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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 3:38am

Jane,

We hope it always works....we know it always doesn't. But, maybe there are those who have many reasons to chemically attempt to stave off the inevitable end all mortals face .... "Pick your poison" has a real significance to triple negatives...since we do not have very many other options in our arsenal.
 
Connie
 
 
 
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 6:54am
I'm 39 years old, and my sweet kids (8 and 10) need their mom.  I would walk through fire for them and for this life I love. 
 
So there is no other answer for me than to believe it will work.  And I do believe.
 
Maybe that sounds melodramatic and naive, but my faith is as deep and as real as my terror.  
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chicklitzz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 7:29am
Jane, I didn't really think that chemo always worked. I just thought there were varying levels of success. What I wasn't aware of was that there were some that wouldn't work at all, that was never explained to me. I thought it was a great disservice. I just really wanted to let other people know that there are ways of testing the chemos on the actual tumor, something else that I wasn't told, I just stumbled across it on the web. All this and I have what is considered to be the best Oncologist on the West Coast. 
Elizabeth, I'm 39 also and have 3 children, 4, 6 and 13. You're going to be alright, you are not naive, you are not alone, you are a tower of strength. Have you ever heard of Randy Pausch? I just found him, I thought his lecture was amazing and apparantly his book just came out. Take a look on youtube if you get a chance. I'll put a link below for you. He was diagnosed with pancreatic and told he had maybe 6 months in 2006. Look at him now, amazing stuff, really inspiring, I cried, I laughed. Are you taking any naturopathic routes? If you are in Seattle have you seen Dr. Reilly yet? Let me know and take care.
Best
Michelle
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 12:00pm

Hi Michelle,Does this Larry Weisenthal do chemosensitivity testing on TNBC?Thanks Billie

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 12:42pm
Everyone interested in seeing a really great explanation of the chemoresistance testing should visit this website....it is a place that does testing for Sloan-Kettering, UCLA, and other major institutions in the States.  The pictures are very great explaining everything. It is located in California.
 
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chicklitzz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 1:02pm
Hi Billie, I'm triple negative and I had my testing done there. They use the actual tumor and send off a sample after surgery to test the different chemos against it to see which ones have the best chance of killing your particular tumor, because they're all different, you just need to tell your surgeon/oncologist that you want this done and they should take care of the rest. You might want to talk to your surgeon/oncologist directly after surgery to make sure it was done.  I hope this been helpful.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2008 at 8:14pm
Thanks Michelle,I have to try to figure out a way to get this information out to women just in case they are ever diagnosed with this terrible beast(as some of the women call it)The more knowledge we have,helps get us through terrible times.It is too late for my sister to get this test done,but it is not to late for all the other women out there who may be diagnosed with it(me included)I sell resale clothes on ebay, and I am going to try to figure out a way to put this information in the description.One thing for sure the surgeons are not going to tell women in advance about this.I read this also that this test also in some instances will let a women know if she is likely to have a recurrance.And in my sisters case,there is a strong possibility that she might not have even had to have that terrible poisen Chemo.She had Trip Neg,a very small tumor with no surrounding tissue or node involvement.Yet because she isTrip Neg she has to have Chemo,simply because this is standard procedure for this subtype of BC.
 
Any way Thanks again Michelle(you also might try to get this word out to all the women that you know that have not been diagnosed with BC)This information is certainly info. that they need at the time of surgery.My sisters oncologist said the other day that he is totally amazed at how many BC patitents he is getting..I said it once,but I will say it again.I have never in all my 66 years read the voices of so many couragous women.God Bless all of you.And my prayers go out to each and every one of you.Thanks Again  Billie
 
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Alma View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2008 at 3:36pm
I'm surprised that anyone thinks that chemotherapy always works. It more often than not doesn't. In primary breast cancer having chmeotherapy may increase chances of the cancer never coming back by some percentage points...5%, 10%, maybe 20%...depending on the pathology of the tumour


With recurrent/metastatic cancer chemotherapy may bring about some progression free time, which may affect overall survival time..or not...but eventually the cancer cells mutate and cancer spreads/grows again. Different chemotherapies work in different ways, and may give extra time but chemtherapy is by no means a cure for cancer.

Jane
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
 
Jane, you are a wise woman, clearly having done your homework. I'd like to add a few thoughts to your assessment of cancer.
 
A surgeon explained on his breast cancer/breast disease  website that breast cancer has to be able to do three things in order to kill us.
 
 First, it has to be able to move from its original site. Not all cancers have that ability.  Metastasis happens to even the 30% of breast cancer patients with negative nodes.  So, we are working with flawed information from the get-go. Whatever allows cancer cells to move is not well understood.
 
Second, that moving cancer cell has to be able to stick someplace vital. Again, science does not understand why some cells just keep on truckin' and others settle down in vital places. The concept of "sticky blood" arises in conversations about lipids and cancer, and some think that controlling lipids has value in keeping the cells moving until they can die a natural death.  Has anyone heard of a breast cancer metastacizing to the heart?
 
Third, the cancer cells have to be able to grow where they stick.  Gathering in whatever the cells need is again a process not completely understood.  Basic science is what we need. How can tumors create their own blood network by signaling for paths to be made to them, for instance?
 
The body is the hero in all of this.
 
I read a book on breast cancer last year by a Dr. Chen. (Can't recall the title now and have passed the book on to a newbie, or I'd tell you.)  Anyway, this doctor said that the body could kill cancer cells IF it could recognize them. He maintains that the immune system of cancer patients is just fine. We fight off colds and flu, after all, so our immune systems are doing their job. The problem is that cancer cells are like enemy soldiers wearing suits that make them invisible to the immune system.  The cancer cells "walk" within us with impunity.  If our immune system could see the cells, it would kill them dead.
 
I would like to see approaches to make cancer cells visible to our immune systems.
 
Thanks for your post.
 
Alma
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2008 at 4:04pm

Dear Alma,

 
Sadly, I know of a couple cases where cancer metastasized to the heart. One was a young woman who was at my cancer clinic....diagnosed age 32. She was diagnosed with breast cancer December 20/2006 died December 6/2007. It spread from breast, liver, lung, heart. They even brought in an experimental drug that only 3 in North America had tried.
 
When someone with cancer has a pericardial effusion - essentially fluid around the heart - cancer cells have spread there. Then to relieve the fluid, a pericardial window is made to drain the effusion away from the heart.
 
Connie
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2008 at 4:31pm
I was having a conversation the other day with Dr. Ralph Moss, or the Moss Report.  He mentioned that some researchers  are working around the idea about  cancer  possibly turning off certain immune system functions in a similar way to how pregnancy does it.  When a woman is pregnant, in order for the fetus to survive and grow, her body must stop perceiving it as a foreign object.  
 
I found this very interesting.
 
Who knows?
 
Caryn 
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2008 at 4:48pm
Dear Caryn,
 
Did you buy his report? If you have...do you think it was helpful?
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2008 at 6:42pm

Hi Michelle,

Thanks for the vote of confidence!  I love the Randy Pausch video.  I saw it a few weeks ago, and I think it's the kind of thing worth watching over and over!
 
I am doing some naturopathic remedies.  Though I have to admit that with the Cisplatin regimen I'm on now, I feel lucky if I can stomach anything, even if it's a bag of Doritos.  I started seeing Dr Reilly in November.  He's great.  I see him again on Tuesday.  Are you a Seattle native?
 
Mostly I've been experimenting with the juicer.  I actually sort of like my juice concoctions, even the strong green ones.  LOL
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 2:55am
OK I'm new to all this and SOOO thankful to finally find this website, unfortunately not til my TN has mets. to my lung after 2 yrs., but...you're here and I'm glad to have this network.
 
I had a lumpectomy in 06 - I have never heard of this chemo testing. I recently had a biopsy of my lung tumor - is that enough to test or do they need the entire tumor?
 
Frantically researching to decide my best treatment - will go anywhere and pay anything. Had my port put in, but haven't decided exactly what to do yet. My onc. says Taxol & Avastin. Abraxane seems to be what I'm reading on here. Anyone first line mets.? 
 
Thanks again I'm glad you're here.
Wendy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 8:21am
Hello Wendy, and welcome, we are glad ou have found us and joined :).
 
I think you might find more of the info you might be searching on in the rec/mets section. The women there have the battle scars of multiple treatments, and clinical trials, alot of helpful info.
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 8:42am
Hi Wendy, and welcome.
 
I think that for the chemosensitivity testing they need fresh, live tumor.  They take the sample and grow it at their lab before they test it, so they have to put it into a special preparation right away upon removal.  So I suspect that the biopsy sample you have can't be used for this purpose.
 
If you ever have another biopsy or surgical removal, you need to call ahead to get the kit.  My test was called the ChemoFX test and was done by Precision Therapeutics.  I had my surgery on short notice, and they were able to fedex the kit to my surgeon and gave instructions to the pathologists.  They didn't need much.  My nodes were only a little over 1 cm, and they took a portion of that.  There are a handful of other companies out there doing this, and I don't know what their requirements are.  Insurance coverage for the test is spotty.  I'm still not sure if mine will pay, but I made up my mind that I wanted the test even if I have to pay for it.
 
Good luck choosing chemos.  The truth is that they don't really know what will work until they try it.  Lots of gals here have had good luck with Taxanes.  If it's a choice between Taxol and Abraxane, I'd take the Abraxane over Taxol.  It's the same drug but in a different preparation, so it requires less pre-meds, steroids, etc.  I asked for Abraxane instead of Taxol 2 years ago and had to fight to get it at the time.  I think it's much more routine now.  Avastin worked very well for me.
 
Wishing you strength,
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 10:28am
Hi Connie,Can you are anyone out there answer this question for me?When my sister and I went to her oncologist I asked him. since my sisters BC was caught early(TNBC ,small tumor,chose lumpectomy,was not in surrounding tissue nor the lympth nodes,she starts Chemo May 1,08),What if she chose to have Chemo only in the event that there was a reccurence(her body would certainly be stronger since she did not have to deal with the poisen Chemo)He point blank said, that they do not have any way to treat her.I do not know why I did not ask him at that time to expain himself,I just didn't.Does any body know what he meant by that remark??????Yes I think that we all know that cancer can not be cured completely.Only put into some type of remission.
 
I am very much interested in oncotech.com.for knowledge for my sister and I.Alot of these different testing places do not mention testing for TNBC.But I asked Michelle(chicklitzz) and she said they did the testing for her and she is TNBC.   Thanks Billie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cookie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 10:49am
I had my lumpectomy in Jan. 07. Yes, like many others I was never told that my tumor could be tested for a number of things. I am so mad about that, I'd think it is malpractice. Had I known, I certainly would have had it tested.
 
That being said, are there any tests now that can be done either on me or on whatever tumor the hopsital may have although it isn't stored in saline solution?
 
I had my first 4 chemos, dose dense. Due for my radiation then 12 more chemos, Abraxene and a carboplatin. Any thoughts? See, had we had the tumor tested we would have known in Jan what would work, now I have to worry until I die.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 11:26am
Dear Billie,
 
Think of it this way....you found one termite in one piece of wood. Even though you got rid of the one piece of termite damage....you still treat the whole house. It is wonderful that your sister's cancer was caught so early....but the doctor is offering damage control. They are finding out now it is better to treat TN aggressively right from the start rather than a wait and see approach. The "other breast cancer" hormone receptor positive - has the opportunity to be controlled by antiestrogen medications.  TN does not have that treatment option. 
 
With all the loving support your sister has in you...along with the information you gather to make her treatment easier - she will hopefully stomp out any cancer cells that may be hiding waiting to do some damage later on down the road. The hormone positive breast cancers do not respond as well to chemo...so chemo is our big treatment gun to use.
 
I hope I have in some way helped in answering your question.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 3:47pm
Originally posted by billie billie wrote:

Hi Connie,Can you are anyone out there answer this question for me?When my sister and I went to her oncologist I asked him. since my sisters BC was caught early(TNBC ,small tumor,chose lumpectomy,was not in surrounding tissue nor the lympth nodes,she starts Chemo May 1,08),What if she chose to have Chemo only in the event that there was a reccurence(her body would certainly be stronger since she did not have to deal with the poisen Chemo)He point blank said, that they do not have any way to treat her.I do not know why I did not ask him at that time to expain himself,I just didn't.Does any body know what he meant by that remark??????Yes I think that we all know that cancer can not be cured completely.Only put into some type of remission.
 
I am very much interested in oncotech.com.for knowledge for my sister and I.Alot of these different testing places do not mention testing for TNBC.But I asked Michelle(chicklitzz) and she said they did the testing for her and she is TNBC.   Thanks Billie
 
Billie, I do not know what the doctor meant. Perhaps you/your sister would benefit from asking him to explain.  Don't be shy.  It's too much to ask of patients to be able to absorb/understand all the angles of treatment decisions. The smart docs encourage follow-up questions.
 
I would like to know about any studies that show that earlier treatment is preferable to treatment later  when metastases appear. Does anyone have a reference?
 
When the doc said they "do not have any way to treat her," I cannot imagine what he meant. There are many drugs available, as you see from the signature lines in this forum.  And if a particular drug is expected to work neoadjuvantly, when why would it not work for mets in the 'virgin' patient?  Your logic is reasonable and requires a further discussion with that doc.
 
If you have more doubts after a followup consult, consider going for a second opinion at a place that sees a lot of TN cases.
 
Good luck,
Alma
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 3:59pm
CG -- Sorry it took so long to respond.  No, I have not bought Dr. Moss's report.  CTCA asked me to sit on a panel of doctors and patients that he interviewed for a report that he's going to do on CTCA.  Afterwards, he sat with us and we discussed many cancer topics.
 
Cheers,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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