Are we being aggressive enough?

Greg · 04-04-2009, 12:12 AM

Hello to all of you,

I have been "lurking" here and reading many of your posts since my wife was diagnosed with BC in January. She is 52, has high blood pressure, taking medication but it still remains high and has a tendency to be allergic to many drugs including penicillin and related antibiotics, cipro, ace inhibitors, avapro, iodine/potassium dyes, etc.

She had a lumpectomy in early February, margins clear, 2 sentinel nodes removed, both clear, Stage 1, 1.5 cm tumor, 40% DISC, 60% invasive, Grade 3, ER+ and PR+, HER2+++, OncotypeDX score 38 (26 with hormonal therapy), ER Score = 9.4, PR Score = 7.9, HER2 Score = 11.3.

Our first onc recommended the TCH regimen 6x to be followed by 7 weeks of rad, a year of herceptin and then hormonal therapy for 5 years. My wife nearly had a nervous breakdown worrying about the chemo, particularly the carboplatin. We sought a second opinion at a leading research institution in Seattle. They do not use the TCH regimen and instead recommend taxol and herceptin each week for 12 weeks, followed by the rad, herceptin for a year and hormonal therapy. These guys really seem to know their stuff and feel the carboplatin really adds nothing and that early stage BC is being over treated. My wife is much relieved that she won't have to do the carboplatin and that since it is 12 weeks at a lower dosage she doesn't fear the side effects nearly as much.

My worry is that perhaps this treatment is not aggressive enough given that her cancer is grade 3 and Her2+. I would be very interested in your thoughts. I'm very sorry this turned out to be such a long post. Thank you all very much.

SoCalGal · 04-04-2009, 12:37 AM

Hi Greg,
I always think of it as throwing a dart at the dart board of treatment choices. I think that the oncologists like to talk about synergy. They get better results with more chemo. HOWEVER, she is node negative, and ER/PR positive. Those are favorable. I'm sure you know that the idea of adding radiation and chemo is to clean sweep her body.

Honestly, 80% of woman are cured after surgery. We just don't know how to identify them. So doing chemo and radiation is an insurance policy. How much to buy and which kind can drive you nuts but any policy is better than none at all. I understand the fear and worry about chemo. Looking back over the 13 years I've survived, I can say that the fear of each chemo was much worse than the experience. And for me, taxateer was much worse than carboplatin. Hope this helps you sort it all out with her! I'm sure there will be many more replies over the next few days.

WomanofSteel · 04-04-2009, 05:25 AM

I believe that any little bit you do extra over the surgery is fine. My onc likes to think that you take care of the matter at hand and don't go into overkill. I hope your wife does well with her treatment whatever you choose.

Lien · 04-04-2009, 06:22 AM

As I'm very allergic to lots of things (foods, inhalants, chemicals) I can understand why your wife is hesitant to do chemo. I was pretty worried about starting hormonal tx. So my onc and I decided to try arimidex first, for a week or two and see how that went. When I had no problems with it, we added Zoladex shots, because I was premenopausal. Surprisingly, I tolerated radiation very well. Hardly had any skin problems and fatigue was manageable. I didn't do chemo, because my tumor was small.

Someone told me that her allergies were less pronounced during chemo. Presumably because her immune system was suppressed.

I hope your wife finds a chemo combo that fits her situation. I think, if I were in her shoes, I'd prefer to take as few as possible. One can develop new allergies, and it's easier to identify individual allergens if one doesn't take a coctail.

Good luck!

Jacqueline

Lani · 04-04-2009, 06:36 AM

where did you get that statistic from for a Her2+ patient who is Grade 3,
T1CN0M0?

Lien · 04-04-2009, 06:54 AM

Well, if you'd run those path results for a 50 yr old woman through Adjuvant! you'd find that without further therapy she'd have a risk of relapse around 30%, and hormonal tx would roughly halve that risk. Additional chemo therapy could reduce the risk further by about 8 percent. So a recurrance risk of about 7 percent would remain.

In this estimation an AI was used and a 3d generation chemo regimen, like TAC or FEC times 6.

I have no idea whether the Oncotype score would change the Adjuvant estimates significantly.

Jacqueline

Barbara2 · 04-04-2009, 06:56 AM

Many cancer patients want their first treatment to be as aggressive as possible for the reason that if it does return, they want to know that they had done everything possible the first time around, thus not having to live with the "what ifs". Having said that, no one or no oncs want to overtreat. It's a tough call. All the best to you, and hope you can get started soon.

BonnieR · 04-04-2009, 07:13 AM

I received 3 opinions before deciding on my treatment. One of the oncologist recommended TCH "without the C"! He thought it was the more difficult of the trio and, as you say, would not be adding much. So that is not unheard of in this situation. I ended up taking all 3 and was okay with it. But I totally identify with her anxiety and dread. Big scary decisions are being made. But trust the process and keep the faith.

Debbie L. · 04-04-2009, 08:19 AM

First, there are not good answers right now to the questions about stage I HER2+ cancers, especially ERPR positive ones. But there are some answers.

Second, while I am fascinated by Adjuvant!, it doesn't address HER2+ cancer. It does not include this important factor in prognosis (although there's a reference page that says it may be about 1.5 relative risk increase). More importantly perhaps, it doesn't include Herceptin in treatment options. So without those two critical pieces of predictive and prognostic information, it's essentially worthless for HER2+ use (imho). I do not blame Peter Ravdin for this - he's waiting for enough information to become available to include HER2. Right now, even his Genomic version of Adjuvant! is unavailable (undergoing revision) so we can't use it and include your wife's oncotypeDX score, either.

So about carboplatin - if you google carboplatin her2 breast cancer, you'll get quite a few hits. Most are studies of advanced bc but the basic principle (carboplatin seems to add some benefit) is still applicable. There are some adjuvant studies (same google, add word "adjuvant") but all the ones that I found were pay-per-view. Here's a few of the advanced bc ones:

http://theoncologist.alphamedpress.o...stract/9/5/518

http://www.medscape.com/viewarticle/446899

You'd probably like to know exactly how much absolute benefit carboplatin might add. I think that's the question to ask the provider who recommended TCH and also the one who does not use carboplatin. You are entitled to know more than just "we like this one better". We'll hope that their information is similar and your wife can make her choice based on the best information that is available.

Good luck, keep us posted.

Debbie Laxague

Lori R · 04-04-2009, 08:56 AM

Greg,
I might be one of the few members of on this site that was Stage IV at the "get go" and did not have the C of TCH.

My Dr. is a respected oncologist in the Denver area and elected not to use the C as she felt it damaged the immune system unnecessarily.

I continue to ponder whether that was the right thing as I am the type of person (incredibly healthy other than this darn cancer thing) that wanted to be as aggressive as possible.

I have a series of scans next week so we'll see how that goes.

Unfortunately, no guarantees in this crazy world of cancer treatment. I'll keep everyone posted as my case is just another perspective of the ART of treatment approaches.

Just providing support that not using Carboplatin is not unheard of.

Lori

Mary Anne in TX · 04-04-2009, 10:19 AM

Hi Gregg!
I was stage II (you can see the rest in my sign.). I did the Taxol, Carboplatin, Herceptin and did fine with it. I took the meds to keep from being yucky. ma

DianneS · 04-04-2009, 10:17 PM

Hi Greg,

Kudos to you for doing all of the homework for your wife! How lucky she is to have you.

I just finished 5.5 treatments of Taxotere (not Taxol), Carboplatin and Herceptin. I had problems with the Taxotere every time. I had an allergic response which the oncology nurses dealt with by giving me hydrocortisone IV or increasing Benadryl IV. I also had Dexamethazone IV as well as taking it by pill the day before chemo, day of, and several days after to cut down on side effects of the Taxotere, which is standard, but my body just hated the stuff & devised different ways to react each time. The last treatment (March 12) I had a reaction similar to my first infusion: pain and tightness in the chest. Even with all the pre-meds. They ended up continuing the infusion with some saline to dilute the Taxotere. Other people have no problem with it. For me, the Carboplatin gave me no side effects. I am on just Herceptin now.

According to Slamon, the creator of Herceptin, his drug combination of choice is Taxotere, Carboplatin and of course, Herceptin, which is usually given first - at least it was for me, followed by the two other chemo drugs. There is some type of synergy between Taxotere and Carboplatin. My onc said 'it's no cakewalk, but it's do-able'. Course, she didn't have to do it. I had no problem with nausea, and was given Ondanestron in pill form 30 mins prior to IV of Carboplatin, and could take another one 8 hours later but never needed it.

We always wonder if we're doing the right thing when it comes to this. This is a hard decision and if you ask 20 people, you'll get 20 different ideas. I waited until almost 10 weeks to get started with my chemo because I was asking questions. I was told by someone to wait on the Adriamycin in case one has a recurrence as it can only be used once. Adriamycin can't be used in conjunction with Herceptin.

Best of luck and keep the forum posted!
Diannes

'lizbeth · 04-05-2009, 07:01 PM

I skipped the C in TCH. There was a study that showed a higher dose of Taxotere 100/m2 was as effective as the 75/m2 with the carboplatin. I was a wuss and couldn't tolerate the 100/m2.

Also opted out of radiation since I had an immediate reconstruction.

Am making sure I get regular exercise and a better diet. Also trying self hypnosis to build the immune system and stay positive with cancer.

I'm 18 months out from the diagnosis. So far, so good!

'lizbeth · 04-05-2009, 07:04 PM

I did test for BRCA1 & 2 before I made the decision on the platinum salt, carboplatin or cisplaton. I read somewhere that this type of chemo was more effective on that type of cancer. Had anyone else seen an article on that?

'lizbeth · 04-05-2009, 07:22 PM

Greg,

I forgot to mention I'm one of those patients who is allergic to everything. Penicillin, clindamycin, betadine, bacetracin, percocet, and benadryl.

I didn't have any reactions to the chemo.

mamacze · 04-06-2009, 10:09 AM

Hi Greg,
I am so glad you decided to transition from a "lurker" to a "poster" -welcome!
I am not sure my voice will add much to the wisdom you already have here - but I would like to surround you both with a virtual hug - now is a scary, uncertain and focused time for you both. The fear of side effects before the first chemo is very high.
All I can offer is experience; I am er/pr - and her2+++ I was diagnosed with Stage 4 at the get-go, with mets in all 4 lobes of my lungs and my liver. I had a first go around with Herceptin and Navelbine - and have been on maintenance Herceptin since. I also participated in the U of Washington vaccine clinical trial. I became a vegan and have worked my way up to 1 hour of aerobic exercise per day. I have been NED (no evidence of disease) since that fateful day of Stage 4 diagnosis in April 2004, and am still going strong.
You are in the right place - you will learn - and in time contribute.
Love Kim from CT

MJo · 04-06-2009, 01:04 PM

One of my biggest fears about chemo was allergic reaction, since I'm allergic to penicillan (had anaphalaxis) and I've been an asthmatic since childhood. I was especially afraid of Herceptin, and had myself tested for allergy to mice, since mouse embryo was used to line the dish where herceptin culture was grown (don't know if they still create herceptin that way). Also afraid of Taxol, because it's derived from ewe tree. Happy to say that allergies were not a problem for me.

I went to a lecture by a respected oncologist and he said he treats agressively when someone is first diagnosed because you have a chance for a cure. If cancer recurs, it's chronic Stage IV.

By the way, I absolutely believe that we will be able to cure Stage IV in the future. I believe that some stage IV cancer is being cured now. But it's not the norm yet. So I hope your wife will be as aggressive as possible.

Greg · 04-06-2009, 05:24 PM

Wow! I was out of town and came back to check for responses and I am astonished at how many of you took the time to reply! Thank you all so much. Each of you have a different perspective and it is so helpful to be able to hear your experiences and absorb your knowledge. It definitely helps to know we aren't alone in this and we will say a prayer for each of you.

Tomorrow we get the port installed and Wednesday meet with our onc again to discuss the two options. The chemotherapy will probably begin next Monday. I am anxious to get started so that we can finish. I hope that all of her fears will result in her deciding that the actual treatment wasn't as bad as she thought. Easy for me to say, I'm not the one going through it. I imagine we will be around this group for quite sometime and once again, thank you all, you are the greatest!

Bill · 04-06-2009, 10:02 PM

Hi Greg! I'm sorry that I can't help with your chemo. questions, but I can say that you and your wife are now part of a very wise family here. It does get easier once you begin the process. Right now everything is swirling around you and seems so overwhelming, but you are taking the right steps to deal with this situation. Gather knowledge wherever you can. We can already tell, you are a great source of strength and comfort to your wife. Please keep in mind, though, you must take care of yourself properly so that you can take care of her. At times, she will need to draw "strength" from you, and you must be able to give it. Rest when you can, eat as healthy as you can, and nurture your soul/spirit in your own fashion. Please let us know how we can help. Thoughts and prayers, Bill

Alice · 04-06-2009, 11:31 PM

Hi Greg,
I can't add much to what has already been said. I did do the most agressive aproach to my situation but I was stage 3 and that can make a difference. I had carbo with taxol and hercepitin. It was eisier than A/C but not by much. I just wanted to commend you for the support you are giving to your wife and let you know that she will never forget it. You are at the best site to gain knowledge ever.
Best of luck,
Alice
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