Are we being aggressive enough?
 

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.

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.

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.

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

Flori
 

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

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

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.

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.

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

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

Treatment decisions
 

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

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!

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?

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.

Glad you posted!
 

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

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.

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!

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

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
Best

Hi Greg,

I am glad that you and your wife have arrived at this site but sorry that you had to join us. I am 53 but have been battling bc for 20 years now. I had bc first 20 years ago and we hit it "hard" with CAF. I lasted 10 years before I got bc in the other breast. The second time treatment was just a mastectomy and I lasted 7 years before I had mets - 3 1/2 years ago.

I have learned over time that there are so many new options and that the hitting it "hard" does not always mean using the chemos with the strongest side effects. Your wife has options and in my opinion making a choice based on many opinions / views from "top" experts in bc who treat many young women will make the choice easier. There is no one right choice or we would all pick it. This science is moving fast and some are more up to date than others on the latest treatments and findings. I have come to believe that the most harsh treatment (side effects wise) is not always the best medicine. That said, some times it is.

Best of luck to you and your wife.

Sincerely, Carolyn

Medical treatment recommendations and consensus tend to be bureaucratically slow to change. As time has gone by and the population of breast cancer has changed, with far fewer patients being diagnosed at higher stages and the vast majority being diagnosed at earlier stages, is the focus on hitting it hard initially with the strongest treatments misplaced?

Do we know, for example, whether there might be a few more recurrences by using less toxic treatments initially for early stage bc, but much longer survival for those who do recur, since they would have more options left to try by not having used them up right off the bat?

Are we still treating bc as if it was all late stage to start with, when the vast majority of the patients now diagnosed don't fit that picture anymore?

AlaskaAngel

1.6 cm HER2+++, ER+, PR+ IDC, some DCIS, treated with CAFx6 and 1 3/4 years tamoxifen, no dose dense, no AI, no taxane, but 7 years of increased vitamin D, organic diet, exercise, no recurrence

I reluctantly add my personal opinion to above well written replies. I am reluctant because my remarks are not in line with those who are eager to do the most for the patient.

People often felt that it is their moral and medical duty to give the harshest or most aggressive treatments to the patients so that no one would feel guilty if anything did not come out right. I don't consider most aggressive must be the best or most optimum treatment. The whole idea of cancer treatments is an evaluation of statistics. From histories of treatments thousands of patients have gone through, the medical panel came out with scientic based results to predict what would happen if the patient is given the same meds. However, the end results are often not predictable. The side effects of these treating methods are most likely certain. Sometimes, these side effects outweigh the benefits of the meds.

Very few doctors would oppose a patient's desire to get the harshest med/treatment, because they are trained to avoid lawsuits. However, you can always put your questions to the doctors in a way that do not infringe on their honest proposals without getting them into legal troubles.

Always remember that chemo kills fast dividing cancer cells, but it also kills healthy cells at a time that you really need them to fight cancer cells. Radiation kills cancer cells but also causes cancers. And, every person has a limit of cumulative dosage of radiation in the lifetime, there is no cure to reverse this process.

Greg,
First of all I am sorry that your wife was dx with bc.
She is lucky to have you checking and asking questions.
I think another opinon would not hurt.

I am a firm believer in we must work with what we have at this time....rather than not treat. These decsions are not easy. But maybe this may help. Grade 3 tumor is based on the micrioscopic appearance of cancer cells, pathologists commonly describe tumor grade by degrees of severity: Grade 1 tumors resemble normal cells, and tend to grow slowly, while grade 3 and 4 tumors tend to grow rapidly and spread faster than the tumors with a lower grade. So your wife at grade 3 is an important feature. While node negative is favorable it is not a guarantee. So you should consider all the issues that make up your wife's tumor..base your treatment decsions on the character of the tumor. Your wifes oncotype DX is high, but most women with Her2 will have a high test results. Most dr. using the test rule on having chemo after a score of 18 to 20...it varies from different dr.

Next your wife is er Positive which also serves as another means for the cancer to grow via estrogen. We know now that her 2 like to travel and is an aggressive bc....with the drug hercpetin we are seeing the stats changing.

I believe we will have to endure some more years before the stats are out to demonstate the benefits of early stage bc patients having treatments.

The problem we have is that the doctors just don't know which patients need the chemo/hercpetin. What we do know is that herceptin works and has changed the odds about this dx. by 50%.

It is a very difficult decsion to make on treatment and each person has to weigh the odds for themselves. Review your pathology report and certainly seek another opinion. But what ever you do please make a decision based on knowlege and not fear.

Please let us know how you and your wife are doing.
Sending you good wishes and prayers.
Jean

Hi Greg,
To me the toughest part of the journey is the time of decision making. My chemo tx (TCH) was so easy in comparison.
Your wife's path report is not a lot different then mine. I think a lot of good oncologists would say no chemo and a lot of good oncos would rec to go ahead and do it.
I know its tough, been there. Like you hear the good news that it was found early and it small, but the bad news......WHAT...CHEMO???? Its a roller coaster ride, I know it.
Anyways, I think it boils down to what are you most comfortable living with in the long run. For me it was doing going the all the way. I know my prognosis was good without the chemo and taking the AIs, but with the chemo, it gave me like a 5% added benefit and to me it was worth it. Maybe for another person it wouldn't be worth it.
I'm glad I did it. I feel like the side effects from the chemo was manageable and I feel totally recuperated from it. Back to normal and better.
Take care. Wish your wife well.
Maryanne

Greg - the next chapter?
 

Hi gang!

I want to thank you all again for providing us with all of the great information. After doing a ton of research and many heart to heart talks, my wife (she does have a name, it's Vickie!) decided to do the TH each week for 12 weeks (followed by rad, H for a year and hormonal therapy). Our Onc would prefer she do A/C before the TH or do the TCH, but Vickie feels the TH is what she can live with. It took a little work to convince our Onc, but she relented and agreed to do this treatment. I would prefer the TCH for her, but again its not me that has to sit in the infusion chair. There is a trial that began in October 2007 I think, that is looking at the TH regimen. It will be awhile before they have anything to report I imagine. So, we do the first infusion on Tuesday. We are both kind of dreading it but anxious to get started.

After looking at what some of you (and other brave souls on this board) have had to go through and seeing how amazingly upbeat and positive you are, I am simply in awe. God bless you all.

Hi Greg and Vickie,

Good luck to you on Tuesday. And do come back to give us a report. I was having quite some reaction during my first chemo. So the next time they added whole bunch other meds to prevent me from throwing up. All the meds worked. I actually gained weight during chemo because I rested quite a bit.

Greg, it will be such a relief to get the first treatment behind you. And hopefully a bit anticlimatic. I mean that in the best possible way!
You and Vickie are the newest members of our band of "brave souls"! We're all just doing what we have to.
Keep the faith.

Lani - Just looked back over this post and saw your question to me. I don't know which statistics you refer to but my reply was based upon my understanding of early stage node negative cancer. I was not quoting a statistic or study.

Flori
 

my comment had to do with the fact that your statistics seemed to perhaps relate to ALL node negative breast cancer irrespective of its her2 status lumped together, rather than for her2+ breast cancer

Hi again gang,

Well, we are no longer Chemo-virgins, well I guess I am, but not Vickie. All in all it went very well and echo'ed what many of you have said in that the anxiety was much worse than the reality, at least as far as the infusion went. It took a little longer than normal due to the herceptin push and the fact that they introduced it very slowly, we were there about 4 1/2 hours. The cancer care center here is like a lodge with fireplaces and all of that, and today it snowed and that made it seem even more "lodge-like". We even had a musician there playing an instrument I have never heard of called a Hang. Very relaxing. So now we are kind of sitting around waiting for the side effect storm that might start in 24 - 48 hours? Guess we'll batten down the hatches and ride it out. I would like to thank you all again for the help you have provided and at the same time apologize for spending so much time on the pity-potty. Our issues seem very minor compared to what some of you have and are going through. My admiration knows no bounds for you all and it is a tremendously uplifting experience to see how you are all bravely facing this dragon, but it is kind of sad here since you have to face it in the first place. I guess I'm glad you are all here to help each other (and us of course) but at the same time sad that you have to be here at all. Take care all.

Greg and Vickie

Hi Greg and Vickie,

Congratulations! You all just crossed one big hurdle.

No issue is minor when it is your own issue. All issues need to be
taken care of. Since it is Vickie's first round, you all just have to wait and see what happens since everyone has different reactions to the chemo drugs. The 'loading dose' is always given slowly. Glad you all enjoyed the music and the wonderful setting there at the cancer center. You might want to create the same atmosphere at home...

'Don't be sad' - you want to pump up the endorphin in your brain and have 'happy' thoughts. It is wonderful that Greg is on the team. Now remember this is going to be a long distance race. Be prepared... We've all done it - you can, too. Cheers.

Well Greg, don't be surprise at all if it seems rather anticlimatical after the 24 - 48 hr wait!! After my first infusion I told everyone not to call me because I might be so out-of-it, I would hopefully just sleep it off! Well lo and behold...I felt....literally....hardly a dent!! Isn't that funny!! Nowadays the meds for the side effects are great!!
Anyways, can't speak for all the others, but for me you don't have to feel sad or bad. Physically, it took its toll, but I was able to ride it out and all is fine. Spiritually it gave me a lot of personal growth and rewards. I am sure it will be for you two too!
Maryanne

Hi Greg,
Glad that the first treatment is now behind you.
The unknown is the worst and it is never as bad as we have imagined. I understand the feeling of waiting for the big bangto occur. Hopefully you will be surprised to find a slight reaction or none at all. The new meds really do a wonderful job. So much so that you may consider to think you do not need them. DO NOT under any reason stop taking the meds. I made this silly mistake and it took a while to get hold again. Take the anit nauesa meds even if she feels 100%.

Remember to change her tooth brush often every 2 wks
to help avoid any mouth infections. No manicures either.

All good wishes,
Jean

You are a wonderful person to come here and get info.

Heres believin' you picked right and you will look forward to many years cancer free! Just stay positive and if anything seems amiss in the future make them check it right away - that is all I can offer!