Anyone with Triple Negative?
Anybody out there with triple negative? I would like to share stories and learn what your doc's have told you about your disease. It wasn't until after my chemo treatment was over that I learned exactly what type I had which was triple negative invasive ductal carcinoma. What kind of time line and treatments did you have?
Comments
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Triple Negative, as well
Right breast mastectomy with 10 lymph nodes removed of which 3 were positive on 2/10/10 followed by 6 courses of TAC every 3 weeks which I completed on 6/18.
I am currently receiving daily radiation which I expect to complete by mid September.
It will be 7 months on the 10th of September.0 -
triple neg
I was DX early March 2010, started chemo by mid-March. Had dose-dense chemo (every 2 weeks) - 4 rounds of A/C; 4 rounds of Taxol. Very good results from chemo - tumor shrank from 8 cm to 1/2 cm. Mastectomy and lymph removal (14 taken out, 1 positive)in late July. Radiation will start mid-September and go until mid-November.0 -
21 Months Out From Surgery Today
Hi, I was diagnosed TN 3A in November 2008. Left mastectomy, 6cm mass and 6/15 positive nodes. Six rounds of TAC and 35 radiation treatments completed August 13, 2009.
You'll find lots of info from previous posts. Just search using triple negative. Many wonderful survivors have aided me here throughout my treatment, including others with a TN diagnosis. A wealth of info is here already.
Welcome to the board, though I am sorry for the reason. As for TN, my advice is to avoid the sensationalist press coverage, don't google. PositiveaboutNegative is a good blog, and there are TN threads at breastcancer.org, to name one board. I have found much support and aid here, and you will, too. If I can be of assistance, you can PM me as well.
My best to you!0 -
Triple negMoopy23 said:21 Months Out From Surgery Today
Hi, I was diagnosed TN 3A in November 2008. Left mastectomy, 6cm mass and 6/15 positive nodes. Six rounds of TAC and 35 radiation treatments completed August 13, 2009.
You'll find lots of info from previous posts. Just search using triple negative. Many wonderful survivors have aided me here throughout my treatment, including others with a TN diagnosis. A wealth of info is here already.
Welcome to the board, though I am sorry for the reason. As for TN, my advice is to avoid the sensationalist press coverage, don't google. PositiveaboutNegative is a good blog, and there are TN threads at breastcancer.org, to name one board. I have found much support and aid here, and you will, too. If I can be of assistance, you can PM me as well.
My best to you!
Thank you, Moopy!!0 -
I'm sorry if I left the
I'm sorry if I left the impression I was still in treatment of some kind. I didn't have to have any radiation. I had a left mastectomy and 6 Taxotere and Cytoxan treatments. They removed 4 lymph nodes and all were negative. My tumor was 2.2 cm. I had the Sentinel Node Biopsy, that's why they only took 4 nodes. If I can lend any support at all to anyone, please feel free to contact me. When I see stories or blogs where I see someone in distress or hurting, I automatically bow my head and pray. I may not comment on things, but always know you all have my prayers and best wishes during your journey.
Hugs, hugs, hugs,
Reese
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I'm Triple Negative, too...reeseslover1234 said:I'm sorry if I left the
I'm sorry if I left the impression I was still in treatment of some kind. I didn't have to have any radiation. I had a left mastectomy and 6 Taxotere and Cytoxan treatments. They removed 4 lymph nodes and all were negative. My tumor was 2.2 cm. I had the Sentinel Node Biopsy, that's why they only took 4 nodes. If I can lend any support at all to anyone, please feel free to contact me. When I see stories or blogs where I see someone in distress or hurting, I automatically bow my head and pray. I may not comment on things, but always know you all have my prayers and best wishes during your journey.
Hugs, hugs, hugs,
Reese
.
I learned about it from my plastic surgeon....only because he was reading the report outloud...I have a huge family history and I'm the only one I believe is triple neg. I have no children or any nieces and nephews. I haven't been soooo worried about it as I also had a total hysterectomy a few years ago due to fibroids. My nodes were clear, had good margins and had both breasts removed. I had AC and Taxol, no radiation. So far, so good. I have my expander exchange on 9/9 and should be done for a long while. My Onc appt. is 9/16. That will be my second post-chemo visit. I am like anyone....I want to remain cancer-free!
Best to all....
cj0 -
TRIPLE HERE TOO..........
I had the same....Triple negative invasive ductal carcinoma......dx in April, 2009......lumpectomy on May 19, 2009....2.2 cm, stage II,(my staging was stage II, I was told due to the size only) NO lymph node involvement, good, clean, clear margins, although it was very close to the chest wall....... chemo Taxotere/Cytoxan, 4 infusions, then 33 radiation treatments the last 7 were boosters. Finished the radiation on Oct.30....I feel pretty much back to "normal" what ever that is.....I don't think about the what if's..(okay once in a while).....Personally, I can't live like that....I made a decision, in order to get on with my life, I can't worry about things of which I have no control. I couldn't control getting bc in the first place and I can't control the possibility of it returning......I still experience some residual fatigue from the radiation....My two oncologists said it can take up to a year to regain my "normal" stamina....both said it takes longer if one has chemo in addition to radiation.
My surgeon and both oncologists' told me that yes, triple negative is not a "good kind" (is there a good kind of bc?) of bc to have BUT.........it is the one bc that responds best to chemotherapy...so I was thankful for that bit of news.....I also found the lump myself, after less than 3months after having a mammo and ultrasound done,to me, that's scary, and also I have NO family history of bc.......mine appears NOT to be the hereditary type.......thank God for that, as I have a grown daughter and two grand daughters!
So, theres my story........
I wish you well and continued good health!
Nancy0 -
Triple Negative
I was diagnosed 1/6/2010 with Stage 3 Triple Negative Breast Cancer. I am 43 years old. BRCA1 & 2 Negative. Chemo 4 rounds of A/C and 4 rounds of Taxotere/Carboplaten. Lumpectomy on June 22 with bi-laterial reduction and removal of 18 lymph nodes. Cancer 100% gone from Chemo. Currently doing 25 Radiation treatments. 2 more weeks to go !!!!
My doctors never did really tell me the specifics of Triple Negative. I found out most everything from the internet.0 -
ME too!
Dr. never told me anything other than aggressive cancer and he would treat aggressively.
Diagnose first of November started chem the day before thanksgiving, 4 rounds of TA, 2 rounds of AC with Avastin, double mast, 10 rounds of avastin0 -
Wife is Negative...We Think
We had the everchanging pathology ER+;ER-;ER+;ER- finally stopping on Triple Negative. Donna's Onc doesn't seem too concerned about it. Lumpectomy, stage I, grade 3, brca neg, clear margins, node negative, 1.1cm. Doing dose dense AC-T (three more taxol left) then radiation to follow. Because of the conflicting pathology reports, they may offer her tomoxifin; not sure.
Lumpectamy April 20th; pathology... pathology... oncotype delays. Started chemo June 23rd. One oncologyst at Sloan in NYC still thinks that CMF is a good treatment for trip neg, so we were considering that even though the Sloan doc on Long Island wanted her to do the AC-T. Went for a second opinion, and that doctor told us that the guy in NYC was a jerk, and nobody agreed with him, so we went with the AC-T.
I know that everyone is different, but I am constantly amazed at how many different chemo regiments there are, even among triple negative. I wonder how regional the treatment courses are? Is someone in NY or a metropolitan are more likely to get recommended AC-T over CAT?
Bob0 -
Hey Bob, interesting question....Hubby said:Wife is Negative...We Think
We had the everchanging pathology ER+;ER-;ER+;ER- finally stopping on Triple Negative. Donna's Onc doesn't seem too concerned about it. Lumpectomy, stage I, grade 3, brca neg, clear margins, node negative, 1.1cm. Doing dose dense AC-T (three more taxol left) then radiation to follow. Because of the conflicting pathology reports, they may offer her tomoxifin; not sure.
Lumpectamy April 20th; pathology... pathology... oncotype delays. Started chemo June 23rd. One oncologyst at Sloan in NYC still thinks that CMF is a good treatment for trip neg, so we were considering that even though the Sloan doc on Long Island wanted her to do the AC-T. Went for a second opinion, and that doctor told us that the guy in NYC was a jerk, and nobody agreed with him, so we went with the AC-T.
I know that everyone is different, but I am constantly amazed at how many different chemo regiments there are, even among triple negative. I wonder how regional the treatment courses are? Is someone in NY or a metropolitan are more likely to get recommended AC-T over CAT?
Bob
I live near metropolitan Detroit, MI. My onc was with Karanos (a very respected cancer treatment center in Detroit) for several years prior to her joinng Van Eslander Cance Center and joining a private practice.
I was dx TNBC, Stage 2A in July 09. Sentinel Node Biopsy clear. Had single, simple mastectomy in Sept and no remaining cancer cells found in breast tissue. I had 4 chemo of C/T. Because I was 66 yr., my doc did not want to to A/C because of possible heart problems (my heart is good however). We were going to try for 6 chemo's but I was too sick and we stopped at 4 whcih my onc said was protocol anyway. No rads because of the clean breast tissue from the mastectomy.
I was aware of the TNBC at the time of my first biopsy and had already read all about it beforehand. I don't think I'm worse off than those with hormone positive tumors, in fact I'm thankful I don't have to have the 5 year treatments with the hormone killers (can never think of the names). I have read what miserable side effects some have andj if my chemo side effects were any warning, I csn only imagine the rest of it. I also had horrible hot flashes when I stopped taking HRT for 4 or 5 years!
I have faith in my medical team and, while I think about it everyday, (hopefully that will gradually change), I don't drive muyself nuts over it. I have a very hopeful attitude and see my onc every 3 months. I'm glad I wasn't faced with this 20 years ago, of course they didn't have the treatments they have now. But I plan on living a full life and plan on living til I'm 90! (truly)
It's one day at a time, one foot in front of the other til you come out the other side of treatment. Once I actually began treatment and all the surgeries (there were 4) and tests were over the horrible knot in my stomach went away because I was actually now fighting and there were no more surprises (hopefully).
But I do go on and on....back to your question, I hope others join in with where they live and their treatment plans...but of course much does depend on the individual person.
Hugs,
Judy :-)0 -
TAC from St. Louis MOHubby said:Wife is Negative...We Think
We had the everchanging pathology ER+;ER-;ER+;ER- finally stopping on Triple Negative. Donna's Onc doesn't seem too concerned about it. Lumpectomy, stage I, grade 3, brca neg, clear margins, node negative, 1.1cm. Doing dose dense AC-T (three more taxol left) then radiation to follow. Because of the conflicting pathology reports, they may offer her tomoxifin; not sure.
Lumpectamy April 20th; pathology... pathology... oncotype delays. Started chemo June 23rd. One oncologyst at Sloan in NYC still thinks that CMF is a good treatment for trip neg, so we were considering that even though the Sloan doc on Long Island wanted her to do the AC-T. Went for a second opinion, and that doctor told us that the guy in NYC was a jerk, and nobody agreed with him, so we went with the AC-T.
I know that everyone is different, but I am constantly amazed at how many different chemo regiments there are, even among triple negative. I wonder how regional the treatment courses are? Is someone in NY or a metropolitan are more likely to get recommended AC-T over CAT?
Bob
Bob, you raise an interesting question. In my case, TAC was advised by the oncologist I saw in November 2008. She and her husband practice at Siteman Cancer Center, affiliated with Washington University in St. Louis, and at St. Luke's Hospital in Chesterfield, MO. My local onc. advised a clinical trial with Avastin. They are both trained out of St. Louis hospitals.
Eric Winer at Dana Farber and Lisa Carey, at UNC Chapel Hill, seem to believe that dose dense AC/T is the best chemo cocktail for TN. They're the only 2 prominent TN researchers that I know.
Maybe TN survivors from other parts of the country/countries will chime in.0 -
inflammatory breast cancer
inflammatory breast cancer and triple negative. . . i didn't even know what that meant until i found this website. have been in chemo seven out of the past nine months. petscan scheduled for friday and breast mri the following wednesday. mastectomy will be mid-september if good results from petscan. . . unfortunately i was at this point back in may and found out first rounds of chemo (taxotere and cytoxan) didn't work and cancer spread. went through second rounds of chemo (adriamycin and cytoxan) have had lifetimne maximum of cytoxoan, so definitely hoping for better news this time. not that i want the mastectomy, but it is inevitable.0 -
Same hereezloper said:Triple Negative
I was diagnosed 1/6/2010 with Stage 3 Triple Negative Breast Cancer. I am 43 years old. BRCA1 & 2 Negative. Chemo 4 rounds of A/C and 4 rounds of Taxotere/Carboplaten. Lumpectomy on June 22 with bi-laterial reduction and removal of 18 lymph nodes. Cancer 100% gone from Chemo. Currently doing 25 Radiation treatments. 2 more weeks to go !!!!
My doctors never did really tell me the specifics of Triple Negative. I found out most everything from the internet.
I was diagnosed this April, did chemo AC, they said the tumor grew. Then did carboplitn, they said tumor shrunk. Had surgery June 11, 2010, clear margins. 6 weeks of radiation, just got done 8/18. NOW my onc wants me to do a PARP inharibor trail study. HAS ANYONE DONE A STUDY OR USED TRIAL MEDICATIONS?>
Shannon0 -
Shannon, my local onc.SDickerson said:Same here
I was diagnosed this April, did chemo AC, they said the tumor grew. Then did carboplitn, they said tumor shrunk. Had surgery June 11, 2010, clear margins. 6 weeks of radiation, just got done 8/18. NOW my onc wants me to do a PARP inharibor trail study. HAS ANYONE DONE A STUDY OR USED TRIAL MEDICATIONS?>
Shannon
Shannon, my local onc. advised a clinical trial for my chemo regimen; I chose a different chemo based on a second opinion. So, no, I have not been in a clinical trial, but only because that particular trial did not seem best for me. A coworker, diagnosed as stage 4, cancer of unknown origin, has been on a trial (with the chemo pill Tarceva); she was nervous about the trial initially but is doing extremely well. You would not know she has even had a cancer diagnosis.
I only wish I could have participated in the PARP trial. It was unknown to me in 2008. I'm sure if I were diagnosed today my onc. would suggest it. The drugs called PARPs are very, very promising for TNs. Youngsurvivors.org has a permanent posting on it, I believe. You can also thoroughly quiz your oncologist. He/she should be able to explain to your satisfaction how the trial will benefit you, in his/her opinion. The Research Nurse or person heading research trials at your hospital should also be available to answer your questions.
Great news that Carboplatin worked on your tumor! Clear margins--that's wonderful, too. As for the trial: after a cancer diagnosis, we are presented with such important decisions. Some easy, others not. Getting informed, as you are doing, is always smart. Ultimately, we all do the best we can with what we have. The rest is a matter of faith and trust. Whatever you decide will be the right decision for you at the time.
My best to you, Shannon.0 -
Appreciate itMoopy23 said:Shannon, my local onc.
Shannon, my local onc. advised a clinical trial for my chemo regimen; I chose a different chemo based on a second opinion. So, no, I have not been in a clinical trial, but only because that particular trial did not seem best for me. A coworker, diagnosed as stage 4, cancer of unknown origin, has been on a trial (with the chemo pill Tarceva); she was nervous about the trial initially but is doing extremely well. You would not know she has even had a cancer diagnosis.
I only wish I could have participated in the PARP trial. It was unknown to me in 2008. I'm sure if I were diagnosed today my onc. would suggest it. The drugs called PARPs are very, very promising for TNs. Youngsurvivors.org has a permanent posting on it, I believe. You can also thoroughly quiz your oncologist. He/she should be able to explain to your satisfaction how the trial will benefit you, in his/her opinion. The Research Nurse or person heading research trials at your hospital should also be available to answer your questions.
Great news that Carboplatin worked on your tumor! Clear margins--that's wonderful, too. As for the trial: after a cancer diagnosis, we are presented with such important decisions. Some easy, others not. Getting informed, as you are doing, is always smart. Ultimately, we all do the best we can with what we have. The rest is a matter of faith and trust. Whatever you decide will be the right decision for you at the time.
My best to you, Shannon.
Thanks for the info. and the words of encouragement. Glad to hear someone else is at least familiar with PARP. I will check out the website.
I have decided to participate in the trail. I have prayed about it and if I am accepted then it is what God wants for me.
Praying for us all!!!!
Shannon0 -
PARPSDickerson said:Appreciate it
Thanks for the info. and the words of encouragement. Glad to hear someone else is at least familiar with PARP. I will check out the website.
I have decided to participate in the trail. I have prayed about it and if I am accepted then it is what God wants for me.
Praying for us all!!!!
Shannon
Glad if my post was helpful, Shannon. We are all in this together. Thanks for letting us know what you have decided; the rest, as you say, is in God's Hands. The next few months will be rough, but the rest of your life is worth it.0 -
Another Triple Neg reply
As you can see by my "name", I join the triple neg club. Diagnosed in November, 09. Had lumpectomy for L breast invasive ductal ca.in December. Then 6 sessions of Cytoxin and Taxotere. No Adriamyacin because I didn't want the risk of cardiac problems. Following chemo I had 33 radiation treatments and 7 "boosts". Just had my first follow-up mammogram last friday and it was benign. Hooray!! I'm feeling much better. Still tire easily but my strength is slowly returning. My hematocrit is still low but the oncologist said it would take some time so I just have to be patient. Thank all of you for sharing your stories as we all learn from each other. Keep good thoughts!0 -
TN alsoTripleneg66 said:Another Triple Neg reply
As you can see by my "name", I join the triple neg club. Diagnosed in November, 09. Had lumpectomy for L breast invasive ductal ca.in December. Then 6 sessions of Cytoxin and Taxotere. No Adriamyacin because I didn't want the risk of cardiac problems. Following chemo I had 33 radiation treatments and 7 "boosts". Just had my first follow-up mammogram last friday and it was benign. Hooray!! I'm feeling much better. Still tire easily but my strength is slowly returning. My hematocrit is still low but the oncologist said it would take some time so I just have to be patient. Thank all of you for sharing your stories as we all learn from each other. Keep good thoughts!
I am TN also. I was dxed in 7-08, had modified radical mastectomy one pos lymph node had 16 removed. Had taxetere, adriamycin, cytoxan 6 rounds. Got done in 1-09. Went back to life. Had a 'pesky' rib. Had a clear pet scan in 9-09, had a clear mammogram in 6-09 and 6-10. Did a cat scan of pelvis, organs, abdomen. The cancer has spread to both lungs, two or three lymph nodes (clavicle, sternum) and abdomen above the adrenal glands. I went to MD Anderson for a secon opinion since I am three hours from there. I saw a Dr. Gonxalez Alugulo who is a Medical Breast Oncologist who has bee conducting research in TN for several years. She told me everything that was done was correct and if the cancer comes back within two years of last chemo then it is aggressive. She recommended Xeloda and Ixempra as a combo or Abraxane and Avastin. My onc here in San Atonio and I discussed it and the side effects were more severe overall with the Xeloda and Ixempra and Avastin is going off the market as a mets breast cancer drug by the FDA (they meet on September 17th to take a vote as to whether it should be dropped for mets breast cancer patients...will keep it for colon cancer and a couple others but drop it from the list of breast cancer). We decided on the Abraxane and Avastin regimen and if it is working to see if I can stay on it since I got on it prior to the drug be taken away. I just had my second round of chemo and it is going well. My counts look good and I am having minimal side effects. I continue to work and 'do life' while at the same time dealing with all the reactions from family and friends around me with the news. I am glad I went to MDA so if I need to go on a PARP inhibitor trial I have two oncologists that can look for me. Dr says for me to get into studies I need to 'fail' at one or the other of these treatments first. So I'll do the three months and see what the scans say. It is a totally different world when it has metastisized so soon after chemo was completed. I try and live one day at a time and put one foot in front of the other. I knew i was TN before but did not really understand how serious it was until I saw Dr. Gonzalez at MD Anderson. Everyone I talked to said that since they got it early I should be ok. I was being watched by two different oncologists since chemo 1-09, one was my oncological surgeon and one is the chemo oncologist who specializes in breast cancer here in San Antonio. They do a Breast Cancer Symposium here in December and I plan to go this year to find out more about TN And what treatment options might be open to me. The PARP Inhibitors are now in Stage 3 clinical trials and they expect them to go to market early next year. We shall see! Good luck with your treatments! I have been on www.tnbcfoundation.org website and they have lots of information on there as well. I am also looking into alternative therapies and sorting out which ones are quacky stuff and which has validity. Take care and good luck!!! MJ0 -
I am not Triple Negative,heidijez said:inflammatory breast cancer
inflammatory breast cancer and triple negative. . . i didn't even know what that meant until i found this website. have been in chemo seven out of the past nine months. petscan scheduled for friday and breast mri the following wednesday. mastectomy will be mid-september if good results from petscan. . . unfortunately i was at this point back in may and found out first rounds of chemo (taxotere and cytoxan) didn't work and cancer spread. went through second rounds of chemo (adriamycin and cytoxan) have had lifetimne maximum of cytoxoan, so definitely hoping for better news this time. not that i want the mastectomy, but it is inevitable.
I am not Triple Negative, but, want to wish all of you that are good luck with your treatments! I didn't know what it even meant until I read about it on this board.
Hugs, Debby0
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