Metasis gene discovered by Komen-research

[Snufi]

Hi to all, Have u guys heard about the new discovery, dated Jan 6, 2009 done by Komen-Funded Research. It appears that "a single gene that appears to play a crucial role in aggressive breast cancers in both increasing the ability of the cancer to spread and making it resistant to chemo. The gene called MTDH appears to be involved in more than one third of all breast cancers.. Not only did the researchers identify the gene, they were able to show how this gene helps tumors spread. the hope is that this discovery will lead to drugs that not only keep breast cancer from spreading but also make it more responsive to treatment."

On a side note thanks to all of you for your advice on chemo, etc... The doctors in WI will not budge on giving Herceptin alone and since I had an extreme reaction to chemo, I wont be able to take it anymore. I am now left to alternative methods.


Snufi

[StephN]

hello snufi -
That research looks like it may hold some promise.

I can't believe that your medical team will not work with you and try some alternate chemo or Herceptin alone. Have you had a second opinion?? You may have to travel, but it could be the key to saving your life!

Can't recall all you details up to now other than the reaction. Did you have radiation? My onc cut my Taxotere by 25% and I managed to get through the 4 rounds. Was not easy, but I did it.

[Debbie L.]

Hi Snufi,

I hope that the research about a metastasis gene leads to something helpful. But the media does tend to announce these "breakthroughs" on such a regular basis that over the years, I've grown jaded. Show me the phase 3 clinical trials with good results (like the adjuvant Herceptin ones, for one example) and I'll get excited.

If you really want chemo, you can get more opinions and more options. There are kinder/gentler chemos that might not bother you as severely yet still provide benefit.

You could probably find a physician willing to give Herceptin alone but I suspect you'd have trouble with reimbursement (unless you are independently wealthy of course). The question (and it's a big question with no hint of answer, yet) of Herceptin alone is being bandied about mostly for really early stage breast cancers (like DCIS or <1cm node negative ones), which I don't believe yours was (correct me if I'm wrong).

You have not really sounded to me like you want chemo, though. Is that an accurate statement? I can tell you what I think you should do but that's of no use to you. I've learned over the years to trust and support each individual's decision, as long as I know that they have accurate and comprehensive information on their decision table. People who are coerced or bullied into undertaking a treatment that they do not want do not, in my experience, do well with that treatment.

It's not all about length of life, sometimes. Not all providers nor advisors get that.

Debbie Laxague

[AlaskaAngel]

This thread brings up a rather important and rarely discussed (if not generally deliberately unstated) aspect about how to choose from proposed treatments for breast cancer.

All patients have the choice not to do any treatment at all after surgery and medical providers ethically should be truthful with the patient by actually stating that as one option when they meet with the patient, whether or not that is what the provider would advise them to do.

By not clearly stating it as one of the choices at the outset, the discussion between the health care provider and the patient is unfairly biased against very logical delay for further consideration.

The reason I bring this up in this thread is because the recently diagnosed person is never told in the process of discussing choices of treatment that by actually beginning any particular treatment regimen, the doors to so many other choices are firmly closed.

One single treatment closes the door to a variety of clinical trials that are only open to the untreated newly diagnosed.

In the stampede to get started on treatment "before a rogue cell" can supposedly start mets (which is still unproven theory), other choices are rarely explored fully to allow patients to "see" the entire range of possibilities.

The group that is most likely to benefit from taking the time to consider many of the other choices would be those diagnosed with early stage bc and who are endocrine-responsive. These people stand a very real chance to be adequately treated with ovarian ablation and continued endocrine treatment. These are people whose risk without any treatment occurs primarily after they are 5 years out; if one adds endocrine treatment PLUS Herceptin and radiation treatment, the possibility genuinely exists for them to deal with their cancer without having had to ever take on all the problems that come with doing chemotherapy.

It also makes a LOT of sense in that it doesn't slam the door right off the bat to newer treatments and trials as they come along.

AlaskaAngel

[Debbie L.]

Excellent points, AA.

The only argument I'd have with your thoughts is about ER+ HER2+ cancer. I hope that you are correct in both of your statements - that recurrence risk is after five years out and that Herceptin plus endocrine therapy is effective. But I don't think that we know much about the recurrence time frame, and I know that we don't know about the efficacy of Herceptin/endocrine tx without chemo. When the adjuvant trials report their longer term data we should have some better idea about time frames of recurrence for ER+/HER+ but still that will be with chemo.

I have a vague recollection that there are some neoadjuvant trials looking at Herceptin alone. Or maybe it's for DCIS. Anyone have info?

It may be that for most or even all, HER2 trumps ER and that all HER2+ is at early risk (and thus probably likely to benefit from chemo). Or not. Frustrating not to know these answers! Good discussion.

Debbie

[Hopeful]

Here is a link to an abstract and a chart below showing the relative benefits of Herceptin within patient subgroups in the Hera trial: http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVUIList




Hopeful

[Lani]

I heard Dr. Slamon talk in October at a conference he was hosting of a new trial of adjuvant avastin and herceptin combination (don't have my notes as to whether they required any chemo before/with but seem to think they did not) and know there are adjuvant trials (abroad vs US) attempting to combine herceptin and an AI only without chemo (these were already done in the metastatic setting and reported at a conference in Istanbul in 2006). Don't know if these adjuvant studies are just in the planning stages or already underway and don't know if having one dose of chemo precludes you from qualifying from them (it might)---but these may be things to look into. There also would be other chemos to combine with herceptin besides the taxanes (the FinHer trial utilized other chemos and the Herceptin adjuvant trials in the EU and the rest of the world besides the US were done after a course of "any reasonable chemotherapy agent" so some got Navelbine, Gemcitabine, Capecitabine, CMF, FEC etc. Are you going to a University teaching hospital cancer center or to a community hospital/clinic/private oncologist's office. There used to be a Dr. Vogel (Charles) who spoke at conferences who made his name by offering alternative chemos to cancer patients if Florida (if they were too vain to lose their hair, he joked). He remained an oddity at conferences but there may be flexibility out there and you can't be sure there isn't unless you seek it out. I think I also heard of a trial of Capecitabine and lapatinib adjuvantly, but that may be further off.

Oncologists attitudes towards off-label use and flexibility may differ.

Even if it ends up you do not qualify (due to prior chemo, distance to trial center, etc) at least you may feel you did all YOU could do to research the alternatives.

Just today someone on this website reported that they survived 5 yrs and did not get herceptin-- statistics may end up being on your side.


One topic to think about. Theoretically tamoxifen without herceptin may not be as effective and may even be worse than an AI without herceptin in her2+ER+ patients who don't get herceptin(and neither may turn out to be as good as Faslodex, according to Dr. Slamon's talks at various conferences). Faslodex is not usually given unless one has failed tamoxifen and/or AIs or is unable to tolerate them (iffy)

You might discuss with the oncologist what they would be willing to treat you with should the cancer come back...and why they are not willing to treat you with that now. They may say there is no proof it is as good as the accepted treatment...but since you are apparently not willing to undergo the accepted treatment, that becomes mute.

These are discussions they have probably not had with patients...a college friend of mine who is an oncologist told me in 30+ years of treatment she only twice had patients refuse chemotherapy, and she primarily treats a cancer for which there is FAR less chance of chemotherapy helping.

I heard Edith Perez, the head of all the North America adjuvant trials of heceptin talk at a conference about how she even recommended that her father, in his 80s, undergo chemotherapy for colon cancer. I am only pointing out that few oncologists even think about the fact that some patients can't or won't have chemo and may therefore not have a Plan B.

[Laurel]

Snufi,

Lani's post was brilliant in its scope and logic. Her suggestions are birthed from a wisdom that begs to be heeded. Please do not even consider going down without a fight. I had a friend who feared chemo so much she fought her breast cancer with supplements and diet. She died in less than three years. She was only in her late forties, beautiful inside and out, a tragic loss to her husband and teenage son.

When I was informed that I was facing not only chemo, but a year of this other stuff (Herceptin), and a mastectomy, my mind was absolutely shell-shocked. I could not accept that this was all necessary for a 7mm invasive component and extensive DCIS. It took me a bit of time to get up to speed on all they were trying to tell me. Thank God for the internet.

At the close of my research I knew I would have to go through chemo if for no other reason than to know that I did everything I could to fight this disease. I surrendered my breasts to the knife, my youth to tamoxifen, and God only knows what else to whatever comes around the corner. What I do know is come what may I fought the good fight.

I told you my first chemo was horrible, really rough. I had my mucous lining of my throat swell to the point where my voice was only a hoarse whisper. It took nearly two weeks to recover. Each AC knocked me on my butt for ten days. Chemo gave me migraines, pain, weakness, misery. I often wonder how Melissa Etheridge could sing at the grammys when I could not even sing in my car like I love to do (badly, yes!). Then the taxol/herceptin combo began. The nerve pain was ridiculous. I mean, seriously, what sadist thinks up this stuff!!!????? But here's the thing, Snufi, I did not want chemo. It terrified me. If I had to do it again, it would terrify me all over again. BUT, I did it. I did it for my children, for my husband, for my aging parents, for my cats, AND yes, I did it for me.

An individual with my pathology has a 1 in 4 chance of recurrence within 10 years untreated. Chemo, dose dense ACTH, Herceptin, and hormone therapy has lessened that ratio to 1 in 20. Those are much better odds to stake your hopes on.

What stinks is we have to play the hand we are dealt. The cards are lousy, but play them we must. The only real alternative is to fold. Don't fold, Snufi, there must be other chemos you can try, or a trial for you to enter.

[Hopeful]

For a different perspective, I was postmenopausal when dx, node negative, triple positive, 1.3 cm combined DCIS/IDC, with a Ki-67 (proliferation factor) of 11 (this last was considered borderline for positive, which, at my testing lab, was 10). The reading I did indicated that post meno, ER+ patients derived the least benefit from chemotherapy. I determined that I was not going to do chemo, and initially wasn't keen on Herceptin because I feared heart damage. My onc persuaded me to have Herceptin, and said he was willing to treat me with Herceptin without chemo. He said I wasn't the first patient in his practice to refuse cytotoxic drugs, though there aren't many of us around. I think it unnerved him some, but he has held it together, and so have I. I also had rads and am currently on an AI, which he would like me to have for 5 years. At the last visit a few weeks ago, he said if the arthralgia side effects got too severe, he would reccomend stopping the AI early.

My oncologist left hospital practice 20 years ago to start his own private practice, because he wanted to be freed from hospital protocols, etc. He believes there is art as well as science to medicine. He is highly intelligent, compassionate and very well respected; his alma mater in MO last year named a building for him. There are docs like him out there, though they may be difficult to find. I was lucky that he is a good friend of a good friend of mine,an internist who helped me find both my surgeon and my onc.

I do feel for you, Snufi, and hope you find what you are looking for. Best of luck to you with whatever treatment you undertake.

Hopeful

[AlaskaAngel]

Snufi,

I do not think it is humane to claim or assume that your individual pain with therapy is not so bad that you can't handle further treatment. Medical providers can and should offer assistance in dealing with it and you may have to make sure you have gotten every bit of help they can give you for that, but if that help is not adequate for you in your opinion then we are here to help you regardless.

What is important at this point is not to lose sight of the major objectives for treatment. The lack of adequate investigation so far in behalf of early stage bc patients for their use of non-chemo regimens is frustrating and confusing, but there are still goals that you should keep in mind.

Hopefully, the one goal everyone would probably agree that you need to pursue no matter what treatment you decide upon is that if you are not fully menopausal you need to work toward becoming so. I know it isn't "fair" to have to give up some of the joys of being young, but achieving full menopause and maintaining it appears to be key in avoiding recurrence.

If you want trastuzumab without chemo, you would have to be willing to continue pursue it until you find an onc willing to help you out. Oncs ARE prescribing it for some elderly patients without chemo, as well as for some patients whose other health conditions limit them from receiving chemo with it. Perhaps the thread recently posted about more leeway for off-label use of drugs might help, but no matter who pays for it, it IS a very expensive drug.

Regardless, please consider the importance of doing all that you can to become menopausal and staying that way.

AlaskaAngel

[Snufi]

Hi to everyone. I went to 3 oncologists. the one I stuck with was a new cancer clinic affiliated with a medical college. I thought they would be on the edge of all new studies. He did offer to add Avastin to the TCH, but I said no. Is Avastin a pill or IV drug? Also I have fibromyalgia, which means even before the chemo I have a lot of pain on most days. So you cna imagine what the chemo did. I was under the impression that TCH is given with Herceptin because the other choices were detrimental to the heart and since Herceptin can be too, the onc try to stay away from other options.

[StephN]

Dear Snufi -

Now that you mention your fibromyalgia we can see how this added in as a chemo complication.

There have been members here (still are) who have MS and manage to get through some form of chemo with that complication. Don't recall any specifically with fibromyalgia.

What do you take for the fibromyalgia? I know there are some new drugs that do wonders for people. Do you have a good rheumatologist who takes care of you?

I wanted to mention Navelbine as a possible drug for you. This is less hard on a person and is very synergistic with Herceptin. It is not normally given for adjuvent, but this is not unheard of in certain cases.

If your fibromyalgia really flares up, I fear that the AI's would aggravate that. Is there an online fibromyalgia support group where you can post these questions? I know there is a big one at Yahoo Groups.

Wanted to mention that the members posting here having survived several years without having taken Herceptin, DID get some form of chemo - you would have to study their "signatures" to see if they only did rads and AI, but this is a rare exception.

[StephN]

P.S. Avastin is given as an infusion.

Was that offered as an alternative to Herceptin? They do not work in the same way.

[Debbie L.]

Snufi, if you want to continue the chemo, you need to find an MD who will work with you. If you're near a large cancer center, see if they have a patient support person or ombudsman and tell that person what kind of oncologist you're looking for. Or if they have a face-to-face breast cancer support group, you might find people there who know of flexible providers.

It sounds like your reaction, if it was physical pain that made you so upset, may have been r/t to the neurotoxic side effects of the taxane. Is the "c" in your mix carboplatin? That also has the potential for neuropathy. You could try a chemo without that side effect - CMF (uh, cytotoxan, methotrexate and flourouracil, spelling may be wrong) has neither neurotoxicity nor cardiotoxicity, for example. It's an older regimen but is still prescribed and certainly has proved its efficacy. The newer chemo agents offer incremental improvements over CMF but generally also increase the side effects. People who've received CMF will tell you the nausea was bad but that's in part because back when they took it, the anti-nausea med choices were much more limited.

Back to the pain issue - if it was simply physical pain, there are many drug choices to treat that and since it's for a limited period of time, why not just dose up until you're halfway comfortable and get through? Was your plan for 4 or 6 TCH's? Even if you had to stay overnight for morphine or fentanyl, it might be an option. Have you seen a pain specialist for your fibromyalgia? They, or a palliative care specialist might be able to help.

In our area, we have only one oncologist who will work with people who do not want the standard chemo for any given cancer. They are out there but it may take some looking and networking to find them.

One more thing - are you taking a vitamin D supplement? Have you had your levels tested? I am reading more about Vitamin D levels and fibromyalgia. Sorry to run on like this but I seem to keep thinking about you ...

Can you tell us what you're thinking? Do you WANT chemo and are not pursuing it because you fear the reaction? Or are you skeptical about chemo's benefits and fearful of its long term effects and thus not really thinking you want/need it to begin with?

Debbie Laxague

[Debbie L.]

Steph, I think there's a newer adjuvant study looking at avastin WITH herceptin or tykerb. It has a funny name. Tic Tac Toe maybe? I can't remember and must get the roses pruned before the sun leaves that side of the house.

And in my last post I see that I got carried away and added a syllable to cytoxan. Duh.

Debbie again

[Snufi]

Hi to all again, I have been a lot of pain the last 10 years, so I am used to it, but the pain I got from the 1st round was really unberable. I thought I was going to die. And I really worry if I take it again there will be severe permanent results. First of all I dont even know if there are any cancer cells floating around. Node negative, margins were clear and no evidence of lymphatic invasion. Wouldn't mind taking herceptin and the hormone drugs since the tumor was 97% ER. Snufi

[fauxgypsy]

I have fibromyalgia and I really don't know if the chemo affected it. I know that there were weeks after the carboplatin that I moved like a tired old woman. But it ended and I am fine. My fibromylagia is neither worse nor better. But the cancer appears to be gone. My diagnosis and prognosis are so clouded at this point that for all I know I might not have really needed all the chemo I had. I don't know what to tell you.