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28 mom of 2 just diagnosed w./TNBC grade III

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canaya View Drop Down
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    Posted: Dec 05 2011 at 1:42pm
Good morning, this is all going sooo fast and its soooo scary :( I found a lump in my left breast early October and 2 weeks later found another one in my left arm pit. I put off seeing my Dr. till 11/16/11 and when I finally went in she felt the lumps and said she wasnt too worried and that she would get an Ultrasound done. I was able to get an Ultrasound dont the next day and once that was done i was sent for a mommogram and with in the hour had to make an appt for a biopsy of both areas. I had the Biopsy done on 11/22/11 and due to the holiday didnt get results till 11/28/11. I tried not to think about it but the min I got that call and my Dr. said I had TNBC and needed me to see an Oncologist and a Breast Surgeon. I was shocked. Im 28 how can this be. My family has never had BC before. I nursed my 2 children each for a year. Now I have been sent for blood work and a CT scan Tomorrow I go in for a Bone scan and an Ecocardiogram. My Onco wants me to start Chemo first since the lump in my breast is 6cmm and hopefully that will shrink it and then we will do surgery. I am soooo scared and I am having the hardest time trying to research the 3 diff chemo s that she sent me home with. Any advise would be helpful. I plan to stay working full time. I am worried about losing all of my hair I dont want to scare my children. If you read my post thank you :)
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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: Dec 05 2011 at 2:38pm
Hi Canaya,

So sorry you have to join this club none of us ever wanted to be a part of.  Many of us had no family history, breast fed, etc and ended up with TNBC.  We really don't know why it happens to any of us.  I can imagine you are in a state of shock right now.  I know I was and the whole time between diagnosis and surgery was a blur to me.  Please know that we are all here for you and will help you any way we can, even if it's just to vent. 

Neoadjuvant (chemo first) therapy is really good because you can see if the chemo is working and if it shrinks before surgery.  Do you know what type of chemo you'll be getting? 

Also ask your doctor's to test you for Vitamin D.  Most of us at diagnosis are deficient with Vitamin D.  It's very important to get your levels up.

Studies indicate that for proper health, serum vitamin D levels should be a minimum of 50 ng/mL (125 nmol/L), with optimal levels falling between 50-80 ng/mL (125-200 nmol/L). These values apply to both children and adults.
 http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-deficiency/am-i-vitamin-d-deficient/
http://www.vitamindcouncil.org/health-conditions/cancer/

Here's a study that was posted in another thread that may be of interest to you.

Originally posted by dmwolf dmwolf wrote:

Newbies: you might want to discuss this study with your doctor as you work together to come up with a treatment plan.


Chemotherapy Sequence Affects Early Breast Cancer Outcomes

Elsevier Global Medical News. 2011 Jan 7, B Jancin

SAN ANTONIO (EGMN) ó The sequence in which paclitaxel and anthracyclines are given for treatment of early breast cancer makes a big difference in long-term outcomes.

That's the conclusion reached in what is believed to be the largest-ever retrospective study of the clinical impact of the sequencing of taxanes and anthracyclines. The study involved 3,010 early breast cancer patients who were treated during 1994-2009 and entered into the prospective online database at the University of Texas M.D. Anderson Cancer Center, Houston.

The clear winner was paclitaxel, followed by anthracycline-based therapy with 5-fluorouracil, doxorubicin (Adriamycin), and cyclophosphamide or 5-fluorouracil, epirubicin, and cyclophosphamide, Dr. Ricardo H. Alvarez reported at the San Antonio Breast Cancer Symposium.

Starting with paclitaxel rather than an anthracycline-first regimen led to better long-term results in the settings of adjuvant chemotherapy and primary systemic (or neoadjuvant) therapy.

The adjuvant chemotherapy analysis included 1,596 women, three-quarters of whom received paclitaxel followed by anthracyclines. The 5-year relapse-free survival rate with this regimen was 88.8%, compared with 79.5% when anthracyclines were followed by paclitaxel. The 10-year relapse-free survival rates were 81.8% and 73.5%, respectively.

Five-year overall survival was 93.1% with paclitaxel followed by anthracyclines, compared with 83.2% for the reverse. The 10-year overall survival rates were 83.9% and 65.6%, respectively.

In a multivariate analysis that was stratified for potential confounders, including age, clinical stage, hormone receptor status, tumor grade, and era of diagnosis, the anthracyclines-first sequence was associated with a 67% increased risk of relapse (P less than .0001) and a 2.5-fold greater risk of mortality (P = .001), according to Dr. Alvarez, a medical oncologist at M.D. Anderson.

Among 1,414 patients who underwent neoadjuvant therapy, the 5-year relapse-free survival rate was 79.0% with the paclitaxel-first regimen vs. 61.2% with the anthracyclines-first regimen. Ten-year relapse-free survival occurred in 61.7% and 50.5%, respectively, of these patients.

Overall survival was 84.2% and 66.2% at 5 and 10 years, respectively, in patients who received paclitaxel followed by anthracyclines, compared with 71.3% and 53.4% in those who got anthracyclines first.

In a multivariate analysis, the anthracyclines-followed-by-paclitaxel sequence of neoadjuvant chemotherapy was associated with an adjusted 49% higher risk of relapse (P = .01) and a nonsignificant 28% increase in risk of all-cause mortality (P = .17), compared with the paclitaxel-first strategy.

The mechanism that accounts for the increased efficacy of taxane-first regimens for treatment of breast cancer is unclear, according to Dr. Alvarez.


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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SandraB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 3:35pm
Hi  Canaya,
Welcome here - you will get some great advice from these caring and knowledgeable folks.

I was in the same place as you a couple of months ago. I was still nursing my 2yo when I found the lump. The time between finding the lump, getting the scans and starting treatment is really scary. I won't deny that. And you know what? Feel scared - it's completely normal to. But do know that once you get started on treatment your anxiety will subside. I'd try not to stress about the triple negative aspect of your cancer. All breast cancer is bad. No-one wants to be dealing with it and all sub types carry their own risks and problems. I was told, by a few doctors actually, that the triple negative aspect isn't one to get all worked up about. It is one that is commonly seen in younger women. And the first doctor that told me that is one I completely trust. He is known around the world for his work in medical ethics and has published over 300 journal articles and authored or co-authored 10 books. If I can't trust him to give me sound and honest advice, who can I trust?

Chemo before surgery is common and completely acceptable. The chemo hasn't been too bad for me at all. What combinations has your oncologist suggested? And as for your hair falling out and scaring the kids - I was facing the same issue. So I tried to make light of it - saying how funny it would be if my 2yo pulled my wig off or hat off while we are out shopping etc. Of course my older 2,  boy 7yo and boy 5yo, thought that was hilarious. Make sure you talk to them and include them in what's going on. Kids need to know. If they don't their little imaginations will fill in the gaps and make up who knows what!

If you want to talk more, please send me a message. I am happy to share my experience and insights - for what they're worth - with you. 

Keep us updated,
Be well,
Sandra
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote canaya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 4:16pm
Thank you both for your kind words. I have a 2 year old daughter and an 8 year old son. I dont know what types or combos my Onco wants me to do. SHe wants to meet with me on Thursday to discuss the results of my CT Bone and Heart scans and blood work. I just dont know what to chose. She gave me 3 different names and all the side effects and what not but I cant bring myself to chose. I dont understand any of it and I just want to make a good choice. Where I live they dont have anyone close enough to my age to get me in contact with that has been through this. The closest group for BC is in a town 40 min away. Im glad thatthis board came up when googleing TNBC. I would like to know where to start I know I need to call Ins and get a case mamager and maybe file with my secondary Cancer Ins. com. What other steps should I take to prepare me for whats ahead?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 4:52pm
Hi canaya,
I am so sorry, but Welcome to the best triple negative breast cancer support site anywhere. You have already met Donna, who is a provider of great information for you to consider. Also Sandra's post, sharing that she is just ahead of you in her treatment. Others will be sharing and giving you good advise soon. I am here to let you know that, as hard as it is now, there is light at the end of the tunnel. I am a 5 year survivor but I am so aware of the initial fear and not knowing which path to choose.
When you meet with the oncologist on Thursday hopefully you will come away with some good news about your scans and also a treatment plan in place. Getting a second opinion might be something you want to do. I personally did not, but my doctor was very knowlegable about this type of cancer and I trusted him. You really need to trust your Dr and feel good about the treatment you are offered. It makes a big difference.

Please keep us posted and please share anything you wish, ask any questions, We Are Here For You.

God Bless,
Lillie
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 SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 5:19pm
Canaya,
I know the medical system is different here in Australia, so I can't advise you regarding insurance etc.  Why did the oncologist give you a choice? Did he/she explain the benefits or disadvantages of each? I was pretty much told 'this is what we use for node positive women'...! Maybe that's a bad thing, I don't know. It is scary to put all your trust in people you don't know. They are, quite literally, holding your life in their hands. But remember they do this day in and day out. This is what they are trained to do. What they have chosen to do. Trust them. And if you feel like you can't confide in them, get a second opinion. I think some doctors may be brilliant, but have a terrible bedside manner. What you need in an oncologist is a 'new best friend'. And remember you may have a sub type of breast cancer that is less common than others, but hey, we're not reinventing cancer here. It just is what it is. Don't google triple negative, it is not helpful. Ask the folks here or ask your doctors. 

One thing I have learnt since this diagnosis is that every day is special and I shouldn't take any of it for granted. And you know what, cancer or not, being in the present is all anyone has. I may well be hit by the proverbial bus next week. There are no guarantees in this life and once you have a cancer diagnosis to deal with, that reality hits you like a ton of bricks. If you feel like you're really struggling emotionally, maybe find a counsellor or psychologist to talk with. Or come here and talk. Like Lillie said, we're here for you.

Sandra

Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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K in Sugar Land View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote K in Sugar Land Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 6:09pm
Canaya, So sorry to hear your news, but I agree with the others, this is the best support group, you have found a wonderful site.  You might also benefit by reading Jennifer Griffin's blog.  She is a FOX news journalist diagnosed with stage 3 tnbc in Sept 2009.  She is the mom of 3 young children.  She was nursing her 8 month old son when she found her 8 cm tumor.  She is doing very well now and she is an inspiration just like the wonderful ladies in this community.  Please keep us updated.
 
btw, I had chemo before surgery and my results were very good. 


Edited by K in Sugar Land - Dec 05 2011 at 6:13pm
Dx IDC TNBC MDA2/11 age 51 T2N0M0 Grd 3 4.8cm BRCA- vitD22 Taxol 12wk FAC once 3 wk for 12 wk Complete chemo8/11 Tumor not seen on scans Lumpsurgery 0/4 nodes9/11 pCR 30rads done11/11 NED vitD3903/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 6:19pm
Canaya
So sorry for what you are having to go through.I have a 6 year old and she was worried about me loosing my hair. I went online to Amazon and ordered Nowhere Hair by Sue Glade. It discussed Mom loosing her hair in a way kids could understand. Amazon also has a ton of other books that you could use with your kids in explaining your cancer.
You said your doctor gave you information on 3 drugs and you were unsure of which one to pick. When I was in your place, I was going to be on all 3 drugs at one time. Is this possible or did your doctor explain each one of them to you and discuss pros and cons and tell you to chose?
I second the recommendation for a second opinion. They may tell you the samething, but it makes you feel more confident.
I also read that you were going to try and keep working full time, which is awesome. But remember you will have some side effects, so give youself a break in other areas of your life. Your health and your family are the most important things now. If someone volunters to help, let them!!
Best wishes and you and your family will be in my prayers.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 7:34pm
Welcome Canaya and we are all sorry to see you join this club.  You've got some great info and are probably overloaded already.  It is great that your doctor gave you choices, but you want to ask if you are getter "standard of care" or above.  To get above you usually have to be in a clinical trial.  There are some for newly diagnosed patients.  I believe one involves metformin which you might have seen lots of discussion here about.  Some add a third chemo to your first regimen.  Shrinking your tumor first is great for 2 reasons - it means less invasive surgery, and you get to see if the drugs are actually working.
 
I strongly recommend a 2nd opinion, especially if your oncologist is not at a major research hospital or had not had MUCH experience with triple negative breast cancer.  I am sure some folks closer to you can give you some names.  The best I can do is from MDAnderson in Houston and farther east. 
 
Good luck and hope you get lots of information that will help you get through this challenge. Hug your kids lots cause that's all that really matters!
Love,
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 10:59pm
Jennifer Griffin found a lump while nursing her son

Her chemo protocol was somewhat unique because of her age and the size of the tumor. It might be a lott to read, but you might find it helpful.

http://jengriffinblog.blogspot.com

I see this has already been mentioned. A day late as usual.

Edited by krisa - Dec 05 2011 at 11:02pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 7:36am
Krisa,

Your information is always useful and helpful.  

This is from Jennifer's blog:

On September 28, 2009 I was diagnosed with stage 3 Triple Negative breast cancer. They found a 9 cm tumor and another smaller one while I was nursing my son. I started 17 rounds of chemo: ACT plus carboplatin. Had a double mastectomy on April 6, 2010 followed by 6.5 weeks of radiation. At the time of my surgery I had had a complete pathologic response to the chemo - no evidence of disease. Here's what I learned along the way:

If you would like to learn more about "Triple Negative" breast cancer, please click ontohttp://www.tnbcfoundation.org/.

Sign up for a "Look Good, Feel Better" class, if you've just been diagnosed.http://www.lookgoodfeelbetter.org/

Order Rebecca Katz's "The Cancer Fighting Kitchen" and "One Bite at a Time," my go-to cancer cookbooks for chemo patients and beyond.


Edited by 123Donna - Dec 06 2011 at 8:50am
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 9:06am
Dear Canaya,

I am very sorry you are experiencing this at such a young age. You have received some excellent input form some of the marvelous folks here.

I have a specific suggestion and that is for you to consider getting a second opinion from MD Anderson Cancer Center in Houston before you start your chemo. 

MD Anderson Cancer Center (MDACC) is consistently ranked number one in the country..they have a lot of familiarity with TNBC. 

I am sending you my contact information in a PM if you would like to talk. I can walk you through how to register online at MDACC.

Here is a good utube video on getting a second opinion from the Cleveland Clinic.


This doc is a heart expert but the principle is the same and I believe MDACC would be a good place for you to get a second opinion.

Your children will love you without your hair...donít worry...maybe you can share the process with them so it is not so scary. A dear friend of mine, who was diagnosed while pregnant actually had her children help cut her hair before she started chemo. She and they got through it and you will too...

all the best,

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 mags20487 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 9:28am
Hi Cayana and welcome to our tnbc family.  You are in the scariest part of the journey and we are here to hold your hand all the way thru.  I am 6 chemos in of 8 total and should be done with chemo end of the year.  Then I will move on to the radiation phase.  I already had my double mast in August as I also have Metaplastic tnbc.  This forum is full of such wonderful women and men who really know their stuff and will answer your questions as they have mine for the last few months.  The breastcancer.org site is also wonderful and you can get together with women in your age group as well as you are not alone in this.  Once your treatment plan is in place and under way it does get a little better as far as knowing what to expect.  I am one of those ladies that is cheating her way thru chemo and have so little side effects.  You can do it too!  I wish you all the best as you begin your fight.
 
Maggie
Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 11:42am
Dear Canaya,

there is a wonderful book called Turning Heads with about 50 pictures and accompanying stories about women going thru chemo.

If you send me your addressI would be happy to send you a free copy. My daughter found it very inspirational...

all the best,

Steve

p.s. has anyone talked to you about the BRCA mutation?
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 canaya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 11:46am
thats so very kind of you :) Ill email you my addy. I had blood work last Friday along with a CT scan. Today Im having a bone scan than tomorrow a Heart scan and Thursday my Onco will give me all the results. I will ask her about that. Is there anything else that I should be asking her?
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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: Dec 06 2011 at 2:12pm
Hi Canaya,

Am sure others will be posting questions for you to consider on asking on your Onc MD visit.
Usually a good idea to bring written list to your appointment.

From the list of NCI (National Cancer Institute List of NCI centers) looks like the NCI center in NM is:
   University of New Mexico Cancer Research and Treatment Center
   UNM Cancer Center
   1201 Camino de Salud NE
   1 University of New Mexico
   Albuquerque, NM 87106
   Clinic Numbers
   General Information     505-272-4946
   New Mexico Statewide Toll-free Number     1-800-432-6806

From the NCCN list of Comprehensive Cancer Centers:
   MD Anderson
   Texas
    Phone: 1-877-MDA-6789.   (also see Steve's post above)
   http://www.mdanderson.org/

Some questions to consider asking:
Is your MD connected with the University of New Mexico Cancer Center?
Can you find out how many TNBC (triple negative breast cancer) patients your onc MD
     sees in a year?     What percentage of onc MD's patients are TNBC?
Who would your current onc MD consider for a second opinion?
What are the pros and cons of all your options?
Will your onc MD refer you to a certified genetic counsellor for info and evaluation for
    the BRCA test?   (Even though there is no breast cancer history in your family,
    the BRCA test should be strongly considered for young TNBC.
Do you know if you have a normal Vit D level?   If you do not know your Vitamin D level,
    ask your MD to check .   (Donna mentioned VIt D in her post above.)

Consider Steve's and Barbi's suggestion above to get a 2nd opinion for a treatment plan:
Per Steve's above note:
" have a specific suggestion and that is for you to consider getting a second opinion from
   MD Anderson   Cancer Center in Houston before you start your chemo.
   MD Anderson Cancer Center (MDACC) is consistently ranked number one in the country..they
   have a lot of      familiarity with TNBC.
   I am sending you my contact information in a PM if you would like to talk. I can walk you
   through how to register online at MDACC."

Also, if you wish to share the names of the 3 chemos your MD said the choice would be from,
others on the forum may be better able to help with questions to ask.
      
As Sandra B said above and as many of us feel, the time before treatment actually starts may
be difficult and anxiety and stress provoking.   Although it sounds counter-intuitive, things
start to get better once treatment gets started and you have a plan.

With tons of caring and positive thoughts for you,

Grateful for today...............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 2:48pm
canaya,

Judy provided you with a pretty good list.  You might also want to ask your onc if there are any clinical trials for neoadjuvant chemo that would be a good match for you.

You might want to have all these questions written down for your visit.  If possible, bring someone with you to take notes or bring a recorder to capture the conversation.  This time is stressful enough that we don't always "hear" what we're being told.  A second pair of ears or a tape recorder will allow you to get everything that is being discussed.

Here's a link to 25 Triple Negative neoadjuvant Clinical Trials.  You might want to print this out and take to your appointment.  A good starting point for treatment discussions.  


Please keep us posted.   

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 nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 4:42pm
Hi Canaya,

I was diagnosed three years ago when my son was six months old and I was 32. I found the lump while breastfeeding. I was scared, mad, and very confused but faith, support from my family and friends and this forum helped me get through treatment and face the challenges that this path has brought to my life.

The hair issue was tougher than I thought. I remember thinking that was the least important thing when I was diagnosed and then actually seeing myself bald in the mirror was really hard. But, once the initial shock passed I was able to manage it with a nice wig and nice scarves ( I worked part time during treatment and I had to see clients so I decided to use the wig and it was fine). The truth is that treatment went by fast and my hair was growing back a couple of months after I lost it. I decided to take my wig off when my hair was about 1cm long. My hair grew back fast and now almost three years after it is about 5 inches below shoulders and I have these nice curls that I didn't have before.

My son was very young while I was on chemo so he never questioned my looks But, last year at the Conference for young women affected by breast cancer (http://www.c4yw.org) I met Sue Glader, a breast cancer survivor who wrote a book for children explaining cancer and hair loss called Nowhere Hair. I actually bought one for my friend who was facing treatment then and had a 3 year old asking questions and she loved it. Here's the link to the Amazon page:
http://www.amazon.com/Nowhere-Hair-Explains-cancer-children/dp/0984359109/ref=sr_1_1?s=books&ie=UTF8&qid=1323202845&sr=1-1

I hope this helps and if you have any questions please send me a PM. We are here for you.

All the best,

Natalia


Edited by nmunoz - Dec 06 2011 at 8:57pm
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2011 at 5:29pm
an update re: Ms Munoz...

My wife, one of my sons and I had the pleasure, last week of having dinner with her, her husband and little boy.

I can report that Natalia is a beautiful woman...and was radiant at dinner, with a heart of gold...her husband looked great, too, and her little boy is fantastic!!!

Canaya, the main thing is to make sure you are getting the proper treatment. You will get through the chemo/hair loss....just have to try and make sure you follow a good treatment plan and there are no guarantees with any of this but please consider getting a second opinion...

please keep posting..we will be here for you...

good links, Natalia...thank you!!!

all the best,

Steve


Edited by steve - Dec 06 2011 at 5:29pm
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 canaya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2011 at 1:24pm
just wanted to update you all on myself. I did request a second opinion and my Onco gladly referred me to MD Anderson. I called and they wanted me out there for 9 days. After much consideration I have 100 % faith in my team here and decided to not go to MD Anderson and to not spend the 9 days away from my children. I start my first chemo treatment on 12/29/11 and will have 4 treatments. I have kept up a positive attitude and truth be told I have a mom and 2 sisters and out of us 4 women I'm just glad this is happening to me and not to them. I know that's a strange thing to saw but I am the strongest mentally and emotionally and financially and the support I have from all of them and all of my friends.
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