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Triple Negative Treatment Options
Traditional views are that the only treatment for us triple negative folks is chemotherapy. I just finished 6 rounds of neoadjuvant TAC -- I wanted to treat my tumor aggressively, since it's aggressive. 2.1 cm, grade 3 at beginning of chemo. Surgical option will follow. However, what's out there that is new, innovative or different for treatment for triple negatives? Is there any gene treatments? I've heard that stem cell research is considered a bust, is that true in all cases? I am willing to explore any reasonable treatment strategy if it will likely help. Brainstorming is appreciated.
Thank you so very much for your feedback about your chemo treatments. I will follow your advice totally and take the most aggressive route I can find.
Re: surgery. I first tried a lumpectomy. Could not get clear margins -- too many microcalcifications scattered throughout. And, have fibrocystic lumps, had bibiopsies, sonograms, mammograms, etc. since I was 23 (age now 59). Thus, after the diagnosis of unclear margins, I opted for a double mastectomy with no reconstruction. After meeting with a plastic surgeon and discussing the reconstruction options, it was just too much for me to handle at this point.
It's been six weeks now since my surgery -- I feel really great. Do not be afraid of the physical pain. I had minimal pain. Was able to get by for a day on Tylenol and then took nothing. I ended up having two surgeries same day - first the mastectomies, then there was a major hemotoma, so I was rushed back..I didn't get a transfusion, thus it has taken me a while to regain my energy levels. That's been my only "complaint".
My best advice is to take it slow and easy -- spoil yourself, but don't get lazy. I was out of bed the day after surgery walking around -- and I was able to leave the hospital within 48 hours.
One site that helped me a lot with my decision for the mastectomies....
http://breastfree.org/index.php
Prior to my surgery, I purchased a post mastectomy camisole....it is/was fabulous. It has breast forms and I have loved it because I could wear it in public and not worry if someone bumped into me accidentally -- it's protective as far as the incisions....I bought mine at Nordstroms.
I went to Nordstroms prior to returning home to Italy and purchased my prostheses. Haven't worn them much yet, but the few times I have, they're very natural looking under a sweater, blouse, etc.
When is your surgery scheduled?
Thanks again for your response and please let me know how your surgery goes.
Re: surgery. I first tried a lumpectomy. Could not get clear margins -- too many microcalcifications scattered throughout. And, have fibrocystic lumps, had bibiopsies, sonograms, mammograms, etc. since I was 23 (age now 59). Thus, after the diagnosis of unclear margins, I opted for a double mastectomy with no reconstruction. After meeting with a plastic surgeon and discussing the reconstruction options, it was just too much for me to handle at this point.
It's been six weeks now since my surgery -- I feel really great. Do not be afraid of the physical pain. I had minimal pain. Was able to get by for a day on Tylenol and then took nothing. I ended up having two surgeries same day - first the mastectomies, then there was a major hemotoma, so I was rushed back..I didn't get a transfusion, thus it has taken me a while to regain my energy levels. That's been my only "complaint".
My best advice is to take it slow and easy -- spoil yourself, but don't get lazy. I was out of bed the day after surgery walking around -- and I was able to leave the hospital within 48 hours.
One site that helped me a lot with my decision for the mastectomies....
http://breastfree.org/index.php
Prior to my surgery, I purchased a post mastectomy camisole....it is/was fabulous. It has breast forms and I have loved it because I could wear it in public and not worry if someone bumped into me accidentally -- it's protective as far as the incisions....I bought mine at Nordstroms.
I went to Nordstroms prior to returning home to Italy and purchased my prostheses. Haven't worn them much yet, but the few times I have, they're very natural looking under a sweater, blouse, etc.
When is your surgery scheduled?
Thanks again for your response and please let me know how your surgery goes.
I think you will have much more chemo options in Italy than here. You don't have the Food and Drug Administration slowing down the process of drug approval there, so you'll have more options for sure. I recommond going with the strongest, nastiest stuff they'll let you have because chemo is really your one chance to knock the cancer to the curb.
I admire you for moving so fast on the surgery. I decided to do my chemo first, so now am looking forward to the surgery. I have very large, dense breasts, with lots of fibrocystic disease and microcalcifications that make reading mamograms and MRI's hard. I've already dealt with one suspicious lump over the years. I'm too overweight for reconstruction and pretty much don't feel interested in it. I've run across so many woman lately that had the actual lump on one side, but then discovered on later that the other side was involved, that I've made the HARD decision. I'm going to let them take both the girls. It's scary. It's sad. I feel like they are taking part of my heart by taking something so close to it, and I'm scared of the pain, but I feel that aggressive treatment is important with the triple negative thing, so taking them both will maybe, maybe save me some anxiety and grief later. It won't decrease my chances for distant recurrance, but it will pretty much elimininate my chances for local recurrance (in the breast).
I have heard good, good things about medical treatment in Italy and know folks that have traveled there specifically for options that were not available in the US, so I know you will get good options.
God bless you in your journies, especially the one for wellness.
Oh, reaction to chem: I had 6 rounds of TAC (the atomic bomb of chemo) and with all the meds they gave me for nausea and stuff, I did pretty good. The fatigue is crushing, and I have had some issues with diarearhea (nothing immodium couldn't handle) and taste changes -- food just tastes weird. It was worse than I thought because I thought I could willfully overcome the fatigue. I can't. But it has been easier than I thought because all the drugs and stuff really help with the side effects. If you get sick to your stomach Zofran is the BOMB. You have to ask for it because it's expensive, but it's the only anti-nausea drug that lets you handle the nausea but doesn't put you to sleep.
I hope your chemo works as well as mine has. But keep it mind it's not without risk. It's a real attack on the body. I figure about 1/4th of your cells die each treatment, and the fatigue is those cells having to regenerate. So be kind to yourself while on chemo.
Peace,
I admire you for moving so fast on the surgery. I decided to do my chemo first, so now am looking forward to the surgery. I have very large, dense breasts, with lots of fibrocystic disease and microcalcifications that make reading mamograms and MRI's hard. I've already dealt with one suspicious lump over the years. I'm too overweight for reconstruction and pretty much don't feel interested in it. I've run across so many woman lately that had the actual lump on one side, but then discovered on later that the other side was involved, that I've made the HARD decision. I'm going to let them take both the girls. It's scary. It's sad. I feel like they are taking part of my heart by taking something so close to it, and I'm scared of the pain, but I feel that aggressive treatment is important with the triple negative thing, so taking them both will maybe, maybe save me some anxiety and grief later. It won't decrease my chances for distant recurrance, but it will pretty much elimininate my chances for local recurrance (in the breast).
I have heard good, good things about medical treatment in Italy and know folks that have traveled there specifically for options that were not available in the US, so I know you will get good options.
God bless you in your journies, especially the one for wellness.
Oh, reaction to chem: I had 6 rounds of TAC (the atomic bomb of chemo) and with all the meds they gave me for nausea and stuff, I did pretty good. The fatigue is crushing, and I have had some issues with diarearhea (nothing immodium couldn't handle) and taste changes -- food just tastes weird. It was worse than I thought because I thought I could willfully overcome the fatigue. I can't. But it has been easier than I thought because all the drugs and stuff really help with the side effects. If you get sick to your stomach Zofran is the BOMB. You have to ask for it because it's expensive, but it's the only anti-nausea drug that lets you handle the nausea but doesn't put you to sleep.
I hope your chemo works as well as mine has. But keep it mind it's not without risk. It's a real attack on the body. I figure about 1/4th of your cells die each treatment, and the fatigue is those cells having to regenerate. So be kind to yourself while on chemo.
Peace,
Hi -- I admire your attitude. I am triple negative also. Meet with the oncologist for the first time on Monday, 7 January. I have already had surgery, now we'll determine what my treatments will be.
I have been reading and researching since I found I was triple negative. You are so right that our options seem limited.
I live in Italy. My surgery was performed in the U.S. as my cancer was discovered while there on a trip and I did not want to postpone the inevitable. I am quite interested in what the oncologist here will say about chemo and/or other treatment options here. My U.S.l doctors said that Italy is more advanced in cancer treatments. We'll see!
What type of surgical options are you considering? How were your reactions/side effects re: chemo?
I have been reading and researching since I found I was triple negative. You are so right that our options seem limited.
I live in Italy. My surgery was performed in the U.S. as my cancer was discovered while there on a trip and I did not want to postpone the inevitable. I am quite interested in what the oncologist here will say about chemo and/or other treatment options here. My U.S.l doctors said that Italy is more advanced in cancer treatments. We'll see!
What type of surgical options are you considering? How were your reactions/side effects re: chemo?
I know I stand on the shoulders of the thousands of courageous woman who have participated in studies for decades. While I did not get the "lucky" 85% draw, I also know I stand a better chance of living longer and managing cancer better today because of the thousands who came, many dying, before me. I am happy to contribute to the database if there is a reasonable clinical study that fits my situation. Thanks for the ideas. I will share them with my treatment team. Your kind replay IS very much appreciated.
Hi,
You are correct, there is no specific therapy for triple negative disease.
Some of the research that is ongoing involves some similarities with triple negatives and BrCA-1 (a genetic predisposition to breast cancer). There is an investigational agent called PARP-1 inhibitors currently being evaluated in BrCA and may present an option also for 3-negatives. Another finding is that there seems to be an overexpression of EGFR (epidermal growth factor receptor - a structure on the tumor that normally requires signals to promote growth, but in cancer may be perpetually in an active growth promotion configuration), and there are several drugs that may target this: gefitinib, erlotinib, cetuximab, panitumumab. Another target worth pursuing is the tumor blood vessels there are drugs with this mechanism being targeted. There are still other drugs like mTOR (mammalian target of rapamycin) inhibitors out there. Some of these are in the stages where activity is still being measured so any broad recommendations cannot be made (but hey, we're only brainstorming afterall).
On the practical side however, the best way to get additional treatment is in enrollment in a clinical trial. Discuss with your doctor if there is an ongoing trial in his/her insitution or if there are any nearby institutions where you can be enrolled. I don't know if it means anything to you, but your participation will help patients in the future in the same way that the research on patients who participated years ago have defined the treatment you already have received.
Stay positive.
You are correct, there is no specific therapy for triple negative disease.
Some of the research that is ongoing involves some similarities with triple negatives and BrCA-1 (a genetic predisposition to breast cancer). There is an investigational agent called PARP-1 inhibitors currently being evaluated in BrCA and may present an option also for 3-negatives. Another finding is that there seems to be an overexpression of EGFR (epidermal growth factor receptor - a structure on the tumor that normally requires signals to promote growth, but in cancer may be perpetually in an active growth promotion configuration), and there are several drugs that may target this: gefitinib, erlotinib, cetuximab, panitumumab. Another target worth pursuing is the tumor blood vessels there are drugs with this mechanism being targeted. There are still other drugs like mTOR (mammalian target of rapamycin) inhibitors out there. Some of these are in the stages where activity is still being measured so any broad recommendations cannot be made (but hey, we're only brainstorming afterall).
On the practical side however, the best way to get additional treatment is in enrollment in a clinical trial. Discuss with your doctor if there is an ongoing trial in his/her insitution or if there are any nearby institutions where you can be enrolled. I don't know if it means anything to you, but your participation will help patients in the future in the same way that the research on patients who participated years ago have defined the treatment you already have received.
Stay positive.
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