular lymph nodes.  It is not enough increase to put me out of the trial on this scan.  It is being debated as to whether it is an immune response or spread of the disease.  The few people I have asked feel it is disease spread.  I wish there was a better flashlight to help us find our way.  I probably will have to make some choices soon as to what next.  thank you for your response.  I think we are, for some reason, talking in the newly diagnosed section, so I am going to end and go over to the met section.  thank you again for your post.  God Bless and good luck.  Please let us know how you do.  I'll be cheering for you.  Anne
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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jonathan Reed View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jonathan Reed Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2012 at 1:48am
What treatments did you have? What support groups are there for newly diagnosed people? What changes in diet or lifestyle did you make? Any good books one can read? What else can one expect? Thank you for your help and advice.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CAfree12 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2012 at 12:45pm
I'm a little late to the party but wanted to post what I did during my dose dense AC treatments to prevent mouth ulcers (I never had one!!) 
On chemo days I crunched ice when the Adriamycin was infusing.  I then drank lots of crystal light (combination of lemonade and rasberry blast was my favorite.)  I used the tingling in my mouth as the indicator I needed to drink more.  I focused on eating high carb, high protein, SOFT foods - I never let a tortilla chip touch my lips for 10 days post chemo!!.. I ate lots of baked sweet potatoes, mac and cheese, cheese sticks, pudding and banana milkshakes made with Boost. 
Again - not ONE mouth ulcer!!
 
I did end up taking Nexium for the heartburn that  just wouldn't be controlled by the Zantac and I was fortunate enough to have insurance coverage for Emend - so those kept the nausea controlled.  I did find that not allowing myself to get really hungry helped - I snacked a lot!
 
Good luck!!
Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jerikay Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2012 at 6:54pm
I was recently diagnosed in Oct. I was a 24 year breast cancer survivor and was estrogen receptor positive the first diagnosis.  At first I was just glad that it wasn't a return of my initial cancer but then I found out what TNBC involved.  I just feel that if I beat it once, I can do it again....or at least make sure I give it my best shot!  I haven't been staged yet, but am checking out all my options.  Since I live near Chicago, I am checking out both Northwerstern and University of Chicgo.  Right now I am considering chemo, mastectomy/reconstruction (again), and more chemo, but don't know node status yet.
My thought it that the chemo first should give them a better idea of what treatment I am responding to.  I just want to get a decision made soon!  So glad to find this site!


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2012 at 12:20pm
Jerikay,
Sorry you have to be here - glad you found us.  I have received  a tremendous amount of support from this forum and I am sure you will too.  
Being treated at a NCCN cancer center is a very good idea - be sure to ask about clinical trials you may be eligible for.  Many incorporate standard of care with an investigational component so even if randomized to the control arm you will still be getting the standard of care. Most current trials are in the neoadjuvant setting ( chemo before surgery).  Also you might need to consider radiation therapy depending on nodal status.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jerikay Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2012 at 5:12pm
Lee, thanks so much for your input.  I did hear that I may need radiation depending on the sentinel node biopsy outcome.  It will also have an impact on my reconstruction decision because I wanted to have a lattissimus dorsi flap with implant when I have my mastectomy.  I just am anxious to get going on treatment but also know I am deciding om a good treatment option!  Jeri
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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: Nov 29 2012 at 2:53am
Jerikay,

Sending lots of caring and positive thoughts to you.
Sounds like you have really good self knowledge and instincts.
Many find that once there is a definite treatment plan......it makes things a little easier to deal with
       (in some respect.)

Great, great idea to get a consult at at NCCN or NCI center...ask for an appt with the TNBC expert/
    oncologist who sees a lot of TNBC patients, if possible.
You may already have made a consult appointment made.
If not, some considerations:
At the University of Chicago, there is: Olufunmilayo I. Olopade,M.D.
(Walter L. Palmer Distinguished Service Professor and Associate Dean for Global Health at The University of Chicago Medical Center)
http://www.uchospitals.edu/physicians/olufunmilayo-olopade.html
Think from the Chicago area, it is about 184 miles to Indianapolis.
   For a one time consult/trip, this may be a consideration.
   At the Indiana University Simon Cancer Center in Indianapolis, TNBC experts include:
          George Sledge, Jr. MD
               Dr. Sledge will be leaving for Stanford Cancer Center as of January, 2013.
               He is on the Scientific Advisory Board of the TNBC Foundation.
               http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=1098
               http://www.tnbcfoundation.org/ourpeople_sledge.htm
          Kathy MIller, MD
               http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=3008

A prior threads on the forum includes some of the links that may be helpful when one is
newly diagnosed:
http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html

You'll find in the above link info about BRCA testing and Vit D testing...........2 very important tests
to discuss with your physcian (if not already done.)
Info on BRCA at:
   http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA
Info on Vit D:     See esp. p.26
   http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

These forums are great places to ask questions........get some thoughts/considerations to
then discuss with your physician.   We share thoughts and our experiences. (No medical
advice is given.)   What may seem to be similar situations may have slight individual variables
resulting in different plans with each being the best for that individual. Continue to gather
TNBC information.........you will make the best plan for you.


With caring and positive thoughts,
Grateful for today............Judy

Edited by Grateful for today - Nov 29 2012 at 10:04pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tigerlilly_1629 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 14 2012 at 4:13pm
Hello - one week ago I was diagnosed - I obtained my pathology report and did enough research to know that I am triple negative (0%), grade 3. I haven't seen a doctor yet, but see a breast surgeon on the 17th.  I've also had a spinal-fluid leak for two years, another rare condition, so have become pretty adept at doing medical research. From what I've read everything seems pretty ominous about this diagnosis. I understand that numbers can be misleading and everyone reacts differently. Unfortunately, I am not a very good cheerleader, being a hard-core realist, who can't ignore cold-hard facts. But I think right now I'm at the point that I just want to hear that someone actually does really survive triple-negative breast cancer.
Thanks for reading
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Dec 14 2012 at 4:34pm

There are plenty of survivors.  If you go to the forum TNBC Talk, another survivor just posted a couple of days ago.  Also, google "positives about negatives" or "hormonenegative.blogspot.com." There is much information there (as there is here) and the author is a 6 year TNBC survivor who has done much research.  True, there is not yet a targeted therapy for TNBC, but many types are very chemo sensitive.  The recurrence rate is higher than for ER+, but if you make it 5 years without one, the recurrence rate for TNBC is actually lower than than for ER+.  I know when I was first diagnosed I was consumed with all the negative, but don't go there.  Do everything you can to fight it and then have hope.  Wishing you the best and I'm sure others will chime in.

Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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