Herceptin W/o Chemo For Early Stage B/c

[Unregistered]

A relative of mine has been diagnosed with Invasive Ductal Carcinoma 1.8 cm, Her2 +++, ER+.

2 oncologists have recommended chemotherapy, tamoxifen and possibly herceptin.

My relative is extremely reluctant to go with chemo because of the side effects and emotional impact it will have on her.

A French friend of my family contacted an oncologist in Paris who is treating a woman with very similar pathology as my relative with tamoxifen and hercepting, but without chemotherapy.

As far as I can determine, there are no clinical trials in the U.S. concerning the use of Herceptin without chemotherapy in early stage B/C with Her2 overexpression.

Why is this? Does anyone know of any Doctor treating early stage patients with Herceptin but without chemo? How about patients in early stage receiving Herceptin but not chemotherapy?

Any information would be greatly appreciated! : )

[DeborahNC]

I can't answer your question, but I can tell you my own experience.

My onc insisted on Taxol with the Herceptin for my Stage 1, node neg, grade 2, ER+(weak)/PR-, .7cm, IDC. I could only tolerate 9 of the suggested 18 infusions. I now do Herceptin every 3 weeks until November.

[Unregistered]

Debra,

Did you do A/C before taking Taxol?

If so, what was your regimen?

Thanks a lot for responding.

[DeborahNC]

No AC was recommended for me. I had only the Taxol/Herceptin. From all I've read here from women who have had both, Taxol is more easily tolerated after their AC experience.

Best of luck to your friend.

on edit: It seems that my onc is now treating early BC with Herceptin only. I'm not sure if it was because the patients refused the chemo or if it was the onc's idea.

[ingrid]

Iam new to this support group. I am trying to decide, if I should proceed with my onc's recommendation of Taxol (6x) and Herceptin for one year (2xmos.).
I am afraid of the potential side effects of both. I am considering to go with Herceptin only. Any one have any feedback on side effects? Anyone taking Herceptin by itself without chemo or hormone therapy?
I am also taking lots od therapeutic level supplemnets, getting 2 acupuncture sessions per week and exercising a lot. I am also considering injecting myself with Iscador (anthroposophic medicine).
Stage 1,Gr.3,ER/PR-,HER2/neu2+,ampl., lump.1.5cm,neg.sentinal node - 5/06
thanks,
Ingrid

[MJo]

I was Stage 1. I was so afraid of the side effects of Taxol and Herceptin. I am asthmatic and I went to a pulmonary specialist. He told me to go ahead with both Taxol and Herceptin, as pulmonary effects, if any, would likely be temporary. As for Herceptin, I read that people who have mouse allergies could get allergic reactions, so I actually went to my allergist and got tested for mouse proteins. Negative. So you see, I was doing all I could to keep myself safe, but at the same time wishing someone would tell me "Don't Take It."

Ironically, after all that fear, I had very little trouble with Taxol and Herceptin. Taxol is a natural chemo -- made from the Pacific Yew tree. In folk lore, the ewe is a symbol of eternal life. I liked that. A woman in my support group has refused Taxol because she is afraid of the peripheral neuropathy (numbness in hands and feet). That is her choice. I had very little trouble with neuropathy.

Tumors have millions of cells, and the likelihood of one breaking away seems pretty high to me -- and my tumor was only .55 CM. My oncologist calls HER2 "Nasty" and urges me not to take any chances with it. However, when I was so very afraid and agonizing over Taxol, he offered to give me Herceptin alone.

I'm wishing the very best for you and that you make the choice you can live comfortably with ...MJo

[Becky]

Your tumor is over 1cm. I would consider 4 AC followed by 4 taxol with herceptin and then herceptin out to a year. If not that, definitely take the taxol combined with herceptin and herceptin out to a year.


Becky

[firstplace]

Look on Dr. Susan Love's web page. You may find information there.

[firstplace]

I have been told that the Her2 amplified was like a death sentence before Herceptin. The problem is they don't even know if the herceptin is working or not unless it comes back. At least with breast cancer. I was also .55 centimeters. I had 4 treatments of Adriamicin/Cytoxin and then 6 weeks of radiation, combined with herceptin. I don't remember when i started taking the Tamoxifen. Probably after chemo. I changed oncologists because I wanted the taxol and now I am getting taxol and herceptin, taxol 1x/week for 12 weeks(have 8 to go) and herceptin until January every 3 weeks, which will make it a year. My concern is, since the her2 gene is the problem, how can they tell me that the herceptin is permanantly killing the her2 and not just putting it into remission. I am 46, pre-menopausal unless the chemo induced menopause is real.
I have had 3 doctors tell me it is a good idea to get a hysterectomy but it seems from what I am reading here that the her2 goes for the brain, lungs, etc. I found out I had cancer Sept. 22, 2005. I had 2 biopsies, 2 lumpectomies and a port put in my chest over 4 months and had to wait for the new Oncotype DX test to come back. I didn't realize it was done on so few people, but any test that shows me having aggressive cancer that wants to come back at a 40% risk was enough to make me want chemo. I am glad I only have 8 more chemotherapy treatments with the taxol.

The doctors get all excited about the numbers, but we are not numbers. We are people who are fighting for our lives.

[firstplace]

From what I understand about herceptin, it is an inhibitor. I was originally given only A/C and then radiation and herceptin. I started on tamoxifen, changed oncologists and am now taking Taxol because I want the best possible chance of survival. Her2 aggressive is nothing to sneeze at. Be aggressive and don't just go on your doctor's advice. Do your research get 2nd opinions or 3rd if necessary.

I am amazed at the differences of treatments all the doctors are doing even from one department in a hospital to another! My invasive cancer was in my tissue and was not detected in any of the tests and was only .5 cm and yet i have 40% chance of recurrence within 10 years if I hadn't gone through chemo, and they don't even know if it worked. I had DCIS that was negative to hormone therapy, her2, etc. and 1/2 cm away was the deadliest cancer we can have, and they found it by MISTAKE. It wasn't though, it was God literally saving my life! It showed up on no tests. If the doctor hadn't missed part of the DCIS I would have this aggressive cancer growing in me for almost a year now without any symptoms.

[ShaneNryansMom]

Hi! I'm 38 years young and was diagnosed in May. I had a mastectomy. I had one invasive 1.7 cm. tumor and a whole bunch of DCIS, with no lymph involement. I'm her2neu+, er+ and pr+. My treatment? Four sessions every tthree weeks (with one to go of the Chemo) of Taxotere, Paraplatin and Hercepton. I'll then continue with Hercepton for an additional 9 months making it a total of one year.
I found this site today on a google search. I'm happy I did. Thank you all for your posts. I have two small children and plan to be around for my Grandchildren. In order to do that, I will do ANYTHING that research recommends. It's 'insurance'. They say my margins are clear, but if there are ANY lingering cells, I say, "kill them" ... As for Hercepton, anyone who can get it is lucky. It's the one drug know to actually destroy her2neu kinds of cancer. So, if you are her2neu+, then they actually have a real answer in dealing with it. I think that's AMAZING!
As for side affects ... Yeah, horrible! However, when my hair started falling out, I was grateful because I knew my treatments were working. I really hoped I've helped someone with this. Lord knows, many have helped me!

[mts]

For some reason, I just feel that herceptin alone is "chemo light". Although it has been very successful for many later stage women, it seems that most of them are taking the Herceptin in conjunction with something else. If anything, the Taxol, which is easily tolerated should be taken w/the Herceptin in order to have the "synergistic effect". There are women on this site who regret not having the chemo.
Also, for docs in one center to prescribe so many different regimens is just one more reason to be as informed as possible so you can make the ultimate decision. Oncs are humans, and often need a little guidance from the patient.

Maria (MTS)

[al from Canada]

One thing you shouldn't loose sight of when making decisions about taking chemo or not, the major side effect of not taking chemo is death. If you have HER2 BC and want to live, take the chemo, it's probably not near as bad as imagined. The other thing is that it has pretty well been accepted that tamoxifen and herceptin is contraindicated, where the tamoxifen and herceptin create cross resistances. There has been encouraging results with faslodex and herceptin in post-menopausal HER2+ women.
Al

[Dianaq]

al from canada
I am sorry but I have to disagree with you. I have lost everyone in my family except my sister to cancer. There is so much difference between her2- and her2+ that I don't see how they can be treated the same. I will be making my decision on 9-11 and my gut tell me not to go with chemo. I had 1.5 inv.csitu, node neg. her2+, grade 2, clear margins. After reading as many current studies that I can I have not seen any significant data that chemo helps in ESBC, her2+.

[janet/FL]

Hi Diana
It is a hard decision. I have a similar diagnosis to you. I refused A/C chemo at the time (12-2004) as having Herceptin afterwards was not an option. I waited several month--after surgery and radiation before I finally was able to get Herceptin. I did then accept Taxotere along with it as there is felt to be a synergistic effect between the two. However, the choice is up to you. I am satisfied that should the cancer come back, I did what I felt was necessary and did not compromise my health unnecessarily, which I thought A/C would have. If the cancer does not reoccure, then I will never know if I could have just skipped the chemo and Herceptin!
Hugs for these hard decisions. Let us know what you decide.
Janet

[ShaneNryansMom]

I am truly sorry you lost so many loved one's to cancer. Being HER2neu+ makes cancer that more aggressive. However, cancer is still cancer. The chemo is insurance on killing cancer cells. If your margins are clear, that's great. Mine are clear, too. But I can't understand the risk in not killing other cancer cells that lab tests can't find ... YET. It takes about a million of these cells to become one centimeter. That's a lot of time. HER2neu can make it spread. The fact that you caught it early is graet. The Hercepton in addition to chemo, in my oppinion and in the oppinion of my oncologist, is the best insurance you can put on your life. How about the chance of no re-occurences? I just finished my four sessions of taxotere and paraplatin ... And four of my Hercepton's (9 months more to go of Hercepton) Sure, it wasn't fun. I felt sick and lost my hair. My hair started growing back while on chemo. I'm so happy I did it. Again, I have a 'one up' on the cancer not ever coming back. I would never change my choice.

[Bev]

Hi 1st Place, They may want to do the hysterectomy as uterine cancer is a side effect of Tamoxifen. I do tamox and no one has suggested the surgery yet. You can avoid this side effect by switching to an AI if you're postmenopausal, but AI's cause osteoporosis. So pick your poison. I would guess the side effects for both don't occur that frequently. As I'm tolerating tamox so well, I think I may try to stay on it for at least a year. BB

[stephanie59]

Diana: I was diagnosed 8 years ago in October with Stage II (one node positive) slightly estrogen positive, very HER2 positive (3+) tumor. Herceptin was not even an option since it was being used for late stage or recurring tumors. I went for the most aggressive treatment I could find which was 4 AC's and 4 Taxol. The AC was hell the first time especially, but with antinausea drugs it went ok. I had my treatments on a Friday afternoon, slept all weekend and drug myself into work on Monday morning. I lost most of my hair and 10 pounds (a bonus). Then came Taxol. I remembe telling the nurse how nice it was not to have lost all my hair. Her response was to just wait. Sure enough after one treatment of Taxol I was completely hairless from the top of my head to my toes including my eyelashes and eyebrows. No nausea, but I felt like I was walking on my ankles and my hands were numb.

Would I do it again? In a heartbeat!! I am still alive and six months of discomfort is worth 8 years of life. Child birth was more painful--chemo is just uncomfortable and inconvenient.

With all the advances, most doctors still don't know what works and what doesn't. Every patient is different and what works for one may not work for another. Don't take the chance that chemo will not save your life--you just don't know for sure and you have to take advantage of every treatment. If Herceptin was available to me I would be on it right now and anything else they think will keep me alive.

I think it is Dr. Susan Love who says something like this: "You never know if you are cured of breast cancer unless you live 20 years and die from something else." You are never cured, you just learn to live with it and survive. Do the chemo and anything else they recommend. Good luck, Stephanie

[stephanie59]

Herceptin was not available to me when I was diagnosed in October 1998 with a 2cm, estrogen positive (1+), HER2 positive (3+) tumor with one positive lymph node make me Stage II. I went for 4 AC's and 4 Taxol even with the risk of heart damage. A couple of years ago I had reconstruction and had to have an EKG which came out perfect--so no heart damage. I do not regret having the AC. I am an 8 year survivor without Herceptin. I knock on wood everyday. Stephanie

[Dianaq]

Stephanie,

I decided to go without Chemo. I have still not read enough data to support it with her2+. I opted for a clinical trial at Kaiser. Which consist of Herceptin, tamoxifen, ovarian shutdown and radiation. I feel pretty good about my decision.
Good luck to us both.

[stephanie59]

Diana: Sorry I had not seen this message before I replied to your other one on the other group site. I'll be thinking about you. We don't live all that far from each other--let me know if you need any handholding. Stephanie

[Dianaq]

Well, I decided on 9-11 to go without chemo. I will take Herceptin and Radiation and am joining a clinical trail that will also shut down my ovaries. Luck to us all!

[Dianne M]

Hi

I am very new to the whole chat room scene. Although I have been reading for the past week. I am looking for information on whether to do chemo and Herceptin or just herceptin alone.
I was diagnoised with early stage bc through mammogram, no lump was detected. Had a lumpectomy Nov. 1st. They found foucal microinvasion, took 2 node neg. ER,Pr neg but her2 3+, I will start radiation the first week in Dec. and go for 7 weeks.
Found out Thursday, the day the FDA approved herceptin for early stage bc that the onc wanted to do 4 session of chemo and 1 year of herceptin. I am looking to do only heceptin. Also the onc is having the genetic testing done on the her2 gene to see how agressive it is. Has any ones onc suggested this test and what have they found out?
Thanks This has been a great site.
DianneM

[Texasteacher]

I know chemo is scary as anything---but it's the best shot at surviving!!! I was pregnant when I was on A/C for 4 cycles---and my baby is awesome!!! With the A/C, Taxol, radiation, and Herceptin--my recurrance rate is approx 10-15%!! I like those odds!!!

It's annoying ---but I'm still here!!!


Eileen

[ElaineM]

There was a successful clinical trial using Herceptin with Arimidex which is in the same category as Tamxofen. Perhaps the doctor, the nearest cancer hospital or medical school would know about it.
Peace,
ElaineM