Very upset and confused by last topic posted

I find the last topic from AlaskaAngel very disturbing. If this study has truth to it, then how can we explain survival rates in node negative, T1 patients or similar dx. reaching 10 year reoccurrence free percentages of 91-93%? Or the promising prognosis of other early stages (85%) for example. And these are based on fairly old statistics considering the new advances in treatment. Many of these statistics come from women followed in the late 70's and 80's. Although I realize we have to deal in reality and truth, it seems that some of these studies just serve to scare us to death. It is very frightening to hear that chemo only "postpones" reoccurrence and survivorship without reoccurrence doesn't seem to indicate that at all.

Any thoughts anyone?

Hi there,
I have to agree with you. I was a little disturbed with this last post. Our onc said that many women with early B.C have been cured and go one to live normal lives and die of something else like old age. This is a v. pessimistic view. I do agree about getting the most aggressive treatment but the idea of going back on chemo when you are all done and struggled throught it is v. difficult to digest. Despite the results, there is a good chance to beat this disease without returning to chemo. I havent' brought up this subject with my mom because it was so traumatic for her the first time, she would say "NO WAY". The mind is also important in healing. Think positive. I would be curious to see if any one else is considering going back on chemo without a recurrence?

Anne

I know the study that I posted is hard to read. It was for me as well. Remember that it is just ONE study. And most info I've seen says that the prognosis for most early stage bc is good. I also agree that it is important to focus on the positive to help with healing.

I also understand that chemo only delays recurrence or limits the number of recurrences.

The problem is that for early stage bc there has been no way to accurately tell which early stage bc's will recur, so although the majority of us would be fine without any treatment other than surgery, many of us are recommended to have chemo, rads, and sometimes hormonal treatment.

I posted the article because I think it does help me to understand (and believe, which is hard for me to do) why some early stage bc patients who are treated end up with recurrence. I think that is very important to understand.

I am very, very encouraged by many of the studies that are being done to help figure out which patients are most likely to have recurrence, like gene profiling.

But in the meantime I think it is just as important to provide the "negative" information as it is to provide the "positive" information, so that each one of us can talk to our oncologists, ask reasonable questions, and find a better answer for our own particular situation.

We know there are women who are early stage and who recur and wonder why they did when so many don't. I think that these women might have something to say about my suggestion regarding further clinical trials to see whether additional Adriamycin simultaneously given with a taxane and Herceptin could have prevented recurrence for them.

I also think it is possible that women are out there who refused chemo in the first place because they were told like I was, that it only delays recurrence or limits the number of recurrences, and they realized that most women in early stage don't ever have a recurrence so they focused more on maintaining their immune system than on destroying it with chemo. These women are not even discussed. If you were one of them and read the study I posted and heard about the new Herceptin results, perhaps knowing that the new combination regimen has so much more to offer might be of interest to them.

I just didn't find adequate discussion about this possibility in the ASCO information.

A.A.

Hi there:

The statistics in AlaskaAngel's posted topic made perfect sense to me. The statistics that you quote don't pretaine to the HER2+++ sub-group of breast cancer patients, but to the full body of all bc patients.

The HER2 sub-group stats are much less positive. If you have a small tumour and no nodes (as I have) then your statistical chance of surviving 5 years is about 2 in 3. The outward going stats for 20-year survivors is about 30%. (Yes I know that the treatments have changed in this timeframe and don't apply to us- especially those diagnosed & treated within the last 5 years, but those are the current survivor stats)

Given this additional information, I think that it is very important that bc patients diagnosed as adjuvant push for herceptin.

What interests me is that herceptin by itself isn't nearly as effective as the herceptin/taxol combo. Thats where you get the FULL 52% survivorship benefit.

I am thinking about asking for the double barrel for a couple of rounds....

I'm 1.25 years out from chemo....I've already been forced into menopause so I haven't get any fertility to preserve and I'm back in shape from my chemo rounds plus I found that it didn't bother me in the end to wear my hair comando... As far as I'm concerned, it's get it completely gone (the micro-mets cancer) now to avoid 30% chance of using herceptin in the palliative setting.

Regards,
Merridith

Keep in mind the statistics presented at ASCO was raw data for all of the adjuvant clinical trials.

Within the next few weeks both Genentech and Roche will be presenting the data in a more organized fashion and we will be able to draw more accurate conclusions.

Until then, it is best to consult with your own oncologist about the data presented.

Regards
Joe.

I am still confused why there is so much descrepancy between HERA and North American results for the clinical trial Herceptin after Taxol.

regards,
Julie

Hi there, I am in Australia and we had ground breaking news last week that after trials of Herceptin it was revealed that we have a 47% better chance of survival than those women who are unsuitable candidates. I new that already because I have been on it for nearly 3 years. I had my original surgery, radical mastectomy in 1998 and they gave me 2-3 years at best because my BC was very ugly, not hormone responsive and agressive, I haven't stopped having treatments in this time but I am now entering my 8th year of treatment so I think I can agree with the statement. I try not to read negative statistics, and each day that passes is a day closer to a cure. I have my bad days of depression but then I just take a double dose of my antidepressant and everything is great again. To put you in the picture more, I have survived heart failure, 3 valves failed, nothing to do with BC treatment but treatment for a thyroid malfunction, I fractured my shoulder which needs a replacement, nothing to do with BC treatment either, I have a connective tissue disease which destroys the immune system so my body tries to kill me off as well, over 100 doses of radiation, not to mention all the CT with their nuclear medicine in my system, AC, CMF, Femara Taxotere, Navelbine, Xeloda, Herceptin/Carboplatin/Taxol/ recently Xeloda again and Aromasin, I don't think I have missed any but my memory slips at times. Hope this helps, I was 44 when diagnosed and I have a 15 year old daughter who I intend seeing grow up so I finally retire.

Love & Hugs Lyn.

P.S. to my last post, I have had all my reoccurences in the lymph glands and skin and now remaining breast. I will have a CT on my chest Wednesday and a MRI on my head neck and right shoulder. I saw my GP today my blood pressure is perfect, my pulse normal, all my bloods in normal range, except for Alk Phos which is related to connective tissue disease and my colestoral has gone back to 3.5, just about perfect. The secret is to stay on top of this disease so it doesn't creep up on you. When anyone asks how I am, I reply "WONDERFUL" in a cheery voice and smile, it shocks a lot of people but makes me feel good.

Love & Hugs Lyn

Dear Lyn
This is so similar to me. I have been quite lately as the carbo/herceptin to mop up after 2nd mastectomy knocked me about and I had a blood transfusion 2 weeks ago and no chemo last week ( other than herceptin) cause of low platelets.
i will have the carbo again this week but a t areduced rate.
I have had all recurrences to skin and the other breast - nowhere else.
i had pre surgery doxorubicin/doxetaxol - surgery - radiation - then onto the hera trial then maybe a skin recurrence - then ongoing herceptin.
love
linda

[StephN]

Hi Gals (and Guys!) -
It just seems to me that these stats, even as raw data, DO show that early Herceptin does have a positive affect on decreasing spread of our disease. Getting it early to wipe out enough cells so that our own immune systems can handle what is left makes enormous sense.

This way there is not such a big gamble that one has to take when mets occur and only then is Herceptin given with what I believe are lower positive results than those adjuvent studies show.
This is all from a "ballparking" of the stats as I have come across them and not from any statisticians' aligning of the two groups into a comparison. I would like to see this as part of someone's work, to verify and finetune my impression.

I can also base this feeling from my participation in a clinical trial for women with hard-to-treat mets, which I am one of 3 out of 20 participants who have made it past two years out of the treatment. Not all of them had the benefit of herceptin, but myself and a much younger patient are the farthest out from our last chemos and are both on Herceptin. That means that it is nearly a miracle that I am still alive when you take all these cases into consideration. It was postulated that NONE of us would have survived with only "standard" treatment with our aggressive disease. And few of us did anyway even with more aggressive treatment.
So, get that little devils while the "gettin is good" I say. Even with the new drugs, many of us on this board are having to flit from one to another to stay in the game somehow.

I also look forward to Lapatinib or any other drug to keep my cancer at bay.
Bottom line:
Once you have mets and are Her2 positive, you have to stay on Herceptin indefinitely, which may be avoided if it is given earlier and is effective.
MHO.

To Linda, how long have you been dancing with this disease? I have come across so many women who just "Had a Lump" and nothing to worry about and they have died, and yet here we are with all the doom and gloom dumped on us at diagnosis after they receive the pathology. A young soapie start on Home and Away Belinda Emmet was diagnosed in 1998 when she was in her 20's and they just took the lump and said you will be fine, a bit like Kylie Minogue, well 2 years later she thought she had strained her back on the movie take "The Dish" and after a couple of different opinions she had Bone Mets, now she does not divulge where she is at but she got married recently and she looked like a skeleton with skin pull tight, considering she was a beautiful bright young women, I have seen ladies that look like this and only last another 6 months, even my nephews mother-in-law came to visit me in hospital after surgery and she had a Mastectomy 12 months before and she was told she only needed the lump removed but she insisted on the breast and had no rads or chemo, 2 years later she had bone mets after much pain and then seizures where they detected brain mets, she passed away 3 years ago next month. I could probably go on so it seems we do have a 47% chance more than the other victims. We may have to do our own survey with the ladies on this site, something Joe might have to brainstorm.

Love & Hugs Lyn

Data will take a few months to publish.

Here is an email that I received from a contact concerning the HERA trials:


"Dear Christine,

the further release of data is entirely in the hands of the collaborative groups and we as Roche have very little influence on this.

Nevertheless, I can tell you that we aim to see the trials presented at the ECCO conference in Paris in autumn this year and in addition to this work on the primary manuscripts has been initiated."

I would imagin it would be the same with Genentech's trials.

Warmest Regards
Joe

The more I learn about alternative medicine and cognitive psych, neurobiology, and psychoneuroimmunology, the more I'm convinced that the "answer" to why some people get cancer, others don't. why some get reoccurences, suvive, etc. has a whole lot to do with the factors that aren't generally studied such as diet, attitude, personality, spirituality, etc.

I wish they'd do a big study to examine the correlation of a whole range of these factors to see what does and doesn't make a difference. I'm convinced that the most important variable in my recovery is me, not some external treatment.

I encourage eveyone to get and watch the DVD for "What the Bleep Do We Know." It turns much conventional wisdom regarding traditional scientific medical practice on its ear.

Even if the universe operates by forces far beyond my control of understanding, if I do end up biting the bullet, the things I do can improve the quality of the life I do have left. That's often a lot more than people without a potentially fatal disease can manage, so there's really nothing to lose.

The more I learn, the more hopeful I feel. Remember that studies are simply numbers and averages and don't apply evenly. They don't and can't control for all variables and likely don't even try to for the ones that make the biggest difference, because of the limits of the mindsets of the researchers (as brought up in this film).

My point is, take heart. I'm convinced it's nowhere near as bleak as it may appear!

I recently read some truly fascinating material based on studies indicating that our immune system CAN learn and adapt. (I'll give you the reference if you're interested. Of all places, it was in one of Daniel Goleman's books on emotional intelligence). Several studies showed a direct correspondence between the brain (neuron firing patterns) and immune system cells. Sure something to think on!

The immune system is obviously key in fighting this disease. The question becomes one of how to "train" it to do that. Maybe it's not just the Herceptin but other things you're doing that are assisting the impact of Herceptin.

In his book on Health and Healing (excellent, BTW), Dr. Andrew Weil discusses the power of the "placebo effect" which is not what many doctors and scientists think (and denegrate) but the body's ability to heal itself--likely through the immune system.

So glad to hear you're not becoming another sad statistic. Betting you won't, either!

Thank you ladies for all your positive responses. Whoever said that this is a difficult and different journey for each person is right and you can't let the numbers mean everything, you thave to continue living.
XOXO
Anne

Dear Lyn
I was diagnosed in October 2003 and have been on various chemos ever since for skin mets and then the 2nd breast. I don't think of it much now as it just is part of my life.
I have my herceptin with the chemo nurses every Thursday and we discuss various things.Now I have carboplatin every 3 weeks ( although as I said it will be 5 weeks this 2nd round due to low haemo and platelets). Luckily for me I can work and run the kids everywhere etc.
I am so happy to be getting herceptin and like you am interested in Lapatinib.
i don't know if you remember but I was to go on a trial last year and got into the arm for just xeloda - no herceptin allowed and not the lapatinib/xeloda arm. After much anguish and ethical dilemas of pulling out of a trial I did - so i could continue with herceptin.I feel it was the right thing to do now.
love
lindaw