Who else had Taxotere, Cytoxan, with their Herceptin?

Boo307

For a couple years I thought I had received the standard TCH chemo regime, but then discovered that my C was Cytoxan, not Carboplatin in the standard regime.  Who else has had the same regime as I did?  Were you part of the Phase II trial of that regime?  A couple of reports have been published on the heart safety and tolerence of the patients in that trial, but I haven't seen anything published in a year or two. 

Thanks.  Boo 

orange1

That's what I would have had if I hadn't accidentally found out from my second opinion doc, that that's what my local onc was planning for me.  I had assumed it was C - carboplatin.  When I found out local onc had planned on giving me cytoxan, I challenged him and he gave me the carbo.  I never did learn why he usually gave cytoxan.  Did you're doc tell you his rationale?

bonniebug

I have exactly the same dx 6/2009.  Everything the same.  I was given this regimen.  I'm thinking that it might have something to do with the heart or someone's age, or the stage.  I tolerated all of the above, and completed one year of Herceptin 9/2010.  I must say, though, that my body compostion has changed.  Lots of loose, fatty skin, and I am not fat.  I wasn't like this until I had chemo and Herceptin.  Don't know which one caused this, or if it was a combination. I don't think you ever return to normal.  Also, I have one eye that is a problem with tearing.....still! 

bucky317

BOO--- I too,am having this chemo regime.....Taxotere, Cytoxan and Herceptin.  Finished the chemo part in July and now just the Herceptin till April and Arimidex for 5 years.  I was not part of any trial. I also don't see alot of ladies on this regime. I am interested in seeing some study results if you know of any.

bucky317

bonniebug  I tolerated this regime quite well also. (although I have nothing to compare it to) I have loose belly "jiggle" also, which wasn't so noticeable before! I have lost about 10 pounds from before chemo and intend to take another 10 off with diet and exercise.  I had tearing in both eyes from the Taxotere. ( taxoteres) but it finally stopped about 4 weeks after my last dose.

BlairK

My wife will start chemotherapy on 11/29.  She has Stage 1a IDC and the IDC part was small - 3 foci of 1 mm, 1 mm, 3.5 mm.  She had a double mastectomy on 10-14.  The oncologist is recommending Taxotere Cytoxan and Herceptin.  Cytoxan is an alkylating agent and Carboplatin is also an alkylating agent but it also contains platinum.  I am not a doctor but it sounds like on this bulletin board Carboplatin is more frequently used but Cytoxan is fine and may have slightly less side effects than Carboplatin.  Again, my wife's IDC tumor was quite small - maybe 5-6 mm.  Maybe Carboplatin is indicated or more frequently used for larger IDC tumors.  I am looking at bucky317 - she has IDC less than 1cm and orange1 IDC was less than 1 cm and her original recommendation was Cytoxan.  I found research studies with overall good results for the use of Taxotere, Cytoxan and Herceptin sponsored by Sanofi-Aventis and other research as well.  I would be very interested in getting as much feedback as possible and have posted in several places about this.  I am in China on a business trip and told my wife to ask the oncologist for more explanation about Cytoxan versus Carboplatin.   ALSO and VERY IMPORTANT is the NCCN.COM website - which contains a 100 page document for patients on various guidelines for diagnosis, surgery, chemotherapy and radiation.  Google NCCN.com - a very excellent website.

Boo307

Thanks for all your replies.  BlairK I would be interested in the link to the studies you mentioned.  All I have found about Taxotere, Cytoxan, and Herceptin are preliminary reports from a phase II clinical trial.  I believe a Phase II trial is to determine safety and a Phase III trial is to find if the treatment is effective.  Maybe someone can clarify the difference.  Anyway my oncologist never told me that this is in Phase II testing. 

From a report of February 2009

"Dr. Jones said the primary objective of the Phase II trial was to determine the overall safety and cardiac safety of four cycles of TC plus trastuzumab in patients with HER2-positive early breast cancer

This is a nice little schedule, Dr. Jones said. After 12 weeks, the patient is done with chemotherapy.  He added that to his knowledge, oncologists are already using the regimen-This gives it justification, he said.

Jennifer Eng-Wong, MD, MPH, Assistant Professor of the Division of Hematology and Oncology at Georgetown University Hospital, commented, The regimen looks safe. Now we'll have to wait and see efficacy data."

.http://journals.lww.com/oncology-times/Fulltext/2009/02251/Short_Course_of_Docetaxel_Cyclophosphamide__.10.aspx

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=35484

NCCN is a great website, as is UpToDate.com as well.

Boo

BlairK

The 2009 report with Dr. Jones is the one I was referencing but I am expecting the possibility of receiving other research from the Dana Farber Cancer Institute of Harvard and Johns Hopkins Hospital.  My wife will get a second opinion from a highly regarded oncologist who is also a medical school professor and I may get some more insights or research from her.  I am against my wife having AC - TH and my wife does not know all the details like I do.  We are asking around about Taxotere Carboplatin Herceptin which is the primary TCH regimen.  I hope my wife will ask a lot about the difference between Cytoxan and Carboplatin to both oncologists and that more information will come to me via the bulletin board.  I believe that if the second oncologist concurs - my wife will go with Taxotere Cytoxan and Herceptin.  My wife's IDC although multifocal is small - 3 foci of 1 mm, 1 mm and 3.5 mm.  By the way, your IDC again is 1 cm - much bigger than my wife.  You are ER - and my wife ER +.  Thanks for all the information. 

Boo307

The BC.org profile format doesn't allow complete details of my breast cancer.  I had cancer bilaterally at the time of diagnosis, happens in about 1% of the women diagnosed.  On the left side I had IDC 1.8 cm, ER-, PR-, HER2+, node negative.  On the right I had DCIS, ER+, PR- .  My oncologist told me the only positive element was that I was node negative.  It seems to me that I had high risk node negative cancer.  That is very unlike most of the participants in the Phase II trial.  Most had smaller tumors and most were ER+. 

I am in the Neratinib adjuvant clinical trial at Dana Farber.  Knowing what I know now, if I had it to do again I would have gone to Dana Farber in the beginning.  My local oncologist is the designated one to attend the national breast cancer conferences.  My Dana Farber oncologist presents his research at the conferences. 

Boo

BlairK

Dear Boo307 - I can reciprocate.  My wife had calcifications in the right breast on the mammogram and the left appeared normal.  Biopsy was DCIS with suspected microinvasion. MRI on the left showed possible cancer and a biopsy confirmed DCIS.  This made BMX an easy decision.  Final pathology report blindsided us.  Left was all DCIS.  Right was IDC with 3 foci of invasion - 1 mm, 1 mm and 3.5 mm - HER2+, ER+ and PR-.  Your IDC at 1.8 cm is larger than my wife.  My wife was also node negative.  By the way and at Dana Farber, a Dr. Judy Garber grew up in my hometown and was one class ahead of me in high school and grade school.  I just wrote to her about my wife.  Have you heard of her?  I hope she answers me.  I am in China and I believe she is also in China attending a conference in Shanghai.  I hope Dana Farber has done research on Taxotere Cytoxan and Herceptin but I am not sure.   Dr. Garber hopefully will let me know if she answers my e-mail.

bucky317

Boo and Blair  I am seeing my onc. on the 17th of this month. I am going to ask him why he chose the Cytoxan over the Carboplatin. I went to Sloan for a second opinion before I decided on treatment. In fact the MO whom I eventually decided on, told me what they (Sloan) were going to recommend before I even went. Sloan is a wonderful facility, but they do have their own "protocol" which they will not deviate from. They use their tried and true regime which they developed and have studied. My MO would of given me AC plus T and H, if I had wanted, but I felt "why risk any cardiac involvement" Herceptin has it's own cardiac risks as we know.   The Onc. I consulted with @ Sloan (after we went back and forth a few times about Adriamyocin and the heart etc...) finally admitted that with my being 100% er + and 97% pr + and Her2 + the most important detail to my chemo regime was 1)  Herceptin and 2).Arimidex for 5 years. The chemo cocktail with it was secondary. I believe my Onc. chose a regime that was well-tolerated with less of a chance of cardiac issues. and had......great results. I guess the jury is still out on that one....but I will ask him on the 17th.  My tumor was 8 mm, without vascular invasion and neg lymph nodes.

Will let you all know after the questions are answered.

Boo307

Blairk, Best wishes to your wife on her visit.  It must be extremely frustrating for you to be unable to attend the consults. 

Bucky317, I will be anxious to hear your MO's reasoning. Mine said Carboplatin and Cytoxan were equal.  If that is so, it makes no sense to use the drug without efficacy data.

Boo

BlairK

My wife just met with the second oncologist and I just spoke to her on my cellphone.  Phone calls from Hong Kong and China on my cellphone are expensive so we are going to talk via Skype in an hour in more detail.  The second oncologist thinks my wife should hold off on chemotherapy and just do hormone therapy.  Again, my wife had three foci of HER2 positive invasive ductal carcinoma - 3.5 mm, 1.0 mm and less than 1.0 mm.  The second oncologist says anything under 5 mm (0.5 cm) should be monitored and treated with Tamoxifen or Arimidex.  The second oncologist believes that my wife should be "monitored" - how I am not sure until we speak via Skype.  The second oncologist said it is the size of the biggest tumor that counts.  She would treat with Herceptin if over 0.5 cm (5 mm).  The first oncologist added up all three foci to make his recommendation.  The second oncologist was trained at Dana Farber Cancer Institute at Harvard.  The second oncologists thinking does not make me hundred percent comfortable.  HER2 positive and all the articles about how aggressive it is are scary.  However, this still is within NCCN guidelines if the key is to go by the biggest tumor 3.5 mm and not to add all three tumors together.  I would be interested in all of your opinions as quickly as possible.  I think everyone on my thread has a tumor at least 0.5 cm in size or more.

BlairK

The second oncologist said that many oncologists are substituting Cytoxan for Carboplatin because the believe that TCH with Cytoxan can be given in 4 rounds while TCH with Carboplatin is typically given in 6 rounds.  The feeling is also that Cytoxan has less severe side effects than Carboplatin.  I think you have identified the main research out there and you are right - there is not a whole lot.  I find the thing very confusing.

Boo307

Blairk



Tumors under .5cm have been studied Recently to see what the risk/benefit trade off is. Chemo does have its own risks. I have chemo brain, kind of excellerated some memory loss. Your wife is fortunate to have Tamoxifen as an option. A small tumor is in a vague area.



I wish I had some words of wisdom.



With Cytoxan vs Carboplatin, the side effects seem to be the focus. Without any efficacy data in HER2 positive BC, patients should be at least informed and given the pros and cons.



Boo

BlairK

Dear Boo307 - Do you have any research studies on HER2 positive IDC less than 0.5 cm and whether or not they should be treated with chemo plus herceptin?  I guess this is going to be a big defining moment.  I just wrote to the second oncologist as my wife had her e-mail.  I see what happens if she writes back.

BlairK

This article seems to address the situation that my wife finds herself in. 

Uncertainty Rules Adjuvant Chemo for Early HER2 Breast Cancer

---

Elsevier Global Medical News. 2011 Aug 15, D Mahoney

To treat or not to treat? When it comes to deciding whether adjuvant chemotherapy is the appropriate management choice for patients with HER2 positive, node-negative breast cancer less than 1 cm in size, the only sure thing is that there is no sure thing, and seemingly conflicting research data exacerbates the uncertainty.

A recent study demonstrated that patients who did not receive adjuvant chemotherapy or trastuzumab for node-negative, non-metastasized HER2 positive T1a (less than or equal to 0.1 cm to 0.5 cm) or T1b (greater than 0.5 cm to 1.0 cm) tumors were at greater risk for worse recurrence-free survival and worse distant recurrence-free survival than patients with hormone-receptor-positive disease.

This was especially true for those younger than age 35 years - and also was the case in similarly staged patients with triple-negative breast cancer, according to the report from the University of Texas M.D. Anderson Cancer Center in Houston.

The authors concluded that planning systemic treatment based on disease stage alone "appears to lead to worse outcomes," and that individualized treatment plans may be better informed by taking into account aggressive biological subtypes of small, node-negative breast cancers, as well as age at diagnosis (Clin. Breast Cancer. 2011 July 15 [doi: 10.1016/j.clbc.2011.05.002]).

While the findings of this retrospective, single-institution study validate the large body of evidence suggesting that younger patients with aggressive tumor subtypes have worse outcomes when not treated with adjuvant chemotherapy or trastuzumab (Herceptin), the authors do not recommend universal treatment of this patient population.

Rather, the results provide a strong argument for the inclusion of women with small tumors that have biologically aggressive traits in prospective clinical trials "to evaluate the extent of therapeutic benefits," they wrote. Further, patient age and disease subtype "should be considered when counseling patients about treatment interventions."

No Treatment Not Worse for Some

With the absolute benefits of treatment yet to be determined, investigators also are looking closely at the risks associated with skipping adjuvant treatment.

The findings of an observational cohort study presented at the annual meeting of the American Society of Clinical Oncology (ASCO) suggest that women with early HER2 positive T1aN0M0 breast cancers can safely do so because of the low distant recurrence rate observed in this patient subgroup. A higher rate was observed in those with T1bN0M0, indicating that adjuvant systemic therapy may be more relevant in this patient population.

The study assessed outcomes among 237 women with HER2-positive T1a (116 patients) or T1b (121 patients) tumors diagnosed between 2000 and 2006, all of whom had negative nodes and no metastases. Most did not receive adjuvant chemotherapy or trastuzumab.

With a median duration of follow-up of 5.8 years, the rate of distant recurrence was 0.9% among patients with T1a tumors versus 5.8% among those with T1b, lead investigator Dr. Louis Fehrenbacher, an oncologist with Kaiser Permanente in Vallejo, Calif., reported in a poster presentation, analyzing data from the tumor registry of the Kaiser Permanente Clinical Care Program of Northern California.

The investigators chose distant recurrence-free survival as the main outcome measure, rather than the more commonly used disease-free survival rate, because they "did not want to include non-breast malignancies, contralateral malignancies, or deaths from any other cause," Dr. Fehrenbacher said. "That isn't the real important factor in deciding to give intensive chemotherapy to these patients," he explained.

By tumor size, the rate of distant recurrence ranged from 0% to 5.8% for tumors measuring 0.1 cm to 0.9 cm, but it was 10.7% for the tumors measuring 1.0 cm. In other words, Dr. Fehrenbacher said, "the 1.0-cm tumors carried the burden of the distant recurrence risk."

Results for the actuarial distant recurrence-free interval showed a 5-year rate of 96.5% for the patients as a whole, with 99.1% and 94.0% in the T1a and T1b groups, respectively.

Overall, 25% of the study patients received chemotherapy and 8% received trastuzumab. "Most of these patients had only a smattering of chemotherapy or trastuzumab, and it didn't seem to affect outcome," Dr. Fehrenbacher commented, but he acknowledged that there may have been bias influencing who received chemotherapy. While 59% of the patients had tumors that were positive for estrogen receptors, there was little difference in recurrence rate according to estrogen receptor status, he said.

"The take-home message is, I think, the T1a's have too low of a risk of distant invasive recurrence to justify chemotherapy or trastuzumab," Dr. Fehrenbacher said in an interview. "We need to specifically individualize the risk of the patient based on the size of their primary [tumor], because the T1a's and T1b's are quite different in our findings."

Dr. Lajos Pusztai, a professor in the department of breast medical oncology at M.D. Anderson agrees with Dr. Fehrenbacher's conclusion. "I think the findings are correct, as several other studies have also indicated a very low risk of recurrence for very small HER2-positive cancers," he said in an interview.

"It may also be important to remember that HER2 has not been considered by the ASCO biomarker review panels [to be] an important prognostic marker, but rather a predictive marker for trastuzumab therapy."

Review Warns of Cardiotoxicity

In a recent review article looking into whether the existing data supports a definitive treatment threshold for patients with T1aN0M0 or T1bN0M0 HER2-positive breast cancer, Dr. Pusztai, along with lead author Dr. Catherine M. Kelly of Waterford Regional Hospital in Waterford, Ireland and colleagues, wrote that "a blanket recommendation to treat all small HER2 positive breast cancer with trastuzumab-based therapy will almost certainly lead to clinically significant cardiotoxicity in some without any benefit in breast cancer recurrence."

Similarly, they noted, "withholding this form of adjuvant therapy from all small HER2 positive cancers will result in some otherwise avoidable breast cancer recurrence. Unfortunately, today we do not have accurate tools to identify precisely the subset of patients for whom the risks of trastuzumab outweigh the benefits."

Lacking such tools, shared medical decision making based on estimates achieved using established risk calculators and discussion of the risks with patients should be the order of the day, they said, with the decision depending upon the patients' perspective and risk tolerance level. If trastuzumab-based treatment is an option, the authors stressed that regimens with the lowest risk of cardiotoxicity should be pursued (Ann. Oncol. 2011 Mar. 15 [doi:10.1093/annonc/mdq786]).

In the absence of randomized controlled trials to establish or refute the benefit from adjuvant trastuzumab in this patient subset, the authors called for the development of molecular predictors of prognosis within HER2 positive disease to further optimize risk/benefit estimates. The development of better prediction tools for more precise estimations of the risk of death from comorbid illnesses and the risk of cardiac death, in particular, are important, they said.

Level 1 Evidence Lacking

The lack of level 1 evidence from large, prospective trials contributes to the overall uncertainty surrounding the role of adjuvant chemotherapy in early HER2 breast cancer, according to Dr. Gabriel Hortobágyi, professor and chair of the department of Breast Medical Oncology at M.D. Anderson.

Studies examining the prognostic value of HER2 are limited by their reliance on retrospective database analyses and small cohort sized, Dr. Hortobágyi said in an interview. "I think it is critically important to perform a couple of larger trials with prospective collection of patients, HER2 checked centrally in a high-volume lab, and long enough follow-up to determine the real outcomes of these patients."

In this regard, the Southwest Oncology Group's breast committee, chaired by Dr. Hortobágyi, is trying to activate a clinical trial for HER2 positive T1a and T1b patients comparing trastuzumab alone and in combination with lapatinib "to determine whether treatment with targeted chemotherapy would be effective enough for these patients." Additionally, he said investigators at Dana Farber Cancer Institute are completing recruitment to a single-arm trial for patients with small, HER2 positive breast cancer treated uniformly with paclitaxel and trastuzumab.

"Both trials will give us prospective data and should contribute significantly to our assessment of the real prognosis of this group of patients," he said.

In the meantime, Dr. Hortobágyi said that his group, and many others, "considers that risk of recurrence exceeding about 10% deserves adjuvant chemotherapy, and in the HER2 positive group we believe the risk exceeds, by far, that level. Therefore, we discuss trastuzumab and chemotherapy with all patients without significant comorbid conditions if they have any size-invasive, HER2 positive breast cancer."

The uncertainty regarding the role of adjuvant chemotherapy in early HER2 breast cancer touches on a "fascinating aspect of medicine: how to deal with and communicate uncertainty in diagnosis and treatment benefit," observed Dr. Pusztai.

"Medicine is a very imprecise science and the handling of imprecision is what makes it, as some would call it, an art," he said. "I suspect that what patients perceive as a 'good' vs. 'not so good' doctor often comes down to how efficiently one can make decisions under uncertainty of information and how effectively one communicates this uncertainty and the decision that is based on it."

Dr. Fehrenbacher, Dr. Pusztai, and Dr. Hortobágyi reported no relevant conflicts of interest with respect to the information presented.

Susan London contributed to this report.

Hopeful

TheLadyGrey

Blair, thank you for locating that article which accurately summarizes my understanding of the issues.  I've printed out probably 20 articles that I'm trying to study and organize prepatory to my meeting with my first oncologist tomorrow.  This summary of the issues will be invaluable to me in discussing my decision, whatever that might be, with family members.

I obviously have no words of wisdom for you seeing as how I am in a virtually identical boat as your wife.  

I am going to be VERY interested to see what MD Anderson advises.  I somehow missed MD Anderson's role in this research until now.

I will report back immediately after my meeting with the oncologist tomorrow.  Her name is Joyce O'Shaughnessy I just saw that she is on this website's advisory board, http://www.breastcancer.org/about_us/pab/joyce_ann_oshaughnessy.jsp.  I was halfway bummed when I googled her just now-- kind of hoping to find someone dismissable.  

One thing I am not following is the recurrence rate statistics.  I've seen 23-30% at five years but this article seems to suggest a much lower number.  If it makes sense to you, can you explain it to me?  Does the 25-30% relate only to tumors greater than 1 cm?  

I did get a PM from a member who did a Taxotere/Herceptin regimen with very few side effects -- I'm guessing that is the paclitaxel and traxtuzumab regimen described in the article (???)

One of the things that is giving me pause is that there are no studies on the long term (ten year plus) cardiac impact of Herceptin -- obviously can't be any since it hasn't been around long.  Since I have medication controlled hypertension and a family history of heart disease, I'm very concerned about this.  Have you read anything on this issue? 

BLECH.  This is just an AWFUL process.  

I'm happy to give you my email and phone number if your wife would like to talk to someone similarly situated.   

SpecialK

TLG - not that I am wishing another doc appt. on you but I am wondering if you might be able to arrange an appt. with a cardiologist connected to MD Anderson (someone with an oncological sensitivity) who could specifically assess your cardiac risk associated with Herceptin.  I also interpreted that the difference in recurrence in the above mentioned study had to do with tumor size.  There are many of us on the TCH thread who weathered our few months of chemo without major problems, the majority of us were Taxotere/Carboplatin/Herceptin.

dragonfly1

BlairK and TheLadyGrey You are certainly in a very difficult position with a very small Her2+ tumor, but Her2+ nonetheless. The recurrence rates are virtually impossible to calculate-my MO refused to even discuss such numbers because the existing statistical models do not account well for the advent of Herceptin. I have a feeling that you are both in a very "grey" area at this point and the decision will fall squarely on you which is never easy. It's always a risk/benefit decision I suppose. I personally felt very strongly that for me it was worth the risk to have chemo/herceptin so that I would never have to wonder if I had done everything possible in the awful event that I recur (no matter what the statistics say-any chance of recurrance is too much for me so I could care less about predictions). I only have one life and I'm fairly conservative with my health. Having finished chemo and almost being finished with Herceptin, the honest truth is that the short-term SEs are not even worth discussing-you deal with them during chemo and then it's over. It's the long term SEs that most of us fear. I developed neuropathy in my hands but it has never been painful and is gradually improving. Other than that, I'm coping with the rapid onset of menopause brought on by chemo. My MUGA heart scans have not changed at all on Herceptin and they are checked every 3 months. 

I think what is really tough for both of you is that you fall into a category where this treatment may be more recommended than a standard protocol. You are in an ever-growing group who have very small Her2+ tumors. You have to make a choice in the context of all this rapid change in definitions and treatment recommendations. Who knows what tomorrow will bring? Research may support that your group signficantly benefits from chemo/Herceptin or it may not. You are both doing the right thing to fully educate yourself, seek many opinions and then make the best possible decision. It's all any of us can do.

Boo307

Blairk,

You seemed to have nailed the state of knowledge about HER2 tumors of less than .5cm.  Now it seems to come down to what you and your wife feel is best for her. 

The risk may be less than 10% with a tumor smaller than .5cm, but that is over a large number of women.  For any particular woman, either she will have a recurrence or she won't.  A distant recurrence is an incurable disease.

It may come down to what you feel is best for you. Some people are action oriented and others are not.  This recent article may be of help.  Here is an excerpt.

An Epidemic of Information

Patients feel daunted by the choices they face-this drug or that one, these potential side effects or those?

By LAURA LANDRO

With more medical information than ever before at their fingertips, patients increasingly feel empowered to make their own decisions about care-or overpowered by all that data.

In "Your Medical Mind," oncologist Jerome Groopman, and his wife, endocrinologist Pamela Hartzband, offer a road map for navigating the medical maze and the mountains of information that Google searches produce. In an era when the magisterial physician who dictates care is obsolete, the book may be a welcome guide for those who are daunted by the choices they face, ranging from taking a cholesterol-lowering drug to making end-of-life decisions for a loved one.

Dr. Groopman is the author of four other books that have helped demystify medicine for a lay audience, including "How Doctors Think." "Your Medical Mind" analyzes how patients think as they weigh the pros and cons of different options, especially when they are presented with conflicting evidence and advice. "The unsettling reality," the authors note, "is that much of medicine still exists in a gray zone, where there is no black or white answer about when to treat or how to treat."

The books draws heavily on the approach known as shared medical decision-making, which has been promoted by researchers at Dartmouth College and others. This approach holds that doctor and patient together should review information about the risks and benefits of any given treatment and then customize care according to the patient's values and preferences.

http://online.wsj.com/article/SB10001424053111904265504576566941507724896.html#printMode

Boo307

Blairk, I hope all went well with your wife's consult.  Something that may be helpful is to request a copy of the physicians notes of the visit with your wife.  I have found information and comments that the doctor made in the notes but didn't tell me. 

You may benefit from keeping in your personal medical records copies of all notes, diagnostic reports, and surgereons port surgery report. 

Boo

SpecialK

Boo307 - I made a binder that also included all insurance documents relating to procedures, all billing from providers, insurance referrals, pharmacy receipts and printouts, copies of all written prescriptions for both meds and services like imaging or physical therapy, along with pathology reports, imaging reports, and any other testing reports.  Can you tell I am a little OCD about it?  Ha!  It has come in handy when I have needed to refer to something.  I bought those little stick on tabs and labeled them so I can find what I need easily.  My MO also participates in "SeeMyChart" and gives his patients access online (with an individualized password) to their medical chart.

Boo307

SpeicalK,

Great job!  That website looks fabulous.  I can't tell you the number of times I have referred back to diagnostic reports or physicians notes as I learn new information.  I more and more feel I have a handle on my diagnosis and prognosis. 

I also keep close tabs on billing and insurance reports.  Just today I found that my insurer should have covered at 100% services I paid 20% for in April.  I have a $370 refund coming back to me!

My motto is "No one cares as much about my body (or money) as I do".

Boo

SpecialK

Boo - I also feel that taking care of all these details is my responsibility - my docs have lots of patients but I only have one of me!  I too go back all the time and re-read stuff - amazing what I missed in those early stages of being shell shocked!  Yay for the cash coming back to you - just in time for the holidays!

bucky317

Boo and Blair K-- I had my visit with my onc. today and asked him why I had the cytoxan rather than the carbo. with taxotere and herceptin. and this is what he said..... because of my her2 being neg on fish (suppose to be the cadillac of testing for her2) and equivocable on oncotype dx test and the positive on IHC. He felt that the cytoxan was an all around better "coverage" for me, because of  er and pr being so highly positive. This regime (taxotere,cytoxan) is often recommended for the er+pr+ patients because of its efficacy and I believe (but I have to look at my notes, and they are downstairs and I am to lazy tonight to get them) that it was 20% more effective than the AC. I will get back to you on that though. I have also seen some reports of false positives (esp.on IHC) testing for Her2. I asked him about that and he told me that yes that there was a chance that I could be neg instead of positive, but when they discussed my case at their tumor board meeting the consensus was that Herceptin must be given to me because of the IHC HEr2 + result. It wouldn't hurt me if I wasn't Her2 + and would definitely help me if I was.  Although we all know that Herceptin doesn't work for everyone. The four txs instead of 6 were done because my oncodx test came back under 40. If it had been over 40 I would of received 6 txs.  Blair K--my onc. graduated from Univ. Of Penn!!! Great school!!! and Great team of Oncologists!!! Hoping your wife has all her questions answered there and can come to a decision. It must be so difficult for her to decide chemo/vs no chemo, but I must say if mine was only 3mm (mines 8mm) and Her2 +  I would of still had the chemo and herceptin. I am only 48 and have 2 boys age 8 and 10. and I know that I would of wanted to do everything I can to try to prevent a reoccurance. but...... that is just me,  there are alot of women whom decide not to do chemo for their small tumors and are doing fine.  I must say that the chemo wasn't too bad @ all. In fact, I have forgotten "almost" all about it! It really is very doable. Wishing you the best in whatever route your wife decides.

AlaskaAngel

This gray area is where science fails us so miserably, by NOT yet doing any comparison of trastuzumab alone, or trastuzumab in combination with lapatinib, vs trastuzumab plus chemotherapy, whatever we may learn from it.

"In this regard, the Southwest Oncology Group's breast committee, chaired by Dr. Hortobágyi, is trying to activate a clinical trial for HER2 positive T1a and T1b patients comparing trastuzumab alone and in combination with lapatinib "to determine whether treatment with targeted chemotherapy would be effective enough for these patients." Additionally, he said investigators at Dana Farber Cancer Institute are completing recruitment to a single-arm trial for patients with small, HER2 positive breast cancer treated uniformly with paclitaxel and trastuzumab.

"Both trials will give us prospective data and should contribute significantly to our assessment of the real prognosis of this group of patients," he said."

LuvLulu07

Thanks all for so much good info.  I was broadsided with a Her-2+ path report, after being told that chemo and rads would probably not be necessary, post BMX surgery.  My two tumors were 1.8cm and 1.6cm (same breast), larger than expected.  The larger tumor was Her-2+, FISH results pending on the smaller.

Coming to terms with Herceptin and chemo treatment - so much to take in.  Oncologist appointment is next week.  I'm hoping to find studies on T1c treatment before then.  

Boo307

joyh1109,

For the current recommendations for your pathology check the NCCN practice guidelines for breatst cancer if you haven't already. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Good luck and let us know how your appointment goes.

Boo 

LuvLulu07

Boo 

Thanks for the website info - wonderful source and exactly what I need.

Joy 

BlairK

For those who have not been on my thread, my wife will visit Penn on December 12th next Monday.  She has already discussed with me that she is leaning toward chemo and herceptin and that is my view.  The second oncologist opinion of "chemo and herceptin" not being necessary for a 3 mm HER2 plus node negative tumor delayed things a little bit.  Penn will be the third opinion.  My wife had her MUGA heart scan last week, today she will have full body scans and on December 13th will have the pre-chemo pre-med consultation with the first oncologist.  Chemo and herceptin will start on December 20th unless my wife would change her mind again.  Almost everybody on both sides of our family thinks reducing the risk of recurrence to as low as possible is much more important than the possible side effects which can be managed with pre-meds and monitoring tests.  I am reading "Promise Me' by Nancy Brinker - Susan Komen's sister.  Nancy Brinker's description of her sister's dying and death really had an impact on me.  It sounds horrible and sad.  She also described how Susan Komen resisted her sister's pleas to go get a second opinion of MD Andersen and when she finally did go there it was too late.  Not doing the chemo and herceptin and risking recurrence scares me greatly. The current treatment plan for my wife is still Taxotere and Cytoxan and Herceptin x 4 every three weeks and then herceptin every three weeks for a year and arimidex every day for 5 years.  I learned from "Promise Me" that Cytoxan is derived from chemical relatives of mustard gas.  Anyway, please read my thread and will also update here.