Opinions Sought Relative to Chemo Options

lynne.risdon · 02-01-2008, 05:00 PM

Over the last month I am very grateful for the knowledge and insight this website has provided relative to my diagnosis which is described below.(I am also node negative per a sentinal biopsy which removed 3 nodes) I have seen 5 oncologists and each has estimated the probability of a "reoccurence" at 5% or less. Some state that I am in the "gray area". One has claimed I' m cured and others have stated that a 5% chance of a "reoccurence" is so low that they cannot advocate chemo. However, a few have stated that they would proceed with chemo and Herceptin if it is what I desire. They have informed me that my options are Taxel with Herceptin for 12 weeks followed by Herceptin every 3 weeks or Taxetore,Carboplatum(sp?) and Herceptin every 3 weeks followed by Herceptin every 3 weeks. I do not feel qualified to make this decision and would appreciate any input relative to the chemo choices as well as my DX.

Currently, Dana Farber is recruiting for a Phase 2 clinical trial (NCT00542451)for HER2 node negative early stage tumors that are 3cm or less of IDC. The trial will give 12 weeks of Taxol with Herceptin followed by Herceptin every 3 weeks. Is this a proven approach? The oncologist that I am considering states no and advises me to proceed with the Taxetere,Carboplatum and Herceptin.

Vanessa · 02-01-2008, 06:29 PM

I do not know a whole lot about the different chemos, but my first chemo was taxotere, carboplatin and herceptin and it got rid of the mets in my liver. I did have some mets come back in my lymph nodes and in my brain, but I think those are also gone now. I will know for sure on Tuesday. Anyway, TCH was a good combination for me. I am now on Abraxane, Tykerb and Herceptin. Hoping for a chemo break real soon.

sassy · 02-02-2008, 03:26 PM

Here is a link to another thread concerning treatment for early stage.

Hope it helps.

Hello and questions

Sheila · 02-02-2008, 05:52 PM

Lynne
I was in your shoes six years ago...only Herceptin was not available then for early stage then. If you are Her2 positive, I would do the chemo, and herceptin, or the Herceptin at a minimum...I too was in the "gray area"//it seemed that the risk was greater for chemo complications than for a recurrence. Well, I recurred within a year and a half, and now I will be in treatment forever....take everything into consideration when you are deciding, its not an easy decision, but one you need to make for yourself.

DonnaD · 02-02-2008, 08:36 PM

Lynne,
Welcome to the site!

You have a lot to think about. You can see by my signature what treatments I had. Are all your onc's from the same hosptial? If so another opinion from a different hospital would be my suggestion. My concern would be that your grade is a 2 and you are Her2+.

I had a hard time with chemo as it progressed but I would not do anything differently. I wanted to go after this aggressively so I would not have any regrets later. But that is me. I have a friend who is ER/PR+ and chose no hormone therapy. I worried about her all the time.

Continue to do your research and hopefully more will respond here as well.

Good luck and keep us informed.
Donna

JenniferAlice · 02-04-2008, 02:19 AM

My stats are very similar to yours - except my IDC was 1 cm. (er-/pr-, her2+, node neg, 1 cm IDC, rt breast masectomy, grade 3, stage 1, dx Dec 4, 2007)

My onc is suggesting the regimen from the BCIRG 006 trial - 6 cycles TCH. She wants me to stay away from the anthracyclines due to cardiotoxicity since I will be getting the Herceptin.

You can google it and read about it BCIRG.

I will start chemo in two wks.

Jennifer

BethC · 02-04-2008, 06:07 AM

Lynne,
I just finished the TCH chemo. For the first 10 days after the chemo I felt badly off and on but my symptoms ended with the chemo. The second 10 days of the cycle were totally fine. My oncologist was concerned about neuropathy in the hands and feet but luckily I didn't have that problem. I'm waiting for my hair to grow now. I'll do anything to combat this disease. Good luck with your decision.

Barbara H. · 02-04-2008, 02:54 PM

Trials are not proven. That is why they are trials. I have met two patients at the Dana Farber who are on the trial you are considering. I think it is worth considering, but you do have a hard decision. Just remember Herceptin was a trial, before it was offered to people with early stage breast cancer. I wanted it back in 98 and couldn't get it. I think it would have made a difference for me. However, I will never know.
Best of luck with your decision,
Barbara H.

Joan M · 02-04-2008, 07:19 PM

Hi Lynne, I was not in your shoes, but think that you might benefit from some form of chemo and Herceptin, particularly because your are estrogen negative. Good luck with your decision and let us know the outcome. Joan

BonnieR · 02-10-2008, 03:18 PM

Hi Lynne. I was unable to post here for while the board was being updated so I sent you aome pm's.

Jean · 02-10-2008, 06:19 PM

Hi Lynne,
Welcome to our site - you will meet and come to learn what a fantastic
site this is. Not only will you gain great knowledge but the very in support.

In answer to your question. Well, of course it is an individual chocie.
Sassy provided a wonderful link for you to read. We also have lots of
inforamtion on IDC and DCIS..just use the search bar above.

From my very own experience with a tiny tumor please do not let size motivate your decision. I think that since you are ER- you should give
great consideration to treatment. At least if you were ER+ you could
take hormonal mediation, such as an AI/or/Tamoxafin. Next, considering
that your HER2 positive with FISH of 9.20% is considerable and you should at the very least have herceptin. Next, Herceptin works best when in
combination with a chemo. These are known facts. I would consider the TCH ...but if you feel that is too aggressive for you then at least the
the Taxol /herceptin treatments.

While node negative is very favorable I just don't trust it. There are studeis showing many women have recurrence with node neg. There are millions of cells in a tiny tumor so the odds of one small cell escaping is possible. Please remember Her2 loves to travel.

If you want to discuss this just reach out to me with PM and we can speak. Wishing you very best.

Kind Regards,
Jean

AlaskaAngel · 02-12-2008, 03:28 PM

Lynne,

As you may know, there are hundreds of different breast cancers so it is difficult to decide about treatment based on the experience of others who may not have cancer that happens to be like yours, even others who seem similar.

It has taken lots of clinical trials and review and discussion among specialists to come up with recommendations for treatments, but as confusing or surprising as it can sound to be diagnosed as "having invasive cancer" and yet at the same time be recommended not to have intensive treatment, that recommendation is based on the same evidence and evaluation used to recommend others to do treatment.

While it is true that doing intensive treatment is "do-able", there is also a downside.

Use of some drugs causes damage to the heart, and for some the damage has proven to be significant, even for people who showed no indication prior to doing treatment that their heart was likely to be damaged. It is also true that researchers are still evaluating how much damage can occur that does not show up until long after treatment.

Use of some drugs can cause leukemias many years later as well.

One of the more widespread results that doctors overwhelmingly fail to discuss in adeqeuate detail with patients is the loss of libido after treatment, including sexual desire. They also do not discuss the often severe vaginal dryness that occurs after treatment. While there are lubricants available to help with this, what information medical personnel provide seriously underestimates the degree of this problem and also overestimates the ability for simple-sounding solutions like lubricants and alternative sexual approaches to adequately solve it. Those who are less menopausal upon completion of treatment tend to have less difficulty with it, but that varies even among that group.

Use of some drugs can cause neuropathic damage, and this also has been underestimated. Often instead it is mentioned briefly as thought it is common, not very severe, and just "one of the risks". For some it may go away but for others it does not.

Individually we can "have faith" and "think positive" as a way of accepting tough treatment in the hope that somehow we are special and that none of these things will happen to us, or that any effects will be limited for our own situation. Realistically doctors are seeing patients for whom this is not the case and they are trying to spare as many as possible from having to live with these problems by identifying those who are highly unlikely to recur, and then recommending that they not do toxic treatment.

They also have some idea just how many do not respond to toxic treatment even when it is given. Anyone considering treatment needs to understand that someone among us has cancer that does not respond to chemotherapy, and each of us may go through the ugliness of treatment and still recur, as well as have to live with some of the problems noted above.

Deciding what to do or not to do is hard. I wish you the best.

-AlaskaAngel
Dx 2001
No evidence of disease