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sibu View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2009 at 4:11pm
Interesting, Victoria

Just curious--do they monitor your hormone levels regularly and mix the cream according to your levels, or is the same pre-set dosage for 14 years? Is it just estrogen/progesterone or some of the other major hormones mixed in?

Also, do your doctors consider these custom mixes "alternative HRT options" or are you referring to something else--herbs, etc.?

Thanks,

Donna
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote victoira Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2009 at 4:35pm
My doctors suggest Effexor, but I did not like how it makes me feel and who wants to put more "drugs" in my system! I only used the creme for 2 years, before that I was on a low dosage of estrogen for many, many years. The creme is not custom-mixed but is available in varying combinations which I have tried to find the most effective for me. My estrogen level was tested every 6 months.
Dx 9/08; Double Mast 10/08
1.2CM/No nodes/Stage1/Grade2
4 rounds TC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2009 at 5:20am
Jan welcome, I am so sorry I did not see your post until now but boy do we need women like you with the passion and know how to be a part of our forum.
We are working as hard as we can to research, many of us look daily for new information best we can and share with the others.
 
Supporting those newly diagnosed is something we have alot of here, there are so many women joining up being diagnosed, they discover what they have and come here frightened.
 
We are all frightened but determined not to let this nasty disease win.
 
Any suggestions or comments, support you would like to give would be greatly appreciated.  With your expertise you are like an Angel from above.
 
I would suggest if you have not found out by now to PM hayleyd.  She will give you the information you are asking about regarding raising money and other Foundation information.  Maybe she has seen your post and has already contacted you.
Up above the message box is a "private messenger" link, click on that then click on new message and write to hayleyd.
 
There is information above showing past events the Foundation has done for fundraising if you have not seen those links you can check them out.
Also they are having their second Tea and Talk at Saks Fifth Avenue in 2 weeks for another fundraiser, very exciting for all of us.
 
So just happy to see you and welcome your input.  Woman often post and want to do more.  We are working harder at getting the Foundation out there to our medical contacts and friends relatives.  The message has to get out there, the Foundation is here and they want to find help and good treatment for all of the women with TNBC.
 
We are so excited that they also gave us this forum so that we could come to a special place where everyone else understood what it feels to live with TNBC.
 
Jump in anytime.  If you have any thoughts as to what we as members could do to help raise money and awareness of the Foundation we would love suggestions.
 
Also Jan I would suggest you start a new thread if you have a comment to make initially or anytime you like for that matter.
In the forum as I'm sure you have seen there is a section called Talk.  If you go there and click the new topic button at the right top of the message box you'll be ready to go and we will all see your post.
Thanks again!
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kittyr Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2009 at 12:47pm
My life changed February 28, 2008 when I realized I had a fairly large lump along my bra line on my right breast. My GP booked me for a mammogram at our local breast screening clinic for the following week. The lump was biopsied the same day and two weeks later I was told I had breast cancer. I was scheduled the following week for a lumpectomy to remove a 3.9 tumour. My cancer was stage 2, grade 3 triple negative. My nodes (19 were removed) and margins were clear.

I went through chemo - four A/C and four taxol 2 with each treatment 2 weeks appart. I was given Neulasta injections so I could do the two week cycle. I completed the last of my 25 radiation treatments in mid October.

I found a wonderful group of women of Facebook who supported me throughout my journey and we started a group called "ROCKS of SUPPORT".  I also found huge support in a Facebook application called My Fairyland.  Encouraging messages were and still are left for me. Many of the application members have dedicated their gardens to cancer support of in memory of loved ones lost.  I never would have imagined I would have received so much support from people I had never met.  These women did a card campaign for me when I first started chemo and over a two month period I received over 50 cards in the mail. These cards got me through the worst of my chemo days. I would be feeling very down and the mail would arrive with cards from my online angels and I would feel their healing energy being sent my way and know I wasn't alone.

I signed up a group to run/walk in our community for the "CIBC Run for a Cure" and had donations come in from many of our group members in Facebook.  A couple of the ladies formed a group for me called "Kitty Runstedler in the CIBC Run for Cure" where I was able to post updates on my fundraising progress.  My neighbours did a yard sale and my son's hockey team did a BBQ to help raise donations. I ended up with a group of over 30 participants and I personally raised the second highest for our region.  I am working on our group for this year and hope we can be top fundraisers again.

It was only at the end of my treatments that I started to do more research on what it meant to be triple negative.  My oncologist had little information accept to reinforce the importance of a good diet and exercise program.

Breast cancer has changed my life, and I pray it doesn't return but know that I have the strength and support to fight it again if it does.  I will be diligent in paying attention to my body.

Thanks so much for this forum and TNBC Foundation for being an advocate for all of us diagnosed as triple negative.  With research, we can beat this.
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2009 at 6:10am
Hi kittyr and welcome.
 
We have several members now from Canada.
 
Congratulations on completing your treatments.
It sounds like you have become very busy in helping to find answers and we need all the help we can find.
 
I think the sending cards is an excellent idea too.  We have a addy list but I have not had that many members send me their addresses but we do send cards to friends that we can contact occasionally and of course alot of prayer for everyone.
 
Good luck on your future work and please jump in any time with comments or questions.  You are right there is very little information out there but it is getting better all the time so that is encouraging and helps us to have hope that answers are coming soon.


Edited by trip2 - Feb 11 2009 at 6:13am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Patty G View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patty G Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2009 at 2:47pm
Hi Pam,
I love the trip2.  I would fall into that category also.  Just wanted people to know about another website I have.  Feel free to check it out and spread the word.
 
 
 
It is a free service.
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2009 at 8:41am
Great Patty, I'll check it out.
 

Best wishes to you,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HolliBeri Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2009 at 11:59am
Dear Marie,
It sounds as though we have similar DX. Why did you have the mastectomy?
I was diagnosed with IDC & DCIS "Triple Negative" BC in December of 2008 at age 45. I had a lumpectomy and sentinel node mapping on Feb. 9th. My Path report showed a 2 cm tumor (high grade), negative nodes and clear margins. I have been told that my chemo course is the standard of care, dose dense AC x4 followed byTaxol x4. Then I will need to follow with radiation or mastectomy. I am also BRCA Negative. Any advice?
DX age 45:12/08 IDC & DCIS TNBC. 2/09:lumpectomy, 2 cm, grade 3, -nodes, stage IIa, BRCA- Chemo:Taxotere/Cytoxan x4.Double mastectomy 6/09. Zometa   http://www.caringbridge.org/visit/hollisimpsongough
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suzannek Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2009 at 2:12pm
Hi HolliBeri
 
Welcome to this site. I had a similar diagnosis as you and the same recommended treatment. I am currently on the 11th week of the same dose dense chemo. Two more Taxols to go! If you are interested in how one deals with the chemo on a day to day basis, check out my blog.
 
There are links to other TNBC on it.
sue
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mkls Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2009 at 4:20pm
[My wife has TNBC with three tumors next to each other 3.7 cm on the biggest and one positive lymphnode.  Her oncologyst  is saying to complete the chemo before surgery.  She has had two treatments and the blood tests are good and the tumor has began to soften and shrink.  She is on Cytoxin and Adriamisyn.  We think the surgery should be done before her 8 cycles of chemo. 
 
Also, there are many case studies out there for TNBC and we were able to attend a doctors conference addressing TNBC.  So far there is no significant study that has proven a substantial improvement with the combination of chemos.  We were asked for a case study with Carboplatin and the effectiveness does not make much of a difference based on the studies so far.  The problem with case studies is the multiple biopsies which are painful and can cause stress.  Standard Chemo is the way to go at this time.  There is not enough data to choose a different path.  There are too many variables such as age, race, stage etc.  This info is most likely coming from the best source in the country who was a guest speaker at the conference from the top cancer institute in the country.
What are your thought.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2009 at 4:59pm
Hi and welcome mkls,
 
It is my daughter Lori who was dx with TNBC June, 2007. Her thought...she just wanted the beast out of her, and said once the tumor was gone, that she felt "clean".
 
Many are having the neoadjuvant chemo, and it appears that you and your wife have done your research.  Lori had 6 treatments , every 3 weeks of ACT...Adriamycin, Cytoxan and Taxotere. She then had 28 rads, as the first surgeon did not get clean margins.
 
How many treatments will your wife be having? You stated that she has had 2 already. In my opinion, I am not sure if they really know what works and doesn't work. It seems as though most are given the same chemo. TN is too new to have very many studies.
 
The women who are 19, 20 and 22 years out from dx of TN had the chemo every week for a year. Now, the standard is either every 2 or 3 weeks.
 
The decision is ultimately up to your wife. We have many articles on the news and resource forum, and you might want to check there. I will tell you to be aggressive with the treatments and surgery.
 
If you take the time to read some of the posts you will see what I mean. Is there a history of cancer in your family? If there is, your wife should have the BRCA testing. What is your wife's age? Lori was 47 when dx.
 
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Evie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 9:57am
Hello fellow triple negative sisters.  Thanks for this site.  I think it is great to have a place for our specific cancer diagnosis.  To the world it is breast cancer.  Most people ask me if I'm on the Tamoxifin.  When I try to explain the story gets long and they get lost.  I have just finished my treatment and and now on every three month visits with my oncologist.  I am just now beginning to talk with other survivors.  Would love to hear of triple negs that are five years out.  Are your there?Shocked
Evie
dx:May 2008, Stage 2b, grade 3, Chemo TAC every 3 weeks for 6 rounds, right mastectomy, neg nodes, neg BRCA, 33 rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 10:06am
Hi Evie,
 
I am Nancy and my daughter Lori was dx June, 2007. No she isn't 5 years out, but I know she will be! There are some women on the site who are 8, 10, 14, 20, 22 years out from dx. Clap
 
You had the same chemo regimen as Lori ACT. She is also neg nodes and BRCA-.
 
We would love to hear more from you, if you would like to tell us more. Lori will be 47 in a month, and we live in Altoona,PA and Lori lives about 12 miles from us. She teaches second grade.
 
I will send you a private message with directions for posting your stats, so they will be there every time you post..then no need to type them.
 
So glad that you found us, but sure wish you would have found us last May, as I know you would have had so many women who could have shared their journey with you. All with the same dx.
Hugs,
NAncy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 10:15am
Hi Evie,
 
I am 8 years out. DX in 2001 at age 45.
 
Joining an online group was very cathartic for me as I didn't go to face-to-face groups. Not only could I not resonate with them most seemed too old [& I was too young for regulars & too old for the young group] but I didn't want to deal with some of cancer realities. I wanted a more positive picture. I didn't want to be told about all the stuff I couldn't do, like work, function, manage my family without help, plan tx. on a schedule ! Online can be so convenient.
 
Some of what you will read here will sound scary. Just take deep breathes and know you are doing all you can. Good luck to you.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LadyIA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 10:22am
Hi Evie - I am looking forward to celebrating my 5-yr out in August 2009.  Welcome to this site.  You are right...it is very hard to help people understand the difference between triple neg cancer and all the others.  You will find many ladies here who are above and beyond the 5-yr mark and many who are excited to look forward to that mark.  Make yourself at home.  Wink
TN IDC diagosed Aug. 2004; 1.4 cm; Stage 1; Grade 2; Bilat Mast; No node involvement; Chemo - 4 A/C



"Fight Like a Girl"
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Evie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 10:22am

Hi Nancy,  Thanks so much for the reply.  I was 45 at diagnosis.  I did find this site in May but I could not see past my chemo at the time.  I only managed to post my journey on caring bridge.  Last week my daughter gave me a post treatment celebration party.  I am sorry to hear your baby has to go through this but from what I can tell TAC really works on this nasty cancer.  I got complete pathalogic response with neochemo.  I guess we will never know my node status because I got chemo before the nodes were checked.  They found no residual tumor and no cancer in four sentinel nodes during surgery!  My two tumors were 4.3cm total before chemo.  The rads were and insurance because of unknown node status prior to chemo.

Evie

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lyndsey Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 11:06am

Hi everyone, I just found this site today.  The doctor found a lump in my left breast last July.  The local hospital had the dr do a biopsy on the lump. He told me not to worry.......It took him 4 tries to get needle into small lump.  They did not get back with me about results ........Just kept saying it was a small mass not to worry.  Well I worried and self referred myself to MD Anderson where they did an lumpectomy......only to find more triple negative cancer and DCIS.  I was scheduled for a partial mastectomy and radiation.  However the margins came back to close and they wanted to do mastectomy..........In the mean time during recovery I developed a nasty case of MRSA....So my mastectomies were cancelled.  I started 12 weeks of Taxol which I finished 3 weeks ago and started FEC every three weeks for 4x's.  They will be starting me on antibiotics during last chemo round, So I can have my surgery hopefully without MRSA spreading.  This has been really terrifying for me.  I have no family...except my father in an alzeimers home.  I was trying to work through chemo because I didn't want to lose my job position by going over 440 hrs of medical leave, But this FEC has really got me down with the side effects and I can't work. Plus I'll have to be out with surgery............So I am terrified of losing my health insurance as well.  So I am totally stressed out.  Has anyone else been in this situation?  I could use any advice or words of encouragement . I am about ready to stop everything and return to work, Due to economy and all these rules about being off work.  It is so stressful to deal with all this on my own, plus worry about losing my job and insurance. But my Dr. says with the triple negative I have --Worse case scenerio is 5 mo's without the chemo and mastectomies. So I really don't have much of a choice but to keep hanging in there and keep praying everything comes out all right..........................Lyndsey

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 12:03pm
Dear Lyndsey,
 
You are not alone anymore - we will always be with you. In the States there are laws to protect you...I hope one of the American woman will provide you with the exact legislation to prevent this from happening.
 
The side effects are difficult - but they are doable with the proper medications (pills for nausea, vomiting - correct products to use for mouth sores) along with enough support, advice and encouragement. We will help you through every step of treatment.
 
Please tells us more about the size of the tumor, or if lymph nodes were positive.
 
I know how overwhelming this is for you - but we will help you get back on track.
 
Any questions you have please ask and we will get back to you.  We have many kind and caring women with a wealth of experience dealing with the breast cancer, treatment and the medical profession.
 
Welcome and we care,
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 12:18pm
Lyndsey,
 
Hang in there. You have advocated well for yourself by switching Dr.'s & tx centers from the begininng. You  obviously have a lot of strength. In todays market it would be hard to not be stressed out with what you have gone thru. Have you checked to see if your employer is able to alter your schedule? Some can be surprisingly supportive.
 
I was dx. 2 weeks after burying my mother from ovarian cancer. As a self employed single parent I needed my job. I too worked thru tx. Just keep putting one foot in front of the other. I only had 4 chemo tx. but I know another TNBC friend dx after I was that worked thru 8 tx. I marvel at how she did it...but she did. [she was also a single parent with no family support]
 
I admire that you were intuitive enough to persue another avenue of tx. Don't hesitate to let friends help you if they have offered or if they haven't they may feel helpless and not know what to do. Many people are so glad to be able to help. Don't be afraid to ask. there are many women here that are supportive and have great advice and shoulders to lean on.


Edited by kirby - Mar 03 2009 at 12:27pm
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lyndsey Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2009 at 12:32pm
Connie..........Thank you for replyingI had 1 tumor of invasive ductal carcinoma,high nuclear grade 3 nottingham histologic removed in Aug of 2008 along with extensive DCIS no lymph node invovment they did a sentinol biopsy. After this they did an MRI and I had another tumor that was diagnosed same as above with more extensive DCIS. Both invasive tumors were .9mm. The DCIS was quite large in both tumors surrounding-invasive. And I have a KI-67 proliferation of 10% which I have no idea what it means. And my Dr. wanted to do a genetics test....But the insurance company denied it................Anyway that is pretty much all I know until I finish chemo and do the mastectomies.........Until they check tissue, I have knoew idea if there is more or if I will need more treatment..0Than-you Lyndsey
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