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New and Scared

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=6809
Printed Date: Jul 23 2019 at 7:54am
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Topic: New and Scared
Posted By: guygirl
Subject: New and Scared
Date 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.

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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.



Replies:
Posted By: Sharon Bruno
Date Posted: Jul 21 2010 at 8:33pm
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
 


Posted By: overwhelmed
Date 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-


Posted By: overwhelmed
Date 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. 

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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-


Posted By: overwhelmed
Date 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.


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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-


Posted By: overwhelmed
Date 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-


Posted By: dmwolf
Date 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.


Posted By: scared
Date 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.


Posted By: 123Donna
Date 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



Posted By: zoomommy2
Date 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


Posted By: 123Donna
Date 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 - 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 ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 1 ) ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 2 ) ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 12 ) ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 14 ), antimetastatic ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 3 ), and immunomodulatory ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 2 ) ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 4 ) effects. It may also play a role in reducing cardiovascular symptoms due to chronic hypertension, diabetes and obesity ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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 ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 5 ). The antitumor effect of WGE is comparable to other endocrine treatments in animal models ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 11 ). WGE also increased production of tumor necrosis factor and cytokines that are responsible for tumor cell death ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 6 ). Data from pilot studies indicate a beneficial role for WGE in patients with colorectal cancer ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 7 ) and in reducing treatment associated febrile neutropenia in pediatric cancer patients ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 8 ). It also prolonged survival of patients with melanoma when used with chemotherapy ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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 ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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 ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 6 ) involved in tumor cell death. It also demonstrated cytotoxic effects on human lymphoma cells by inducing apoptosis ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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 ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 4 ).

    Warnings

    WGE should be taken under medical supervision only. Diabetics should use this product with caution because of the high carbohydrate content.
    ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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.
    ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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.
    ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 10 ) ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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.
    ( http://www.mskcc.org/mskcc/html/69418.cfm#References - 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



    Posted By: Sharon Bruno
    Date 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


    Posted By: Sharon Bruno
    Date 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


    Posted By: Sharon Bruno
    Date 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


    Posted By: Sharon Bruno
    Date 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


    Posted By: bonsi77
    Date 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
     


    Posted By: scared
    Date 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.


    Posted By: rebecca lynn
    Date 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


    -------------
    rebecca
    stage 3 grade 3A
    Dx 12/08


    Posted By: Katastrophe
    Date 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


    Posted By: ksl122
    Date 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.


    Posted By: mamawof4
    Date Posted: Jul 26 2010 at 11:43am
    Rebecca,
    I live in the Cincinnati area and all of my treatments have been through Bethsda Hospital and my ong is Dr. Bechhold . A very nice doctor her office is close toReed Hartman. Good luck and God bless you.

    -------------
    dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+


    Posted By: rebecca lynn
    Date Posted: Jul 26 2010 at 11:55am
    Thank you so much....I will write that down so I have it when I move ..
     
    HUGS
    Rebecca


    -------------
    rebecca
    stage 3 grade 3A
    Dx 12/08


    Posted By: mamawof4
    Date Posted: Jul 26 2010 at 12:06pm
    My pleasure if you got any questions send me a personnal message and I can give you more details. How soon are you moving to town?

    -------------
    dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+


    Posted By: kaycee
    Date Posted: Jul 26 2010 at 12:41pm
    Hi Ellen,

    You and I are following an almost identical path. I'm 54, had my biopsy on May 18, and also was told that I would need radiation following lumpectomy, no chemo. I didn't learn of my triple negative status until I had my wire insertion and was being taken over to outpatient surgery for lumpectomy on May 25.

    I had not received my copy of the pathology report prior to surgery, and the nurse kindly stopped on our way over to outpatient and got me a copy. I had no idea what triple negative cancer was at that time, but from the careful way the nurse chose her words about the status, I realized it might be a worse cancer than I had thought. I was home from surgery by noon, and immediately started searching the internet. A little knowledge really can be a dangerous thing -- I spent the next few days in total terror. I really wish I would have consulted with an oncologist immediately following the biopsy. I also wish that I would have stumbled across this website in the beginning, because the ladies here are a font of wisdom and have helped me enormously in finding perspective on this disease.

    I don't want to minimize the seriousness of a TNBC diagnosis, but I believe that managing the fear of recurrence is important for living a quality life right here right now. This is the only life I have and I don't want to spend it in dread of what might happen later. I still have my moments where I get freaked out but at this point in my journey, I am finding it helpful to concentrate on the task at hand, which is getting through treatment and maximizing my chances to prevent recurrence, and am pretty much living in the moment rather than worrying about what comes next. I just keep repeating the mantra "Let Go and Let God". Somehow, it's working for me and I hope it will work for you too.

    Hugs,
    Kaycee




    -------------
    DX age 54, lumpectomy, IDC,10mm, 0/10 nodes, Stage 1 Grade 2, ER-/PR-/HER2neu-, Ki-67 74%, BRCA negative, TCx4, 6 weeks rads


    Posted By: guygirl
    Date Posted: Jul 26 2010 at 12:54pm
    It's been a couple of days since the port went in and it is starting not to feel so uncomfortable.  Had to go and have blood taken so that they would have a baseline before chemo.  They used the port and it worked ok, but it still hurt.  So now I am 7 days and counting til the start of chemo.  Did have a ray of light this past week.  I was driving to work and was having my own personal pity party (one of many) and all of the sudden the guardian angel that is on my sun visor fell right into my lap.  I took it as a sign that my mom was telling me to stop feeling sorry for myself and get myself together that it was all going to be all right.  My husband and I celebrated our 28th anniversary on Saturday.  I got my hair cut, colored and highlighted and he hated it, said it was too short.  I told him, you think it is short now, just wait a couple of weeks.  Anyway, thanks to all of you for you encouragement and kind words. 

    -------------
    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.


    Posted By: kirby
    Date Posted: Jul 26 2010 at 2:05pm
    great story guygirl.

    -------------
    kirby

    dx Feb. 2001. Age 44
    Lumpectomy

    2cm. no nodes stage 1 grade 3

    4 rnds AC, 35 rads


    Posted By: tnbcsucks
    Date Posted: Jul 26 2010 at 2:36pm
    overwhelmed....Hi, I also have had some bad headaches after my first two rounds of A/C...they seemed to disappear for rounds 3 and 4...not sure why.  My eyes have been the most irritating ofit all.  They seem to water a lot.  I did get some drops to help, and they do for the most part...just a pain, but I was told it was a side effect of the chemo...so I guess I live with it and move on...  Good Luck wiht your treatments.  I just finished my A/C and going to start my Taxol x12 on August 2nd.

    -------------
    TNBC DX April, 2010,Lumpectomy May 3.5cm with clear nodes,Stage 2, Grade III Started Chemo on June 7: 4 A/C every other week and then 12 weeks of Taxol. followed by 6 weeks of radiation.


    Posted By: Katastrophe
    Date Posted: Jul 26 2010 at 9:43pm
    Hi Guygirl, I know when I had my port put in it was shocking. I had to stay in hospital for the night. My blood pressure went so high they said I was bordering on a stroke. I complained for sooooooo long about it, and the docs all said is is unusual as most people have no probs with it. I personally think they dont listen to MOST people. I went to a Rheumatoid specialist about pain in my shoulder (the same side as the port, and hip pain). She gave me cortizone injections to both areas. The guys that did my ultrasound told me I had a rather large build up of fluid in my right shoulder in the same place he put the needle. You would not believe it, but after the initial couple of weeks settling time after the injection, I have had no problems with the port. The docs cannot explain to me why this is so! Maybe the operation to insert the port had caused the fluid build up in the first place, who knows. Certainly not the doctors.
    Overwhelmed .... I got some stuff from my chemist called "liquid tears", it did help with my eyes to some extent. gl luv Kat


    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: dmwolf
    Date Posted: Jul 26 2010 at 11:04pm
    Hey, Sharon.  How's it going?  Did you decide on a chemo protocol yet?
    Thinking of you,
    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.


    Posted By: trip2
    Date Posted: Jul 29 2010 at 10:27am
    Hello guygirl and welcome to our community,
     
    Be sure and check out our "chemo tips" in the TNBC News/Resource section.
     
    Also the Resource link near the top has some helpful information for you.
     
    This is a wonderful brochure about TNBC, the first ever published which came out the end of last year.
    http://www.lbbc.org/content/media/living-beyond-breast-cancer-s-guide-to-understanding-triple-negative-breast-cancer.asp - http://www.lbbc.org/content/media/living-beyond-breast-cancer-s-guide-to-understanding-triple-negative-breast-cancer.asp
     
    Congratulations on your anniversary!
     
    I think that you can do whatever you want with your hair.  Getting our hair done makes us feel better, a positive in a stressy situation.  Good for you, it sounds pretty. 
     
    There are links for headwear in the TNBC News/Resource section.  If you have trouble finding them let me know.
     
    Best wishes


    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: Carol (Tenn)
    Date Posted: Jul 29 2010 at 11:15am
    Welcome Guy/Girl, it's good to have you here. Not so good you have to be here but glad you found us. We are all in this together and give each other all the loving support we can muster.
    I do love your angel story and I know it that God does work in His own way. Please visit our Spiritual Support thread if that's something you might be interested in. It's just a clk away.
    Kaycee,
    I love that saying but being human it's the hardest thing to do for me but it's the best advice.
    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


    Posted By: staceydooley
    Date Posted: Jul 30 2010 at 12:51am
    Hi Sharon,
    I haven't been on the site for awhile. I just signed on and read your letter. The same thing happened to me, I had horrible pain in my breast.
    My Dr told me cancer does not hurt, but it seems TNBC does.
    Just wanted to say that.
    Take care.


    -------------
    http://www.youtube.com/watch?v=0Nvx7vFE2fs
    Stacey, 43 years, TNBC
    Double mastectomy 04-01-10
    BRCA 1, porto cath put in
    no nodes
    chemo to start June 3rd


    Posted By: staceydooley
    Date Posted: Jul 30 2010 at 1:01am
    sorry to hear about your headaches. I have them also. They say its the chemo.

    -------------
    http://www.youtube.com/watch?v=0Nvx7vFE2fs
    Stacey, 43 years, TNBC
    Double mastectomy 04-01-10
    BRCA 1, porto cath put in
    no nodes
    chemo to start June 3rd


    Posted By: staceydooley
    Date Posted: Jul 30 2010 at 1:03am
    just wanted to share my hair cutting video with you

    -------------
    http://www.youtube.com/watch?v=0Nvx7vFE2fs
    Stacey, 43 years, TNBC
    Double mastectomy 04-01-10
    BRCA 1, porto cath put in
    no nodes
    chemo to start June 3rd


    Posted By: tnbcsucks
    Date Posted: Jul 30 2010 at 11:37am
    not sure how scientific this is...but I  had a runny nose and sore throat when I was taking A/C...so my onc. said to take my claritin for it....I did...after I took that...I had no more headaches from the chemo treatments....not sure if it is related...but I'm not willing to give up the claritin if it is as those headaches sucked!!!

    -------------
    TNBC DX April, 2010,Lumpectomy May 3.5cm with clear nodes,Stage 2, Grade III Started Chemo on June 7: 4 A/C every other week and then 12 weeks of Taxol. followed by 6 weeks of radiation.


    Posted By: gobluegirl90
    Date Posted: Jul 31 2010 at 1:42am
    Welcome Guy/Girl,
    I too am a newbie and I can so remember that day I was told, it was CANCER!! As do we all, I rolled into a ball on my husbands lap and cried like a baby for 2 days and then set up took a shower and pulled myself together and got on the treatment train and I am going to hit this beat head on and know him off the of my train tracks.
    You will do the same thing.
    Your angel story game me goose bumps...God is very powerful, I am learning more so just how power full everyday.

    You have come to the right  place, the senior members are so full of helpful information and posting new information ASAP.

    My thoughts are prayer are with you,
    Jen


    -------------
    Age 38,Dx 4/8/10 IDC stage I, No Nodes, GradeIII, Brac I&II NEG lumpectomy, 2 nodes removed(neg)finished 4 AC& T on 10/1/10 33 Rads finished 10/2/10. Married 19yrs, 1 son 11yrs & 1 daughter 9yrs


    Posted By: SagePatientAdvocates
    Date Posted: Jul 31 2010 at 6:35am
    Dear staceydooley,

    you wrote-

    "My Dr told me cancer does not hurt, but it seems TNBC does."

    48 years ago a doctor told my mother...regarding her painful lump in her breast..."don't worry about it, cancer doesn't hurt." WRONG, she had cancer...but she walked around for one year, with her painful lump before she had surgery. Even the night before she was told "we will remove the lump but not to worry it is not cancerous, because cancer doesn't hurt." She woke up with her breast gone because they found cancer.

    6 years ago two physicians told my 36 years old cancer "don't worry about your tender lump. Cancer doesn't hurt." WRONG, again. This time she walked around for 3 months waiting for her lump to "go away" as the physicians suggested. But instead it grew, remained tender, and a needle biopsy showed TNBC.

    Yes, sometimes breast cancer (and other cancers) don't hurt...maybe even most of the time, but sometimes cancer does hurt. Isn't it about time that a required course is given (perhaps a one hour seminar) in med school about how cancer can hurt with videos of men and women saying "my cancer hurt" and at the end of the seminar there is one question "can cancer hurt some of the times?" and if the medical student answers "no" he is thrown out of school and if s/he answers "yes" there is a short essay requirement..please explain your answer so if that is left blank and the "yes" was just a lucky guess that student can't become a doctor either..Smile..but this topic is not funny, huh?

    I am really disgusted to read that physicians keep repeating inaccurate information to their patients, at times putting the patients lives at risk...Surely the medical schools can do a better job!!!!

    Stacey, sorry you were given misinformation. Good luck to you!!!!!

    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


    Posted By: trip2
    Date Posted: Jul 31 2010 at 1:03pm
    The only good lump is one in a jar.
     
    Unfortunately we have to take the reins and tell docs we want the lump out and tested.  Alot of women have posted here saying their lump hurt.  It's obvious this happens.  I too get disgusted at some of the advice women are given just like I was given wrong information when I was diagnosed.  It has to stop.
    We are our best advocate!


    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: guygirl
    Date Posted: Aug 02 2010 at 7:29am
    Getting ready to leave for my first chemo.  My sister is going with me.  I am very emotional this morning and just want this to all be over with.  Thank you all for being here and sharing your knowledge and experiences.  Hugs to you all.


    -------------
    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.


    Posted By: Carol (Tenn)
    Date Posted: Aug 02 2010 at 11:11am
    Good morning everyone...
    Guy/Girl...I hope you had a good day...it's really a very doable thing and you will get through it just fine in spite of the emotions. I was excited to get started, I thought I'm finally going to get to DO something. So hang in there...we are here to support you through the whole process.
    The disturbing part of this forum is the number of young women who have to deal with this. Women in their thirties and forties ought to be concerned with raising children and having a good time doing it, not fighting this awful disease.
    But hey, here we are and we are strong....we are women, watch us roar...LOL..now I'm getting silly...
     
    My prayers are with each and everyone of you. Young and not so young.
    If you would like to join us on the Spiritual Support thread as well as all the other threads, we're just a clk away.
    Love and Prayers,
    Carol  Heart


    -------------
    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


    Posted By: zoomommy2
    Date Posted: Aug 02 2010 at 1:04pm
    Hi guygirl,
    I hope that the leadup to the chemo was a bigger deal than the actual chemo.  It usually works that way.  Like Carol, I was anxious to DO something to kill the beast in my body.  Nurses were explaining on the first day how much the copay would be for various drugs.  I mistook what was said to mean that my copay for Neupogen was going to be $5000/month.  I burst into tears, saying I didn't have that kind of money!  The Social Worker came over to comfort me, but by that time I'd had my mistaken figures corrected and was fine.  But I got my little cry over and done with.  My DD AC went smoothly, but really kicked my butt.  I figured the worse I felt, the more of the buggers were getting killed.  Not necessarily true, but it kept me going.
    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


    Posted By: Lillie
    Date Posted: Aug 02 2010 at 1:17pm
    Hi guygirl,

    Best Wishes for a good day today. I also hope you get along well with any after treatment symptoms.

    The nurses told me on my first day of chemo that for the first couple of hours I sat there like a "deer in the headlights". I probably did because I was scared. I soon learned I was in good hands and relaxed.


    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


    Posted By: CiGi
    Date Posted: Aug 02 2010 at 1:36pm
    Hi Guygirl - good luck today.  Hope it all goes well for you today.  Get your rest, eat what you can, ask questions - everyone here on this site is very helpful.
     
    Pam - I love how you put the 'only good lump is one in a jar'. 
     
    Steve - I was also told not to be concerned about my lump because it hurt and it felt like a cyst.  The mam made it hurt even more.  I had two lumps, one close to the surface and one much lower.  The one closer to the surface they thought was a cyst and the one lower they were more concerned about cancer.  After biopsy - the one close to surface was cancer and the lower one was a cyst; they removed both.
     
     


    -------------
    Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.


    Posted By: guygirl
    Date Posted: Aug 02 2010 at 5:24pm
    Chemo went well, the time passed pretty quick.  Had a great lunch afterwards and not just feeling water logged.  I am drinking as much water as i can to flush me out.  Waiting on son's girlfriend to drop by she is bringing me something.  I get the shot tomorrow.  So all you folks who have been here before me, what next, if I feel good now will I be ok tomorrow.    I get the nuelesta shot tomorrow and I heard that is what will give me flu like symptoms.  Can't wait.  Bring it on! 

    -------------
    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.


    Posted By: 123Donna
    Date Posted: Aug 02 2010 at 5:39pm
    Guygirl,

    I found the side effects started 2 to 3 days after chemo.  For the Neulasta shot, try taking Claritin (just Claritin, not D).  It helps with the side effects. 

    Hope the side effects are minimal and you sail through the tx.  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



    Posted By: Scott
    Date Posted: Aug 02 2010 at 5:53pm
    Take one claritin today, tomorrow, and then the two days following the shot.


    Posted By: guygirl
    Date Posted: Aug 02 2010 at 5:57pm
    Thanks, will do.

    -------------
    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.


    Posted By: guygirl
    Date Posted: Aug 04 2010 at 11:52am

    Had the shot yesterday, woke up with a headache, but otherwise feeling ok.

     
    Thanks for all the prayers and support


    -------------
    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.


    Posted By: Katastrophe
    Date Posted: Aug 04 2010 at 12:06pm

    Hi guys and gals, I suffered mercilessly after treatment. It surprises me when I read that someone went off and had lunch. I couldnt even think of food. Between the mouth ulcers and the metalic taste in my mouth, the vomitting, nausea and diarrhoea (which I could barely hold back till I got home). I was pretty crappy the first week... less crappy the second week... and just coming out of crapville in the third week. Even the Avastin alone plays havoc with me for at least a week and a bit.

    Now if I go on Lee's theory ... I have been crappy for the best part of a year ...so... I should have kicked this cancers butt!!!

    You could make a fortune Lee if your theory works out. Just remember the little people on your way up. I'd like a new dress with boobs please?

    catcha luv Kat


    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: Carol (Tenn)
    Date Posted: Aug 04 2010 at 12:31pm
    It so strange how everyone is so different...
    I only had low wbc twice...they stayed up pretty much on their own. I did have to have Neulasta
    shot twice and I had no side effects. Kept waiting for them but nothing...


    -------------
    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


    Posted By: zoomommy2
    Date Posted: Aug 04 2010 at 12:47pm
    Kat,
    If I make a fortune on my theory, I'll buy you lots of dresses with boobs!  Since I haven't made my fortune yet, I doubt it's coming my way!  BTW, I was crappy from October 09 til February 10.  Nothing but diarrhea, but I just accepted it as part of the deal to cure me.  You are ahead of me!
    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


    Posted By: TNBC_in_NS
    Date Posted: Aug 04 2010 at 1:32pm
    Oh Guygirl, I was the same as you! First week was really down, second beginning to come around, third week not too bad and then back for more of the "devil poison".... I had to give myself Neupogen injections for five days after chemo my WBC bottomed out big time.  Chemo was postponed twice and had allergic reactions to Taxotere almost took heart attack, my throat closed off and the nurses were flying back over to me.  They were great!  Couldn't walk a straight line so looked like I was drunk leaving .....funny Carol we are all so different but yet so much the same. 
    Zoomommy2 I was so sick from this stuff and burned so bad from the radiation I just wanted to die.. but the BIG GUY said "Not your time" so here I am today just getting my new life and new thoughts together and wondering what will I be when I grow up???
     
    Hope you all have a good day and your side affects are behaving themselves, but we do want to kick _ss so heads up ladies the race is on.   Your sister on a new journey, Love ya's Helen in NS


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: zoomommy2
    Date Posted: Aug 04 2010 at 1:39pm
    Helen,
    I was fortunate to not need radiation.  If the beast returns that may be in my future.  For most of us, chemo is just for a little while.  For others, it's not such a little amount of time.  It never feels like we are in it for a short time while it's going on.  I remember when I had finished 7 rounds of Taxol and had 5 more to go.  I didn't realize at the time, my misery was from my gall bladder and not related to the Taxol at all.  I didn't know if I could go 5 more weeks on it.  Then the gall bladder surgery ended those 5 weeks.  What I wouldn't have given to be able to finish those 5!
    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


    Posted By: CiGi
    Date Posted: Aug 04 2010 at 1:54pm
    My first day of treatment isn't bad, a little tired from the Benadryl.  I go out and eat as much as I can.  The second day I get the shot and my bones hurt, all of them through the night.  The third through about 8th day, I have no appetite, feel really crappy, not sick not well, just BLAH.  Really constipated, like rocks!!!  No taste (especially salt - my favorite one), kinda tired, my brain easily distracted, stomach just unsettled - not really nauseous.  I don't feel sick enough to stay in bed but not well enough to get something done.  Each round the BLAH feels a little worse.  This round my feet felt a little tinglely, hoping that doesn't get worse.  I'm half way done, so hopefully it doesn't get too bad.  August 18 is the next round.  Everyone has some similar and different side effects, but if we all talk about them, we know what to expect if any.

    -------------
    Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.


    Posted By: TNBC_in_NS
    Date Posted: Aug 04 2010 at 3:58pm
    Oh Lee, I can't imagine having gall bladder surgery on chemo??? I had mine out when I was 20 years old and thought I would die....sick, sick, sick.  It is a dirty surgery and my incision where the drain was did not want to heal.  I was cut from the middle of my breastbone to nearly the side of my right hip (they did an exploratory, they said) sh*t they should have taken everything else out while they were at it, but I wouldn't have had my son the next year so I guess I did ok.... I hope you are feeling better now girl.  Don't worry about not having the other five doses, if the first batch don't work, nothing will....the surgery was more important at that time.  And yes, you can have radiation if needed. 
     
    CiGi:  So glad your treatment went well.  Get some rest and go with the flow for now.  I have peripheral neuropathy in my hands and feet now from the chemo but it is manageable.  Watch for your temperature.  If you have a thermometer take your temp if you feel warm and don't let your fever rise higher than 100.  If it does go to Emergency Dept for treatment of Neutrapenia.   As for the constipation, get some stool softeners - Collace or something like that to keep your stool soft. Drink lots of water, juice, etc. to keep hydrated.  The Decadron and Benedryl cause the constipation and dry your body right out. Eat lots of fresh fruit too.  Push the soft foods to ya, yogurt and jello, ice cream, etc.  Keep your strength up.  I know the taste buds go when you are taking all this medication, but push yourself to keep your vitamins up too.  Also, have your Vitamin D levels checked at your next blood work.  If it is down then get the Vitamin D3 and take that every day.  It is another saving grace that is now the top item to remain cancer free... Just some stuff to think about.  Hang in there girl, this too shall pass.  Hugs,


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: staceydooley
    Date Posted: Aug 04 2010 at 4:03pm
    Lee, I am so sorry to hear about your gall bladder surgery. Just hang in there. This is a tough time we are going through. But we are going through it. meaning, we will get through it.  

    -------------
    http://www.youtube.com/watch?v=0Nvx7vFE2fs
    Stacey, 43 years, TNBC
    Double mastectomy 04-01-10
    BRCA 1, porto cath put in
    no nodes
    chemo to start June 3rd


    Posted By: zoomommy2
    Date Posted: Aug 04 2010 at 5:11pm
    Stacey and Helen,
    My surgery was back in January and yes, I had chemo the week before and was scheduled for it the day I was sent to the ER instead of getting chemo.  I wanted them to give me the chemo and then let me go to the ER!  I'm glad they didn't listen to me!  I had to have the old fashioned long incision because I had a major infection in there along with a huge stone that destroyed the bile duct.  That was the end of my chemo, but I didn't know it at the time.  I just wanted back on chemo to finish up.  I actually healed pretty quickly, but not fast enough to resume chemo.  It's definitely not the thing to do!   If the beast comes back I'll always wonder if not getting those last 5 Taxol was the cause.  I'm fine now.  Once the effects of the Taxol wore off I was tap dancing!
    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


    Posted By: Katastrophe
    Date Posted: Aug 04 2010 at 9:08pm

    licorice licorice licorice = soft poo's also shove as much vasolene up yer butt as you can before you go. Or prune juice ( I personally think prunes are disgusting, but thats me)

    I had my gall bladder done when I was in my late 20's. It was one of the worst surgeries and most painful experiences that I have had. And I have had plenty... Vaginal reconstruction, Caesarean, tubal ligation, hysterectomy, oopherectomy, sphincterectomy, lumpectomy ( I am the Ectomy queen) mortons neuroma's, bladder lift (twice), bowel lift (twice) as well as the gall bladder, not to mention laparoscopies galore. I jokingly told my surgeon after my last op, that there was nothing left to take now except vital organs (wont he be surprised if I turn up next without breasts) I wasn't counting on that.

    I even spent 7 months in hospital carrying my son to term, because I could not stop bleeding.
    It's good to be me!!!  NOT...
     
    Lee: I like maxi dresses, flowy, and I am fairly tall. I like to wear flat shoes too, so something casual . Wink
     
    One day at a time CiGi... luv Kat


    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: zoomommy2
    Date Posted: Aug 04 2010 at 9:48pm
    Kat,
    I wrote up your order just now, pending the arrival of my fortune!
    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


    Posted By: trip2
    Date Posted: Aug 06 2010 at 2:21pm
    You ladies amaze me with your stories, thanks for sharing.
     
    Lee, me too, I want to get on the same list as Kat.Wink


    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: zoomommy2
    Date Posted: Aug 06 2010 at 3:27pm
    Pam and Kat,
    If we can't find humor along the way what a sad and scary place we'd be in!
    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


    Posted By: trip2
    Date Posted: Aug 06 2010 at 7:55pm
    I ditto your comment Lee!

    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: Katastrophe
    Date Posted: Aug 08 2010 at 6:30am
    My god I want to rip my nose off today its been so bloody sore. I made matters worse by bleaching my hair and I think I was in pain to my brain. On the positive side I feel great today. Had such a relaxing fun day. Did nothing, but had a lovely lunch at my sister in laws house next door. We chatted listened to music and made plans for the wedding and christmas and our holiday. We even had a couple of mother teresa's nuns come and visit, and finished up the day with prayers (man this is not a usual occurance for me), they were fabulous. Great day!!! (except for the sore snozz)
     
    Hope your all well .... Luv Kat


    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: trip2
    Date Posted: Aug 08 2010 at 5:20pm
    Hi Kat,
     
    So how's the snozz, any better?  You've had quite the day from having a sore nose to ending your day saying prayers with two nuns.  Sounds like a good one!


    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: Katastrophe
    Date Posted: Aug 10 2010 at 10:44am
    My nose is always sore Pammy, just more on some days than others I guess. Sometimes its good to shout and whine about it on occassions. It seems to ease the pain of it I think Clown just have to smile through it. luv Kat

    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: guygirl
    Date Posted: Aug 10 2010 at 10:55am
    1st chemo was last Monday, thought I had avoided most of the side effects and today my mouth is sore.  I have been using Biotene mouthwash and toothpaste and have been rinsing with water/baking soda and salt all week.  This morning I have an ulcer and my mouth is really tender.  Anyone have any other suggestions what to try.


    -------------
    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.


    Posted By: Tamala
    Date Posted: Aug 10 2010 at 11:28am
    Hi, my name is Tammy.  I am 50 years old and was diangosed TN on May 14, 2010.  I recently completed 4 rounds of AC and had very good results.  My 4 cm tumor appears to have completely melted away after the 3rd treatment.  My oncologist said that of course he can't feel on a microscopic basis, and that he will know for sure when I have my surgery, but he said if this was the first time he had examined me, he would tell me I was fine and send me home. 
     
    After my AC treatments I contracted a virus that knocked me down with a fever for 12 days, so I missed starting my Taxol treatments on schedule.  I finally started those treatments and have 2 under my belt--10 more to go!  So far, so good.  No adverse side effects. 
     
    One question I have is that when I could see and feel my tumor I had no pain, but now that it's gone I do have some slight pain in my breast where it used to be and also in my nipple.  I asked my Dr. about it and he said that he has heard the same from other women but he doesn't really know why.  He said he thinks it may just be dying tissue.  Has anyone else noticed this and is it something to be concerned about (as if we're all not already concerned enough!)?
     
    Thanks,
     
    Tammy


    -------------
    dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
    11/16/12 check-up NED


    Posted By: overwhelmed
    Date Posted: Aug 10 2010 at 11:53am
    guygirl,
    I had mouth sores during my first treatment and was sure I would have them every time, but I haven't the last two.  Who know is this is the reason, but it worth a try.  I suck on ice while I am getting the chemo drugs (in my case the Taxotere and the Cytoxin).  As those drugs are going in I suck on ice and drink ice water.  Supposedly it keeps the chemo drugs from your mouth.  I don't know if it's true but I'll continue to suck on ice as long as I think it works.  The other think I do is rinse my mouth several times a day from the very beginning with Mugard (I believe it's a new mouthwash.  It was a sample given to me by the chemo nurse).  I start rinsing the night of the chemo and continue for close to a week.  I am also careful to stay away from anything acidic or anthing that can tear up my mouth.  It has worked for me.  BTW, I also use the Biotene because the other toothpastes are too strong.
     
    I hope things go better next time.  I found the mouth issues to be the thing I was most afraid of because they lasted the longest and once I had them not much helped.  The routine I use seems to have helped.  My mouth is tender, but no sores at all (knock on wood).  Good luck.
     
     


    -------------
    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-


    Posted By: Lillie
    Date Posted: Aug 10 2010 at 12:17pm
    Hi Tammy,

    I am so happy for you that the tumor melted away with the AC. Also, the doctor's statement about now being able to feel the tumor at all. That is a good sign also. I do not know what to say about the feelings you are having since starting Taxol. I had a mastectomy first and then the chemo. I can say that there are strange sensations, pains and discomfort that will be a part of your life for a time. I am a 4 year survivor and I experience odd sensations still....

    Someone will be along shortly who has experienced exactly what you are going through. I hope it will bring you some peace of mind.

    You are on a good site for sharing, information, venting, laughter and spiritual strength.

    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


    Posted By: Tamala
    Date Posted: Aug 10 2010 at 2:27pm

    Thanks, Lillie,

    You're right, this is a good site and has already helped me a lot.  I tend to be very negative about breast cancer as I lost both my grandmother and mother to it (mom was only 46).  I don't know if they were TN or not.  When I got my diagnosis, I definitely took it as a death sentence.  Now, since I have found this site, I see that that is not the case and there is hope for us. 


    -------------
    dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
    11/16/12 check-up NED


    Posted By: Lillie
    Date Posted: Aug 10 2010 at 2:58pm
    Hi again Tammy,
    All of us approach life situations from different directions. I am so sorry about your mother and grandmother. I did not have that experience, but if I had I'm sure I would feel exactly as you did. The fear is bad enough without having lost relatives to the disease.

    You and I are both Stage IIB and the fact that you are negative for the BRCA gene is a good thing. Our treatment regimen is similar except I had my taxol in 4 treatments and yours is spread out over 12 weeks. It worked well for me and I pray the same for you. I am celebrating 4 years NED as of last Thursday. NED (No Evidence of Disease) Good News!

    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


    Posted By: Tamala
    Date Posted: Aug 10 2010 at 4:07pm
    Lillie,
     
    Congratulations on 4 years NED (I wondered what that stood for).  That is great news!  I am glad to hear that your treatment worked so well. 
     
    I was very relieved to be BRCA neg. as I have a 23-year-old daughter I don't want to pass any bad genes on to.  I must admit I was surprised though.  I just assumed that since both my grandmother and mother had breast cancer that I must have the gene.   Do you know if not carrying the gene is also good as far as treatment and survival rates, or does it make any difference?  Also is Stage IIb bad?  I am really confused so far about my diagnosis and trying to figure out where I stand.  I'm not sure yet if there are any nodes involved. 
     
    Thanks for your response, Lillie.  It's nice to talk with others with similar experience--especially when they are doing so well!
     
    Tammy
     


    -------------
    dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
    11/16/12 check-up NED


    Posted By: Lillie
    Date Posted: Aug 10 2010 at 4:40pm
    Tammy,
    Being BRCA negative is a very good thing. It can be the difference in developing cancer in the other breast or passing it onto a child. Also the staging is established by certain criteria. I am IIB because (2cm tumor + 1 positive lymph node + triple negative = IIB). In your situation I am presuming (4cm + triple negative = IIB). The size of the tumor when treatment begins or the involvement of lymph nodes are factored into the staging equation.   Chemotherapy works very well (but not always) on most triple negative tumors, which is in our favor. If your tumor is essentially gone I would say it is working well for you.

    Stage IIB, as it was explained by my oncologist does not tell the whole story. It really depends on how well we respond to chemo. Also are you planning a mastectomy or lumpectomy? I chose the mastectomy because I wanted the whole breast off. I did not have radiation. My oncologist did not feel it was necessary for me. Other oncologist seem to most always recommend it. I was told that my tumor was not near the chest wall consequently no radiation. So you see, there are so many variables that it is not a one size fits all disease.

    Good luck with everything.

    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


    Posted By: TNBC_in_NS
    Date Posted: Aug 10 2010 at 6:52pm
    Hi Guygirl:
    I am so sorry you are experiencing a sore mouth...That is so miserable. 
     
    I just used the baking soda to brush with as well as gargle. It worked for me.  Also, Oragel that we use for babies when they are teething.  It will keep your mouth cool.  Also, drink as much water as you can get into you.  I also drank lots of water during infusion of chemo too!  That is so important to keep hydrated and keep your mouth clear of the chemo. 
     
    Try this and see how it works for you.  I will be thinking of you and praying that the sores are healed soon.  Your sister on a new journey, Helen in NS


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: TNBC_in_NS
    Date Posted: Aug 10 2010 at 6:58pm
    Tammy:
    It sounds like the chemo is working for you! Yeahhh!!! I am so glad to hear that!
    The surgery will get anything that is left behind, if anything, and then you will be fit as a fiddle.....Chemo is our first and best source of getting rid of this type of cancer, so if it working for you and that is great!  Keep up the good fight and keep us posted.
    Your sister on a new journey, Helen in NS


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: Genie
    Date Posted: Aug 10 2010 at 7:26pm
    Tammy, I am also BRCA-. However, I am the 3rd in my family with TN (my sister and my sister's youngest daughter are also TN). My sister and I both had the BRCA test and both came up negative. My onc stated that even though we are both negative, with 3 of us having TN there may still be a genetic connection that has not been discovered yet. She said that research is still discovering other links other than BRCA. So it helps for other family members to be vigilant about regular exams.

    -------------
    DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
    KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC


    Posted By: mom1030
    Date Posted: Aug 10 2010 at 7:41pm
    Hi Everyone, My name is Maureen 54 years old and was diagnosed in May 2010 with Invasive Ductual Carcenoma of the right breast.  I was also diagnosed as Triple Negative.  I am stage 3 with 1 lymph node involved that they are aware of.  My onocologist is doing Chemo 1st.  I have just finished the 1st half of my chemo and will be starting my 2nd phase August 23rd.  I will be taking Adriamycian Cytoxan.  I am scheduled for a double mastecomy in December followed by 5 weeks of Radiation.  I am Terrified, I feel like I have been handed a death sentence. I am trying to remain positive, i am doing Rieke and will also be doing hypnosis to help with the stress.  I would like to hear from individuals on how they are doing after all the treatment is done.  I am the 1st in my family to be diagnosed with breast cancer.  I would greatly appreciate hearing from people.  Thanks


    Posted By: Lillie
    Date Posted: Aug 10 2010 at 8:28pm
    Hi Maureen,
    I'm glad you found the TNBC site. I am sorry there was a need to find us, but hopefully we can help put some of your fears to rest. I was also the 1st in my family to be diagnosed with breast cancer. I, like you, was terrified and as time went by and all the reports were in it just seemed to get worse each time I met with the surgeon or oncologist. I didn't know about the TNBC site until about a year ago, so I really felt like NOBODY understood my situation (triple negative).

    As you go through your treatments and realize the tumor is shrinking and all the cancer cells in your body (if any) are dying. Then you have your surgery and you know that anything that may have been left behind will be gone and for extra insurance you have radiation. I'm not saying it is easy, but it is doable and there are lots of us here on this site ready and willing to help you along your journey.

    I gather your tumor was large since you got chemo first. But that way you are aware that it is shrinking the tumor. In hind site I wish my treatments had been first so I could have know that the chemo was shrinking my tumor.

    Please share with us and let us be 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


    Posted By: Katastrophe
    Date Posted: Aug 10 2010 at 9:02pm
    Hi Tammy and Maureen, welcome to the site nobody wants to be at.
    Its like being invited into a really sucky club, that everyone wants to avoid being in, but finding out when you get there .... wow these guys are just like NORMAL PEOPLE only better (but in a diseased form (haha) Btw... you will find as you read back at our previous posts, we all have rather strange ways at dealing with our circumstances (mine happens to be with humour) We all know it sucks to be in our shoes, but on here you have the best support you could imagine. It is informative, consoling, theraputic and funny. We all have such a varied range of stories to tell, and our treatment patterns can be very different from each other inspite of the fact we are all TN.
    We are like the extended part of your family, that you can lean on when times are tough, and when we tell you we know how you are feeling we do... you can vent and cry and dummy spit at will... we will cheer you on.
    The best advice I can tell you is take one day at a time and look towards your main goal ... which is total eradication of that THING that has taken over your life. Remember .. for every horrible treatment you have to endure ... its one step closer to slaying the BEAST that lurks within.
     
    I forgot to mention - I am also very Melodramatic Wink
     
    Lillie, I was just thinking (it happens in spurts) .. Why doesnt someone add like a topic or section in here explaining all the ... "what does this mean" for instance .... BRCA- BRCA+ NED TNBC IDC etc... so that people new to the site and new to the cancer can figure out what the hell we are talking about in here sometimes. Even down to the varying types of chemo trial drugs people are taking ... staging and grading of cancers etc. Almost a kind of an idiots guide to Triple Neg .... Or it could be called ... Triple Neg for Dummy's .... kinda has a computeristic ring to it (god now im off on one of my tangents again... (I did warn you Tammy and Maureen)
     
    Well thats my input for the day ... Gl GuyGirl, Tammy and Maureen, keep fighting the good fight
    luv Kat xxx
     


    -------------
    Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.


    Posted By: TNBC_in_NS
    Date Posted: Aug 10 2010 at 9:13pm
    Hi Maureen:
     
    So sorry you had to find us but so glad we can be here for ya!
     
    I am so glad they are doing chemo first! I wish they had done mine first.  With chemo first we know if the meds are working by shrinking the tumor and then they do the surgery, then radiation for insurance.  You will be fine.  I had the Cyclophosphamide (4) and Taxotere (4) every three weeks.  It was hard but there is light at the end of the tunnel...
     
    I too am the first with BC in my family.  I am waiting for genetic testing to come back around 20th of August to find out if I am BRCA 1 or 2.  You haven't posted where you are from and where you take your treatments.  Sometimes, we find others in or near the same town and it is good to get together to discuss and vent about the events of the week with someone who gets it. 
    Take good care of yourself and keep us posted of your journey.
    Bless you, your sister on a new journey, Helen in NS


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: kirby
    Date Posted: Aug 11 2010 at 2:07am
    Hi Maureen,
     
    My stats are listed below. I always considered myself stage 1 but I see some with the same size tumor consider it stage 2. I was dx before they knew what TN was and chemo protocol was different then. I had only 1/2 the chemo they now give, no port, no nuelasta or steroids. Surgery first. This was also before dose dense. I just wanted you to know I am alive and well and almost 10 years out . I was dx at age 44.
     
    They know so much more about TN now and the treatment it most benefits from.


    -------------
    kirby

    dx Feb. 2001. Age 44
    Lumpectomy

    2cm. no nodes stage 1 grade 3

    4 rnds AC, 35 rads


    Posted By: zoomommy2
    Date Posted: Aug 11 2010 at 2:10pm
    Maureen,
    It's great that you are BRCA -.  I'm the first in my family to have BC, but not the first with cancer of other types.  I was 64 at diagnosis and my oncologist said it would have shown up by now if I was BRCA 1 or 2 +, so the testing wasn't done.  I wish it was done since there are lots of granddaughters and a sister and a niece in my family.  They all know to have mammograms early and do self exams.  This TN can grow so fast you could miss it if doing exams just periodically.  Mine went from nothing to 3cm in a month's time.  Chemo is usually very effective in our type of breast cancer.  Good luck with your treatment.
    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


    Posted By: mom1030
    Date Posted: Aug 11 2010 at 11:22pm
    I want to thank everyone who answered my post.  I am in WI just outside Milwaukee.  I am getting my treatment at Froedtert & Medical College of WI.  I am scheduled for an MRI 8-20-2010, I am in a study for TN but I am just getting the gold treatment nothing else.  I will let all know how it goes.  Can someone please explain what all the notes on the bottom mean ? I don't understand some of the information.


    Posted By: guygirl
    Date Posted: Aug 24 2010 at 12:55pm
    The notes on the bottom of the page is our diagnosis.  You list the date, the stage, the grade, what type of surgery you had and the type of treatment you are receiving.  You have to type this into your profile.

    -------------
    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.


    Posted By: 123Donna
    Date Posted: Aug 24 2010 at 8:09pm
    mom1030,

    To create your signature so that it shows up at the bottom of your posts, go to the upper left corner of the screen until you see "Member Control Panel".  Click on it and go to Edit Profile, scroll down until you see Signature.  Inside the box, type the information you want to appear and scroll down to the bottom to Save your changes. 

    Keep us posted on how you're doing.

    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



    Posted By: TNBC_in_NS
    Date Posted: Aug 24 2010 at 11:39pm
    Thanks for posting your good results Kirby!!!!  That is fabulous!!!
    I am so happy to see how long you have been "clear"!!!
    I am not sure I will be able to say that but I sure hope so.
    Your sister on the journey,
    Helen in NS


    -------------
    Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


    Posted By: 123Donna
    Date Posted: Aug 24 2010 at 11:50pm
    Helen,

    I just noticed your signature.  You found a new lump?  Is it the same breast?  When is your ultrasound/mammo?  I'm worried. ..

    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



    Posted By: guygirl
    Date Posted: Nov 24 2010 at 2:30pm
    Hi all, just want to touch base and let you folks know that I am about to begin the 2nd part of my treatment.  I finished chemo on Nov 8 and will begin my radiation on Nov 30.  Can't wait for it to all be over with.  Had very few side effects from chemo, hope I do as well with the rads.
     
    Thanks to everyone for all their support and prayers.  I pray for each of you every day.


    -------------
    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.


    Posted By: Carol (Tenn)
    Date Posted: Nov 24 2010 at 2:44pm
    Hello guygirl,
     
    Rads are a breeze...you will be fine...might have some redness but there are creams that will take care of that.
    Please join us on the Spiritual Support thread when you have time.
    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


    Posted By: 123Donna
    Date Posted: Nov 24 2010 at 3:03pm
    Guygirl,

    I posted an article a while back where they said Melatonin cream helps with the radiation burns.  Good luck to 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



    Posted By: zoomommy2
    Date Posted: Nov 24 2010 at 3:55pm
    Guygirl,
    Congratulations on finishing the chemo with such few bad side effects!  I haven't had radiation so can't tell you anything from experience.  Wishing you an easy time with it, too!
    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


    Posted By: CiGi
    Date Posted: Nov 26 2010 at 6:02pm
    Congrats Guygirl!  Radiation hasn't been bad so far.  Gone through # 4 today.  Much much better than chemo.  Good luck and keep us posted.  Let us know if you get tatoo'd or sharpee'd :) 

    -------------
    Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.


    Posted By: scared
    Date Posted: Nov 26 2010 at 10:24pm
    Sorry for the run around you experienced but it sounds like you are on the right track as you are going through treatment.  I like that you got a second opinion from an oncologist and then took all that information to yet another clinic.

    You are the best person to determine which direction to rid yourself of the disease.  I like what you told your neighbor and that is what must do because there is a lot of b. s. out there and even though they are attempting help, they could be actually hurting your chance of surviving it.

    How we coped:

    There must have been angels guiding our treatment because we ended up with a great oncologist that specialized in breast cancer and is highly rated in our area.  With her the anchor of our team we got a good breast surgeon, radiation oncologist, and Naturopathic doctor.

    It is vital as you see from having two doctors disagree on exactly what you have to come to an agreement so that you have the information you must have in order to get through it.

    I am sorry for your situation, but I am glad you found a home here.  We are over two years out and I just want you to know that it is a long process, but you will get over it too.

    Welcome aboard, people here are great!

    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.


    Posted By: guygirl
    Date Posted: Dec 20 2010 at 1:13pm

    Checking back in.  Have had 14 rads and am doing well.  No burning yet.  Will only get 4 this week and next due to the holidays.  Should finish up around the 18th of January.  My eylashes are gone and my eyebrows are almost non-existent.  My hair is coming back in and it is soft and fine like a baby's.  Be glad when life returns to normal.   I thank God every day I found this site and I pray for you all every day.  Merry Christmas.



    -------------
    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.


    Posted By: overwhelmed
    Date Posted: Dec 20 2010 at 1:26pm
    Guygirl,
    You are where I was right after Thanksgiving.  I have had some skin issues which started about 1/2 way through, but nothing terrible.  I am three away from being done!  Three weeks ago I had no eyebrows or lashes, but one day I looked and the eyebrows were there again.  Like my hair, they are coming in a bit wild.  The lashes are slower to return, but they are there too.  My hair has been much slower to come in than I thought it would be.  It's soft and fuzzy with a slight curl (and is very gray).  I had a dream last night that I decided to dye what I did have so that it could be seen. 
     
    Good luck to you.
     
    Lori


    -------------
    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-


    Posted By: trip2
    Date Posted: Dec 20 2010 at 2:46pm
    Guygirl you are almost done!  Happy holidays to you and your family..

    -------------
    Stage 2 2003
    Stage 1 2007
    BRCA 1+


    Posted By: guygirl
    Date Posted: Jan 05 2011 at 7:09pm
    # 25 radiation tomorrow and then I will have 8 boosts.  Am very pink and tender today, plan to stay home from work Thursday and Friday so that I don't have to wear anything irritating.  Be glad when this is all behind me.  I have been using Jean's cream at night and ALRA cream during the day.  I tried a cream called recovery cream, but it gave me a rash.  Sitting here in one of my hubby's big soft t-shirts.  Stay strong ladies, together we will prevail.

    -------------
    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.


    Posted By: overwhelmed
    Date Posted: Jan 05 2011 at 7:16pm
    guygirl,
    I finished just two weeks ago, and I feel so much better.  Hang in there.  I still have some skin that breaks open if I'm not careful, but the swelling has gone down, and I hardly notice it at all.  Good idea to stay home and wear loose clothing.  I know that the best medicine was having nothing rub against my skin.
     
    Radiation suprised me.  I thought it would be a piece of cake (and compared to chemo it was).  While it was going on, it got me down.  But, now that I am just a few weeks past it, it seems like it was no big deal.
     
    Hang in there.  Once they stop zapping you every day, your skin will have a chance to heal. 
     
    Lori
     
    PS  Aquaphor was recommended by the rad techs.  It helped protect the open skin.  Also they let me use cortisone cream for the itch.  It helped too. 


    -------------
    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-


    Posted By: snugltz
    Date Posted: Jan 05 2011 at 11:42pm
    My doc also had my use aquaphor for the worst spots.  But what actually helped me was aloe.  My hubby bought an aloe plant when I was diagnosed and planted it in the yard.  He would cut a fresh part  for me every other day.  It worked really really well.  Much better thn the aloe in a bottle, or the different creams and lotions and such they gave me at the doctor.

    -------------
    1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X


    Posted By: hhhh
    Date Posted: Jan 06 2011 at 2:47am
    Originally posted by snugltz snugltz wrote:

    My doc also had my use aquaphor for the worst spots.  But what actually helped me was aloe.  My hubby bought an aloe plant when I was diagnosed and planted it in the yard.  He would cut a fresh part  for me every other day.  It worked really really well.  Much better thn the aloe in a bottle, or the different creams and lotions and such they gave me at the doctor.

    how cute Big smile...he sounds incredibly supportive.


    -------------
    Daughter of one of the most amazing women in the world...

    she was diagnosed 8/2010, had lumpectomy, TAC X 6, rads.

    52 yrs, stage 2A (3cm, no nodes), triple neg, grade 3



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