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    Posted: Jul 21 2010 at 7:20pm
Hi, My name is Ellen and I am 50 years old.  I found a lump in my left breast on May 14 and my life has been turned upside down ever since.  I had an excisional biopsy on May 27 and was told I had Breast Cancer.  The surgeon told me I had 3 choices, lumpectomy, remove 1 breast or remove both breasts.  She said if I had the lumpectomy I would have radiation and if I went with breast removal no radiation.  She said I would need no chemo.  At the urging of my sister who is a nurse, I went to see an oncologist who went over my pathology report and broke the news to me that I had Triple Negative Breast Cancer and that even though I was stage 1, I would need chemo.  When I went back to the surgeon she seemed taken aback that I had seen an oncologist and when I told her I had Triple negative she said no, you have infiltrating medullary carcinoma.  At that point I decided to find a new doctor.  I went to the breast center in Annapolis, MD and had my lumpectomy and sentinel node biopsy there.  I had a medi-port inserted today and am really sore.  Chemo starts August 2.  So sounds like I won't be done with treatment until January.  I have learned so much by reading the posts in this forum and I want to say thank you all for sharing what you have learned.  Has anyone heard about a supplement named Avemar.  A neighbor brought some literature over here yesterday and said that I should start taking it.  I told him I would read up on it and check with my dr.
Age 50 DX: 6/3/10 IDC, Stg 1A Grd 3 1.9cm, KI-67 85%, lump. w/SNB, clear margins, lymph node 0/1, 4 cycles A/C (dose dense) every 2 wks, 4 cycles Taxol(dose dense) every 2 wks, 33 rads, BRCA 1/2 neg.
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Hi, my name is Sharon, I am 59, on June 12th I was sitting in he hospital with my husband who had a total knee replacement and I had this horrible pain in my breast out of the blue. I had a normal mammoggram at the end of September.  I called my GYNO the next AM (Sat) and she said to go to the beast center on Monday AM.  The radiologist did an ultrasound and thought I had 2 large cysts - he planned to drain them on Thursday.  When they got in there they were solid masses, and very suspicious --- my gyno called me into her office Friday and said they were very concerned --- I knew something was not right.
 
I called friends in Cincinnati in the medical field and asked them who to see.  On Monday my gyno called and said the biopsies were positive.  I had a surgeon in mind and got in on Wednesday.  The following Monday I had a left mastectomy.
 
I am doing all my tests now, my husband and I both cry off and on all day, he just retired and the oncologist explained the triple negataive to us -- the odds seem staggering.
 
I hope people can help me understand if this is a death sentence or not.  I am Stage IIIA - I had 8 nodes positive.
 
Thanks for any input.
 
Sharon
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 8:35pm
Ellen,
So sorry to hear about the TNBC.  It sounds like your surgeon didn't quite understand the ramifications, but the rest of the women and men here certainly do.  It is good you went to an oncologist who seems to be doing exactly what needs to be done in light of the TN.
 
As far as the port goes, the pain of that took me by surprise.  I felt as if I couldn't move my head.  But, that does go away within a short time.  I hardly notice mine now, and am thankful I went this route.  Getting the chemo through the port has been pretty easy (especially with the freezing cream).  At least that's been my experience.
 
Good luck with the chemo. 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 8:39pm
Has anyone experienced headaches and vision issues during chemo?  I am taking Avastin and know that it can cause high blood pressure.  The nurse practioner said it also causes headaches.  I've had a headache for days now.  It's not a terrible headache, just a nagging one.  My eyes also feel funny.  I told the oncologist about it and was sent right to the hospital for an MRI to rule out a brain bleed and brain mets.  Needless to say, I am scared to death.  I just had a PET Scan and my nodes and margins were clear.  It has to be from the drugs, right?  I am sure this is the first of many scares I will have. 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 8:49pm
Sharon,
I am new to all of this too, and I know it feels as if having TNBC is a death sentence, but it isn't.  It is a rollarcoaster and there will be a lot of anxiety along the way, but most with TNBC do respond well to chemo.  There may be more bumps in our road and the cancer may recurr, but it is treatable, and my understanding is that Stage 3, is curable.   I am sure that there will be others who will come to give you reassurance.  There are many here who have been dealing with this disease for years and they can provide a lot of support and guidance.
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 8:57pm
Sharon,
BTW, all you have to do is look at my post right below yours, and you will see that I am dealing with what is likely my first scare that will probably turn out to be nothing serious.  As I speak with others who are TN, they talk of a pain that leads them to believe that the cancer has recurred or spread when it hasn't.   While we are at greater risk, and we do need to be vigilant, most of the time all is okay.
 
Good luck to you as you begin chemo. 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 9:02pm
Sharon, it is definitely not a death sentence.  Outcome for stage III all depends on chemosensitivity.  If you are among the about 50% of women with cancers that are very sensitive to chemo, you will be cured by treatment.    Just make sure to do the chemo, and take it one day at a time.  We are here for you.  Please keep us posted as you put your chemo plan into place.  We can advise you.  (definitely dose dense, definitely adria and cytoxan, definitely taxane, taxane first is better, combine taxane with platinum better still, taxane with platinum and PARPi better yet, do a clinical trial if you can....you need to hit this thing with guns blazing).
Love,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2010 at 10:53pm
Hello Ellen and welcome to this great site!

What you know now is that you need to gather a great team of doctors on your side to give you confidence that you need to get through treatment.  If there is any good thing about TNBC is that chemotherapy often have great results against this aggressive cancer.

Some things we did upon the initial diagnosis is this:

1. There was a recommendation in our clinic (Swedish Cancer Clinic in Seattle) for a Naturopathic doctor.  He was able to assist us through all phases of treatment by telling us what supplements to take as we progresses though all phases of treatment.  

2. We used two psychologists to help with the diagnosis, one was a cancer survivor herself and we saw her for about twenty weeks.  

3. Got a air purifier machine for the bedroom to make breathing easier (it seemed to help mouth sores)

4. Planned for hair loss and had the insurance company pay for it.

5. Use a program to keep track of all your expenses so that your are not double billed for things.  

6. Keep a list with you whenever you see a doctor of all the things you are taking because every time you see a nurse they will ask you what medications you are taking.

7. Dress comfortably when going to chemotherapy sessions, bring slippers and ask for warm blankets.

Gather up your friends that want to help and take them up on their offers.  They say that those that keep a journal have a better time getting through it.  I wish you the best Ellen, and we are here rooting for you, blessings from Seattle!

Dave
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 12:10am
Dave,

Great advice.

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 zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 1:25am
Ellen, my surgeon told me I shouldn't need any chemo because he'd gotten clean margins.  After seeing my oncologist, I told my surgeon that I knew why he wasn't an oncologist!  Good for you for changing docs!  Never heard of Avemar, but check with your oncologist.  Praying that you have a great outcome.
Sharon, this doesn't have to be a death sentence at all.  Dave had great advice about the preparations for chemo.  Anticipating the chemo is much worse than the actual process.  Be glad there are lots of drugs out there for us triple negative gals.  We typically respond quite well to chemo.  Praying for a good outcome for you.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 7:43am
Originally posted by guygirl guygirl wrote:

Hi, My name is Ellen and I am 50 years old. . . Has anyone heard about a supplement named Avemar.  A neighbor brought some literature over here yesterday and said that I should start taking it.  I told him I would read up on it and check with my dr.


Here's info about Avemar.  Please check with your onc before taking it.

http://www.mskcc.org/mskcc/html/69418.cfm#BrandName

Common Name

Fermented Wheat germ extract, MSC (Code Name)

Brand Name

Avemar, Avé, AvéULTRA, AWGE

Clinical Summary

Fermented wheat germ extract (WGE) was developed by Mate Hidvegi, a Hungarian chemist, in the 1990s. It should not be confused with wheat germ oil. WGE is used as a dietary supplement by cancer patients in Hungary to improve quality of life. Results from in vitro studies show that WGE has anticancer (1) (2) (12) (14), antimetastatic (3), and immunomodulatory (2) (4) effects. It may also play a role in reducing cardiovascular symptoms due to chronic hypertension, diabetes and obesity (15).

Further, WGE increased estrogen receptor (ER) activity in vitro. However, when used along with tamoxifen, an ER antagonist, it enhanced efficacy of tamoxifen in ER positive breast cancer cells (5). The antitumor effect of WGE is comparable to other endocrine treatments in animal models (11). WGE also increased production of tumor necrosis factor and cytokines that are responsible for tumor cell death (6). Data from pilot studies indicate a beneficial role for WGE in patients with colorectal cancer (7) and in reducing treatment associated febrile neutropenia in pediatric cancer patients (8). It also prolonged survival of patients with melanoma when used with chemotherapy (13). However, these effects must be confirmed by large scale, well-designed clinical trials.

Because it potentiates estrogen receptor activity, patients with hormonal sensitive cancers should use WGE with caution. Reported mild side effects include diarrhea, nausea, flatulence, soft stool, constipation, and dizziness. Long term use of WGE may result in increased body weight (10).

Purported uses
  • Autoimmune diseases
  • Cancer treatment
  • Immunomodulation

  • Constituents

    Wheat germ

    Mechanism of Action

    Although the exact mechanism of action is not clear, WGE was shown to increase TNF and cytokine production in vitro by activating certain metabolic pathways (6) involved in tumor cell death. It also demonstrated cytotoxic effects on human lymphoma cells by inducing apoptosis (14). WGE regulates tumor cell proliferation by inhibiting glycolysis and pentose cycle enzymes and induces apoptosis through caspase-3-mediated poly (ADP ribose) polymerase cleavage (4).

    Warnings

    WGE should be taken under medical supervision only. Diabetics should use this product with caution because of the high carbohydrate content.
    (10)

    Contraindications

  • Pregnant and nursing women
  • Patients with organ or tissue transplants
  • Patients with bleeding gastric or duodenal ulcers, enteritis/colitis, malabsorption syndrome.
  • Patients with sensitivity to gluten and those with fructose intolerance.
    (10)

  • Adverse Reactions

    Mild and infrequent side effects may include diarrhea, nausea, flatulence, soft stool, constipation, dizziness. Long term use of WGE may result in increased body weight.
    (10) (13)

    WGE may have estrogen receptor activity. Patients with hormonal-sensitive cancers should consult with a physician before using WGE.

    Herb-Drug Interactions

    WGE should be taken at least two hours before or after consuming vitamin C.
    (10)

    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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    Sharon Bruno View Drop Down
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Bruno Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 5:17pm
    I cannot imaging having a doctor tell you not to do chemo --
    This does reaffirm I am lucky that I found good doctors by asking people I knew in the medical fields in Cincinnati.
     
    Sharon B
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Bruno Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 5:21pm
    I am figuring out this e-mail system
    I just posted a reply to the person below you .....
     
    But what I said was not lucky I feel that the doctors I got information from in the beginning of this really seem on the ball.  I called friends who work in the medical fields in Cincinnati and they directed me to the right people.  If the doctors are in the blind on this it is really scary.
     
    Please keep me posted - sounds like we are in a similar place.
    I had OP surgery this AM and got my port in.
     
    Sharon B
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Bruno Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 5:25pm
    One thing I noticed was that I also had an odd shaped tumor - it looked like 3 tumors connected which made it hard to measure ................
     
    I was sitting in the hospital with my husband following his surgery and had horrible pain in my left nipple.  I am convined that without that pain this would have grown until September and that would have been devestating.  I also had a large tumor near my nipple that caused the pain I  had ... it is started within a 4 hour period of time.
     
    Sharon
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Bruno Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 5:28pm
    Denise
     
    Thanks for your support - I printed our the meds and I will discuss them with my oncologist - who is a male breast cancer surviror.  He lost his mother to breast cancer too and takes it very serious.
     
    Thanks a million
    Sharon
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote bonsi77 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 9:02pm
    Hi:
     My name is Diane and my Mom was just diagnosed with TNBC last week. Her 1 tumor is about 4.5cm ICD another small tumor 1.5cm ICD and she has at least one 1 lymph node involved. We met with surgeon who recommended chemo first due to size of tumor,location in breast and also the lymph node involvement. 
     Met with 1 oncologist today who said 2-3 treatments of Adrymocine and then most probably surgery. I had done a lot of research in the past week and found that recommendation odd especially due to the fat based on size of tumor and lymph node involvement that she is Stage 3 and a more aggressive pre-treatment would be needed. I have read a lot of the posts on this forum and seems that is the case with a lot of woman who have a similar situation as my mom. Any thoughts of feedback on this? We are  meeting with a 2nd oncologist tomorrow for another opinion. So I'm interested to see what he will say but I was expecting a lot more pre-chemo and combo of AC and also T and getting the tumor to be as small if not gone, then surgery and then some post chemo/radiation. 

    Any feedback on this would be great. Thank you all this site is very helpful and right now I'm just trying to make sure my mom is getting the best treatment and the right treatment.

    Diane
     
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    scared View Drop Down
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 9:55pm
    Hello Diane,

    We got lucky as far as our choice of where we had our treatment done, after the initial interview with the oncologist we decided that she was a person we could trust in our treatment.  Later I found out she was highly rated in Seattle for breast cancer oncology (by her peers).  She told us that our case was discussed with a panel of other oncologists and surgeons and they came to the conclusion that approved the course of treatment that she recommended.

    In our situation we decided to reduce the size of the tumor and then do surgery.  After 15 weeks of Cytoxin and Andryimacyn (sp?) we had to get a mastectomy because there were no clear margins.  

    The point I am getting at is that you need to have full confidence in your mom's team and it sounds to me like you need to get another opinion.

    Wishing you the best,

    Dave
    Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote rebecca lynn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2010 at 11:04pm
    Sharon,
     
    I am also 111A and had 5 positive nodes and I am 2 years out of treatments and doing well...you can get thru this and be ok ....I still worry and get scared sometimes but it gets better..
    I live in Colorado right now and have our house for sale and are going to move to the Cincinnati area...do you live there? Our family is all back there and when I got sick I decided being closer to family was very important to me...although I hate to leave my doctors here...If you find a good one in the Cincinnati area could you let me know....if I can be of any help just let me know...
     
    HUGS
    Rebecca
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    Dx 12/08
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2010 at 7:02am
    Hi Sharon its Kat from Australia. I was diagnosed with stage 2 grade 3 tnb I had 19mm tumour in breast as well as a lymph node in breast, also 3 /14 lymph nodes under left arm involved. I was advised to have my left breast removed as the cancer was aggressive and deep on the chest wall. I opted to remove both breasts as I had large breasts and had already had previous lumps on the right breast so I figured i wasnt going to go through this twice and I am very very happy with my decision to remove them both. I also had a full u/a clearance. I commenced chemo and avastin 6 weeks after my surgery. I had 25 radiation treatments and I have 2 more avastin treatments left and then I am done. Except for crossing my fingers I feel I have done everything I can to acheive the best result possible. I have surrounded myself with wonderful family and friends, and leaned on them whenever times got tough. I also laughed myself silly most of the time as it is also a remedy for getting through this. Lots of funny movies, games nights, and lots and lots of positive company. The dark times come, usually when you least expect it. Allow yourself 15 mins of hard core dummy spitting then shake yourself off and move forward. If your dont this thing can drag you to the pits of dispair. Just remember you are not alone, even though you may feel this way. We are the strangest extention of a family you will ever get, but we will always be there for you. You can also tell us the things that you are too afraid to tell anyone else. You dont have to be strong for us, you dont have to tell us what you think we want to hear, and when we tell you that we know how you feel, it is with honesty. No lies, No pretence, No guilt. Just us.... You said that you found your lump whilst with your husband at the hospital after his surgery. I had an odd thing happen to me when I found mine. I was watching Oprah interviewing Christina Applegate about her breast cancer (this is very very true) I leant forward to get the remote control to turn up the sound, when a pain shot across my chest to my under arm. I reached under my arm to massage the area as it hurt like the buggery, when I found this massive lump. To say I was gobsmacked is an understatement. The irony of the situation still amuses me. This cancer was given to me for a reason. It has taught me things I would never have imagined had it not happened. Sometimes I think of it as another person, who just happens to be sharing my body. The reason for this is that people now treat me as someone else. I am no longer Katrina. I am Katrina who has cancer! We co-exist in the same body, we respect each other, and we love and hate each other depending on our moods. The sad thing is that I cannot wait to be without Katrina with cancer ASAP. Even if she is part of who I have now become. gl with your treatment girls. Hope this helps. luv Kat
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    Post Options Post Options   Thanks (0) Thanks(0)   Quote ksl122 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2010 at 5:19pm
    Hi Ellen - I just found this site today and started reading.  Your note struck me, as your diagnosis and circumstances are almost exactly the same as mine....although I am 7 or 8 months ahead of you.  I was the same stage, same size tumor, had a lumpectomy, 4 rounds of chemo (although every three weeks), and 33 sessions of radiation.  I just want you to know that there is light on the other side of this.  The mediport was very uncomfortable for me, actually the whole way through the process, but I just had it removed a couple of weeks ago, and the area is starting to feel better. I would be happy to answer any questions that you might have as you continue on this journey.....It is a very personal journey, no matter how much support that you have....and I trust that you have a support network.  I have learned so much about myself, and continue to do so.  I have been surprised at how different I really feel.....and you will likely feel this way too.  I am not familiar with Avenar, but would recommend that you talk with the oncologist about it.  They often don't want you taking supplements while going through chemo.....The very best to you.
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