Late Herceptin......

[PatS]

I know this subject has been discussed a lot her and I apologize for bringing it up again but I need to make a decision and really have no one else to discuss it with so here I am. I was diag. stage 3 (her2+++) in July 2002 and finished chemo (A/C then Taxotere) on 01/10/03, so have been out of chemo for over 2 1/2 years. Recent bone/ct scans were all clear. At onc. appt. last week I discussed herceptin with her. She said their is no science to make her believe that giving herceptin this late would be of any benefit. She also said that if it was something I felt I really needed to do she would do it as along as I understood that she didn't know that it would be of any benefit. I asked her what she would do if it were her, her daughter, or mother and she said she wouldn't do it. There's also the issue of if I do herceptin now and do recur and need it later would I be resistent to it then? So, I guess I need to figure out if there's any reason to believe Herceptin now would be worthwhile or am I just grasping at straws??? Any comments/opinions would be much appreciated. When I mentioned that several women here in my position were receiving late herceptin she said she would be interested in knowing who was doing it so if anyone is willing to provide the name and/or location of their onc. who is giving them late herceptin I will pass the info to her.

Thanks.

Pat

[doh2pa]

Hi Pat,

I was at the same decision point in May when all the ASCO data was released. I was 10 months out from the finish of my chemo. My onc said the same thing, no science, yadayada... I had clear CAT/MRI in April. Then in September I found two small lumps on my strenum and now I have two small liver mets. So wish I had pursued it. Having said that, no one has a crystal ball and you may never recur again. I don't know where your onc practices, but how about trying to consult an onc in one of the big major medical centers in the country - Sloan, Komen, Johns Hopkins, etc and see if they concur. I know it's a hard decision so I think you need as much info as possible.

Good luck and good health.
Donna

[Lyn]

I have to agree with Donna. I was shocked to hear on our news here in Australia last week that only patients who are basically on their last ditch effort can receive it free here. I have been on it for 3 years now, and getting it for free. I was supposed to die in about the year 2000. My onc said I should have been dead long ago. I have survived many complications along the way and not related to the cancer treatment, in 2003 heart failure in 3 valves and my left ventricle which they worry about being damaged with Herceptin was functioning brilliantly, about the only part of my heart that was. The answer to the question, my BC was a very agressive type and when I had my first HER2 test in 2002 I was strongly positive 3+, since further reoccurences and testing, I was again 3+ in 2004 and since another reoccurences in remaining breast I was HER2 and recent biopsy I was HER1-2 so as far as I am concerned the Herceptin has either slowed down the big C or mutated the cells so they are not agressive, I know they are not agressive because one lump in my neck took almost 12 months to confirm and then followed with another 6 months treatment, so as to the argument you may need it later, why wait when you can prevent it, a bit like a stitch in time saves 9. Unless you are truly comfortable with your onc and have faith in the decisions made for you, move onto another. Two years ago my onc was off sick and I had another one of his staff, I told her I wanted an MRI on the lump that wasn't confirmed and she said "Why" there is nothing we can do for you anyway, (wrong answer) she didn't know me very well and I told her I had a 13 year old daughter that is why I wanted to know, so she hummed and conisdered it then said she would have to ring my onc Boris, she only got out the words Lyn Wants, amd then hung up, he told her to give me what I want, and a lesson was learnt from this, they hadn't even considered MRI's and this proved they needed to do more in diagnosing, of course it picked it up and I had Herceptin/Carboplatin which stalled the growth, you could see it and feel it but did not show up in the CT or Ultrasound. I told him that the ladies on this site added Taxol, he was for it until his nurse told him it was too toxic, I just said OK, and then went and did my research on this site and faxed the info to him and guess what I got the Taxol added and it shifted it. I turned up for the chemo and told the nurse they were adding Taxol, and of course she said no it was too toxic, I said well you better check with Boris, you would have thought someone let a gun off in her ear, she had to organise all the pre meds, the Taxol was ordered but they hadn't done this before and now they add Carboplatin to just about everything, especially the Taxanes. So you see, they know some of the things some of the time but we seem to know all of the things all of the time. We can be here for you and hold your hand, you will have to decide to give your onc the flick or be more assertive, we have all learnt this the hard way and want to try and prevent any unnecessary worry. Bottom line if you can get it, have it, it is no different to any other treatment, if it works it works if it doesn't then we will just find something else. Just because you may have a reoccurence that doesn't mean that other drugs can't be added to the Herceptin, some drugs work better with it than without it and it isn't a cytoxic drug. Hope this helps. I have been doing this since 1998 continually and I mean continually, my biggest break was about 3 months, not sure if I was truly NED, but it was nice for a while and lets face it, every day longer is a day closer to the cure, wouldn't be surprised if we don't come up with it on this site, many heads stick together here and we are better than any research team they have going, we have a lot more at stake, we all want to survive.

Love & Hugs Lyn

Love & Hugs Lyn.

[al from Canada]

Dear Pat,

This is a very similar situation to what's going on at our clinic. Our onc told us that they have re-tested cancer samples for HER2 and were in the process of calling up 30 past patients who are "cured" and offering them 12 months of herceptin. People are really struggling with this issue.

Having read many personal and professional reports on this board for almost 2 years I can only say " DO IT AND DON'T WAIT!!" This may be that extra little kick your body needs to stave off a re-occurance.

Good luck,
Al

[Sheila]

I have to agree with Lyn & Al....if you can get it, take it...it is very tolerable, & any small risk is greatly outweighed by the benefit you will receive....it may just be that insurance your body needs to avoid any recurrence.
Hugs
Sheila

[Eileen in Michigan]

I wish I had known about this site a week ago! I started Herceptin again last week and will continue for 10 months. I've been cancer free (I hope) for 4 yrs. But I was worried about a recurrance - I had stage 3, Her2++ and no clear margins after mastectomy. I debated the pros and cons with my onc. and agonized about the possible heart problems. My onc.checked with all of the top onc. in the country and the bottom line is no one knows the right answer. We both decided that is was good insurance to do it. If I don't take it and the cancer recurrs we'll both be mad at ourselves and if it does recurr, at least we'll know we did everything we could. Plus, you can live with congestive heart failure if that should happen (hopefully, NOT).
We are so lucky that the drug exists to give us hope.

Eileen

[Eileen in Michigan]

Dear Pat,

Dr. Marcia Leipman at the West Michigan Cancer Center in Kalamazoo helped me decide to go back on Herceptin.

Eileen

[SandyBB]

I started Herceptin just this past Friday. I was diagnosed 2 years ago as stage 2B and had pretty aggressive chemo and radiation (finished up in 4/2004). I am also on tamoxifen. I have had no signs of recurrance. However, my onc called me in Sept. and asked me to come in early to discuss going on Herceptin. She has looked up all her BC patients diagnosed within the past 2yrs who were HER+ and recommended they do a once a week for 1 year round of Herceptin.
For me, it was an easy decision. I have felt relatively defenseless since finishing my treatment and I have had too many weird scares in the past 20 months to make me think the cancer had reared its ugly head. I have never been able to put the fear of recurrance out of my mind. Going on Herceptin makes me feel like I am actively doing something to fight off the return. I hate to use corny words like, "empowered", but that's kinda how I feel right now - especially when I read about all the stage 4 women in this forum who have had such incredible results on herceptin.

[AlaskaAngel]

I'm talking with my onc about this too. I'm still NED as far as anybody knows, with lumpectomy 2002 followed by CAF x 6 and rads and hormonal treatment. I am considered to have a "very good prognosis" without any other treatment. I kept my port in when I learned I could not be part of the clinical trial as a "node-negative, under-2-cm", hoping that eventually I might be able to benefit WITHOUT having to demonstrate mets/recurrence first.

When you all talk about Herceptin I am wondering whether some of you are doing:

1. A brief course of Herceptin
2. A year of Herceptin
3. Indefinitely on Herceptin
4. Combining it with a taxane, for how long?

Given the cost of Herceptin and the number of us who are wallering around in this situation, I think the oncologists who decided that people in our situation couldn't have Herceptin as part of the clinical trial were not as bright as the average bc survivor....

It may sound foolish, but I also debate with myself at times the issue of having such an expensive drug, and whether that means essentially that others end up going without it in the "big picture".

Given that in the U.S. for those who are diagnosed with my exact same diagnosis today (even those whose prognosis is as good as mine) it would be considered standard treatment, it would seem that it probably makes sense to have it whether or not the wizards of oncology can say with any certainty that it helps.

Comments welcome.

AlaskaAngel

I started on Herceptin in June. I was 9 months out of standard chemo-- the reults of the study had just come out in May when I had a follow up visit with my onc. She said Herceptin was available but the researchers were using 6 months as a cut-off. We went back and forth and I finally asked her what she would do and she said she would " go for it". She had consulted with a colleague at Dana Farber Cancer Institute in Boston and he was really no help other than to say they were using the 6 monthe cut-off. So my feeling was is 3 months going to make any difference in terms of effectiveness ?? Probably not so I started it. Even the experts don't have all the answers-- they simply don't know.
If I were you-- I'd go for it.
Carol
Dx'd 3/04 IDC- 2.2cm. 4/18 lymph nodes positive, 3 very small DCIS near primary tumor- er neg her2 pos.
a/c x4 Taxol x4 37 rads finished chem in August, rad. end of Oct. 04

GOOD LUCK

[StephN]

Hi -
The article below is very interesting and should erase ALL doubt you have about taking Herceptin at ANY time you possibly can. The article title says "advanced cancer" but the benefit should be the same no matter your stage.

There are new studies that are narrowing which patients will do best on what drugs. Here is one that your med-onc may not be aware of. After the San Antonio Breast Cancer Symposium last Dec, I became aware of PTEN as an important component for Her2 positive cancers.
With my immediate and dramatic response for my very fast moving liver tumors (mets from B/C), I assume I must have a high PTEN level. Have never had a test for it, but the day may come. We know there are some factors which have allowed me to survive basically a death sentence. Science is uncovering them little by little. Why me and not some others?? What was different about my body chemistry??
If you or any of the others considering late Herceptin have a chance to take this drug, it could shut down any micro-mets that are brewing in your body before they become detectable.
What you can take from this article is that Herceptin either will work well for you no matter how many times you take it or (lesser odds) it will not. If you can get some other factors activated that work against your cancer, than this is an added bonus.
All best wishes.
Powerful new cancer-fighting property of Herceptin

Pharmaceutical NewsPublished: Monday, 23-Aug-2004 Printer Friendly Email to a Friend



For many patients with advanced breast cancer, the cancer drug Herceptin (trastuzumab) has offered new hope when traditional cancer drugs failed to work, shrinking tumors and sending some patients into remission.

Now Dihua Yu, M.D., Ph.D., and her colleagues at The University of Texas M. D. Anderson Cancer Center have uncovered a powerful new cancer-fighting property of Herceptin, an antibody-based drug that targets a protein on breast cancer cells called HER-2 (also called ErbB2). The discovery explains why some HER-2 positive patients don't respond as well to the drug and also offers a potential solution that could allow more HER-2 positive patients to benefit from the treatment.

The study, which appears in the August 2004 issue of the journal Cancer Cell, demonstrates that the presence of a protein called PTEN in HER-2 positive patients' tumor cells is a powerful predictor of who will respond to Herceptin. In normal cells, the PTEN protein helps control cell division, but in about half of breast tumors PTEN levels are very low or the protein is completely missing. Those PTEN-missing tumors did not respond to Herceptin treatment.

"Our goal is to allow doctors to quickly and accurately tailor cancer treatment to each individual patient," says Yu, professor of surgical oncology, and the study's principal investigator. "Tailored treatment means giving each patient the medication most likely to benefit her, while simultaneously minimizing side effects."

In a recent clinical trial at M. D. Anderson, 65 percent of HER-2 positive patients taking Herceptin in addition to chemotherapy had a complete response rate, compared to 26 percent taking chemotherapy alone. But doctors have had no way to predict who among HER-2-positive patients, which account for about one-third of all breast cancer patients, is most likely to benefit.

"Previously, it was known that Herceptin binds to the HER-2 protein and causes it to degrade," says Yu. "But this process takes days. What we found is that very quickly, within ten minutes of administration, Herceptin activates PTEN, a powerful tumor suppressor gene. We are adding a very new understanding of how Herceptin works."

The scientists studied the tumors of 47 metastatic HER-2 positive breast cancer patients who had received Herceptin and chemotherapy as well as 37 patients who received chemotherapy alone. PTEN levels varied widely among both groups, but only 11 percent of patients who had a very low level of PTEN responded to Herceptin, versus 66 percent of those with high levels of PTEN. There was no correlation between PTEN level and response to traditional chemotherapy agents called taxanes.

"Our results show PTEN is a very powerful predictor of who will respond to Herceptin," says Yu.

Breast cancer patients whose tumors make too much of the HER-2 protein are at much greater risk of metastasis because the HER-2 protein stimulates cells to grow and spread aggressively.

When Herceptin attaches to the HER-2 protein, it interrupts those growth signals, which are sent through a series of signaling proteins inside the cell. PTEN acts as a natural brake on tumor growth by, among other things, blocking the effect of a growth promoting protein called PI3K.

Yu and her colleagues discovered that if they administered a drug that turns off PI3K in breast cancer cells in the laboratory, they became much more sensitive to the effects of Herceptin. The PI3K inhibitor mimicked the action of PTEN and restored the ability of Herceptin to slow or stop the growth of cancer cells.

Yu pointed out that there are several experimental PI3K inhibitors currently in clinical trials for treatment of breast cancer that, if they prove to be safe, could potentially be combined with Herceptin to boost its effectiveness in PTEN-missing breast cancers.

"In the past we looked for patients' HER-2 expression, and if HER-2 was high we gave them Herceptin," says Yu. "In the future, when patients come to M. D. Anderson we will look for patients with high levels of HER-2 and PTEN expression and these are the patients that we expect will benefit most from Herceptin. For those with low PTEN, we hope to be able to offer combination therapy with a PI3K inhibitor that might work synergistically to boost the effectiveness of Herceptin."

Yu says she and her colleagues in the Breast Medical Oncology Department are planning a clinical trial to be conducted at M. D. Anderson in which they would test each patient for HER-2 and PTEN proteins and offer targeted treatment based on the level of each protein.

"There has been a need to develop new markers that can improve the efficacy of Herceptin," says Francisco Esteva, M.D., Ph.D., an associate professor in the Department of Breast Medical Oncology. "This is one of the first studies that allows us to understand the mechanism of Herceptin resistance and offers a potential way to counteract it."

"In the past, selecting a particular chemotherapy drug has been a lottery," says Yu. "Patients had no way of knowing if they would benefit. The new generation of cancer drugs is providing targeted treatment with fewer side effects and giving patients a better chance that a particular treatment will work for them."

The study was funded by grants from the National Institutes of Health and M. D. Anderson Cancer Center. Yu's co-authors include Yoichi Nagata, M.D., Ph.D.; Keng-Hsueh Lan, M.D.; Xiaoyan Zhou; Ming Tan, M.D., Ph.D.; Esteva; Aysegul A. Sahin, M.D.; Kristine S. Klos, Ph.D.; Ping Li; Nina T. Nguyen; Gabriel N. Hortobagyi, M.D. and Mien-Chie Hung, Ph.D. of M. D. Anderson; and Brett P. Monia of ISIS Pharmaceuticals.

http://www.mdanderson.org

[Julie2]

One of our members( I forgot her name, but she posted a while ago about this) is already participating in the PTEN trial in MD Andersen.
For the people who are not able to benefit by Herceptin alone, this really gives a great hope.

Julie

[Lolly]

I was dx Stage IIIB, er/pr- Her2+++ in '99, had the gold standard tx and progressed to Stage IV 6 months after finishing rads. Since I had fairly advanced cancer at primary dx, I probably would have progressed anyway even IF Herceptin had been available to me, but of course I wonder and I have to put in my 2 cents: If you can get it now, do it!!!
Also, regarding the question of whether Herceptin now would cause resistance later when/if needed, I have read reports (somewhere, will try to find them and post later) that when Herceptin has been suspended for a period of time, the cancer cells can become re-sensitized to it and it can be used succesfully again. Hope this is helpful.

<3,
Lolly

[Lolly]

P.S. I've looked and can't find any references to the statement I made above, so guess I should retract that, unless anyone else has also read of this effect?

[Lyn]

Hi Pat, forgot to mention, you never have to apologise for bringing up any subject you like, and as many times as you like. We have a saying on this board we sometimes have chemo brain, sometimes we forget what we have read or replied anyway. The amount of new readers who just sit back and don't feel comfortable posting yet, draw from the knowledge passed on so it is very likely that the information you have asked about just may well be what someone wants to know and isn't game enough to ask, and didn't see it last time anyway, so ask away as many times as you like and you can guarantee there will be new input that we will all welcome.

Love & Hugs Lyn.

[jjfromcanada]

I finished chemo Nov 02 and started herceptin August 22, 05. Yeah a long way out, but since it is ER/PR- and I had 4 nodes and it was Grade III, Herceptin is the only thing I have. And it was strongly recommended by an onc I have utmost respect for and trust with my life. I have to pay for it in Ontario because I am beyond the 6 month cut off imposed by OHIP, but I figure it is worth it to try.

Whew, I've finally found a place where there are people in the same boat as me! I originally was told that I was HER2- but since I moved I have a new onc. and she tested my tumor (was banked) and it came back as HER2+. The lab results say that the "ratio of HER-2 to DEP-17 is greater than 4.0). Anyone know what that means other than it's positive?

A little history: Dx'd 8/02, lumpectomy with ax node dissection, 19/41 nodes positive, ER/PR+, FEC X6, 7 1/2 weeks rads, oophorectomy, arimidex. My new onc. was going to take my case to the dept. meeting and was going to be calling one of the researchers that conducted the study that just came out in the New England Journal of Medicine to talk it over with them. She did tell me that she thinks I should do it. I'm supposed to be seeing her this Monday (Wilma-willing!) so we will see what she has to say then.

Meanwhile, I am trying to decide if I want to do this or not. Getting another port and doing every 3 weeks for a year is not sounding like too much fun. I know, I know...this isn't supposed to be fun, but 3 years out from dx I was kind of hoping that one day I might be able to not think about cancer every day. I AM leaning towards going for it right at this point. Just on a fact finding mission for now.

I will be haunting this website and will probably register myself soon.

Thanks for all you ladies for being here; I know that this will be a great place for info!

I've been wonderig if it makes more sense to have Herceptin every 3 wks x4 treatments and then take a break for 2 months and then repeat the same routine 3 more times. Since the Herceptin is only effective if it's on the cell walls there may be a better chance of having some wild cells hanging around if there are breaks between treatments.

Just a thought as I continue to convince myself that taking it for a year is the right thing.

[Her2neu-bie]

O.K., I registered and am copying my post that I made under "unregistered"

Also a correction to my post.....what I should have said was thanks to everyone here (not just ladies!) for all the info. And, I just got a call that my appt. with my new onc. for Monday is cancelled due to Wilma...wah!
Linda R.
-----------------------------
Whew, I've finally found a place where there are people in the same boat as me! I originally was told that I was HER2- but since I moved I have a new onc. and she tested my tumor (was banked) and it came back as HER2+. The lab results say that the "ratio of HER-2 to DEP-17 is greater than 4.0). Anyone know what that means other than it's positive?

A little history: Dx'd 8/02, lumpectomy with ax node dissection, 19/41 nodes positive, ER/PR+, FEC X6, 7 1/2 weeks rads, oophorectomy, arimidex. My new onc. was going to take my case to the dept. meeting and was going to be calling one of the researchers that conducted the study that just came out in the New England Journal of Medicine to talk it over with them. She did tell me that she thinks I should do it. I'm supposed to be seeing her this Monday (Wilma-willing!) so we will see what she has to say then.

Meanwhile, I am trying to decide if I want to do this or not. Getting another port and doing every 3 weeks for a year is not sounding like too much fun. I know, I know...this isn't supposed to be fun, but 3 years out from dx I was kind of hoping that one day I might be able to not think about cancer every day. I AM leaning towards going for it right at this point. Just on a fact finding mission for now.

I will be haunting this website and will probably register myself soon.

Thanks for all you ladies for being here; I know that this will be a great place for info!

[PatS]

Thanks everyone for your input. I really am leaning towards doing it. It seems to me that it could work for any cells I might have floating around. I guess it would just make the decision a little easier if I was getting some sort or encouragement from the professionals. I emailed Dr. Love last week and she sent me a reply saying she wouldn't do it (didn't say why not though).

Here's her reply:

This is of course unknowable but I would probably not do it at this point if I were you. The fact that you are disease free two years out is a good thing and I would let it be.

Susan Love MD MBA

I was hoping she'd recommend it. So, I guess I need to mull everything over for a few days.

Linda R. - Welcome, I'm glad you found us! I know how you feel....I'll look
forward to hearing what your onc. has to say.