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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2012 at 11:06am
Welcome to all Newbies,
 
I am here to invite you all to visit our thread called Spiritual Support. You can reach it by clking on the Forum Jump below and then on Support Groups. We are listed there.
We are just a bunch of believers who depend on prayer to help us through. We kind of help each other with the emotional side of this disease. Please come join us. We would love to hear from you.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nanc620 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2012 at 10:27pm
Hi,
I am 59 and was diagnosed on 10/1/2012.  Invasive carcinoma, 1.5 cm tumor triple negative??  I was stunned to the point of unbelief.  I still feel that way...had a lumpectomy on 10/22 with a sentinal node biopsy and a mediport placed.  I'm still having muscle pain which just proves I should have been working out a bit ;-)  I got the path report yesterday.  It is medullary cancer, no node involvement stage11.  My surgeon said that I should be happy about the medullary part and thrilled about the node results.  Of course being a former teacher I once again got online and found that medullary carcinoma is usually seen in Japanese woman (I'm causcasian) which is adding to my curiosity about my weird gene pool mix??  He got clear margins except for two small areas that were classified close.  The surgeon believes they are spots behind my nipple where he was a bit cautious.  He is consulting with the breast radiation specialist to see if it should fine to leave things be (not having another surgery) so that radiation can take care of those areas.  I'll see the surgeon on Tuesday for my surgical follow-up and to get the referral to an oncologist.  We are blessed here in the Detroit area to have several wonderful places to go...I am also going to use complementary medicine as a support.  A month prior to my diagnosis I took my first Reiki class with the intent of volunteering at the hospital where I had my surgery.  That will wait for now but I will take that 2nd class and I will volunteer there with an even better heart for patients. 

So...I am worried about chemo.  I recently bought a wonderful new book "Kicking Cancer in the Kitchen" which has become my constant companion.  Written by two young women who are survivors their candid and heartfelt advice is terrific.  I have been tying scarves around my head to try and envision myself without hair...why am I obsessed about losing my hair?  The blessings in all of this...I have a husband who loves me, two fabulous kids (18 and 22), friends and faith.  I am also so encouraged to find this site...

Now I'm going to go and figure out how to add all these abbreviations to my signature.
DX 10/1/2012 Medullary breast carcinoma Triple Negative
Lumpectomy 10/22/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2012 at 11:05pm
Hi Nanc620!
There is another great book to read "It's not about the Hair" by Debra Jarvis. 
My Mom had a wig made out of her own hair - which they buzz your head right when your hair begins to fall and then an exact replica wig is made!  It's really cool. Prior to my mom losing her hair that was her biggest fear but once she was buzzed she actually liked it and found it very "freeing".  (We don't have great hair in our family and it's very fine & thin taking a lot of products and "work" to make it look full.)  The wig maker added extra hair to make her wig look perfect and no one would ever know the difference.  Mom has bought a few wigs too - they do serve a good function in keeping your head warm in the winter. The good news is this is a temporary side effect of this crappy cancer.  Your hair WILL grow back!  :)
My best adivice on chemo is everyone responds differently to chemo.  Mom was on chemo for a year straight and only had a few delays.  She didn't have a lot of the listed negative side effects.  We would go to chemo together and then out for lunch afterwards.  If you don't already have one get a Amazon Kindle Fire / Mac Ipad or simular.  On-line shopping is always more fun and exciting when you are hopped up on meds! :)
Buy some shark liver oil - this helped my mom's numbers come up quickly between treatments
we could only find it on line (unless you have a fancy supplement place near by). 
We are all here for you 24-7. Many of us are night owls!
Rach 
 
 
 
 
 
 
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2012 at 1:00am
Wonderful advice from Rachel...and also remember we have the Spiritual Support thread as well.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Nanc620 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nanc620 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2012 at 5:43pm
Rachel and Carol,
You both brought tears to my eyes...I feel the strength and love from both of you.  I will go over to the Spiritual Support forum...there are NEVER enough prayers, are there?

Again...thank you and blessings.

Nanc
DX 10/1/2012 Medullary breast carcinoma Triple Negative
Lumpectomy 10/22/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2012 at 10:04am
Stombsbread-

To answer your question, there are many, many TNBC survivors here who had positive nodes and are doing well today.  You're certainly not alone.  I know everything seems crazy right now.  I remember it well. Once you start treatment you feel more in control. Being proactive in fighting this disease brings a strength of spirit we didn't know we had.

Nanc-

I'm sorry you had a reason to find this forum, but glad you're here.  This place has been my life-line for support and information.. friendships and prayer.   Everyone here is beautifully unique.. yet we're all one.  Feeling much of the same emotions.. fighting the same battles for ourselves and along side our TN sisters and co-surviviors. We're all here for each other.   I look forward to hearing more from you.   A big welcome hug.

Blessings to you both,

Mindy
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Kerin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2012 at 9:26pm
 Newly diagnosed, 48, 1.2 cm, poorly dif, grade 3, neg nodes. Lumpectomy, finished 4 rounds AC now on weekly Taxol. Radiation scheduled after chemo. I have positive family hx -mom, aunt, cousin. Aunt and cousin did gene test and they were negative. They all had hormone positive cancers except mine. Some people have told me to get mastectomy. Dr recommends radiation. 
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Kerin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2012 at 9:44pm
My name is Kerin and I'm new to this site. Diagnosed in July 1.2 cm, grade 3 poor dif, neg nodes. Did 4 AC chemo now on weekly Taxol. Just looking for any and all info on TNBC. + family history - mom, aunt, cousin - all with hormone + cancer. I haven't had gene test but my aunt and cousin were negative.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2012 at 11:45pm
Hi Kerin,

Sorry you have a reason to be here (TNBC), but you'll find lots of support and information.  You mentioned your aunt and cousin being tested for the BRCA gene, but was your mom?  With your family history, you should ask your oncologist for the BRCA test.  

Congrats on finishing the AC part.  Hope the Taxol goes smoothly for you.

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 CMC_2012 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2012 at 3:14pm
Hello again.  My friend Sharon was able to get a PET Scan ahead of January (since she had used all three allocated Scans provided by Medicaid each year).  Tomorrow she finds out if they are going to stop all treatments depending upon the results.  They have returned giving her Xeloda; 1500 mg 2x a day...she feels that the oral chemo is shrinking her visible tumors.  If they stop treatment then her financial assistance stops, too.  One of my questions is, will clinical trials only accept patients if they are currently undergoing treatment?  I know Medicaid does not approve clinical trials but there must be other options...hell, she has worked most of her life.  If one has a terminal disease as her team told her there has to be something under the federal govt that will provide some type of assistance.  I told Sharon to get copies of all her records...I refuse to give-up and I know Sharon is a warrior and will not give-up even tho her surgeon told her last week her future treatments depends on the results of the PET Scan...arghhhhhhh!  I know her survival rate is slim but we refuse to "throw-in-the-towel".
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2012 at 11:44am
I have never had a blog or any type of social network but thought I'd sign up and share experiences that I've had thus far with my cancer.  I was diagnosed with Invasive Carcinoma with Medullary Features (lobular)/Grade 3/Preliminary Stage 2, on September 19 several days before my 40th birthday.  I have two sons; one is in college(had him at a young age) and my other son (my Lovebug) is five years old.  I am currently in a Clinical Trial at UCSD, Moore's Cancer Center and it seems as if I have a fabulous oncology team.  I am receiving weekly chemo and will be on #3 tomorrow and I swear my tumor which was at 3.5cm in my right breast/spread to some lymphnodes/questionable in internal mammary, is shrinking and I haven't had any radiating pain in my upper right chest area (referred pain from tumor or lymphnodes).  My doctor manually measured right before I began and it was 4.4cm (from Sept-Oct. it grew more) and I have to really lean back to feel the mass and I believe that's fantastic!  I pray it continues to work.  I have a total of 12 chemo sessions of Taxol and Clinical Trial drug and A/C (standard chemo) for 4 more weeks after.  I wait one month and aiming for lumpectomy and lymphnodes removal then 6-7 weeks of radiation.  I go in tomorrow for #3, another MRI, another biopsy so praying that all is turning out for the outcome I'm looking for.  I will continue to have faith in the Lord and will fight this out! Big smile

Edited by momof2 - Nov 07 2012 at 11:55am
TNBC/ILCw/MedullaryFeatures 9/19/12/age39,Stage2b,Grade 3,4x4cm,InternalMammary 1.3x0.6cm,16 NodesRemoved/rb lumpectomy/ClearMargins 3/15/13,BRCA1/2 Neg,8x AM386/Taxol;4x A/C;34Rads6/26/13;NED5/18/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2012 at 2:31pm
Dear Momof2,
Welcome to the TNBC site.  Sorry you need to find it, but it is such a wonderful source of support and information.
 
It sounds as though you have a good treatment regimen going.  I had the same chemo as you, except the A/C first and then the taxol and a trial drug.  I had a mastectomy first, before chemo and did not do radiation.   Radiation is almost always done if you have a lumpectomy.  SO GLAD TO HEAR THAT YOU HAVE TO "LEAN BACK" TO FEEL THE TUMOR ANYMORE.  Sounds like a good thing to me. 
Happy about your "Lovebug" and your "College Man".   Children make life worth fighting for.  And Yes, continue to have faith in the Lord and fight.   I will pray that you have the best outcome possible.  Please visit our Spiritual Support thread.  We use that thread for prayers, devotions, sharing, caring and Spiritual Support.   Maybe you will want to share something there.
 
God Bless,
Lillie


Edited by Lillie - Nov 07 2012 at 2:32pm
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2012 at 10:40pm
Dear Lillie,

Thank you very much for your kind words and I will definitely look at the Spiritual Support Thread in depth.  I am packing my bags getting ready to head to La Jolla in a bit for tomorrow mornings doctor exam and chemo treatment.  I am on AMG 386 (trial drug) and taxol (given in that order via port in left chest).  I am actually excited to hear confirmation about the size of my tumor shrinking.  I can tell you have a beautiful soul; I just feel it.  May God bless you as well; it is a journey we are on I know.  I will let you know how my appointment goes tomorrow night or Friday.  

God bless,
Monica Smile
TNBC/ILCw/MedullaryFeatures 9/19/12/age39,Stage2b,Grade 3,4x4cm,InternalMammary 1.3x0.6cm,16 NodesRemoved/rb lumpectomy/ClearMargins 3/15/13,BRCA1/2 Neg,8x AM386/Taxol;4x A/C;34Rads6/26/13;NED5/18/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2012 at 12:59am
Dear Lillie,

Well, my visit was a good one.  My doctor manually measured at approx 4x4 on Chemo#1 and measured yesterday before Chemo #3 at 1x2 shrinkage.  So that is great news of course.  I knew that my hair would begin to thin out on these two drugs but didn't expect it to happen at the same time.  I had more hair come out in my hairbrush so I know the thinning is beginning.  Well, I'll keep it as long as I can because when I start standard chemo meds (A/C) it will all fall out.  I was very tired around 11:45 to 7pm today but didn't get to rest until 6:15-7pm.  I needed that too.  I'm just watching Cars 2 with my five year old Lovebug, Caleb as well as typing..LOL!  I go next Thursday and get my 2nd MRI and 3rd biopsy to see accurate numbers etc and onto Chemo #4.  Hope I continue to get good news through it all.  There is a vaccine they mentioned on this site called AE37 but its not for me because I'm a zero through and through, but my doctor mentioned I may be a candidate for a vaccine called E75 and I believe its in trial Phase 3 so that's a good thing.  He said he'll look into it for me for afterward.  Anyway, thought I'd give you an update.  Good night for now! Big smile  
TNBC/ILCw/MedullaryFeatures 9/19/12/age39,Stage2b,Grade 3,4x4cm,InternalMammary 1.3x0.6cm,16 NodesRemoved/rb lumpectomy/ClearMargins 3/15/13,BRCA1/2 Neg,8x AM386/Taxol;4x A/C;34Rads6/26/13;NED5/18/16
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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: Nov 10 2012 at 11:29am
Monica,
Are you on the ISPY-2 trial?  I would have liked to be part of that if I lived anywhere close to any of the sites.  I think it is a good trial.
I am interested in the cancer vaccines too -- from I what I can tell according to clinicaltrials.gov, both AE37 and E75 trials will take pts with low Her2 expression (1+ or 2+) but E75 is restricted to node positive patients whereas the AE37 trial will take pts with node+ diseae or node- if high risk (TNBC).  The phase 2 trial for AE37 is completed and they will be opening up phase 3 in the near future.
My core biopsy showed I was 1+ Her2 but my surgical specimen after neoadjuvant chemo was her2 0 -- when I spoke with one of the oncologists who will be part of the phase 3 AE37 trial she said I would be eligible.
Good 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2012 at 1:44pm
Dear Lee21,

Yes, I am part of that trial.  My medical oncologist is the one that said I would not qualify for AE37 but would for E75...idk he was reviewing my numbers and said he has to get exact numbers because I think some test was missing information, so he would let me know later.  I really hope I qualify for E75 because he seemed very happy about those results.  What is your status now?  God bless and take care!

MonicaSmile
TNBC/ILCw/MedullaryFeatures 9/19/12/age39,Stage2b,Grade 3,4x4cm,InternalMammary 1.3x0.6cm,16 NodesRemoved/rb lumpectomy/ClearMargins 3/15/13,BRCA1/2 Neg,8x AM386/Taxol;4x A/C;34Rads6/26/13;NED5/18/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wattamatta Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2012 at 4:33pm
Hi, just registered so I'm a newbie to this forum as well as to triple neg breast cancer. I was diagnosed on Oct. 26 and have surgery scheduled for Dec. 6. I'm alternating between keeping so busy I don't think about it and reading everything I can find out about it. My first and third pathologist called it lobular, but my second pathologist isn't sure whether its ductal, lobular or both, although he is sure it is triple neg. If it's lobular, it would be very unusual, and I haven't been able to find any information about it. Is there anyone on the site who has lobular BC triple negative?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2012 at 4:57pm
Welcome watta,
 
I am so sorry that you have need of this forum. We are so happy you found us. This is a group of loving, caring, knowledgeable (me, not so much).
My tumor was ductal so I can't help you there.
I am sure someone will come along who can answer your questions. Just be patient as it's a holiday and some are busy busy busy. But hang in there and someone will be here soon to help you.
 
I would like to take this opportunity to invite you to join us on the Spiritual Support thread. There you find some of the same women there that also post here. We are just a bunch of Bible believing sisters and brothers. You can get to us by clicking on Forum Jump at the bottom of this page then click on Support Groups and there you will find us. Looking forward to seeing you there as well as here.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wattamatta Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2012 at 5:56pm
Thanks Carol, for your quick response, support and invitation. Emotionally I'm all over the place since my diagnosis, although acupuncture is helping. A couple of days ago I started visualization which helps me feel as if I have some control over this thing. Thanks to postings I read on this forum, I checked my vitamin D level and found it was low, so I'm starting to take supplements. In the short time left before treatment starts I'm trying to make myself as strong as I can, and I welcome any help from this "group of loving, caring, knowledgeable" folks!

Thanks so much,
Watta
60 yo, DX 10/26/12. BMX 12/6/12. TNBC ILC, 2.1 cm, Stage 2, Grade 2, margins not clean, 0/1 nodes.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2012 at 6:26pm
Welcome Watta,

Congratulations on knowing your Vitamin D level.  Most of us don't find out until we are well into treatment and unfortunately, almost all of us are deficient when diagnosed.  Getting your levels up will help with surgery and treatment.  We have a thread on Vitamin D3 that you might be interested in looking at.

In regard to your question about lobular, I think some of us may have a lobular component to our tumor.  Most will be IDC (Invasive Ductal Carcinoma), but lobular means it's located in the lobular ducts of the breast.  I have a friend who was diagnosed with lobular TNBC Stage 0 a year before me.  Unfortunately she had a surgeon perform the lumpectomy that didn't get all the area around the lobular duct.  When she went to the breast surgeon, they told her since it was lobular and the first surgeon mucked it up, she needed a mastectomy.   

Keep us posted on how you're doing.

Donna


Edited by 123Donna - Nov 21 2012 at 11:47pm
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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