Chemotherapy is the only thing effective on TNBC
Printed From: TNBC Foundation
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=5534
Printed Date: Mar 26 2026 at 8:23pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: Chemotherapy is the only thing effective on TNBC
Posted By: latriciadawn
Subject: Chemotherapy is the only thing effective on TNBC
Date Posted: Jan 14 2010 at 9:51pm
|
This is the first time I've made a comment. I was Dx with Ca June 09 and I recently finished 8 sessions of chemo, red devil first 4 and taxol last four. (Stage III aggressive) I was pleased after the first or 2nd dose of the red devil to discover significant shrinkage of the tumor. (I personally have neglected on examining my breast since the tumor was found). Two weeks after the final #8 chemo session with taxol, I discovered a large lump (just by seeing it!) in the exact place the other one was. While in my first 4 treatments with the red devil, the tumor had reduced down to it not being in the same area at all and moved way over and was very small. This has shocked and disappointed me. I was examined by my breast surgeon the following day, he felt it was probably cancer. I am having a dbl/mast scheduled on the 25th of Jan, this month. I told him I have researched some in the TNBC area and could it be that some chemo medicines are not effective for TNBC, and how is it that he would consider radiation when it hasn't proven to be effective for TNBC.
He could not answer the questions. Has anyone heard that taxol hasn't always been effective on TNBC? It just so appears that the last 4 sessions were for nothing.
|
Replies:
Posted By: 123Donna
Date Posted: Jan 14 2010 at 9:57pm
|
First let me say I'm glad you joined our forum. I'm so sorry to hear that the treatments weren't successful. It does seem trial and error with the effectiveness of chemo on a particular tumor. It sounds like your tumor responded to the AC, but not the Taxol. I wish all goes well with your upcoming surgery. Please keep us posted on your progress. ------------- 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: Terje
Date Posted: Jan 14 2010 at 10:59pm
|
Hi Latricia,
My cousin did AC/T when she was first diagnosed. AC reduced her tumor from 6 cm to around 3 cm. After the maximum number of rounds of AC, they switched her to T (Taxol) and left her on it for 3 months. There were no scans at all until the end when they found out her tumor was now 7 cm! She's now on the phase 3 BSI-201 PARP inhibitor trial. http://clinicaltrials.gov/ct2/show/NCT00938652 - http://clinicaltrials.gov/ct2/show/NCT00938652 She's currently in the non-BSI-201 arm and hoping to switch over to the BSI-201 arm if her tumors progress. |
Posted By: dmwolf
Date Posted: Jan 15 2010 at 12:18am
|
It's unfortunately hit or miss at this point. Some women with TNBC respond to AC, some to Taxol, some to both, and some to neither. Latricia, I'm so glad you joined us here. Good luck with the upcoming surgery, and please feel free to share your experience. We're here to support you all the way. 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: latriciadawn
Date Posted: Jan 15 2010 at 2:11pm
|
Wow. I am so glad I got on here. Thank you so much for your imput all three of you. Someone else had recently told me that this newly found cancer may not necessarily be triple negative, secondary something....
It does feel wonderful getting input from people that really understand and care. Thank you so much, Latricia
|
Posted By: Nancy
Date Posted: Jan 15 2010 at 3:08pm
|
Dear latriciadawn,
I too am sorry that you have to join this discussion site, but I extend a warm welcome to you. BTW...we have a daughter who lives in Fayettville Arkansas.
 It is my daughter Lori who lives here who was dx with TNBC in June of 2007.There are two testing centers for chemosensitivity and it does not have to be trial and error when it comes to which chemotherapy agents will sucessfully treat your breast cancer. I have been corresponding for some time now, with a gentleman whose wife was dx with TNBC many months ago, and they were trying to decide exactly which treatments, if any, would be of benefit for her. If the head director at MD Anderson states that this lab in Germany was a huge success with the testing, then why is not everyone being told to have this testing? I know that this is an out-of-the -pocket expense, and 2 women members here have had the testing.
I wish you well with your surgery, and whatever further treatments you may have to take.
Here are the addresses of the 2 labs.
Research Genetic Cancer Centre
(R.G.C.C.)
P.O. 53070
Florina, Greece
+30-24630-42264
+30-24630-42265 (fax)
E-mail: mhtml:%7bE77B2F5E-9277-4B35-AB0D-6D6257954AE9%7dmid://00000113/!x-usc:mailto:jpapasot@doctors.org.uk - jpapasot@doctors.org.uk
The other testing center is in Germany
Biofocus Institute for Laboratory Medicine
Dr. med Dipl. Chem. Doris Bachg
Dr. med Uwe Haselhorst
Berghauser Str. 295
45659 Recklinghausen, Germany
Contact: Dr. Lothar Prix
+49 2361-3000-130
+49 2361-3000-169 (fax)
E-mail: mailto:prix@biofocus.de - prix@biofocus.de
I apologize in advance for the large lettering, as I copied and pasted from Bob's email and I cannot reduce it. We researched different testing procedures and found a laboratory in Germany, Biofocus Labs that did chemosensitivity and resistant testing to see what chemo drugs would work and what drugs could be either ineffective or even harmful. There are only a few foreign laboratories that do this work and in fact the head director at MD Anderson in Houston a renowned cancer hospital told us this lab in Germany was a huge success with their testing. We have a reference recently from the Cleveland Clinic that said that this latest testing procedure was the major break through in cancer treatment for 2009. So we knew we were not working with a lab in Germany up in the Alps in some guys garage. ------------- 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 |
Posted By: Terje
Date Posted: Jan 15 2010 at 3:54pm
Here's what I have about chemosensitivity testing.
Here's also a web site that explains it. http://www.chemosensitivity.com/ - http://www.chemosensitivity.com/ |
Problem is that they need to be done on fresh tumor, so requires a surgery or biopsy. Depending on where the tumors are, could be more risk. The top two places are Rational Therapeutics in Long Beach, and an oncologist at UC Irvine whose name escapes me. It is a controversial topic in oncology. I believe the data that they are predictive, however I also don't think they are worth unnecessary surgery. There is the risk that one biopsy will have different chemosensitivity than another tumor site, if they have different mutations.Posted By: Nancy
Date Posted: Jan 15 2010 at 4:06pm
|
Dear Terje,
This testing is not on the tumor, it is with the blood. ------------- 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 |
Posted By: Terje
Date Posted: Jan 15 2010 at 4:45pm
|
Nancy, the chemosensitivity.com site mentions obtaining tumor cells from the blood, but that's not always possible because there aren't always tumor cells floating around in the blood. If there are, you're worse off than if there aren't. I guess that's what they mean when they say, "node negative" because if there are no tumor cells in the blood, then there will be none in the nodes and therefor it's less likely that the tumors have metastasized.
Chemosensitivity.com says that if you have metastatic cancer, then they can get samples from your blood. I guess what that means is they take blood and you hope that they can't find any cancer cells, but if they can't, then you don't get your test results and they need to go in with a needle to take a biopsy. If they're going to take a biopsy anyway, they might as well take enough for the test. I personally believe chemosensitivity testing is a good idea because even though it might not find the therapy that is guaranteed to work on all your metastasis, at least it will rule out those that don't work on the sample. I mean if it doesn't at least work on the sample it probably won't work on the mets either. |
Posted By: latriciadawn
Date Posted: Jan 15 2010 at 8:20pm
| Thanks so much for all the info, everyone. My breast surgeon said that we'll just have to wait and see what he finds during surgery on the 25th of this month. Then, he would know more to tell me. All of this info is beneficial, thank you again. |
Posted By: SagePatientAdvocates
Date Posted: Jan 15 2010 at 8:42pm
|
Dear Nancy, where is the evidence in scientific peer-reviewed journals of the efficacy of the work in Greece or Germany? I may have missed it at the ASCO conference or SABCS but I do not remember seeing any papers presented by either group. Nancy, until we have more evidence their system works the most important part of your post was your question..."If the head director at MD Anderson states that this lab in Germany was a huge success with the testing, then why is not everyone being told to have this testing?" now that is a good question....and what is the answer?...and what is the name of "head director of MD Anderson?" and where is the printed reference from the Cleveland Clinic?... If there was an easy way to find out if certain chemos worked or not, just from blood work, that would be a HUGE development for our community. Terje made an excellent point regarding that. I have no idea if the Greek and/or German labs research/practices are valid or not. Until we can have hard evidence validated by reputable sources that they are, I think it is dangerous to present information about their facilities... All kinds of folks promise all sorts of things regarding cancer...I have a friend who took his wife to Tijuana because of their supposed "miracle cure." She died recently. The only thing for sure about that exercise was that the clinic took a bunch of their money. Nancy, please provide more concrete information..I pray the results from these labs withstand scrutiny but until that evidence is presented I am skeptical. I am delighted if your contact's wife was helped but I think our community needs more evidence before such treatment is recommended. Nancy, please, please do not take my post as anything negative about you personally...I know your heart is with our community and on a personal level you have been very supportive and helpful to many, many here including me and again, I thank you for that. I am just nervous about the information you passed along...and no, Suzanne Somers opinion on this doesn't do it for me, either.. I personally think this information belongs in the Alternative Treatment Support Forum. 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: Carol (Tenn)
Date Posted: Jan 16 2010 at 8:38am
|
Welcome Latricia,
You will find a lot kind, caring people here who are trying so desperately to research every avenue in an effort to help us all.
In my own experience, sadly the chemo didn't do the job. I had a recurrence 4 months post treatment. It was not a secondary tumor but a recurrence of the primary. So far (and I had scans yesterday) I am doing great. No more primaries or mets. Praise God!!
Speaking of which, we do have a spiritual support thread here if you are interested. Just jump to Support Groups, then Spiritual Support. We would love to hear from you there as well.
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: MsBliss
Date Posted: Jan 16 2010 at 6:21pm
|
For chemo sensitivity testing there is also Mammoprint (which tests for genotype aggressiveness, but provides clues as to what might work best) and Target Now--they test the tumor tissue, and it is covered by insurance more often than not. It can provide additional info as to the best course of action. Dear Steve, tumor sensitivity testing is not "Alternative"; not at all. It is a medical procedure that will become the standard of care once the political and cost considerations shake out. It is routinely done at top cancer centers for other types of cancer, lung cancer, for example, and should not be dismissed. It is critical for forum members to share information that may affect their outcomes; were my chemo failing me, I would want to know about other options out there that would provide further data to help me coordinate my treatment. I don't believe that ASCO is the final word on these things. As a bloated and major pharma funded body, it can only factor generalized risk but not absolute risk to the individual, and as an individual patient, who can wait 10 more years for them to decide what is valid and fits their agenda with regard to chemo sensitivity testing? Chemo sensitivity testing is strenuously opposed by the standardized chemo concerns. Why? What are they afraid of? It will become the standard of care once we start to make a little noise. What many people fail to understand is that oncology science is failing triple negative breast cancer. Tnbc is a stem cell genesis and propagating phenomenon. If you need chemo, getting the right chemo cocktail is critical for this subgroup--it is all we have. It is more profitable and comfortably common to throw the chemo spaghetti against the wall and see what "sticks" when it comes to tnbc. I, for one, cannot understand how we can so easily accept this as the standard of care when it comes to such an aggressive form of bc. |
Posted By: latriciadawn
Date Posted: Jan 16 2010 at 9:30pm
|
I believe this website would be more helpful if it were clearly stated that with TNBC all chemotherapy medicines are not necesssarily effective. With me, the first 4 chemo treatments were the "red devil" (I'm sorry I don't know the technical names yet), and I saw a very significant shrinkage of the tumor. Had I known this then, I would have been looking out for possible recurrence. My oncologist always examined my breast with my bra on and sometimes even with a shirt on over the bra) and I never personally felt my breast those months. I was told I must have a total of 8 sessions, 4 of the red devil and then 4 of the taxol because of "protocol". I just am in dis-belief that my oncologist would have over-looked this lump. Could it be he really knew it was there? |
Posted By: latriciadawn
Date Posted: Jan 16 2010 at 9:33pm
|
Carol,
I am not understanding what happened after the four months when you had recurrence of the cancer. Can you explain it in more laymans terms? Thanks, Latricia
|
Posted By: latriciadawn
Date Posted: Jan 16 2010 at 9:42pm
| By the way, I am caucasian, and have been in menopause for over 11 years. I am 53 1/2 years old. |
Posted By: latriciadawn
Date Posted: Jan 16 2010 at 9:47pm
| I have not seen anywhere that radiation is effective on TNBC. Is this just another thing that the doctors are doing due to "protocol" and not really understanding TNBC? |
Posted By: maryjahn
Date Posted: Jan 16 2010 at 9:49pm
|
Dear Steve,
Nancy asked me to post this for you regarding blood testing for tumors:
Gals
Dr. Prix is the outfit in Germany that does the more advanced testing. Dr. Rosenberg is an integrative Doctor that does both standard care and natural methods. Blood testing for tumors is a big time threat to all of the oncologist and imaging people in the world. Their CTC testing (Cancer tumor Cell) could very likely replace billions of dollars of equipment in place and I really sensed that talking to the oncologist yesterday. The biggest problem with the status quo is false positives and unnecessary surgeries and treatments and I would suggest that you print out this e-mail and keep it handy for yourself or someone you know before you or they get cut or fried. Bob Check out the links below.. http://www.lef.org/featured-articles/Designing-An-Individually-Tailored-Cancer-Treatment-Utilizing-Advanced-CTC-Molecular-Analysis.htm - http://www.lef.org/featured-articles/Designing-An-Individually-Tailored-Cancer-Treatment-Utilizing-Advanced-CTC-Molecular-Analysis.htm http://www.lef.org/featured-articles/Circulating-Tumor-Cells-Assays-A-Major-Advance-In-Cancer-Treatment.htm - http://www.lef.org/featured-articles/Circulating-Tumor-Cells-Assays-A-Major-Advance-In-Cancer-Treatment.htm Dear Dr. Prix: Re: Dr. Rosenberg Thank you for your replies to my questions. We have made arrangement to communicate with Dr. Rosenberg in Delray, regarding consultation and possible testing using your services. We had an appointment with a local oncologist yesterday and when we mentioned CTC testing her comment was and I will quote her "That test is done for stage 4 patients" In all the research we have done we have not read this. I do recall in your first response last week that if you could not detect cancer tumor cells, you could not go on with your other tests and I believe you were referring to the chemo sensitivity drug tests. Is this correct? Dr. Prix, at this time all of my wife's tests have been negative from the lymph nodes, blood tests, MRI along with clear margins after surgery and I am just wondering with the oncologists pushing chemo and radiation whether or not we are trying to fix something that isn't broke and half kill my wife in the process. There are blood tests for CTC's given in our area or at least collected and sent out and from my understanding they are sent within the States here. They do not know anything about the chemo sensitivity tests. Would it make sense to do this test here, report the results to you and Dr. Rosenberg? In this case if they came back negative we would not have reason to have anything done with you at this time. On the other hand if they came back positive we would have reason to obtain the more sophisticated tests that you do as quoted in a publication we received from Life Extensions in Florida. If all of our testing is negative we would have the full array of testing done in 3 to 4 months to see if there is any movement in the numbers. Does this make sense as we will be discussing this with Dr. Rosenberg shortly? Sincerely, Bob Martino Patient Doris Martino |
Posted By: Carol (Tenn)
Date Posted: Jan 16 2010 at 10:45pm
|
Dear Latricia,
I finished my chemo and radiation in Feb, 2008. In early June I started having burning pains near the incision from my mastectomy. I felt around and found a oddly shaped lump right below the scar. My surgeon suspected that it was a recurrence of the cancer we just got through treating (primary). He did a lumpectomy and it came back positive for recurrence of primary tumor. I am told that in the case of recurrences it usually comes back in the same area as the original. I had very close margins and my tumor was close to the chest wall. Onc feels it was a cell or two hiding out that neither chemo or radiation got. I'm also told that happens...the perfect scenario would be getting all the little devils at one time....leave to me to not be perfect.
By the way, red devil is andriamyacin.
I hope this explanation is clearer than the first.
 If you have any further questions that I might be able to answer to hesitate to ask.
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: Carol (Tenn)
Date Posted: Jan 16 2010 at 10:46pm
|
Oh....secondary would be a metastized tumor....one that spread away from the primary..like lung, or liver etc.... ------------- 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: latriciadawn
Date Posted: Jan 16 2010 at 11:05pm
|
Carol,
What happened after the lumpectomy? Did they make you have radiation? Does radiation even effect TNBC? Did you need more chemo?
|
Posted By: Carol (Tenn)
Date Posted: Jan 16 2010 at 11:22pm
|
I had more rads...now there are some on this site that say you can't have radiation again but my radiation onc reccomended it. The first time I had IMRT...which is kinda like 3D it zaps it from different angles on a largeer area...the second time I had Electron Beam which zaps a small designated area (where the 2nd lump was found.
The oncologist said that more chemo wouldn't do any good, since it didn't get it all the first time.
I think radiation is a vital part of treatment. It is meant to get all the lingering cells. But nothing is perfect...mine cells were allusive...and all it takes is one renegade.
Yesterday I went for a full body CT and bone scans. It's been 18 months since I was diagnosed and with my recurrence, my onc thought it a good idea to check further...I think so too, more for peace of mind than anything else.
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: kirby
Date Posted: Jan 17 2010 at 1:55am
|
[QUOTE=latriciadawn]
I believe this website would be more helpful if it were clearly stated that with TNBC all chemotherapy medicines are not necesssarily effective. With me, the first 4 chemo treatments were the "red devil" (I'm sorry I don't know the technical names yet), and I saw a very significant shrinkage of the tumor. Had I known this then, I would have been looking out for possible recurrence. My oncologist always examined my breast with my bra on and sometimes even with a shirt on over the bra) and I never personally felt my breast those months. I was told I must have a total of 8 sessions, 4 of the red devil and then 4 of the taxol because of "protocol". I just am in dis-belief that my oncologist would have over-looked this lump. Could it be he really knew it was there? Latricia, Being not very adept at computers I got your whole post instead of the first sentence in the quote. Chemotherapy can be a crap shoot with any type of cancer. This is not soimething specific for just TNBC. What may work for one person and their specific cancer may not work for another with the same type of cancer. This is the illusive problem with all cancers. Some cancers do target much better than others. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: SagePatientAdvocates
Date Posted: Jan 17 2010 at 2:28am
|
This has become a very convoluted thread...I am not quite sure where to start but I think I will go backwards...What remains, on my part, is a very strong belief that Bob's thoughts (as presented by Nancy courtesy of Maryjahn), Ms. Bliss's thoughts and Nancy's thoughts all belong in the Alternative Treatment Support section on this forum. This section is found under Support Groups under the heading Alternative Treatment Support. This section was inaugurated in October and I believe was in response to a lot of folks who are interested in alternate ideas to have a forum. To be honest, I went there for the first time tonight and found references to several books, many dietary tips, no radiation suggestions, no chemo suggestions, meditation techniques etc. etc. I have no problem with any of that. Everyone is entitled to deal with cancer as they see fit. As an example there were several studies presented at ASCO re: Vitamin D that were encouraging and perhaps some day it, as an example, will be considered 'standard of care' and who knows the work done by the Greeks and the Germans mentioned by Nancy and Suzanne Somers in her blog may also turn out to be beneficial to our community. First of all I must say to Bob that my heart goes out to you and I admire the dedication you have for your wife's care. Ms. Bliss, Maryjahn, Nancy...my heart goes out to all of you and in fact to everyone here. And a special welcome to Latricia and good luck with your surgery on the 25th. I will try respond to your questions, and some of the answers unfortunately may be depressing, Latricia.. However, I have some major problems with some things that have been said on this thread.. Most troubling to me, if Bob is quoted correctly, is his statement.."The biggest problem with the status quo is false positives and unnecessary surgeries and treatments and I would suggest that you print out this email and keep it handy for yourself or someone you know before you or they get cut or fried." Pray tell, Bob, what would you recommend specifically for the women here and what are your medical credentials for such a recommendation? I find your recommendation, if followed by the women here extremely dangerous. We know that TNBC is a major problem with few ideal solutions but not treating the cancer with chemo, surgery and radiation could be a clear path to disaster much of the time. Bob, Nancy, Ms. Bliss, Maryjahn my questions remain-- -who is the MD Anderson doc who said this is a "huge success"? -where is the statement from the Cleveland Clinic? -where are published, peer-reviewed studies from these companies/labs? -where are the blinded clinical trials to validate their work? and some new ones- -many TN women here do not have metastatic disease (that we know of)..no positive lymph nodes, early Stage TNBC..if there are no "circulating cancer cells" how would they be treated by the German/Greek labs? -where is the evidence that examining a single cancer cell is equal to examining sections of a much larger tumor? -Bob, where are the answers from Dr. Prix to your important questions? The LEF that is shown as a reference is the Life Extension firm, selling what I would call an alternative approach to fighting cancer. They sell supplements etc. and again, anyone interested in their products should be free to look at them on the Alternative Treatment Forum (ATF). By the way, I did some research on Bio-Focus and found http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702337/pg_3/?tag=content;col1 - http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702337/pg_3/?tag=content;col1 http://findarticles.com/p/articles/mi_m0ISW/ - Townsend Letter for Doctors and Patients , http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ - August-Sept, 2006 by http://findarticles.com/p/search/?qa=Jonathan%20Collin - Jonathan Collinwho was pro- BioFocus labs wrote in 2006..."The cutting edge of alternative medicine and cancer treatment: the video every alternative practitioner should see" Has Bio-Focus moved from "alternative" to "mainstream" in the last four years? where is the proof that they have? I believe the Townsend Letter is an alternative publication..If they call BioFocus alternative I think that is what they are and again, the Alternative Treatment Support section of this forum is where the information belongs. Dear Ms. Bliss, I did not knock MammaPrint or Target Now or chemosensitivity, in general. Why did you infer that I did? What I am specifically questioning is what Nancy presented as fact...that two labs mentioned on Suzanne Somer's blog in October have proven techniques. I have asked questions that are unanswered. What I am 'knocking' is telling women here, on the main forum, that the standard of care this community lives under can be replaced...and yes, all here recognize that the current system is deeply inadequate. Scientists/researchers are working hard to improve things for our community and perhaps the work done at BioFocus and others will make important contributions but we need proof. I would actually welcome such proof. But telling women here to go to some clinic, under present circumstances, brings that advice to a different level...and it scares me. Nancy wrote "There are two testing centers for chemosensitivity and it does not have to be trial and error when it comes to which chemotherapy agents will sucessfully treat your breast cancer." Nancy, where is the proof for this statement? A woman joins this forum facing surgery and is basically told "go to Greece or Germany because some unnamed doctor says it's wonderful and don't get cut and/or fried." Is that what this forum is all about? I pray that will never be the case. TNBC is a very difficult cancer. I am totally convinced that many, many brilliant minds, like Drs. Winer and Carey and many others, are working on this problem. I spoke to about 25 oncologists at ASCO. They impressed me with their concern for our community and I believe are completely dedicated to treating TNBC more effectively. It is inconceivable to me that these physicians/researchers would let anyone block a major breakthrough such as a blood test that would determine which chemo would work. They recognize that a blood test, if accurate, would be a nice improvement to neoadjuvant therapy. I don't care how much money has been invested in various chemotherapies...if something vastly better is discovered it will see the light of day. and that brings me to your questions Latricia...There is no precise, effective treatment that works for every case of TNBC. My daughter was diagnosed at age 36 and treated with surgery, and four monhts of AC + Taxol. She is cancer-free five years later. Others here have not been as fortunate while other have. Much work remains to be done. There is no guarantee with any of this. Do you have the ability, even at this late date, to get a second opinion from a medical oncologist regarding your treatment plan? I hope your surgery goes well and my prayers are with you. I hope my thread does not start an unfortunate back and forth..we have had them here before (and they have not helped this forum in my opinion) and that is one reason why the ATF was initiated. I have spent several hours now trying to research the labs mentioned and in writing this reply.. I tried my best to write with the respect I have for everyone here and the love I have for TNBCF. If I have personally offended anyone that was not my intention and I apologize. In an effort to avoid the back and forth I will no longer write on this topic. You are welcome to have the last word. I mean that in a positive way. wishing you all the best, Steve what Nancy wrote- "There are two testing centers for chemosensitivity and it does not
have to be trial and error when it comes to which chemotherapy agents
will sucessfully treat your breast cancer. I have been corresponding
for some time now, with a gentleman whose wife was dx with TNBC many
months ago, and they were trying to decide exactly which treatments, if
any, would be of benefit for her. If the head director at MD Anderson
states that this lab in Germany was a huge success with the testing,
then why is not everyone being told to have this testing? I know that
this is an out-of-the -pocket expense, and 2 women members here have
had the testing.
I wish you well with your surgery, and whatever further treatments you may have to take.
Here are the addresses of the 2 labs.
Research Genetic Cancer Centre
(R.G.C.C.)
P.O. 53070
Florina, Greece
+30-24630-42264
+30-24630-42265 (fax)
E-mail: mhtml:%7bE77B2F5E-9277-4B35-AB0D-6D6257954AE9%7dmid://00000113/%21x-usc:mailto:jpapasot@doctors.org.uk - - prix@biofocus.de" .............. ------------- 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: MsBliss
Date Posted: Jan 17 2010 at 6:22am
|
Dear Steve, I never inferred or attributed to you that you were "knocking" Mammaprint or Target Now. I mentioned them primarily as information for the poster (Latricia) who was seeking info on chemo sensitivity testing. I think tissue testing is superior to serum cell testing. CTC testing can produce a zero cell count at all stages of treatment and that is problematic, plus a circulating tumor cell may be a rogue or a stem cell and that would affect results. That said, for some, it is all that is available if they cannot biopsy fresh tissue. I feel it is anti-science for mainstream oncology to still be reluctant to proceed with this methodology. The concept of chemo testing should have been instituted by now and there is no excuse for that. Every day I see new posters who have been through the worst possible chemo and radiation protocols, only to find out it was not only for nothing, but may well have accelerated their disease. This is medieval. I appreciate your skepticism and your questions-- we must maintain a healthy skepticism about all approaches, but for me that also includes the current model. There is something terribly wrong with it. But I don't think it is fair for you to suggest that this discussion belongs in the ATF. Chemo sensitivity testing is not "Alternative" at all. It is done at Cedar Sinai and at City of Hope, to name two major centers, for many types of cancer. Also, the ATF on this site is in fact a single thread and not a forum. A discussion like this would be too difficult to follow, and this is an important subject. In the 10 months since I was diagnosed, I have learned a lot. I made it my business to find out everything and to be proactive. I also worked in oncology research for two different teams as an undergrad, and I know how to read the raw data. What I learned was that oncology moves at a glacial speed. Promising drugs are bought and shelved by the major pharma cos for various reasons. For example, off the top of my head, there is a drug, Salinomycin, that has been around for decades. It is off patent. It also has a remarkable targeting ability to terminate breast cancer stem cells; tnbc is now thought to be a stem cell based and driven subtype. How many of our tnbc sisters would have benefited from adjunct therapy with it? Will it ever see the light of trial? Have you heard of it at ASCO? Did anyone, anywhere even bring it up? It is curious. It simply disappeared again. It is also not patentable, and therefore, not a block busting money maker. So you see, it is difficult for me to put my total faith in this system. I have seen far too many failures and it scares the juice out of me. The alleged increase in breast cancer treatment success is a statistical relic--it is the result of factoring in the early DCIS cases that would never have fulminated to invasive cancer and would have gone undiagnosed but for aggressive screening endeavors. That is why guidelines for bse and mammograms are being changed. Except for the case with Herceptin, I don't really think we are succeeding with breast cancer in a way that we would like to think we are. Dear Ms. Bliss, I did not knock MammaPrint or Target Now or chemosensitivity, in general. Why did you infer that I did? What I am specifically questioning is what Nancy presented as fact...that two labs mentioned on Suzanne Somer's blog in October have proven techniques. I have asked questions that are unanswered. What I am 'knocking' is telling women here, on the main forum, that the standard of care this community lives under can be replaced...and yes, all here recognize that the current system is deeply inadequate. Scientists/researchers are working hard to improve things for our community and perhaps the work done at BioFocus and others will make important contributions but we need proof. I would actually welcome such proof. But telling women here to go to some clinic, under present circumstances, brings that advice to a different level...and it scares me. |
Posted By: latriciadawn
Date Posted: Jan 17 2010 at 1:12pm
| May God bless you, Steve, Ms. Bliss, Nancy, Carol, and others that are all encouraging me and definately making me feel like I am not alone in this or forgotten. May God give each of you wisdom and insight in all of this. Thank you, for your advice and prayers, Steve. I hope to begin phone calls on Monday. Unfortunately, I have Medicaid, and I fear that will be a hindrance. It was suggested that get my second opinion at Vanderbilt (my daughter lives an hour or so away). So, hopefully, they will listen to me (Medicaid insecurities here) and allow a 2nd opinion. I would hope that I could get something going perhaps before my surgery on the 25th. Some are saying they can't believe the breast wasn't taken off at the onset of the dx. This has been a year now since I first saw a lump. Why is it there are such vast differences of opinions regarding the timing of the chemo/rads to be done before surgery or after surgery? Still just so unbelievable. |
Posted By: SagePatientAdvocates
Date Posted: Jan 17 2010 at 2:29pm
|
Dear Latricia, Thank you for your kind words. My heart goes out to you. There are 21 outstanding cancer centers in this country. They comprise the National Comprehensive Cancer Network (NCCN). In order to get a NCCN designation there are very rigorous standards that must be met. Vanderbilt is one of the centers. In an ideal world you would be able to get an opinion from them and possibly have your surgery there. I fully understand that Medicaid is not an ideal world. http://www.nccn.com/vanderbilt-ingramcancer.aspx - http://www.nccn.com/vanderbilt-ingramcancer.aspx If there is anyway that you can quickly get an opinion there I think you would get some clarity in your treatment path. I was going to write the following last night but decided against it but I feel, today, that I must write you and hopefully you will take what I am writing as a supportive statement rather than an unhelpful statement. Your description of being examined through your shirt made me so upset. No competent breast exam is ever done that way. PLEASE try to go to Vanderbilt, even if it is just for a consultation. I know time is short. I would just like expert breast oncologists to give you their input. I recognize this may be mission impossible but if Medicaid says no maybe somehow your family can chip in? Lartricia, in my opinion, this trip to Vanderbilt could be extremely important for you. I hope, somehow, someway, you can get it done. I hope I have not written too strongly... Your story has deeply touched my soul. I feel your agony....and at the end of the day there is no "perfect" in the TNBC world...but you may have a better result if you get good advice. and we will always be here for you.. you are in my prayers. in your corner, 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: Laura41
Date Posted: Jan 17 2010 at 2:35pm
|
Hello everyone, Latricia,
I was dx 10/2009 @ 41 years old with IDC TNBC, Stage II, Grade 3, BRCA1+ primary right breast cancer and having treatment in London, UK. I am not from UK, so I needed to actually temporarly move here for the treatment and further surgery.
Since diagnosed, I am having Chemo AC x4 plus Taxol x4 on dense dose bi-weekly prior to surgery, like you Latricia as well. I had done already the AC x 4 and after these four doses, my tumors have shrinked from 3.1 cm (both tumors in right breast very close to each other) to 1.1 cm (all together). I have had the third Taxol last week, and, like you, I haven't been offered another ultrasound scan, which is quite dubious. The onc recommended double mastectomy because of my BRCA1+, and the surgeon said that as long as I am having double mastectomy anyway, another scan wouldn't really help at this point. I indeed disagree with him, and will soon do an ultrasound again to see if there is any progress. The surgeon said that we'll just have to see how the histology (or pathology) report comes out after surgery. My surgeon also is planning to do an immediate reconstruction of my both breasts with expanders in preparation for silicone implants, saying that if I'll need radioterapy after mastectomy, then this is also possible even if reconstruction was done. I have my doubts, but I'll just have to decide ...
What I can say from the last 5-6 weeks (when I was on Taxol), is that I don't feel any improvement in my lumps, and I can only feel hurting some time in the area, also under the armpit. In other words, I cannot say if Taxol works for me, but definetelly the AC did.
We are Latricia having the same treatment and we should talk more often.
This chemosensitivity testing seems logical, but does anyone know if they also do it in UK?
Good luck Latricia with your surgery end January.
Best,
Laura
dx. 10/2009 @41, IDC TNBC, Stage II, Grade 3, 3.1 cm lumps in right breast, lymph node affected, BRCA 1+, having Chemo prior to surgery AC x 4 plus Taxol x 4 dense dose bi-weekly (one more Taxol to go)
|
Posted By: mainsailset
Date Posted: Jan 17 2010 at 3:33pm
|
Not to upset the applecart here...but I oftentimes think we are all so passionate as we strive to find the elusive knowledge that will give us a cure, that we put the cart before the horse.
The horse in our instance is the research. The cart carries the burden of our disease. That said, what I see happening in this thread and others is we post information or opinions or even hearsay and there is a distinct lack of links that take the discussion back to the basics so that it is on a solid foundation for us to add our experiences and fears to.
So, respectfully (and I include myself here) it would seem helpful for all of us to make a bigger effort to find links to research and articles to back up what we post and then for members to make sure they read from the links.
It's a tough business this having cancer stuff and this site is extraordinary in its knowledge and support, perhaps a tweek or two on research can make us even better. Thanks everyone. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: caro36
Date Posted: Jan 17 2010 at 4:58pm
|
Hi,
Just a quick thought on the MammaPrint test. My oncologist in the Netherlands was on the team that developped this test. If you have the test, the outcome is either "high risk" or "low risk" for metastatis or recurrence. She found that with TNBC the outcome was "high risk" in 96% of the cases.
She advised me to skip the test and added chemo to my treatment plan.
The Mammaprnt is now offered to women in 20 hospitals in the Netherlands (small country) and many other hospitals are working with it on a trial basis. It is fda approved.
For more information: http://www.agendia.com/pages/about_mammaprint/75.php - http://www.agendia.com/pages/about_mammaprint/75.php
Last year when i was diagnosed I e-mailed the agendia company and they arranged a consultation with a/m oncologist. I never took the test but they have been extremely helpfull to me finding the information I needed.
When it comes to alternative treatment, I still think that this topic deserves a seperate forum instead of a long thread in the support group section. Eventhough I'm not very open minded to alternative treatment. But for those who are, there should be a better place to talk about it.
So just posting to share information and support.
Stay strong!
Hugs from Holland,
Caroline ------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: MsBliss
Date Posted: Jan 17 2010 at 6:27pm
Just a quick note regarding MammaPrint....some of the 70 gene fragments or snips tested by MammaPrint reveal information, or clues as to tendencies within the subgroup. I have met two patients who's oncologists accessed this info for treatment guidelines. I don't know if it helped but I do know that one of the patients was directed to a trial as a result.
|
Posted By: Kerry OK
Date Posted: Jan 17 2010 at 9:18pm
|
Hi to all,
Today is my first day to post anything about my Breast Cancer. I was diagnosed with Breast Cancer on November 11, 2009. I had a lumpectomy on November 27th. The results were Stage 1 Grade 3 invasive ductile Triple Negative Breast Cancer. The tumor was <.5 with negative sentinel nodes. My oncologist recommended radiation only. He attended a BC conference and discussed my case. There was a split decision on whether or not to do chemo. I go for a second opinion on Monday the 18th. I would appreciate any feedback on similiar cases.
Thank you,
Kerry OK
|
Posted By: scared
Date Posted: Jan 17 2010 at 9:44pm
|
Hi Kerry, I am so sorry for you and your breast cancer, I know what it is to walk the journey you are on because my wife has had breast cancer. Being triple negative the traditional methods of fighting cancer are a combination of chemo, radiation, and surgery. Our case was more straight than yours, there was a unanimous decision on the course of action we should take that gave us the BEST survival rates so that is the path we took. I would listen to the second opinion and go for the option that was best for you. Stage one breast cancer survival rates are excellent as I recall it is about 95% at worse. So, I would weigh what the percentage would drop to without chemotherapy and then with it. If the percentage rates would still be over 90% then I would not do the chemotherapy. If there were any doubts that without doing chemotherapy the cancer could return then I would do all I could do to eliminate it once and for all then not worry about it coming back because you did all you could do. I know how harsh chemotherapy is since my wife did 27 weeks of it with three kinds of agents. This is a tough question and please let us know what the second opinion says. Our case is different than yours but we both have the same goals and that is to survive! So, I wish 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: caro36
Date Posted: Jan 17 2010 at 9:57pm
|
Hi Kelly,
So sorry for you.
I think my case was similar to yours with a .6 mm tumor and negative nodes. My oncologist didn't think chemo was necessary. The 2nd opinion at a cancer clinic was different. Because it was TN combined with my age they though to fight this aggressively. I chose to do chemo.
I know it's a very hard decision to make.
Big Hug,
Caroline ------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: SagePatientAdvocates
Date Posted: Jan 17 2010 at 10:32pm
|
Hi Kerry, welcome to TNBCF...it is a wonderful resource, in my opinion. It is extremely difficult for the patient when oncologists disagree...There is no 'magic' here from my experience..just educated guesses, sometimes presented factually and forcefully but as you have seen there can be differences of opinions.. I have some questions (and do not feel obligated to answer them...just would help to know) how old are you? do you have a family maternal history of breast/ovarian cancer?..if not, any cancer on your dad's side? has anyone mentioned genetic counseling/possible testing for the BRCA mutation to you? did you have FISH testing, as part of your pathology report, done to determine if your HER2/neu was negative? Is it possible for you to go to MD Anderson in Houston for a third opinion (if they are not the second)? whatever path you take...I wish you luck and you shall be in my prayers.., 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: MsBliss
Date Posted: Jan 18 2010 at 1:26am
|
It might be helpful to use more info for your "tie breaker". Some other features to reference are: What was the location of your tumor--was it under or adjacent to the nipple, or very close to the axilla, or very close to the chest wall? (which would increase risk). Did your tumor have abundant lymphocytes, synctial sheets, or a well defined boundary? (this would be favorable). Have you had a Breast MRI to determine if there are any other masses or DCIS?
|
Posted By: Kerry OK
Date Posted: Jan 18 2010 at 9:49pm
|
Thank you so much for responding to my post. Since I am so new at this change in my life, I still don't know all of the terms people use--so bear with me. Today I went for the second opinion. He said to just do radiation since it was so small. So I called my first oncologist back and talked to his nurse. Then she said after doing more research on TNBC, he is leaning toward chemo and radiation both. Now I really am all mixed up!
Dave, do you know the magic formula to figure out the survival rate? That would really help me.
Steve, I am a white woman 53 years old. There is no cancer on my mom's side at all. The only cancer on my dad's side is in my 80+ year old aunt, who did nothing about it and is still living.
Could you tell me what a FISH Test is? I was HER2 negative also. We are considering going to M.D. Anderson in Houston. How do we go about doing that. Does a doctor have to give a referral?
MsBliss, My tumor was very small and located way back in a milk duct (near my armpit). It was barely even on the mammogram screen. I did have a breast MRI and it showed me to be clear.
I appreciate any and all information from you.
May God Bless you all,
Kerry ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: 123Donna
Date Posted: Jan 18 2010 at 10:16pm
|
Kerry, With your tumor being small, there may be no clear cut decision on treatment. Some believe that any portion of tnbc that is invasive, no matter how small, should be treated with chemo. It's good that you went for a second opinion. I understand how confusing it is with getting different opinions from different doctors. If you're willing, another opinion from MD Anderson may help you decide on your course of treatment. Steve and/or Donna Z from this forum may be able to suggest an oncologist. There also may be others who've received treatment from MD Anderson that will offer suggestions. Keep us posted on your treatment. http://www.adjuvantonline.com/index.jsp - http://www.adjuvantonline.com/index.jsp ------------- 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: SagePatientAdvocates
Date Posted: Jan 18 2010 at 10:35pm
|
Dear Kerry, My apologies for using abbrevations... I attended a seminar a few months ago and Dr. Press (please see below) spoke about FISH. The main point he made was that 10-15% of the time a HER2/neu negative result is really HER2/neu positive which enables the woman to get the drug Herceptin which has helped many women. The extra test, from what I understand is expensive and many people are not aware of it. I introduced a woman whose tumor was determined to be HER2/neu negative, without FISH testing, to an oncologist I respect and he sent her slides to Dr. Press for a second opinion. Dr.Press's lab used FISH and the result was that she was HER2/neu+ enabling her to have Herceptin. She is now in remission and I have never forgotten that experience and mention it often on the board. Probably, too often for some but I feel it's really important.The following is from an article in Medical News http://www.medicalnewstoday.com/articles/171736.php - http://www.medicalnewstoday.com/articles/171736.php "The debate on how to select patients who will respond best to costly drug treatments for aggressive http://www.medicalnewstoday.com/articles/37136.php - breast cancer now favors fluorescence in situ hybridization (FISH) to measure the HER-2 receptor found in human breast tumors, according to a leading pathologist presenting at the Association for Molecular Pathology annual meeting. Michael Press, M.D., Ph.D., pathologist and Harold E. Lee Chair in Cancer Research, Norris Comprehensive Cancer Center, University of Southern California, told a symposium audience that a growing body of research in recent years demonstrates that FISH technology is an accurate, reproducible and predictive diagnostic method for testing women with breast cancer who are candidates for drug treatments targeted to the HER-2 tumor receptor. The drugs are http://www.medilexicon.com/drugs/herceptin.php - Herceptin ® (trastuzumab) and lapatinib. His remarks were presented at a symposium sponsored by Abbott Molecular. " Regarding M.D. Anderson, I believe you can self-refer. http://https://www2.mdanderson.org/sapp/contact/selfreferral/index.cfm - http://https://www2.mdanderson.org/sapp/contact/selfreferral/index.cfm Kerry, I would be happy to walk you through the form if you like. I am sending you a PM with my contact info if you would like to talk..I am happy to help you. Please recognize, though, that I am not a medical professional and will never give you medical advice. good luck to you, 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: latriciadawn
Date Posted: Jan 18 2010 at 10:40pm
|
Hi Kerry,
I'm Latricia, and I too am a "newbie". I was surprised to read that you were white and 53. I too, am white and 53. I wrote about my situation a few blogs before yours. Our stories are different, but we do have the triple negative, in common. I think it's interesting that they say the majority of TN people are African-American, young, and pre-menopause. I have been post menopause for 11 years. I have suspected that was part of my reason for Ca. I had been on a bio identical cream with a small amount of estrogen for about a year before I was diagonosed with TNBC. My theory was the estrogen. I also have never handled stress well. I have never smoked or drank, and I think, honestly, that may have been to my disadvantage. Seriously!
Well, may you have wisdom on the decisions you have to make. God bless you, Latricia
|
Posted By: LRM216
Date Posted: Jan 19 2010 at 12:11am
|
Latricia, I think you will find many of us on this board are also white and are triple neg. In fact I have three black friends from work who also are breast cancer survivors and I am the only one of us with triple neg!!!! I am 62 and postmenopausal as well, no cancer on either side of my family whatsoever. Go figure!
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: maryjahn
Date Posted: Jan 19 2010 at 1:54am
|
I don't think TNBC cares what color your skin is--I am 50, white, no breast cancer in my family, pre-menopausal, no lymph node involvement and I have 3 tumors, one which is attached to my chest wall. I started out in September as stage 1, by my biopsy I was stage 2 and by my MRI I was stage 3, well differentiated tumors all. I have just had my third treatment of chemo (Taxotere and Cytoxan) and they are shrinking rapidly. I have my 4th chemo on the 1st, see the surgeon on the 4th right after my ultrasound, and they will do a skin saving mastectomy, radiation and eventually reconstruction. TNBC is incredibly aggressive and my doctors are treating it agressively.
By the way-The chemo has been bearable because I have been using complementary medicine--Most people tell me how great I look and would never know I had cancer. Chemo scared the hell out of me and now, for me, it's like signing up for a bad flu once every three weeks. I am glad I did it and incredibly grateful that it is working.
P.S. I had an incredibly stressful job and I was completely unable to handle the stress towards the end when I was diagnosed in late September, but I believe this was also hormonal and thyroid related. My stress was so bad I thought I was going to have a nervous breakdown! I hadn't slept in months and none of the doctors could figure out what was wrong with me until I found my first lump.
|
Posted By: 123Donna
Date Posted: Jan 19 2010 at 7:57am
|
Latricia and Kelly, At the Living Beyond Breast Cancer website, you can download a .pdf of the new brochure on Triple Negative Breast Cancer or order the brochure. http://lbbc.org/content/news/lbbc-releases-new-brochure-on-triple-negative-breast-cancer.asp - http://lbbc.org/content/news/lbbc-releases-new-brochure-on-triple-negative-breast-cancer.asp ------------- 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: LRM216
Date Posted: Jan 19 2010 at 11:28am
|
LOL! Sounds just like me - never stopped working (widow, raising my 14 yr.old grand-daughter - who could quit!) - no one could believe I was ill, much less going through chemo, Neulasta shots, shock, depression, etc., etc. Good thing they couldn't see underneath the outer shell! My poor body never hurt so bad in my entire life as when I was going through chemo and those bloody Neulasta shots were even worse than the chemo! I found bones and muscles I never knew I had!!!
------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: dmwolf
Date Posted: Jan 19 2010 at 12:07pm
|
Latricia, most women with TNBC are white and over 50. African american women diagnosed with cancer are still more likely to be ER+ than TN, but they are more likely to be TN (about 35%) than are white women (about 15%). The same goes with youth. Young women are more likely to have TN than older women, but women of any age are more likely to be ER+ than not. So what you see is a skewing of the proportions as you move from cancer subtype to subtype, but still, since most US women with cancer are white and over 45, most TNs are white and middle aged or older too. Does this make sense? It's a common source of confusion here, the 'average' 50ish white BRCA-neg TN woman thinking she is an unusual case instead of typical. Not that it matters, but we might as well get it straight. Plus, we feel 'negatively chosen' enough in having cancer at all. We might as well not add to that feeling by imagining rarer circumstances than actually exist. The true outliers are extremely young women (under 35) of any color, with any type of breast cancer. The rest of us are middle of the pack, no matter how we feel. -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: kirby
Date Posted: Jan 19 2010 at 2:06pm
|
Denise,
You are so great and concise with your explanations. This has made "all those numbers" so much clearer. And really makes one aware of listening to the entirety, searching it all out, for the bigger picture often isn't given. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: MsBliss
Date Posted: Jan 19 2010 at 4:32pm
| Thank you Denise....still, every onc I went to see, and I met with 8 of them, even have one in my family, plus a family friend who is an onc, had only a handful of triple negative patients. I realize that the moniker of tnbc is relatively new, but, I still felt isolated. They all agreed on the recipe--no one wanted to use A on me, just TC, but, they had no "confidence" in any approach at all. It was unnerving. |
Posted By: kirby
Date Posted: Jan 19 2010 at 5:42pm
|
Miss Bliss,
Your experience wouldn't be far off the mark from Denise's explanation. Overall, TN makes up 10-15 % of dx breast cancer. Of those, that is were Denise gets her #'s. So overall. in the big picture, it still makes for smaller #'s. This is why most of us have felt isolated.This is were we could drive ourselves crazy with #'s and stats.
Thanks for this forum. It has made our world seem so much larger. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: unklez
Date Posted: Jan 20 2010 at 7:13pm
|
I will say that: We are not a statistic.... and just because chemo is the only available systemic therapy available to us does not mean it is a bad thing. I'd much rather we had less options but even more effective and targeted ones. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: latriciadawn
Date Posted: Jan 20 2010 at 10:53pm
| Well said, Kirby. This forum does make our world seem larger. Thanks all of you for the info. Do any of you know if chemotherapy is ever repeated after using it for those with TNBC? If, recurrence happens, after remission, do they attempt chemo again, perhaps a different kind of medicine? Just curious. |
Posted By: dmwolf
Date Posted: Jan 20 2010 at 10:59pm
|
Oh yeah, big time. Chemo after chemo, it's a real drag. But we all want to live as long as possible as well as possible, so there you have it.
------------- 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: Carol (Tenn)
Date Posted: Jan 21 2010 at 9:15am
|
Denise, I had a recurrence in the same area as my primary. Chemo was not recommened. Wonder why? Is it because the first round didn't do what it was supposed to do? If I get a met somewhere else, is that when you get another shot at chemo, like lungs, liver, etc? ------------- 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: latriciadawn
Date Posted: Jan 21 2010 at 10:52am
|
Good question, Carol. That's along the lines that I was thinking. I have my surgery on Monday and I am shocked at how fast this cancer is growing. It is the most discouraging thing to have gone through 8 chemo sessions (last one was on the 28th of Dec.) thinking all is well, and then 2 weeks later me seeing the lump on my breast, not feeling it, and it has gotten much more painful as the days go by. I made an appt. with my onc and saw him a couple of days ago. He so "down-played" the whole thing. All he would say is it is at least 50% smaller than the original lump. He never would admit that he either, over-looked the lump, didn't know it was there, or that he was ignoring it, knowing surgery was coming up....
I am just praying it's not already threatening the chest wall. The lump has grown from just two days ago when I saw the onc. At that time he felt it was not threatening it. I never knew I would be so anxious to have a dbl/ mast.
|
Posted By: maryjahn
Date Posted: Jan 21 2010 at 11:59am
| My oncologist told me to schedule my surgery immediately following my last chemo--chemo the 1st, meet with surgeon on the 4th. I know exactly how you feel. It seems as if everytime I have chemo, 3 weeks go by and it starts to grow again only to be knocked out by the chemo again. I just want the cancer out of me. It's crazy making. I just hope the radiation takes care of the lump attached to my chest wall. |
Posted By: Carol (Tenn)
Date Posted: Jan 21 2010 at 12:25pm
|
Denise, Pam, Steve, Unklze, and many more do a lot of research. They can usually answer most questions or send you to a link that can.
I had surgery first then chemo and rads. My tumor was relatively small (barely 2 cm.) I think larger ones are treated first then surgery and rads.
Latricia, when is surgery?
------------- 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: latriciadawn
Date Posted: Jan 21 2010 at 12:37pm
| My surgery is this Monday, the 25th. I was stage III aggressive. According to the way my onc. was responding to the examination each time before the treatment, I was never told by him that it was increasing in size. Ever. I have learned my lesson to never put my full trust in a doctor. I personally had such an unnerving feeling whenever I felt my breast after my lump was first discovered. I was foolish to have never examined my breast during my last 4 treatments. Not that that would have mattered. I am beginning to think, my onc was gonna do the protocol of 8 sessions regardless. I never saw my tumor increase in size until two weeks after the last chemo, and it was protruding from my chest. |
Posted By: Carol (Tenn)
Date Posted: Jan 21 2010 at 12:48pm
|
Latricia Dear,
My prayers are with you now and Monday for sure. Like I said, I don't know much about chemo before surgery. I have learned, through this site, that you have to be your own advocate. I wish I had known what I know now before my treatments. But there was a period where I didn't want to know anything and that was foolish. As it turned out, there because of the Grace of God, I am doing good. NED as of yesterday when I got the results from my scans. God has a way with taking care of us when we can't take care of ourselves.
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: latriciadawn
Date Posted: Jan 21 2010 at 12:50pm
| Thank you, Carol. |
Posted By: TNBC_in_NS
Date Posted: Jan 21 2010 at 3:07pm
|
Well said Carol!
Latricia there have been many on this site who have had chemo before surgery and I wish I had known that too! I had the surgery, then another surgery for staph infection, then chemo & radiation. I am sure the others will respond to you soon.
I wish you well on your surgery monday and will keep you in my prayers. As Carol has said "God does take such good care of us, when we know not how".....
God Bless, 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: beachgirl6
Date Posted: Jan 21 2010 at 4:48pm
|
Leticia
There are many chemo cocktails out there to try. I've done TAC (6 rounds) and was told that taxotere is more successful with TNBC than taxol although they are "cousin" drugs or "sibling" drugs whatever the saying is. I have also done avastin and xeloda. The avastin works on the blood vessels that feed the tumor cells. I have just finished gemzar and carboplatin. I've read alot of research on carboplatin that it appears to work well with TNBC. I've also been told that TNBC works well with chemo and that chemo is our best bet.
Putting that aside I have also done radiation for 6 weeks due to my cancer being inflammatory BC. Yup the studies do show a higher number of TNBC being African american but I think thats just old stats. I seem to be meeting more and more triple negs everyday. The one thing in common is all were on the younger side when intially diagnosed and all pre-menopausal although now we've all seemed to hit menopause with the dramatic entry of chemo in our lives. Another thing that cancer destroys in the process.
I've had the circulating tumor cell test multiple times. It works for some and not for others. I'm one of the ones it doesnt work with. I had it Nov 08, Feb 09 and then again June 09. All three times my score was 0 and the doctors raved about it. Funny thing though my May 09 PET showed the cancer had returned to my supraclavicular node and the Sloan second opinion seemed to think that it was there just microscopic the whole time. So although alot of good news on CTC tests its just one tool in the tool box and may not work for everyone. Still in all, something I think should be done as one of many tests to predict what is going on in our bodies.
I have also had my biopsy sent to Precision Therapuetics for examination. The idea was to grow the cells and then zap them with a variety of chemo cocktails to see what worked. This is new and cutting edge. It works for many people. Of course, just my luck it did not work for me as they did not get enough of a sample to be able to grow it. So is that good that the sample they got was so small there wasn't enough to do the test? Was it good that it couldn't grow...maybe that says its not a grower. No idea and it will be a long time before anyone will truly know the reasons why behind some of these tests and results.
The bottom line is something a friend said to convince me all was worth doing. Its another arrow in the quiver to throw at the target. I try to keep that in my thoughts. Do all that is possible and there will be hope. Hard to be hopeful all the time and there are many times that there is no hope to be found on a given day. Still, at least at the end of the day you can say you tried all that was available at a given time.
So my suggestion for what it is worth is find out if they can send some of the biiopsy tissue to precision ther to be grown. Maybe it will work, maybe it won't but its worth a try if it can grow and they can find out what cocktail will work for you. Get the CTC done in addition to the other tumor marker tests, Scans, etc. Together they will present a picture. Something has to work in the aresnal to give some guidance to what can help.
I wish you well. This site is informative and the people all good intentions. Sometimes you just need to vent and those fellow cancer patients can truly understand our frustrations as they have all been there done that. Many are very informative. At a minimum its a great sounding board for ideas and questions to ask the doctor. Sometimes I can come out with questions the doc didn't think I would ask or even understand. I ended up getting a super long consult with a doc at Sloan because I knew the terms and he could talk "medical" with me. I walked away with alot of information and for a momeent felt in control. I'd take a moment of control over any of this uncertainty that we live with.
Best wishes,
beachgirl
|
Posted By: latriciadawn
Date Posted: Jan 21 2010 at 5:02pm
|
Thank you, beachgirl for all of your advice and support. I will look into the precision therapeutics, thing, for sure.
Latricia
|
Posted By: dmwolf
Date Posted: Jan 21 2010 at 5:19pm
|
Carol, I don't know what the typical protocol is for a local recurrence like you had, though over time I've observed that at least some women with a local recurrence have more chemo. Did you go for a second opinion on that? (not that anyone wants more chemo!...but who knows, you might have been convinced). I don't know any of the stats/research on this, unfortunately, but if I run into anything I'll let you know. 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: Carol (Tenn)
Date Posted: Jan 22 2010 at 12:05am
|
Denise,
No, I didn't get a second opinion but you can bet your bippy if it comes back I certainly will.
Thanks
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: scared
Date Posted: Jan 22 2010 at 7:52am
|
I copy and pasted survival rates for breast cancer, after reading the request for it: ------------- 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: SagePatientAdvocates
Date Posted: Jan 22 2010 at 8:55am
|
Dear scared, Thank you for the information and it may very well serve as a guideline for some folks who have breast cancer. However, research done in the last few years has shown that breast cancer is six different diseases, not one, and until specific research is done on each type of breast cancer, I think generalized figures may not be accurate for everyone in our community. The problem is that TNBC, is all too often, a different, more aggressive beast than other types of breast cancer. It is my understanding that TNBC is overwhelmingly of the basal type and there have been a number of threads here about that type of cancer. The good news is that often TNBC can be very responsive to chemotherapy; the bad news is that, all too often, as we have seen here, it is not. Hopefully new drugs, such as parp inhibitors, if approved, will make an important difference to our community in years to come. From what my daughter was told the 5 year survival mark was a very important accomplishment. This August will be six years for her and recently her docs told her that they would see her for surveillance purposes once a year, instead of every three-four months. My prayers remain for her and all here. From the article- Forms of the disease * Luminal group – 40 per cent of total (three types). These are oestrogen-positive and respond to hormonal treatment (Tamoxifen and newer aromatase inhibitors). Two of the three have the best survival rates with 90 per cent of women living at least 10 years. The third is not as good. * Basal group – 13 per cent (two types). These tend to be more aggressive and need a more aggressive response. They are treated with high-dose chemotherapy. * HER2 positive – 7 per cent (one type). This has the poorest prognosis – 30 per cent of patients died within four years, before the introduction of the new drug Herceptin. * Unclassified – 40 per cent. These cases are the hardest to treat because the best treatment is unknown. 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: LRM216
Date Posted: Jan 22 2010 at 9:07am
|
Steve - my oncologist would agree with you. The blanket survival rates, while still on statistics, do not apply across the board to triple negative cancers. While many women do go on to survive triple neg, because we have a much earlier recurrence rate, we do not fall within those statistical guidelines that Scared posted. (This is from my onc, not me.)
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: dmwolf
Date Posted: Jan 22 2010 at 1:03pm
|
Yup, those numbers are for everyone lumped together, not for us. Subtract about 10-15 percentage points across the board and there we are. Though as you guys point out, if we make it to 5y without relapse, we are more likely than our ER+ sisters of being NED for good. -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: latriciadawn
Date Posted: Jan 22 2010 at 2:19pm
| Denise, what does NED mean? |
Posted By: Carol (Tenn)
Date Posted: Jan 22 2010 at 3:54pm
|
That would be No Evidence of Disease = NED
That's who I danced with when my scans came back clear!!! ------------- 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: latriciadawn
Date Posted: Jan 22 2010 at 4:20pm
| Thank you, Carol! |
Posted By: spunky1
Date Posted: Jan 22 2010 at 6:24pm
| Thank you so much to the founders of this website!! I have visited this site often, but never posted any info. But when I saw that my friend (Angellts) posted a question on my behalf, I decided that it was time for my participation. I am a triple negative stage IV survivor who has been fighting this ugly war for almost 4 yrs. Unfortunately, Taxol did not work for me either. I wanted to suggest another drug combo that I have never seen posted before which shrunk my tumors for about 6 mos. It is Erbitux, Ironetecan and carbo. I hope this helps some women. Hope that you all continue the fight, as I intend to. I have a 5 yr old that keeps me going!!! |
Posted By: 123Donna
Date Posted: Jan 22 2010 at 7:13pm
|
Spunky1, Welcome and so glad you joined. Please keep us posted on your journey and treatments. 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: latriciadawn
Date Posted: Jan 22 2010 at 8:12pm
| God bless you, Spunky. I appreciate the tip on the combo. The taxol didn't work on me. I will pass this on to my doctors. |
Posted By: LRM216
Date Posted: Jan 22 2010 at 9:04pm
|
Welcome, Spunky. It is nice to have you here and to meet you. While I hate it that you have been fighting this beast for 4 years, Stage IV, you are an inspiration to me, and I am sure all the others on this board as well. Just want you to know you have just united with a whole bunch of sisters (and brothers) that welcome you with arms wide open.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: TNBC_in_NS
Date Posted: Jan 22 2010 at 9:11pm
|
Welcome Spunky1.....
It is good that you found us, we are here for each other and you truly are an inspiration to all of us here on TNBC Foundation!! Keep up the great work, because it is hard work to stay healthy. Big hugs to your little one and big, big hugs to you!  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: Kerry OK
Date Posted: Jan 22 2010 at 9:36pm
|
There are Angels among us!! We are going to M. D. Anderson 1/26/10. ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: Carol (Tenn)
Date Posted: Jan 22 2010 at 10:25pm
|
Dear Kerry,
Welcome to the best site on the web. So many caring, loving, supportive, knowledgeable people here.
Also, please come join us on our Spiritual Support thread if that is something you might want. And Yes, there are angels among us.
Is this trip to MD Anderson a new thing. Tell us about it.
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: Carol (Tenn)
Date Posted: Jan 22 2010 at 10:31pm
|
Dear Spunky, Welcome and so happy you joined us. It's not so good that any of us have to be here. But thank God it's here for us strong fighting women (and men).
Let me also invite you to visit our Spiritual Support thread. We have daily scriptures and a place to ask for specific prayers. We have an abundance of prayer warriors there.
You can go to the control panel, (button at left top of this page) then to edit profile and at the bottom of the page is the signature where you can type in your stats and they will posted at the bottom of your posts just like ours.
Again welcome,
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: SagePatientAdvocates
Date Posted: Jan 22 2010 at 10:46pm
|
Dear Spunky, welcome to TNBC Foundation....it is a wonderful resource... I live in Los Angeles...have you see a Dr. John Glaspy at UCLA? I think he is a smart oncologist and very familiar with breast cancer. If you would prefer to send me a PM please feel free to do so. Are you eligible for any of the PARP trials? in your corner, 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: kittycat78
Date Posted: Jan 28 2010 at 5:29pm
|
Hello,
Wow! I am afraid now. I start my chemo next Thursday and I am on the same regimens. My lymph nodes were negative, but my veins had been compromised. The doctor said he did not know whether or not any cancer cells had escaped, but I have had an MRI, Bone Scan, and Ct scan. The scans were clear except the MRI showed small tumors in the same breast as the IDC, but the tumors were not invasive yet. So I opted for the bilateral mastectomy even though the other breast was clear. How will I know if the chemo does not work? I am new to this site and I had no idea that triple negative breast cancer was worse than positive.
Thanks,
Amy ------------- IDC/TNBC/StageII/ Lymph node negative/Lumpectomy/5 cm tumor with positive margins/ Bilateral Mastectomy/ Nuclear Grade 3/ upcoming Red Devil 5 doses/ Tax five doses/ 10 Weeks Radiation/ 31 years old |
Posted By: Kerry OK
Date Posted: Jan 28 2010 at 10:54pm
|
kittcaty78,
We just got back from M D Anderson in which we saw Dr. Gonzales. She helped put our mind at ease, since we had been given conflicting advice. Her advice was to do 12 weekly treatments of taxol, followed by 4 treatments of a stronger chemo every 3 weeks, for a total of 6 months. Then 6 weeks of radiation. This was different from 2 other local oncologists. She seemed so confident.
Our trip there was very rewarding. We met many wonderful people. The entire process was overwhelming, yet everyone was so helpful and concerned. Thanks to those who made our trip possible.
Amy, I can't tell you not to be afraid, but talk to as many people as possible. There are many caring people out there. Hopefully you have family and friends to support you. Good Luck.
Thanks to ALL
Kerry and Brad
------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: MsBliss
Date Posted: Jan 29 2010 at 1:10am
|
Dear Kerry, You have a tumor less than .5 cm and clear nodes, clear lymphvascular invasion, no dcis, no angio invasion, and they are still recommending chemo for 6 months? Was the tumor well defined too? Or was it spiculated at all? Are there other features besides being tn that indicate extreme aggressiveness? Also, how did you find such a small mass? That is amazing.
|
Posted By: Kerry OK
Date Posted: Jan 29 2010 at 11:48am
|
MsBliss
It was found on a mammogram. The tumor was not well defined, the largest area was .2cm and they said they don't add up the total of all the parts, which would hve made it right at .5 cm. It was invasive and we were told that it was very aggressive. I just don't this to come back. ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: LRM216
Date Posted: Jan 29 2010 at 11:52am
|
Are you sure you don't mean .5 mm - or was it a large tumor at 5 cms? I never heard of a .2 or a .5 cm nodule. I may be incorrect, as God knows, I learn something new about this beast every day!
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: mainsailset
Date Posted: Jan 29 2010 at 12:03pm
|
A copy of the path report would certainly be handy....just sayin ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: spunky1
Date Posted: Jan 29 2010 at 8:29pm
|
Thank you everyone for your support! You are all inspirations to me as we all battle this dreadful disease. I saw a Dr. at Cedars Sinai yesterday and he believes the PARP inhibitor is the wave of the future for triple negative breast cancer. I also just received an email from a friend who works at Astra Zeneca. Olaparib is going into PHase 3 trials. So hopefully it will get FDA approval within this year. I think everyone who is triple negative should get the opportunity to try this drug.
Until then, I am going to try Doxil and Cytoxan in the pill form. Has anyone tried this combo yet??? The gem/carbo with avastin combo worked the best for me, but eventually stopped working. Take care of yourselves!!!
|
Posted By: latriciadawn
Date Posted: Jan 29 2010 at 8:58pm
|
Latricia here. I have had my bil/mast as of Monday, the 25th. All of my lymph nodes have been confirmed negative so I am so thankful for that! I was the one that "saw" a large lump on my breast 2 weeks after I had completed the protocol of 8 chemo sessions, first 4 the red devil, the last 4 taxol. I was questioning if the taxol ever works on those with TNBC. My surgeon is trying to decide on if I should have chemo or radiation. He said he keeps away from the rad as much as possible. I'm relieved about that. I have never had peace about radiation. I am praying he will know the kind of follow up that's necessary. He did take out a part of my muscle, and the red part of my skin that was over the tumor that grew back. I am doing very well with the recovery part of this surgery. I only had to have one tube on each side. I am pretty small on top, I think that may have had something to do with that. Not sure though. I appreciate seeing the different chemo cocktails recommended due to experience from some of the fellow TNBC people. I welcome any chemo recommendations that I could pass on to my surgeon.
Thanks so much,
Latricia
|
Posted By: MsBliss
Date Posted: Jan 29 2010 at 9:18pm
|
Kerry, with pathology, the size of the tumor is defined by the largest single measurement. If the largest single measurement was .2cm, then to say it "totaled" .5cm is not normal protocol. Did they add up multiple separate areas or are they squaring the one tumor? I saw many, many different oncologists; have a family member who is an oncologist, and a close family friend who is also an oncologist. I also went to MD Anderson for an opinion, and was prepared to have my treatment there. Is it possible you had multi focal disease? If it is spiculated and multi focal, then I understand the recommendation. But, generally, if it is under .5cm, chemo is not usually recommended. This is of course because chemo has issues you must factor in to the total picture. It is not win-win. But for some oncs when dealing with tnbc, the aggressiveness of it forces chemo in most cases Did they tell you specifically which cocktail they would like to follow the taxol with? Find out exactly which chemo cocktail they are recommending for you, or if they are giving you a choice. Then let us know. Many here will be able to relay their experience and maybe help with your decision.
|
Posted By: trip2
Date Posted: Jan 29 2010 at 10:44pm
|
Hi Kerry,
Can you get a copy of your pathology report as Mainy mentioned? This would be of great help for you and then share what you are reading on there to us if you don't mind.
It's a good idea to get copies of all path reports, scans, tests, bloodwork for your own file/reference at home.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 29 2010 at 10:53pm
|
Hi Latriciadawn and welcome,
I'm so glad you are recovering well from your surgery, a mastectomy is a tough one.
If I understand you correctly you found a new lump after treatment? If so you might want to copy/paste your question in the Metastasis/Recurrence section of the forum where you might find other women who's cancer has come back and what they are taking.
Do you have any family history? If so you might consider seeing a Certfied Genetic Counselor in regard to being tested for a BRCA 1/2 mutation.
Best wishes to you and look forward to hearing from you again.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Kerry OK
Date Posted: Jan 30 2010 at 12:49am
|
Sorry,
I don't seemed to find a pathology report from surgery. The MRI called it a "1.3 cm x 0.8cm x1.9cm clumped focal area of increased signal in the left axillary tail 10.9 cm from the nipple, 2.4 cm from the skin, and 1.4cm from the chest wall. This shows homogeneous enhancement and rapid initial rise and delayed persistent type vascular enhancement." The pathology report from the biopsy said "Malignant invasive ductal carcinoma and ductal carcinoma in situ (DCIS) ." It probably should say mm on the size but that is what it said. We have 2 note books full of information. Our cancer insurance is giving us the run around so we are trying to keep up with this STUFF. It is hard, but most of you already know that. We will find out the type of chemo for the 2nd round. We were lead to believe this little tumor was agressive. Chemo gives us about a 10% better chance of it not coming back. We will take that chance. Thanks, Brad ( Kerry's husband) ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: MsBliss
Date Posted: Jan 30 2010 at 3:00am
I'm guessing, but it sounds like the 2mm or .2cm measurement came from the biopsy report; that the tumor and associated DCIS are substantially larger than what was relayed earler. A biopsy core would routinely be 2mm in sample size which may be where the confusion lies. Also, probably the focal area imaged in the MRI is not the tumor itself but the area of activity which includes the IDC and adjacent DCIS, so the actual size of the neoplasm is somewhat smaller than the reactive area. Some good features are still apparent: It sounds like it is not close to the chest wall--that is good, and not adjacent to the nipple and those structures which always complicates treatment options surgically.
|
Posted By: 123Donna
Date Posted: Jan 30 2010 at 11:06am
|
Kerry, You can request another copy of your path report from the surgeon. They can even fax it to you so you get it sooner. ------------- 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: Kellyless
Date Posted: Jan 30 2010 at 11:30am
|
as far as those measurements go, they don't seem odd to me. anything larger that 5mm is most always referred to in cm from what I've seen. 1.3 cm is 13mm, .8 cm is 8mm - people cannot usually see how big a mm is in their head, but we've all seen a cm on a ruler. The cancer cells on my sentinal node were put in the path report as 1 mm - when I went for my 2nd opinion with my (wonderful, keeper) 2nd breast surgeon he said that actually the smidge of cancer was a tad less than 1 mm, but they use the 1 mm measure anyway. Point being, I doubt they are referring to .8 mm. ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: MsBliss
Date Posted: Jan 30 2010 at 4:31pm
|
I am wondering what you are referring to....the question wasn't whether it was in mm or cm, but why the pathology seemed to use the word "totaled" and under what circumstances a person with a 2mm primary tumor would require chemo, even if it is tnbc. Of course you are right about the decimal....I noticed some people use a decimal in front of mm but mean to use cm or mm without the decimal. I just figured they mixed up the two.
|
Posted By: Kerry OK
Date Posted: Jan 30 2010 at 9:21pm
|
Ms Bliss
We are new at this and don't know everything. The pathology didn't say "totaled. We questioned the Dr. on the size of the tumor and their reply was that the tumor, when in a cluster is only measured by the largest area. I used the term totaled in refering to the tumor, because to me that doesn't make alot of sense. We have seen 3 oncologist and 2 are now saying chemo. I don't know but there has to be something different with TNBC because 2 of them were very unsure and Dr. Gonzolas was very confident. She doing a "fish' test to make sure of the neg. HER 2.
Hope to clear up the confusion I have caused
Thanks Brad
------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: TNBC_in_NS
Date Posted: Jan 31 2010 at 1:12pm
|
Dear Brad & Kerry:
Breast cancer is hard enough to get our heads around let alone this subtype called TNBC! One would have to be a dedicated researcher to understand how and why it works with such a vengence let alone the normal person, so don't feel bad about anything!!!! We are all learning and some have gotten there faster because their journey was before ours and they have learned just about everything there is to know about this awful subtype of breast cancer.
We have learned to not take one persons' opinion on anything, that is why we have these forums, we learn from each other and from what our individual oncologists have to say. We learned to find out about trials that are happening to add to medical treatment that is being used for this type of cancer. We search and find the medical terms, we search ourselves to learn what we want to do for ourselves, we learn to share with each other how we are feeling and get non-judgmental support . We learn to take one step at a time and, we learn that we are not alone, we learn that there is something more powerful working in our lives other than the disease and therefore learn to live each day to the fullest believing that what is meant to be will be!
Hope I have opened your minds and hearts to know that we never have to be sorry for anything that is said on this site because it is here for us to vent in a constructive way. "This too shall pass".
God Bless, 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: trip2
Date Posted: Jan 31 2010 at 5:37pm
|
Well said Helen.
Yes it is recommended that chemotherapy is best for TNBC, even with smaller tumors, doesn't matter. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: MsBliss
Date Posted: Feb 01 2010 at 1:42am
|
Try not to be so hard on yourself--of course you don't know everything! It is a big learning curve. There is so much to absorb and the diagnosis is always a shock to the system. Originally your posts were a question to ponder, and a good one. With such a small tumor, caught so early, what is the value of chemo and what is the detriment? But it is hard to relate our experiences if we don't know the actual hard data--is the tumor actually 2mm or .5cm or the area illustrated on the MRI which was substantially larger. If it is below a certain size, .5cm, than the benefits of chemo are much less clear. Just make sure to write down your questions and get direct answers. Some doctors feel that any amount of tnbc needs chemo. Some don't. I put in a RFC, request for comment, with a very experienced researcher in tnbc regarding your query. Given negative nodes, negative lymphvascular and angiovascular invasion, the response was if it is 2mm, chemo would not be recommended. If it was up to .5cm, then depending on other features, chemo would not be recommended. But, if is was spiculated, near vital and active structures of the breast or on the chest wall, that would alter the opinion.
|
Posted By: Kerry OK
Date Posted: Feb 02 2010 at 8:27pm
|
Helen and Pam We went to the oncologists in Tulsa and the chemo treatments will be ---- once weekly of Taxol for 12 weeks then combo of 3 drugs- 5 FU, epirubicin,and cytoxan (F E C) This will be for 12 weeks also, once every 3 weeks. We start on Friday. Wish us good luck. When will she lose her hair? We are still looking for wigs, opps cranial prothesis. Need to get the lingo correct for insurance $150 wow better than a kick in the head!!!!!
Just to keep you updated
Thanks Brad ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |