What Kind of Chemo for Triple Negative
I wanted to see what kind of chemo you all had for triple negative breast cancer. I'm in the process of getting 2 extra opinions after having surgery. For those of you who aren't familiar with my story... I had DCIS last year and had a bilateral mastectomy to greatly reduce my risk of recurrence (this was before knowing I had TN and it's risks). 8 months after my bmx, I discovered 3 small lumps in the same area of my right breast where I had the DCIS. It was imbedded in my internal scar tissue (my current onco says it's a chest wall recurrence, but it wasn't on my bone). I just finished 2 surgeries (one excisional biopsy & more tissue and lymph nodes removed). I am supposed to get a petscan and then my treatment will be decided.
Anyway, my point of this is... what kind of chemotherapy did you all get and why???
Comments
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My second diagnosis, DCIS ER+/PR-, was 369 days after my first one, which was TN IDC. I agree this disease sucks!
I had 4 DD cycles of AC and 4 DD cycles of Taxol. This is what my Oncologist recommended so I went with it.
I'm so sorry you've had to go through so much. Hang in there. There's lots of us to get you through this...
Linda
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Wow - so I am not alone in this sudden recurrence. It's almost like we switched places. You had IDC first and then DCIS 2nd. That is so odd that yours was ER+.
I am going to be a 2X BC A$$ Kicker too!!!
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Kitty - I had Taxotere/Cytoxan (four treatments three weeks apart).
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i had the same as sugar77 but with avastin every 3 weeks for a year, nearly finished it, two more to go, one next monday and then only 1 left. i also had radiation to quite a large area because the margin could not be measured to the chest wall, it was too small, 33 in total, although would have had them anyway being tn, but mayby not as many as had modified radical macestomy, tumour was over 8cm idc. TC CHEMO PLUS avastin is showing great results or so they tell me.
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I had dose dense AC/Taxol. AC every 2 weeks for 4 weeks and then taxol every 2 weeks for 4 weeks. I remember I could have been in a clinical trial where they added Gemzar to either the AC or the Taxol (I forget which) but I opted not to do that. My chemo was in 2005.
I did it because it's what both oncs recommended.
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I had Epirubicin/Cytoxan X4 and Taxotere X3 every 3 weeks. My onc said he wanted to be aggressive and this is what he recommended.
Anna
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Kitty, I had Taxotere,cytoxan and adriamycin 6 treatments 3 weeks apart. No Rads
Hope2, Please share with me how it came about that you rec'd Avastin. Were you in a study? For those who are unfamiliar with Avastin, I will tell the little that I know. It is a medicine that was originally developed for Colon Cancer. It is a antiVEGF drug, which means that it shuts off the chemical in your body that makes and maintains new blood vessels. Since new vessels are needed by tumors this medicine shuts off the tumors vessels there by depriving it of oxygen and nutrients. And the cancer cells then die. Avastin is being used for many different cancers now including primary site brain cancer. a form of avastin is even being used by injecting it into the eye to manage macular degeneration(leading cause of blindness in Adults)
I really believe that this drug and others like it that will surely follow, will be the treatment of choice in the future of breast cancer. I wish the FDA would hurry up and finish studies and get it approved.
Navy
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Kittycat,
Yep, a 2X Breast Cancer A$$ Kicker club. It sucks. I had a license plate holder made that says just that!
My second diagnosis was a new primary. My oncologist was worried about recurrence so imagine both of our surprises when it wasn't. I chose to have a second mastectomy, since my body wasn't to be trusted any more. A mastectomy and DD "aggressive" chemo did no good. I wanted to have a bilateral mastectomy when I was first diagnosed but my surgeon said it was overkill. He couldn't find any words to say when I went back to him a year later. But, because of the second diagnosis, I had genetic testing and found out I am BRCA 2+. Now my family knows they may carry this genetic link and through testing they can make informed decisions about their health...
Linda
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I'm going to see a local onco in town that specializes in breast cancer. Then, I'm going to Sloan Kettering in NYC next week. I'm interested in seeing what will be recommended. My sister's fiance is a doctor (specializes in R&D for a pharma). He's going to give me a list of questions for my visit at SK.
Thanks for the responses.
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kittycat~
I had AC X4 every 2 weeks and taxol X12 weekly. I also had avastin every 3 weeks. It was supposed to go on for a yr but I had to stop early (after 7-8 mos). I'm also on the bisphosphonate trial. I'm on the clodronate arm.
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Navymom, i am on the final stage trial for avastin to be approved for breast cancer that is her2 negative, my oncologist strongly recommened it, he said the big problem is keeping it away that chemo increases my chances as does radiation but not by enough really and while because it is on trial he cant tell me to use it, he thought it looks very promising. the big side effect is my sinuses and nose bleeds and just very sore nose in general, 12 months of constant sinuses infections is no joke, headaches, mucus, cough, annoyance that goes with it but hopefully it will be worth it. also affects bowel habits and blood pressure (mine was low anyway, so now normal). it also slows healing but you will still heal.
its hard to know chemo side effects that have lingered from the avastin side effects but a very easy drug to take overall, i still get it over the 90 mins but most have it reduced to 45 mins after first 3 doses, i had a reaction on number 2.
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I'm on dose dense AC, 4 cycles, two weeks apart. I'm getting ready for my 4th chemo. Then I will have dose dense (weekly) Taxol for 12 weeks, followed by radiation. I am also in the Avastin trial, althought I don't know if I am receiving Avastin or a placebo. I talked to my oncologist, breast surgeon and family doctor and they all recommend the Avastin trial.
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Thanks for info regarding Avastin.
Navy
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I had DD AC, then 12 weeks Taxol -followed by 33 radiation treatments.
I was in the Avastin trial, but when I was unblinded I found out I was getting placebo.
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I found a new onco and saw her today! She is GREAT compared to my onco (who is smart, but doesn't look at this as a whole approach, which I need). She is going to look into clinical trials, but doesn't know if I'll qualify because I had DCIS a year ago. I'm going to Sloan Kettering next week. My new onco is anxious to find out what they recommend. I had to overnight all my slides, films, CD's and reports to SK. I should have some kind of plan in 2 weeks!
The new onco is thinking she'll put me on a dose dense of AC/T.
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Hey Kittycat,
You know my history. I was put on something completely different this time, to reduce the size of my tumour so that they can do surgery. My first cancer diagnosis, invasive cancer, grade 3, stage 2 was slightly estrogen fed, now this recurrence is triple negative, which is why I noticed this discussion-any info I can get is helpful. My chemo treatments are cisplatin (more commonly used for lung cancer)- I am getting it in a very high dose, and gemcitabine. I am on a 21 day cycle, 4 cycles, I had my second treatment yesterday. So far the tumour is shrinking, which is really good. If they can shrink the tumour enough, next step is surgery, then radiation, which I did not have the first time. My right expander will be taken out when the tumour comes out, but not replaced. Any reconstruction on my breast will not be considered until after they know the cancer is gone and they have done all the necessary treatments.
Good luck, I hope you are happy with your Doctors.
I know we will both get through this!!
Take Care
Kristi
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jenn3, during your treatment did you have any idea as to whether you were receiving Avastin or the placebo. One week I think.....Avastin, the next....placebo
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Susie - I had so many SE's with chemo it actually got laughable - I think if there was one to get I had it. I just knew I was getting Avastin, then towards the end of treatment, I started to have my doubts. The reason for my doubts is that with Avastin, the majority of people get higher blood pressure, rapid heart beat, etc. My normal blood pressure readings remained the same and all of the echo cardio grams, EKG's, etc remained the same. I was receiving placebo.
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Kristian,
You wrote that your first diagnosis was "slightly estrogen fed, now this recurrence is triple negative." Because these are two different breast cancers, you had two different primaries. My first diagnosis was TN IDC and my second was ER+/PR- DCIS. Did your doctor tell you the first diagnosis was TN?
Linda
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Kristi-I am stage 2 idc triple neg i had dd ac and dd taxol. I too went to sloan for tretment they are very good. i feel like they know what they are doing when i go- Best of luck and god bless
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FEC x 3, Taxotere x 3 - 2008.
Recurrence: Xeloda didn't work, now Carboplatine/Gemzar which is working.
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Thanks everyone for the helpful info! I met with the new onco on Thursday. I really like her. I am traveling across the country to see a specialist at Sloan this week. My (new) onco said that the east coast tends to differ in what chemo they use vs the west coast! My onco does clinical trials with UCLA. she's going to check and see if I qualify for any of them. In the meantime, she's interested to see what the specialist at Sloan says.
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Kittycat, when I did my chemo 2 years ago, it was at Stanford's Breast Cancer Center and the gold standard at the time was dose dense A/C (every 2 weeks)...4 total (wish I had done more than 4 up front because it knocked my tumor down) and dose dense Taxol (every 2 weeks). I've heard of other women who kept their tumor in and Taxol desimated their tumor.
After I did the gold standard, I had surgery and my tumor and invasive cancer was gone except for a tiny bit in one node (after full disection of my axillary nodes). I knew that AC worked for me because my tumor collapsed after 2 doses...could barely feel the tumor. But my brilliant oncologist said that Taxol does the clean up job on microscopic stuff left over so both are important.
Because there was some left in one node, I did 2 more AC then carboplatin/taxotere (every 3 weeks). I had quite a few nodes possitive to begin with so I chose to hit this cancer like crazy with chemo. I was a single mom of 2 young kids so it was a personal choice.
I hope all goes well for you.
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Both the new onco here and the one at Sloan recommended AC/T (dose dense). I am getting a port put in sometime this week or next. I'm sure I'll start chemo in the next couple weeks.
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kittycat, it's probably too late now for your decision-making, but I was offered a clinical drug trial that treats patients with no evidence of spread beyond the tumor as if they had mets. The thinking is that the drugs normally used for mets will zap any currently undetectable micro-mets and prevent/reduce/delay recurrences. I'll have surgery after that. I have a port that I've (knock on wood) not had any problems with.
For the first half of my trial, I got Avastin every 3 weeks X 4, along with Taxotere on weeks 1 and 2, as well as Xeloda on days 1-14. I'm now in the second half, and get Avastin, Adriamycin and Cytoxan every other week X 4.
At the midway point, they rescanned and said my tumor had decreased about 60% in volume, although there was still some architectural distortion marking the area of the original outline of the tumor. I don't know if that's normal or cause for concern yet.
I wasn't blinded in the trial, although I could have chosen to be. Because it was Grade 3, I was given the option to throw everything possible at it. Now that I know I'm TN and know what that means, I'm doubly glad I went aggressive. At the time, I was just thinking I'd never forgive myself for not doing everything possible and then have it come back. If I was going down, I was going down swinging.
The nose bleeds from the Avastin are more annoying than serious. The Xeloda made my hands and feet peel and crack and some of my nails turn dark. Two of them are lifting up and I may still lose them, but they'll grow back. I had some occasional tingling and numbness in my fingers, but no serious neuropathy .
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Hi, I am from Australia and have found this site so very helpful. I have not been able to find any forums that are dedicated to triple neg specifically. I have been searching everywhere for information on triple neg and this has been the most informative as I read so many studies that seem to be very negative and don't ispire a lot of hope. I was very excited to see this topic as I have been quizzing my Oncologist about the same thing as I obviously want to optimize my treatment. I have just finished my second cycle of TC. (X4) Reading all these posts have made me feel normal about my concerns re the adequacy of the four treatments and wondering if 6 would be better etc. I feel very fortunate to be able access this site.
riley702 I like the look of that clinical trial, My Dx is identical to yours I would have loved to be offered a trial like that. I hope it this trial gives us more drugs to add to our limited arsenal. Good luck to you all, keep up the chatter.
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My port goes in this Friday. I am probably starting chemo next week or the week after. I find out this Thursday.
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Kittycat, You'll love your port. Sleeping took some adjustments but a few extra pillows did the trick. Best of luck!
Linda
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Hi Kittycat,
Sorry you're going through this again - ugh!!!
I had DD Adriamycin/Cytoxan every other week times 4 cycles and then Taxotere every other week times 3 cycles. I was supposed to do 4 cycles of T, but the neuropathy was getting worse so onc cancelled the last one.
I was 39 at diagnosis too, and I tell myself that I had youth and strength on my side to fight harder. I tell myself that I got it out of the way early, so I can go on to live 50 or 60 more healthy years!
Hang in there and let us know how you're doing! I second the opinion that you'll love your port! My onc says I can get mine out, but I'm keeping it forever.
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Thanks for the encouraging words! I hate getting an IV, so the port is a must!!! My sister had one after 2 chemo treatments.
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