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Jessie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2007 at 9:47am
Arnica,
 
I hope all these responses have already made you feel better about choosing not to take the chemo !  Are you feeling the love and support here? Hug
 
Reading all the forums, it does seem as if all of us do chemo and/or radiation.  Not so, I too chose not to take the chemo, and since I had a dbl mastectomy, there is nothing to radiate.  My decision was for different reasons, having to do with heart issues, etc. 
 
I'm very satisfied with my decision and I so very much want you to be also.  The benefit I was quoted by my Onc to taking chemo was 5%.  In my case it was very easy to decide the RISK of taking the chemo outweighed the possible benefit. 
 
I'm taking the path of doing everything under my power to be healthy -- eating lots of fruits and veges, no sugar (weeel, maybe I cheat alittle there), more exercise, sleep, fresh clean air, not spending much time in overly polluted areas, etc.  Your 'remote' area I bet is perfect for healthy air.  Not hard to imagine that building my immune system will make up for that 5%.
 
I have very positive feelings hat I didn't take the chemo.  Remember that it also does damage -- and you aren't making your body vulnerable to all that.
 
Hope I've helped relieved some bad feelings.  Written words are sometimes stronger than intended.  I feel loved in a very special way here on this forum and very free to post my thoughts and fears.  I hope you come to feel that way also.
 
I'd love to know how you're doing.  Also, I'm fascinated, and a bit envious, by your living in a 'remote area' --- where ?  What do you do ?  l can retire from work in about 2 years and I'm hoping to move to a somewhat remote, very serene spot.  I'm sure I'll spend alot of time by myself because my husband wants to do alot of 'adventure' traveling -- I'm not an 'adventurer', so I'll only go on the easy trips.  Actually I've had to travel alot in my job, and now want nothing more than to stay at home.
 
Enough,  let us know how you're doing.
 
Jessie          
 
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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phillyborn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phillyborn Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2007 at 10:43am
Just found this website, after typing in "triple negative breast cancer". Did so after checking out Breastcancer.org and finding hardly anything about our type of cancer.
I was diagnosed with it in early 2005, at age 63, and went through 8 chemo treatments following a lumpectomy, and ended with 34 radiation treatments where the original cancer was found. Had a sentinal node biopsy that turned out negative.
Other than feeling lousy for one day of each of the chemo treatments, they weren't so bad. Nowadays, they infuse an anti-nausea drug prior to the chemo, which allowed me to work fulltime during 6 of the 8 treatments. Had 4 sessions of adriamycin/cytoxin, then 4 sessions of Taxol.
Now, it's returned. Found the lump myself last July and, after testing and more biopsies, found it has spread to my lymph nodes, a nerve, and arm muscle, all on the same (right) side. Had surgery on the first 2, and am slated for radiation to hopefully rid myself of the cancer around the muscle. Am also taking Xeloda, an oral chemo drug, although don't know how effective that'll be, as they also give it to patients with hormone positive cancer.
Now, I'm concerned about life expectancy. Do you know what it is for women with triple negative?
Best wishes!
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phillyborn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phillyborn Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2007 at 11:46am
Hi, Arnica,
As long as you feel comfortable with your decision, no need to look back.
Everyone's got an opinion, and you're entitled to yours.
I was diagnosed in March 2005, at age 63, with TNBC. As I go to a major cancer center, I took their advice and went through the chemo after a lumpectomy (4 AC, then 4 T, every 2 weeks), followed by 34 radiation sessions. Even had genetic testing done, that turned out to be negative for both BRCA genes.
However, this past July, I found another lump on the same side, below my armpit, that was removed and found to be cancerous. Through testing, it had also spread to my lymph nodes, an adjacent nerve, and arm muscle. The first 2 I had removed, and the latter will hopefully be taken care of with more radiation, starting next week.
So, as you can see by my experience, there's no guarantee that chemo will get one into complete remission forever.
I'm interested in alternative modes of therapy; i.e., vitamins, minerals, etc., should this reappear a third time. What are you trying?
Best wishes!
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phillyborn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phillyborn Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2007 at 11:49am

Does anyone know about new treatments for TNBC, specifically?

How about average life expectancy for those of us with recurrent TNBC prior to the 5-year mark from original Dx?

Thanks!

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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2007 at 2:44pm
I had decided after reading Lance Armstrongs book when I went thru chemo that so much of this is all "a crap shoot". To quote him "I 've seen the most positive attitudes die and the crabbiest  live". It is all so difficult...but who wants to spend energy on the worry when we really don't know whether to worry or not.
 
When I first found this site I was freaked out with so much I was reading. I was dx in 2001 at age 45. They certainly didn't call it TN then.With my SN biopsy, 13 nodes were removed. They were just starting to do SN and my surgeons words were "better safe than sorry." I had a 2 cm mass. I only had 4 rnds of AC. I think just luck of the draw that I haven't had a reccurance.  Technology has changed and things are done differently now.
 
We do have choice in how we want to live. Hopefully we can all find that place of peace.
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Arnica View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arnica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2007 at 2:18am
Hi Jessie, thanks for the encouragement. I live out in the plains about 2.5 hours from Denver and 3.5 hours from Colorado Springs. Yes, I'm trying to do some of the same things that you are to make up for those numbers.  My instructions are low fat diet full of leafy green vegetables, protein with every meal, no white sugar, white flour, or white rice, and a vitamin and supplement regimen. 

Edited by Arnica - Nov 29 2007 at 2:19am
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Arnica View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arnica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2007 at 2:44am
Hi Phillyborn,
thanks for the encouragement. I'm sorry to hear that your cancer came back. You said it came back in the muscle, too? Did you have symptoms with that?  Re alternative therapy, I'm discovering that what I'm doing is "complimentary" therapy rather than "alternative" because I am doing it in conjunction with surgery and radiation more than I am doing it as an alternative to chemo. I had "very" low levels of Vit. D, so am taking 2000 units. John Hopkins U. developed a supplement from broccoli sprouts that is the concentrated chemical sulphoraphane glocosinolate -- the antioxidant that's the reason we're encouraged to eat lots of broccoli -- and I take that, a high dose of melatonin, Omega 3 oils, and a multi-vitamin. I asked if I could take tumeric capsules and was told it was ok. For radiation therapy-related fatigue, I have CoQ10 and L-Carnitine. I just started having massages for stress and learning how to do self-massage for lymphadema prevention. If I didn't have to drive so far to an acupuncturist, I would do that for fatigue. 
I'm not claiming I get this right all of the time - but that is the plan.
 
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Arnica View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arnica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2007 at 3:00am
Kirby, you said, "I had decided after reading Lance Armstrongs book when I went thru chemo that so much of this is all "a crap shoot". To quote him "I 've seen the most positive attitudes die and the crabbiest  live". It is all so difficult...but who wants to spend energy on the worry when we really don't know whether to worry or not. "
 
I agree - it is a little unnerving to be told by lots of people that my prognosis depends on having a "positive attitude." In the book Breast Cancer Journal: A Century of Petals by Juliett Wittman, she writes that living in Boulder, Colorado, she was particularly exposed to the idea that we create our own reality, including disease, and how she struggled with that. Her therapist explained to her one day that a study he had just read found that women with breast cancer who had a hostile attitude toward their doctors had a better outcome that those who had a positive attitude all the time.  I'm really really paraphrasing here because I can't find the book.  And I'm not advocating for hostile or against positive attitudes. And I'm not saying there is NO mind-body connection. But I don't think we created our disease with our minds and I think it's a huge burden to try to have a "positive attitude" all the time.
 
I agree - I don't want to spend energy worrying.  It is another life lesson to figure out how to be vigilant without worrying, and to have peace of mind after so much anxiety.  Smile
 
 
>>When I first found this site I was freaked out with so much I was reading.
 
I have not been able to read much on the site yet - too overwhelming. But I'm so glad it's here and glad I found it, and wish I had found it sooner.  I'm still barely navigating around to find the conversations that I'm in and finding time to be thoughtful with replies.
 
Arnica
 
 


Edited by Arnica - Nov 29 2007 at 3:01am
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2007 at 6:37am
My mother was only 64 when she died from ovarian cancer. She tended to live in denial [I wonder where I got it ?]. She didn't really deal , at least not outloud to anyone with the fact that she was probably dying. She was always so optimistic. I have been known to tell people who have not really dealt with cancer that try to tell me about having a positive outlook " that if that was all it took my mother wouldn't be dead". That usually stops them in their tracks.
 
On a positive note..it is so much easier and more gratifying to try to live being happier. We do have choice in that. I do have to rearrange my thinking to be there as often as possible.
 
Arnica, I laughed at myself as I just discovered this past week how to manuveur to other topics. I am not in the throngs of treatment either so my survival mode is completely different.


Edited by kirby - Nov 29 2007 at 6:43am
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lisab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2007 at 3:35am
Dear friends, I have found that if I allow myself to feel whatever I am feeling, I do much better, instead of trying to force myself to have a positive attitude.  I also believe it's the luck of the draw as far as cancer is concerned.  We do the best we can with what we have and there is nothing at all wrong with questioning what's happening to us or what sort of treatment we are getting. And if we don't like what we hear, we can always ask another doctor.  Seems like every time I go for chemo, I ask my chemo nurse the same questions I ask my doctor just to see what she says.  It helps me alot.  Also, I do believe in positive thinking and positive imagery to help with treatment or surgery.  It's just that I don't believe thinking a certain way can make the difference in how my cancer affects my body.  I do believe it helps how I approach it, though. 
 
Stats?  I don't listen to them.  I have found that many of the stats that are given are from studies that have been done in the last five years or more, and because there is so much new and on the horizon, the stats just don't mean that much to me.  That's just my personal opinion.  Please don't think, however, that I don't believe these studies are not good - on the contrary, I am eternally grateful to the women who participate in them.  These pioneers are the ones who are giving the rest of us so much hope. 
 
Love and hugs,
 
Lisa B.
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Mary B View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary B Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2007 at 5:03pm
Lisa B-
 
Well said.  I am also a big believer in letting yourself feel what you feel.  I had a malignant melanoma lesion removed from my arm in 1982.   I had a terrible attitude then, sad, angry, confused, sure it would kill me.  And here it is 25 years later, no recurrance (-the breast cancer was something different.)  
 
Good reminder on the relevance of statistics too.  
 
Thank you very much for writing.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2007 at 4:25am
Hi, ladies.  I really hate to be joining this club.  I had BC treatment in 2005, and thought I was going to make it through.  But now, it looks like I've got lung mets.  No biopsy yet, but four active nodes showed up on PET.   So, here I am. 
I've been looking at a PARP 1 inhibitor trial in Indianapolis.  Does anyone have any information about PARP inhibitors?
 
BrendaCry
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Post Options Post Options   Thanks (0) Thanks(0)   Quote texasgirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2007 at 4:40am
Hi Brenda,
 
Two girls on this site, Calgal and Lilian, are on this trial.  They are both BRCA positive.  I think they are having good results.  Do a search by person for Calgal and you could Private Messenger her.  She has a world of information and also had lung mets.  If you can not get hold of them let me know I have their personal e-mails and I am sure they will help you.
dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2007 at 7:17am
Brenda,
 
The PARP Inhibitor trials are open to BRCA+'s.  Other trials are open to triple negatives.  However, I believe BOTH types of trials require that you have had a 'failed treatment course for metastatic disease.' 
 
I was dx'd with lung mets (8 tiny nodules) in July and did Avastin/Taxol and radiation (for tumor in my lymph node), then we added Carboplatin and Eribitux.  As of my last PET scan, I'm NED.
 
Please feel free to contact me if you have any questions about my treatment.
 
Best regards,
Caryn
 
___________________________
dx 6/2007
Stage IV (lymph node and lung mets)
Avastin+Taxol w/ Rads 8-9/2007
Added Carboplatin and Erbitux 9-12/2007
11/2007 -- NEDbr
Orig. dx - Stage 2a, BRCA1+, Triple negative, neg. nodes, Grade 3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phillyborn Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2007 at 6:45pm
Hi, Arnica,
Sorry for such a delayed reply.
No symptoms re: the muscle in my arm. The surgeon found it when it removed the lymph nodes. As a result, I'm scheduled to start 5-weeks of radiation beginning on the 17th or 18th. My doc is hopeful that the radiation, combined with Xeloda pills I'm taking, will put me in long term remission -- he actually used the word "cure".
Thanks for the info on complimentary supplements. I'll check them out with my doc, although he doesn't want me to take anti-oxidants during the radiation treatments, as he thinks they would diminish the anticipated results. I've got a masters degree from the University of Pennsylvania, but I still don't get the reasoning behind that!
Hope you're doing well, and are enjoying this season.
Helen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nikol Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 8:33am
Hi,
I am new on this forum. I was diagnosed with TNBC at the age of 34. I live in Central Europe. I am very glad to find this forum. It is fantastic that there was 2007 TNBC Symposium. Smile 
 
I am interested in research and clinical trials, studies about this type of breast cancer. I have seen that there are generally many clinical trials in the USA. Do you know please about any clinical trials, studies related to breast cancer in Europe? Are some trials or studies open to citizen of various countries?  I know that there was seldom some research about TNBC. If you have some informations about it I would be thankful.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chaya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 10:53am
Check out this website: http://breast-cancer-research.com/content/6/4/145

There is a lot going on in Europe. The most interesting (i.e. readable) article I found today was from doctors in Belgium. I've also seen articles by Italian doctors.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 11:51am
I am always curious about article's from europe, especially Italy. My ex husband is from Italy and 20 years ago his relatives from Rome would come to the states when there was a descrepency in their mammograms. None have had breast cancer. Do you think the italians could make this many advances this fast? My info is certainly dated and limited to a very small circle but at that time those I knew were not real positive about their health care.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nikol Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 11:52am
Hello,
 
thank you for your idea. On this websites dedicated to Breast Cancer Research are also informations about Conferences, trials, which are useful for me.  I will prove it . 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chaya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 7:59pm
I really didn't keep track of exactly how much was coming from Italy - I just noticed that there were papers from there.

My guess is that it's like it is all over - some doctors are great, some awful, and most somewhere in between.

Also keep in mind that some people will go for the best because they can. I know of more than one New Yorker who has gone to Sloan even though it's not covered by their health plan.
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