Triple Negative is Generic Name?

FloridaLady · July 2007

I would like to share more of what I have been finding out the last few months about triple negs from going through 3 top cancer centers and 7 diff. chemos in 18mths. Triple neg. is a generic name for bc with unknown receptor. Meaning researchers do not have the technology to break it down. The only good thing abiut this is that everyone can responsed differently to treatment. Because we each may be different kind of receptor. So you are "you" and you will not know anything until you try the treatments. I have been told this week I am ahead of technology and they do not know what to do. This from MD Anderson Houston rated #2 in the world. To show how diff. I am I have no mets after two (diff) mast. with 27/28 nodes positive on both sides.(also spread to inflam. after 1st mast.) They have told me after running all over the country that if I want add'l tx it will have to be Phase 1 trials that are very chancy on triple neg but you will not know to you try the tx. I just did a Phase 1 at Houston for aroplatnium and did not responsed and now due to large dose have server neuropathy. My next possible tx is a drug (not chemo) that was design for lukeima???? This is not a good place to be. But hope to fight long enough for science catches up to me. I told my dc I will have him rewriting the book on triple negs.

Fight the fight its worth it. Living in hope.

ravdeb · July 2007

Yes, this is how I have understood it. They know about the three receptors..estrogen, progesterone and her2 (the newest one) and since we have none of those, it is called triple neg. They continue to try to find more receptors but for now, they have no idea how to treat this kind of breast cancer. It's hit or miss, I guess.

I wish you well and hope that they find the drug that will hit it right for you.

Good luck.

tos · July 2007

You are so right FlaLady, fight the fight it is definitely worth it!!

Good luck to you,

boobbuster · July 2007

Thanks for sharing the information. Fortunately for us there is alot more research going in with triple negs. When I was first dx there were a lot of doctor's unsure about treatment options and not many clinical trials. You've continually overcome your dx and I pray that continues for you. It's worth it and God is able, Stephanie

2timer · July 2007

I'm confused (as usual). BC has "receptors"? And having receptors that have been identified makes it easier to treat? I assume that increases survival rate -- but doesn't guarantee it? I mean, women with er+, pr+ still die from BC even though there are treatment designed for those receptors?

FloridaLady · July 2007

SJack,
Yes this is a little weird to understand...but from my research on receptor is everything. They can not treat properly without them. Not that they will not give you standard protocal chemo. As for people with determined receptor whom still die...This is do to the fact the cancer was advanced when found or patient has other health issues that they can not withstand full dose of chemo so it continues to grow. Also they could have another stronger receptor than was unknown and there for not treated.
I hope that explains it a little better. Also as I was told when I was diagnosed...No two people responsed the same.
Still living in hope.

Indigoblue · August 2007

Triple Negative is somewhat specific as to it's aggressive behavior and available treatments (surgery, some chemo drugs, and radiation (and not always). The Triple Negative term is not generic if you examine all of the other mutations and combinations of breast cancers. Because Trip Neg occurs in only 8- 15% of breast cancers, there has been very little research. Personally, I think the treatment we get is what's "generic"! When researching Trip Neg, it is rather like "fibromyalgia", a handy phrase to call a disease which science has not been able to identify or find the cause or cure. The fact that there is the "unknown" receptor makes sense. Could it also be an unknown enzyme, protein, or some other lacking or not growth factor? Virus, micro-virus, or some other "mystery" hormone which disables our cells and the ability to function normally?

From what I understand, breast cancer cells may contain receptors which are binding sites for hormones like estrogen and progesterone. Cells containing these binding sites are known as Hormone Receptor positive cells. If cells are lacking these hormones, then they are referred to as "Hormone Negative".

Hormone Negative tumors generally grow faster, are aggressive, and don't respond to Hormone Therapy. Estrogen is #1, Progesterone is #2, and finally, the HER-2 Protein is #3; it's a nasty tumor marker in the Epidermal Growth Family (often treated with Herceptin successfully). If all three of these are not found in the tumor cells, the term Triple Hormone Receptor Negative applies.

DNA, genetic studies, molecular research are making leaps and bounds regarding this mutant, sneaky cancer. Dense breast tissue, grade 3, Stage I or II, negative lymph nodes, pain, and location; all these factors seem to be common in so many patients.

There are at least 70 genes known which contribute to various signatures for tumor type and aggressive predictabile behavior. New tumor markers have been discovered, with clinical trials for new treatments and studies perhaps we'll have some hope for the near future.

Trying to feel positive...not so easy is it?

Indi

ravdeb · August 2007

Well written, Indi. What you have written is what I have been understanding about triple neg. The only small thing is that I read it was 20% of the bc population..but that is a small difference.

I do believe they have not found the HER that pertains to our type. They are working on Her1,and I beleive HER4. I no longer remember...

The only thing that they do say is that chemo works best on triple neg. I believe they say this since that is the only weapon at present, besides rads. They have not found which chemo is the best though they are talking about platins and taxanes. So..yes..it's the chemo that is generic...

PineHouse · August 2007

Wow, Indi, you talk like a researcher/scientist.

Yes, I too have been watching eagerly for them to unveil new tumor markers. Ravdeb, it would be nice if one of our "mystery" markers turns out to be HER1, or HER4. I believe HER1 overexpressed tumors may benefit from Tykerb/Lapatinib.

Let's hope for the best for us...

NarberthMom · August 2007

It's important to remember that before HER2 was discovered, tumors were classified as ER positive or negative. This was the case with my mother's BC about 24 years ago. I don't know when the PR receptor was added on. As they discover more receptors, there might be a class of bc called quadruple negative! Along with the discovery of new receptors that are critical for each tumors growth, it is important to discover drugs that bind to that receptor, and inhibit tumor cell growth or actually kill the tumor cells.

Triple Negative is Generic Name?

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