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Are there women who survive TNB

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Pam M View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pam M Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 4:02am
Thanks for the link Steve. That is the article I am referring to. Again, it gave me a lot of info and hope.


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sharon rereg View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon rereg Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 6:46am
Hi Newalex and everyone--I just want to add my story to the at least medium term survival stats. As you'll see from my signature (I hope) I was worse off at diagnosis and am still here, NED, 4 1/2 yrs post dx. My onc says she has never see a TN recur after 4 yrs post dx. I know it can happen, but am feeling pretty secure.

The chemo and all is a hard road, but can make all the difference. Good luck and lots of hugs.

Sharon
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 6:58am

hi Sharon

So good to hear that you are 4 and half yrs out. I need to hear sucess stories as the whole day I have been down.

How many nodes did you have positve? Did your path reports say that you had lymphatic vascular invasion in the tumor?

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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 7:08am
Dear newalex,
 
Rena, one of our members is now 22 years out from dx and she had 22 positive nodes. Now there is a success story!Wink That should lift your spirits for monthsBig%20smile
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 dcronin Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 11:04am
Hi all, this is a great website. I was diagnosed yesterday as "triple n." I am confused by all the survival statistics and am feeling very down. I had a lumpectomy (1.3 cm) and no nodes. I am finishing 5 days of mammosite radiation and now will have chemo. I'm 60 and would like to see my youngest child graduate from college in 3 years. Every person I talked to seems very down about this (even my son who is an intern!) Please help, I'd like to direct him to some good statistics.
Thanks so much for this cite.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 1:48pm
No nodes...now that is great news....my friend!!!!
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 1:50pm
Hi
Sorry to hear of your Dx.
 
A point has been made in a couple of threads in the last few days that stats are somewhat difficult.  Because TN is a relatively recent DX there could be (and likely) many long term survivors that had no idea they were TN. 
 
Stats are only useful information if the data is complete - in our case it seems a little too early to get realiable, complete data.  The silver lining is with such poor stats at the moment - the medical world is concentrating on finding anything that will improve our outcomes -
 
Have a look at the thread under talk - a message from Dr Susan Love - an inatitive to improve the spread of good news.  Hopefully in 10 years time the majority of us will be the good news stats............
 
I agree most of the information out there is very frightening, and hard to get your head around at first -the nature of a beast that is not yet understood- this site is great as there is soo many positive messages here.  You are in good company here, we all have ups and downs - you keep looking forward to that graduation.
 
Keep us posted on your journey - we do understand
 
Hugs
Kazza
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 1:59pm
Big%20smileSusan,
Thank you so much for the shake recipe. I have been wanting to add one to my daily schedule. This sounds healthy, thank you for taking the time to post..
I realize we should all do our own research and check with our doctor, somethings we need to know others are making an idea work in their schedule to make us jump in..
I appreciate you,Clap
 
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 2:02pm
Sharon and Susan,
Thank you so much for going to the trouble to post.
I appreciate your suggestions. Sometimes we need to know others are working on their recovery to help us jump in and  go for it our selves....
Yeah girls thanks!!!
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Blessed Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 4:01pm
Absolutely! I am new to this site. You must not give up hope.  I was diagnosed March 2008 (Stage 3 ).  I am on my third round of chemo.  AC & Taxol and Avastin & Xeloda did not work for with me.  As Granny said, GOD wants us to be in good health. I thank the Lord every day for FAVOR because I know that one day I will be in remission.   I wish I could say I have been in remission for 19 months. You are so blessed already. Take each day as blessing. Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kikidan Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 4:30pm
Hey Ladies!
Doesn't Christine (SapphireSkies) look awesome?!?! 
 
Christine, you look BEAUTIFUL!  Almost royal with that gorgeous smile!  I love that you posted your picture. 
 
Something about a baldheaded woman that always turns my head these days.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon rereg Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 4:54am
Hi new alex--I never knew how many lymphs were involved initially, because I had neo-adjuvant (before surgery) chemo. We knew at least one was involved, because it was swollen, and they biopsied it when they did the lumps. The good news was that when they did do the surgery they found nothing but dead cancer cells everywhere. I could never find out exactly what "everywhere" meant, but I suspect it was in a number of nodes, because the one was palpable at diagnosis.

Sharon
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon rereg Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 5:20am
Hi Dccronin--I've said this before, so you veterans on the site bear with me. A lot of the real downer articles out there--the ones that start "prognosis for distant mets with TN much higher than hormone receptive..."--all leave to the very end the important qualifier, which is "without aggressive treatment".

We still have stats from before the aggressiveness of TN was recognized and the standard treatment of lumpectomy with radiation was given to TN ladies with no node involvement. I don't think the stats are in for those of us who received the dose dense chemo no matter what the staging, but they are sure to be better. One thing they do know is that TN responds better and more often to chemo.

So keep your hopes up. I had 3 friends + me dxed within 2 years. 3 of us had TN, one hormone receptive. The 3 of us with TN are all still NED, the other is dead. Go figure.

Sharon
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MABELS Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 9:02am
Granny, Thank you for sharing God's love. I am so happy to be reminded of Gods strength. Thank you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tabatha00 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 9:10am
I second that!!!!!!   Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimi25 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2009 at 12:01pm
Had no idea there was such an organization, but just wanted to post a note.
I had tnb in 1988, 9 positive nodes, double radical mastec, 6 wks radiation and one year of A/C/5FU (after 8 doses, the A was changed to methotrexate), with "booster" doses one week after each massive treatment (my doctor called himself "Megadose Joe"! ) It is now 2009!  Need I say more.  Old Joe cured me! 
Of course, at the time, I didn't know about the HER gene but have now been tested for it. 
Hang in there and do what it takes.  I've seen my daughters marry and held all four of my grandchildren. 
Mimi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2009 at 12:10pm

WOW,

I am impressed that Megadose Joe was such a visionary - he was treated hormone negative breast cancer aggressively 20 years ago!!  Long-term survivors like Rena (who had more than 20 positive nodes) had one year of aggressive chemotherapy 22 years ago!
 
Megadose Joe gave you a wonderful life! I hope his life has been as happy as he made yours by having children and grandchildren.
 
Thank you so much for taking time to share your wonderful story.
 
Love,
Connie
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I was in the process of becoming a pastor (age 57) when I was diagnosed. My doctors didn't offer statistics (and I didn't ask, really didn't want to know) but they said it was serious. Their plan - throw EVERYTHING we've got at it to knock it out.
I had dense dose chemo 4-1/2 months (thank God for chemo port!) before surgery. My tumor was large enough to be felt (like ping-pong ball size). By two weeks into chemo it felt different. By two months I couldn't feel it at all. By end of chemo they couldn't see anything on MRI. They still decided on mastecomy and node removal, followed by 38 doses of radiation, especially concentrated on the skin over the tumor site and armpit & neck. (radiation changes skin so no reconstruction option for me)
I went completely bald and didn't wear a wig. That lead many people to talk to me - strangers as well as friends. Many people walked up to me to tell me their survival stories! They want us to know, like I want YOU to know!
I held to my belief in God's goodness - one way or another I would always be in His love and care.
Today my hair is back and my energy is through the roof. I work and love my work, especially being involved in hospital chaplain work once a month. I don't need to tell my story often, but I listen and remember and my prayers hold confident hope in God's goodness even when we are walking through the valleys!
I remember days when I would surf the net looking for information. There is a lot of good information, but it doesn't all apply equally to you. When it got too much, I would declare that my health was not in the hands of the internet, nor was my hope! I would sign off, call and pray with a friend, and then thank God that He was in charge.
Also I would remind myself: No one gets all the side effects and even when I got some, they didn't last all the time. My doctors had lots of things to help so I would always be sure to let them know what I was feeling.
PLUS I changed medical insurance midstream to one that gave better coverage (being able to do that was a real God-blessed gift!) and my husband drove me over a hour each way to each appointment so we could get to the best team-based approach in our area.
I met a lot of women who didn't want to know the details but I thrive on facts - they help me feel more involved. And I let my doctors know that - they say they appreciate patients telling them how much info they can handle. Also I picked up every free cancer related magazine in the waiting rooms. There were stories that helped me understand terms so I could ask good questions.
I understand how scary it can be. We all need time to absorb these new facts and to grieve for changed plans. But remember, all the "facts" in the world are not about you, they are statistics based on lots of unspoken factors. We are not statistics. We are individuals and we rely on a power higher than any number! (My sister-in-law is a six year survivor of stage4 ovarian cancer - and she has been to many wonderful family events.) 
I am 60 now and I have been pastoring a church for over a year. July 11 my son got married and I officiated at his wedding. JOY is on the other side of chemo/surgery/radiation - for more of us than you might think!
DX:Nov'06 Stage3 TNBC,5cm-TX:chemo,mast,rad,complete response
DX:Jan'11 BRCA1, Stage4 TNBC,CTC24
TX:Avastin/Taxol @56 days"near complete response', CTC=ZERO
Hair gone,but going strong,loving life
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2009 at 5:51pm
Dear Mimi25,
 
I'm with Connie ....Megadose Joe made sure that you would be around to hold those grandchildren, and your doctor, like Rena's and Flutist's apparently knew more 20 years ago than they know now. Please tell us moreWink Where did you receive treatments? Please post oftenClapIt is my daughter Lori who was dx with TNBC in June of 2007.
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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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2009 at 6:04pm
Dear Martha,
 
Welcome to the site. Thank you so much for sharing your story, and how wonderful that you officiated at your son's weddingClap 
 
How right you are that each person is an individual and not a statistic. I have to remind myself of that everytime I read another article which is depressing,so that I can stay positive for my daughter Lori.
 
Each person has to fight this battle in their own way...and take this journey based on the information they have. Martha, may I as how you found the site and where you received treatment? Please post as often as you can, we would love to hear more from you.Big%20smile
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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