early Christmas present--10 yr overall & bc specific survival results just published!

Mtngrl · 03-12-2015, 06:15 PM

Dear Jean,

I had no intention of starting a fight. You make some good points. However, there are studies to back up what I said, and I'm not being defeatist. Please re-read what I said. You're putting words in my mouth.

The study that started this thread said Herceptin improves ten-year survival to 84% from 75%. That's a big improvement, and it is right to celebrate it. But it's not a cure. In that ten-year period, 16% still died. And the article doesn't give figures for overall survival.

Symptoms can arise at any stage, and if they do then we have great tools for diagnosing and treating. You make it sound like you think not getting annual mammograms means you won't know you have breast cancer until it metastasizes. That's not the case. On the other hand, many women with HER-2+ bc are metastatic at diagnosis, even with annual mammograms. A friend of mine turned up at Stage IV one month after a "clean" mammogram.

I'm advocating for prevention and cure, and for a rational allocation of resources. That's all.

Love and peace to all,
Amy

AlaskaAngel · 03-12-2015, 06:31 PM

The confusion is understandable, in part because it becomes less of a factual discussion and more of an emotional one.

Unfortunately, it is too easy to generalize about the effectiveness of trastuzumab due to the lack of scientifically based trials to demonstrate who benefits from the addition of chemotherapy and who does not.

Drug development customarily is done through testing a therapy upon a specific population, using specific characteristics and parameters for what demonstrates effectiveness and what does not. It then applies only to the specific population that had the specified characteristics required for the trial.

The original trials primarily were specifically designed not to include early stage HER2 bc patients with tumors under 2 cm or patients with negative nodes, and included the requirement for those patients who did qualify with those characteristics to receive trastuzumab AND chemotherapy.

Applying the results of those trials to the group of patients who were not included in the clinical trial and who were early stage then led to the unfortunate and UNPROVEN general practice of combining chemotherapy with trastuzumab.

There is uncertainty as to what extent the addition of chemotherapy is merited because of the lack of proof based on the combination therapy used in the first place as part of the clinical trials used to demonstrate "the effectiveness of trastuzumab".

There are those whose cancer simply does not respond to trastuzumab plus chemo. For that group, their chance to have some other form of therapy that IS effective for them sooner is thus delayed and damaged by the use of trastuzumab plus chemo.

Add to that the number of patients whose cancer remains in remission without trastuzumab but with chemotherapy.

Add to that the unidentified number of patients whose cancer would remain in remission without trastuzumab but who genuinely may have benefitted instead from some other treatment leading to menopause other than chemopause, such as other methods of ovarian ablation.

As long as we have infinite amounts of drugs and money to fund all the cost-intensive treatments and all the testing involved and huge loss of productivity, we don't do the homework to find out who benefits and who does not from which therapies. It is emotionally appealing, but poor use of resources.

We continue to apply blanket therapy to the broad group of early stage patients at great personal and general cost that would be better spent on patients that have been scientifically proven to benefit.

StephN · 03-12-2015, 09:42 PM

I just want to add that in my "neighborhood" in 1999, testing for HER2 WAS standard. Mine was determined by the IHC rather than newer FISH method.

There was a thread here many years ago exactly on the topic of HOW members' cancers were detected. There was a great number who found it themselves after a fairly recent mammogram. In my case I found a "lump" just three months after a clean mammo report which was accompanied by a letter warning me that I had dense breasts and should not forget to do self checks as often as I could.

I will go ahead and say in my case I attribute my long remission and continued life to Herceptin. But I am not everybody, and since I got Herceptin AFTER I was diagnosed stage IV, will point to its addition to treatment and long use of Herceptin alone as the trump card.

It pains me that more members here and women I know off this board did not get a better result with their treatment that included Herceptin or the other newer targeted treatments.

Better statistics are coming and just take so darned long to develop. In the meantime, most newly diagnosed would rather be safe than sorry. Or at least feel they are "safer."

Jean · 03-13-2015, 08:48 AM

Steph,
Thank you for pointing out the attributing factor of women with dense breasts, which places another issue all together. Like you, I had he same issues back in 90's. With unknown suspicious lumps in the breast.

My heart aches for those that have not had the results as you have experienced. For sure Herceptin took a huge bite out of this nasty Her2 and I am happy at the same time for that progress.

Herceptin has opened my eyes to see the glass half full. When I was dx. I was so frightened (natural reaction) I remember thinking Her2 OMG this is the worst news. Then doing my search I learned about Herceptin. Had to fight for it. Did it make the difference? I will never know for 100% but Dr. Salmon convinced me that all women should be treated.
With those feelings in place, I admit I am sensitive to the newly dx. women (like many others here) who come onto the site and are seeking information.
While we know Herceptin is not a fit for all, I have to agree with you that "rather be safe than sorry."
I am hoping the research will bring forth more trails for all the unknown moving parts to this disease.
In the meantime doing what we can to remain healthy and strong.
Jean

AlaskaAngel · 03-13-2015, 10:37 AM

Reassurance is a comfort at time of diagnosis. Sometimes we would rather be reassured than pursue a higher degree of truth upon which to base our trust.

What is cruel about that is the professional endorsement of practices based in part upon of the failure to demonstrate proof of efficacy of therapies recommended, which plays upon our hopes, and results in the diversion of much of the limited resources.

It may sound hard-hearted because we do care about each other's feelings and like to reassure each other, but do we want to focus our limited resources on reassurance regardless of efficacy and cost, or do we want to focus them upon efficacy?

Should we continue to encourage the professional practice of shotgun application of combined therapies through the failure to demonstrate proof of efficacy by clinical trial? Have we seen clinical trial proof offered by professional direction, demonstrating whether or not there are early stage patients who maintain remission through the application of trastuzumab when used as a single agent? Or are we continuing to see earlier and earlier stage patients still being "professionally" offered the shotgun combined therapies?

As mentioned, there is a trial of the use of trastuzumab without chemotherapy. Will it provide proof of efficacy for most early stage patients, or will it provide proof only for elderly patients (who do not require chemo in addition as one method to bring about the hormonal changes of menopause)?

Jean · 03-13-2015, 07:23 PM

AA and Mtn.
Why not address your statements to Dr Salmon and have him respond. I think he would be the best person to respond to your positions regarding herceptin and mammograms.
I have his email.....let me know.
I would truly like to read his response.
I admit, I was reassured by Dr. Salmon that Her2 TCH was the correct treatment for me.
His exact words...."you saved your life by NOT listening to the dr. in New York, as they have missed the boat." This was in 2006. Dr. Salmon's trial of TCH was not published at this point when I consulted with him. I do not remember him saying it would work for everyone of course. But the trail showed impressive and compelling results. For me I know it is not reasonable to think a cure would work 100% for every single person. Our chemical and biological make up as humans is vast. Similar to when antibiotics work for some and not for others. There are thousands of vaccines and drugs that work for a major group but there are always a sub group that does not benefit.

Limited resources, by who standards? Dr. Salmon was able to obtain the funding for his research. Those monies were donated by organizations that believed in his research. Who expected that herceptin would work for 100% of the population? This was based on the facts that Dr. Salmon presented for his research, not on reassurance. The only reassurance Dr. Salmon offered was his strong educated opinion as a researcher to tell me that TCH was the cutting edge and to certainly have the treatment. Good enough for me. I can honestly say I knew going in there was always the risk, and also the chance I could recur in a short time and maybe in the future. I could also die of something else.

I think this entire discussion is valid since it comes up often on the site.
If you are not comfortable to reach out to him I will be happy to send him your thread and ask him to respond with your permission since it is your thread.
I am just tried of the same old beating up the what if's of herceptin and what the research did not do. But it is valid like I said, so why not hear why the resources are being wasted from the mouth of the research man himself?

This life as we know it today right now offers us no guarantees.
I don't believe in Santa, the tooth fairy or the Easter bunny, but I do believe in Dr. Salmon. I am not a emotional wreck who requires reassurance. I wanted facts to make a health decision based on what we do know. We knew herceptin was working for some.

I still take the position that when a women is dx. those early days regardless of stage do need reassurances. By that I mean, not pie in the sky reassurances, of course telling the accurate truth that herceptin is a game changer and a wonderful life saving drug. We know it doesn't offer a cure or is 100% promise.

I focus on the many who have had positive results, certainly not turning a blind eye to the facts. Again, medicine is also an Art not just a science.
Just like those arrogant doctors who become annoyed with a woman who asks too may questions or are too upset to suit him. He dismisses her, as he can't or won't take the time she may need, because she is upset. How often have we read this on this forum? That is a dr. who is sour and more than likely could use a lesson in bed side manners. Or maybe he just has too many sour grapes under his belt.

I am sorry but it sounds like sour grapes to me.
Again, lets put it to the researcher and see what he has to say about the research plus costs and effectiveness.

Jean

Jean

Jean · 03-13-2015, 09:25 PM

http://video.pbs.org/video/2365362396/

Mtn. posted this link to the video.
These talented people have hope and are using drug that do work for some and not others. Are they wasting money, time for those that it doesn't work for?
I look forward to viewing this when it airs.

AlaskaAngel · 03-13-2015, 11:50 PM

I'm looking forward to seeing the upcoming documentary too.

It is meaningful to provide encouragement for those who just want to be told the treatment will work (whether it actually will for them personally or not), because treatment has improved for many HER2 positive patients.

But maybe there is room for some genuine practical support of the group of people who have done that same extensive, expensive and difficult treatment with no personal benefit at all? What do we say to help improve their situation? "It really is too bad.... that treatment is a miracle for some like us, you know.... even though many early stage patients never needed it at all, it is a great idea to continue to throw their money and time away.... it never did work for everyone... maybe someone will figure it out someday, somehow.... it is okay, you did your best... maybe you'll be lucky enough to find the right combination in time... best of luck... stay in touch?"

JessicaV · 03-15-2015, 07:49 AM

I think it is important to understand drug resistance when it comes to Herceptin and its sister drugs. The reason why these drugs stop working for many HER2+patients ie on HER2+ tumors or tumor cells is that when the drugs block off pathways that the tumor cells initially use, the CST tumor cells can mutate to form daughter cancer cells that use other pathways. Thus they get around the "blockades" created by these drugs.

Perjeta blocks different pathway/s to herceptin, so if both drugs are used at once, the chances are higher of killing off all the cells before the CSC manage to mutate into something that uses yet another pathway.

The researchers of one study into CSCs and metastatic processes recommend that eating brassica, tumeric, soy, and green tea all help knock out relevant pathways and interfere with tumor development too. If they can get a big enough bunch of these type of drugs together, blocking enough of the main pathways in one go, and the resistance issue is going to be a lot less of an issue, and blanket treatment for all HER2+patients might be so clearly effective that the equation becomes simple.

In time there may be vaccines to fix the tumor suppressors that stop working and that might be the treatment of the future. But in the meantime, I am very grateful to have been treated with Herceptin which my onc said has changed my 5yr survival chances from 45%(with surgery only) to 92%

AlaskaAngel · 03-16-2015, 11:01 AM

Thanks for the helpful explanation about resistance, to keep all things in perspective.

Jean · 03-17-2015, 09:39 PM

Hi Debbie,
I read the study again.

one over-diagnosed breast cancer for every 424 women who received mammography screening in the trial. Debbie is that considered a high number? I don't know, as I consider that a fair amount for error.

Cancers detected in the mammography arm were significantly smaller than cancers detected in the control arm (1.9 cm v 2.1), and the 25 year survival of women with breast cancer diagnosed in the mammography arm was superior to that of the women with a diagnosis in the control arm (70.6% v 62.8%).

The difference in mortality associated with tumours less than 2 cm compared with larger tumours is substantial.

Women with non-palpable breast cancer detected by mammography experience long term survival that is superior to that of women with palpable breast cancer.

The above was taken from the study.
Early detection does change the stats.
Do you think that a recent study of data will show a marked difference (her2) since early stage are being treated verses prior to the FDA approval? Also better treatments with early detection since 1980/1985?

Pertaining to exposure of radiation: recommendations to have an annual mammogram every year beginning at age 40. While there's no question that radiation exposure increases the risk of breast cancer, the risk is highest when exposure occurs at a relatively young age. For example, young girls treated with radiation for Hodgkin's disease have a very high risk of breast cancer; up to 50 percent develop it later in life. The older you are when you begin to have mammograms, the smaller the chance that the radiation exposure will contribute to breast cancer. If you begin screening when you're over 50, radiation exposure from mammograms is highly unlikely to increase your risk of breast cancer later in life.
At the end of the day each women has to be educated and informed so they can make the very best health choices that they are comfortable with.

newgg · 03-24-2015, 04:14 AM

Coming up on 11 years after my HER2 journey in 2004 !! Goodness, do count me in being thankful for Herceptin. Had to FIGHT to get approval in those early years and the first to insist that HER2 levels be done with all that blood work. We have come a long way !! Blessed for sure with power of faith, strong family support, doc who listens, medical research, and for sure.....this HER2 board. Every opinion, every discussion, every thought, every hug. Every single one of you.....THANKS !!