Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
Comments
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I agree totally with Scrabblelady's post. My wife will have TCH (with Cytoxan) and not AC - TH. Herceptin is a targeted therapy against HER2 and tamoxifen and ariimidex are hormone therapies. However I am curious that Scrabblelady had Adriamycin with a small tumor of less than 1 cm. Scrabblelady is ER negative and my wife is ER positive. Scrabblelady - would you be kind enough to share your medical oncologist's thinking with us. I am very glad that you are almost finished and sounds like you are doing well. However, the adriamycin treatment sounds like a more aggressive treatment for Stage 1a.
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Blair - some oncologists do give AC-TH - it may depend on age as well as nodes. I know my onc really well as he is also my husbands onc. When I told him I was having TCH he smiled - wrote it down and ticked it and then asked me the side effects. He is very used to us going in armed with research and doesn't mind a bit. I am also on Arimidex - he was very worried how I would do on it as I have arthritis, but so far it's OK (17 months). How old is your wife? I was 57 at diagnosis.
Herceptin costs our government $75,000 - we don't pay for it ourselves and I am so grateful I was able to have it.
I remember the worst treatment was the first, I think I lay in bed and cried for days. BUT once we could see what side effects I had, I was given the appropriate drugs to stop them and managed very well for the rest of the time. The worse one was leg pain - a few days after each treatment. My onc prescribed a pain killer (Digesic) and Claratin (24hr tablet) and it worked, so I would start taking them on day 3 after chemo and didn't suffer at all. As I said in response to one of your other posts, avoiding constipation is the most important thing. I only made that mistake once. As with the other SE, I would start taking Sennacot a day or so after and had no problems. My onc prescribed Emend - given on the day of tx and 2 tablets to take each day after and I never once felt like being sick.
I hope your wife decides to go ahead - I got really upset when I read that lady's story today on the Stage IV thread. I really cannot understand anyone refusing treatment where HER2 is concerned - it didn't take much research to see it's essential.
Please let us know how her onc visit goes.
Sue
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Blair - I forgot to tell you. My onc said I had a 23% chance of recurrence and that having chemo/herceptin would halve that. That was enough for me - no brainer.
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Dear susieq58 - "G'day". My wife is 52 years old and she will be 53 in January. My wife's BMX was SNB node negative on both sides. As I articulated my views, I think it is all a benefit versus risk analysis. I think my wife agrees with my view and she will have the treatments. I think cancer that has metastisized is horrible and I think dealing with the risks and side effects of chemotherapy, herceptin and hormone therapy is much better than taking the risk of the cancer spreading and going to a more advanced stage. Thank you for all your information sharing. She will definitely go ahead. Her main thoughts right now are on the need for a second opinion and in her own way trying to understand as much as possible about the treatment since I am far out ahead on the learning curve with my intense research. The final thing is we both like the medical oncologist and have trust in him so far.
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Blair - did you look at the link I posted above - nice flat line for recurrence when given herceptin. I look on it as it wasn't nice being diagnosed but it's great it was found early and there is something we can do to try and prevent it coming back. I only say try, I am not under any illusion that being node negative means I'm safe.
I got upset about that lady on the Stage IV thread because she was denied treatment and look what happended. So, it just shows you only 2mm of cancer is enough. Surgery doesn't always provide a cure. Early stage women in New Zealand had to fight to get herceptin - they finally won but it was a long battle. I am glad I wasn't living there then - I am a Kiwi by birth but have lived in Oz most of my life.
Hugs to you both - with you by her side she will be just fine.
Sue
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Dear susieq58 - I read the link that you posted and cut and paste the summary of the research study below. The article describes patients with the same profile as my wife - HER2 positive and small tumor size. There is no doubt now that my wife will accept and begin the treatment on 11/29. You and dragonfly have been especially helpful but I appreciate all the posts and help and support from everybody. I am feeling overwhelmed by the enormity of all this but I must keep a positive outlook and optimism that my wife will come through this OK and live a long happy life. I am still very interested in finding out as much as possible about the Taxotere - Cytoxan - Herceptin combination or even finding research papers and studies on it. Again I am very interested in Cytoxan versus Carboplatin in the TCH regimen. Thanks again. BlairK
Adjuvant trastuzumab combined with chemotherapy is now a standard of care for HER2-positive breast tumors that exceed 1 cm and/or pN+. We believe it should also be considered for T1ab, pN0, HER2-positive tumors, especially in the presence of other poor prognosis factors (ie, high grade, high MI or HR negative). Of course, the incremental gain in absolute benefit observed by adding trastuzumab-based therapy in this series cannot be predicted, and long-term toxicities should be carefully considered on an individual basis during the decision-making process. As trastuzumab has proven its efficacy in the adjuvant setting exclusively when combined with chemotherapy,5-10 we would recommend the administration of adjuvant trastuzumab along with chemotherapy when considered. We also propose that patients with T1ab, pN0, HER2-positive breast tumors have access to current adjuvant trials of HER2-targeted agents.
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I found a research study on Taxotere + Cytoxan + Herceptin. Overall encouraging results.
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http://www.penncancer.com/pdf/TWEED.pdf
Here is a link to a tremendous power point by the University of Pennsylvania on chemotherapy treatment options including herceptin. By the way, I went to the University of Pennsylvania.
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Blair - I had carboplatin - the taxotere probably had the worst side effects - not really sure. Any platinum drug is nasty - my DH had oxalyplatin and reacted rather badly to it but still made it through all but one of the treatments. He had a bowel cancer met in the lung and is alive and well nearly 5 years later - mainly due to successful surgery.
I don't know about the difference between carboplatin and cytoxan, but I do know there is only about 1% difference in outcome between AC-TH and TCH so I was happy with TCH. I just did a bit of a search and it seems cytoxan is usually given as part of the AC-TH regimen and carboplatin as part of TCH - then again things change all the time and your onc would be up to date on the latest protocols.
Sue
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My wife decided (on her own since I am in China) to get a second opinion on Monday and then meet again with the first oncologist next Tuesday. The second oncologist requested my wife to bring the pathology slides with her. The second oncologist is also a medical school professor. My wife plans to bring the second opinion back to the first oncologist who she will meet again next Tuesday. We plan to stay with the first oncologist since he is only 15 minutes from our home and also very highly regarded as is the second oncologist. My wife will also have a bone density test, MUGA heart scan and full body scan. Please keep the posts coming. I will keep updating.
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Keep updating us Blair - it will be interesting to see what the 2nd onc says.
BTW - to me a BMX is much worse than chemo - I had lumpectomies because I'm a big chicken, yet had no trouble agreeing to the chemo.
Sue
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TheLadyGray -
In the large BCIRG006 trial, not one person died of herceptin induced heart failure - but many (literally hundreds) died of Her2+ cancer. Have, or don't have whatever treatment you want. But you may want to learn about the actual benefits and risks of chemo and herceptin before making decisions or offering opinions.
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My wife had no trouble with the mastectomy because she thought everything would be over at once. It has not turned out that way. My wife is open to chemo. The one area she would be very resistant to would be radiation and so far radiation has been deemed to not be necessary. I have not even looked at my wife's chest because she does not want me to yet. I am grateful for susieq58. Can we get more posts - especially before next week with my wife's second opinion, tests, and visit with the first oncologist.
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Dear orange1 - Where can I find this study. Can you share the details of your situation and treatment with chemo and herceptin.
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Orange - I agree - it is very frustrating sometimes
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BlairK: I'm not sure why my onc decided on Adriamycin. Looking back, I can't believe I didnot question him on it. I discussed everything else with him. I was truly worried about the cardiotoxicity, but he assured me that only something like 4% have any problems. I got my treatment at MD Anderson in Houston, which is one of the top cancer hspitals. My onc believes that AC folowed by TH was the best choice.
If I can find the links to the research articles I read before starting chemo I will send them to you in a pivate message.
There is a new, but expensive, anti-nausea med called Emend. See if your insurance will pay for it. I took those pills for the 3 days and never got sick. I did find that it slowed the bowels, but I ate my fruit and prunes. Whether it was the Adriamycin or the cytoxan, I did have to force myself to eat in small amounts, but mostly because nothing tasted good. Finally, before she starts chemo check out the discussion for tips for getting through chemo on the Chemotherapy Board. Lots of good advice there.
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Ms. Orange, I stand by my advice that Mrs. Blair should get a second opinion prior to beginning treatment, which, I note, she is in fact doing.
As for fatalities associated with Herceptin, their very own website recites as the first point under "Side Effects" that a patient died from cardiomyopathy, and that Herceptin administration may result in fatal infusion reactions.
I hardly think the drug manufacturer is going to overstate the risks on its own website.
It seems sensible to me to have a thorough understanding of the risk/benefit analysis prior to taking a drug with potentially permanent/lethal side effects.
Your mileage may vary.
I will likely end up taking Herceptin after meeting with three oncologists and a cardiologist if I am persuaded that the risk/benefit analysis considers both quality and quantity of life, and weighs in favor.
Other people may have different criteria for agreeing to medical treatment. Doubtless, it is sufficient for some that a trusted doctor recommends it. I'm short on trusted doctors and that is simply not my personality profile. Blair is free to consider my skeptical approach or not. -
TheLadyGrey I understand your concerns and appreciate your healthy skepticism. In fact, I work in healthcare with physicians every day and certainly know the importance of questioning their opinions! However, the fact remains that Her2+ tumors no matter how small even in node negative women can in some cases metastasize over time (there are enough women on the Stage IV forum to demonstrate this sad reality). I am so glad that you are seeking multiple opinions, researching at great length and at least considering Herceptin. I can only speak for myself but after doing many of the same things I decided that I needed to follow the standard protocol, take every measure to manage the side effects and know that if this horrible Her2+ BC in fact recurs (especially distant recurrance), that I've done all I can do. I didn't want to ever look back and wonder, what if? I'm approaching the end of a very long year of surgery, chemo, Rads, Herceptin and feel like I'm finally beginning to get my life back from the incessant medical appointments and procedures. Hopefully I'll never have to do this again but the risk remains...Wishing you all the best!
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Dear TheLadyGrey - Everyone must do a benefit versus risk analysis. I am hoping that somebody will post the statistics on heart problems from Herceptin. What percent of patients has this happened with? Was taking Adriamycin first which can also cause heart problems a factor. That is a major risk. On the other side, HER2 positive cancer that is not treated with Herceptin has a 25 to 30 percent chance of reoccuring and with Herceptin only a 2 to 3 percent chance of reoccuring. The first medical oncologist spoke in terms of side effect management. Things like the use of demexthasone - a strong steroid - before the first treatment to reduce the possibility of an infusion reaction and anti-nausea medicine. And I am reading many posts with advice on how to reduce side effects. And it is important to realize that it is my wife who has breast cancer and is a woman, not me. My wife starts slow but then she takes charge. With DCIS diagnosis, she took charge and visited the second reconstruction surgeon on her own and made the decision for a double mastectomy and immediate reconstruction with gummy implants. And she now has made the decision to get a second opinion on the treatment recommendations. She is talking to her friends, her support group, our neighbors who are doctors, etc. I am greatly encouraged by the second oncologist. She was trained at the Dana Farber Cancer Institute at Harvard and asked my wife to bring all the pathology slides. She probably will spend 1-2 hours with my wife reviewing and explaining everything Monday. So it will be interesting if the two opinions concur or disagree and in what sense. We like the first oncologist and we like the proximity to our home and again the first oncologist won a Best Doctor Award in our state. And my wife next week will get additional tests, MUGA scan of the heart, full body scan, blood tests including I hope the blood cancer marker test (A27/29 or something like that) and bone density test. All my research and bulletin board posting of course is to help my wife but also to be well prepared during the doctor visits. It helped me a lot with the Breast Surgeon and Reconstruction Surgeon and it helped me a lot (to be well prepared in both cases) with the medical oncologist. These decisions put women between "the devil and the deep blue sea" and are very difficult. But I believe at least as of today my wife has made the decision to do the recommended treatments adjusting them for the second opinion which she plans to take back to the first oncologist. I just hope I can find some statistics on Herceptin heart problems and if I do I will share them here. In the meantime, every person and should I say every woman with breast cancer has to go through the risk benefit analysis and make tough decisions.
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The breastcancer.org has a good write-up on herceptin side effects.
Herceptin Side Effects
Page last modified on: December 22, 2010
Herceptin causes flu-like symptoms in about 40% of the people who take it. These symptoms may include:
- fever
- chills
- muscle aches
- nausea
Side effects generally become less severe after the first treatment. Your treatment team will monitor you during your infusions, especially your first dose, and can adjust the infusion if you are very uncomfortable. If you are receiving Herceptin every 3 weeks, you may have stronger side effects.
If you are receiving Herceptin with chemotherapy, you may also experience chemotherapy side effects.
Serious heart side effects
Less commonly, Herceptin can damage the heart and its ability to pump blood effectively. This risk has ranged between 5% to 30%. The damage can be mild and result in either no symptoms or signs of mild heart failure, like shortness of breath. Less commonly, the heart damage is bad enough that people experience life-threatening congestive heart failure or a stroke. The risk of heart damage, especially severe damage, is greater when Herceptin is given along with other chemotherapy medicines known to cause heart damage. Adriamycin is an example of a chemotherapy that can cause heart damage.
Women who experience mild or more serious heart damage can stop taking Herceptin and start taking heart-strengthening medications. This often brings heart function back to normal.
Testing your heart before and during Herceptin treatment
Before starting Herceptin therapy, you should have an echocardiogram or a MUGA (multigated blood-pool imaging) scan to check how well your heart is functioning.
- An echocardiogram uses sound waves to take detailed pictures of the heart as it pumps blood. For this quick test, you lie still for a few minutes while a device that gives off sound waves is briefly placed on your ribs, over your heart. There is no radiation exposure with this test.
- A MUGA scan takes about an hour. In this test, a tiny amount of radioactive material is injected into a vein in your arm. This material temporarily hooks onto your red blood cells. You lie still while a special camera that can detect the radioactive material takes pictures of the blood flow through your heart as it beats.
When you first start taking Herceptin, your doctor might want you to have MUGA scans or echocardiograms every few months to detect any sign of heart failure. But after you've been on Herceptin for a while, you may need a heart-monitoring test only every 6 months or so. This is because heart failure is less likely to occur the longer you take Herceptin.
Notify your doctor immediately or go to the nearest emergency room if you're taking Herceptin and you develop any symptoms of heart failure, such as shortness of breath, difficulty breathing, a fast or irregular heartbeat, increased cough, and swelling of the feet or lower legs.
Serious lung side effects
Herceptin can rarely cause two possibly related serious reactions that interfere with breathing. One of these is a reaction during or shortly after Herceptin is being administered. This is like a bad allergic reaction, with symptoms that include hives, as well as wheezing and trouble breathing due to sudden swelling and narrowing of the airways. The other reaction, called pulmonary toxicity, results in swelling of the lung tissue, low blood pressure, and possibly fluid buildup around the lungs (called pleural effusions).
The risk of these life-threatening reactions is rare -- much less than 1%. In most cases, these reactions happen during infusion or within the first 24 hours of the first dose of Herceptin. Less commonly they can happen within a week of the first dose. Only occasionally do these reactions occur with the second or later doses. The lung reaction can be more severe when lung disease, such as asthma or emphysema, already exists, or if the breast cancer has spread significantly into your lungs. If you are currently undergoing treatment with Herceptin and have been tolerating it well, you're unlikely to develop these serious reactions.
Even though the severe side effects are relatively rare, your doctor should check you carefully for any heart or lung problems before starting to treat you with Herceptin. You should also be monitored closely for these serious side effects during treatment.
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Here is a study stating that only 3.8 percent of patients on Herceptin had heart problems.
Heart Problems From Trastuzumab (Herceptin®) Do Not Increase in the Short Term
Key Words
Breast cancer; HER2; trastuzumab (Herceptin®); congestive heart failure. (Definitions of many terms related to cancer can be found in the Cancer.gov Dictionary.)
Summary
It's known that women with HER2-positive breast cancer who take the drug trastuzumab (Herceptin®) in addition to chemotherapy are at greater risk of heart problems during treatment. Now a study has shown that the incidence of such problems does not increase in the short term and that many women regain heart health after an initial decline. However, the long-term effects of trastuzumab on the heart remain to be determined.
Source
American Society of Clinical Oncology (ASCO) annual meeting, Chicago, June 4, 2007 (see the meeting abstract). See also results published online June 7, 2010, in the Journal of Clinical Oncology (see the journal abstract).
Background
About 20 percent of breast cancers make too much of (overexpress) a protein called HER2. Such tumors tend to grow faster and are more likely to come back (recur) than tumors that don't overproduce the protein.
The targeted drug trastuzumab kills cells that overexpress HER2. In 2005, results from several randomized clinical trials showed that taking trastuzumab in addition to chemotherapy reduces the risk of breast cancer recurrence by about half for women whose tumors overexpress HER2 (called HER2-positive breast cancer).
However, these trials also found that women who took trastuzumab had an increase in congestive heart failure (where the heart has trouble beating normally because of damage to the heart muscle) or other heart problems. In the study described below, investigators examined the data from five years of follow up from a randomized clinical trial of trastuzumab to see if this risk of heart damage changes over time.
The Study
The investigators looked at data from five years of follow up from the National Surgical Adjuvant Breast and Bowel Project trial NSABP-31. This trial randomly assigned women with HER2-positive breast cancer that had spread to nearby lymph nodes to receive chemotherapy with the drugs doxorubicin (Doxil®) and cyclophosphamide, followed either by the drug paclitaxel (Taxol®) and 52 weeks of trastuzumab (experimental group) or paclitaxel alone (control group).
In order to be eligible to take trastuzumab, participating women had to have normal heart function and no past or current heart disease. All women had scans of the heart before the start of treatment, and at 3, 6, 9, and 18 months after the start of treatment. The investigators compared the difference in number of cardiac events-defined as either congestive heart failure or death due to heart problems-between women taking trastuzumab and women in the control group for up to five years after the start of treatment.
The trial was organized by the National Surgical Adjuvant Breast and Bowel Project (NSABP). The author of the five-year follow-up study is Priya Rastogi, M.D., from the NSABP.
Results
At five years after the start of treatment, 3.8 percent of women in the trastuzumab group had experienced a cardiac event, compared to 0.9 percent of women in the control group. These numbers remained essentially unchanged from those seen at three years of follow up (4.1 percent in the trastuzumab group and 0.8 percent in the control group), showing that the cumulative incidence of cardiac events did not increase.
In addition, substantial recovery in heart function was seen in approximately two-thirds of women who experienced an initial decline in function.
The investigators identified three risk factors for congestive heart failure in women taking trastuzumab: age (women over the age of 50 have higher risk), the use of hypertensive medications (medications taken to lower high blood pressure), and low normal heart function.
Limitations
Importantly, explained Sharon Hunt, M.D., professor of cardiovascular medicine at Stanford University, who presented a discussion of these results at the ASCO meeting, doctors still do not know what the long-term effects of trastuzumab on the heart will be.
"I don't think that a three-year follow up or a five-year follow up are adequate to tell us the real natural history of any chemotherapy-related cardiotoxicity," she stated. "We don't know...the predicted 10-year cumulative toxicity of the chemotherapy. I think this is incredibly important data to obtain...so that when we face a patient with the option of having trastuzumab...we can be able to share with them the absolute risk/benefit ratios."
The long-term risk data will be particularly important, she explained, because even the women who recovered heart function did not recover to the levels they had before treatment. These patients may be especially vulnerable to additional damage to the heart, from conditions such as high blood pressure or viral infection.
Comments
Even though questions about the long-term effects of trastuzumab on the heart remain to be answered, "it's amazing to me how incredibly effective trastuzumab is. It has obviously been a major addition to the chemotherapy of...metastatic breast cancer, as well as [in] the adjuvant setting," said Hunt. "It is in this context of the remarkable efficacy of this drug that we need to discuss its downside."
"Trastuzumab is a very active treatment, and it's something we're all excited about in terms of treating breast cancer, so in the short term these results are reassuring," agreed Jennifer Eng-Wong, M.D., a breast cancer specialist from the National Cancer Institute's Center for Cancer Research.
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This article pins the heart problems on the combination using adriamycin and then herceptin - AC->TH.
Herceptin Heart Risk May Be Avoidable
09 December, 2005 20:45 GMT
The drug Herceptin, already viewed as promising for women with both early and late-stage breast cancer, got another boost Thursday with new research showing the heart damage it sometimes causes might be avoidable.It also might still be effective when given for a shorter time, a finding that could drastically lower the cost of the pricey treatment.
At a meeting of more than 7,000 breast-cancer experts on Thursday, Finnish doctors said nine weeks of Herceptin instead of the usual year prevented recurrences and didn't raise the risk of heart failure. A second study found that pairing it with novel chemotherapy gave good results and avoided much of the heart-damage risk.
They make a convincing case for using Herceptin earlier in breast- cancer treatment, said Dr. Robert Carlson, a Stanford University breast-cancer expert who had no role in the studies.
"The jury is in and the jury has a very strong verdict" -- that virtually all women whose tumors are the type targeted by Herceptin should get the drug, he said.
May Improve Survival
Herceptin works against a gene that's overactive in about one-fourth of breast cancers. About 50,000 women in the United States and 250,000 worldwide are diagnosed with this type each year. Herceptin targets cancer cells, avoiding the side effects of most other treatments.
It was approved in 1998 for advanced breast cancer, but its maker, Genentech, wants to sell it for women with early stage disease, which is when most women are diagnosed. Recent studies on such women found it cuts the risk of recurrence and one analysis suggests it improves survival.
But it also can raise the risk of heart failure, especially in women also taking older chemotherapy drugs called anthracyclines.
Dr. Dennis Slamon, a scientist at UCLA's Jonsson Cancer Center who led Herceptin's development, tested its effectiveness in 3,222 women around the world on various chemotherapy drugs. Women got one of three regimens: standard treatment with Adriamycin (an anthracycline) and carboplatin followed by Taxotere; standard treatment plus a year of Herceptin; or a novel combination, Taxotere and carboplatin plus Herceptin but no anthracycline.
Two years later, 147 of the women on standard treatment had died or relapsed compared with only 77 and 98 women in the two groups, respectively, that got Herceptin. The difference between the Herceptin groups was not statistically significant, suggesting the benefits could be obtained without the risk of the anthracycline.
Information on heart damage supported this claim. Heart failure severe enough to cause symptoms like breathing problems was rare but was more common in the Herceptin groups than those on standard chemotherapy alone. However, a larger proportion had less severe heart damage, and it was least common among those who skipped the anthracycline.
Costs Too Much
"Herceptin is very safe" except when taken with an anthracycline, Slamon said. The study was paid by Sanofi-Aventis, makers of Taxotere, and Genentech. Slamon has been a paid speaker for both.
Further analysis of the women's tumors turned up evidence that two-thirds were not likely to benefit from anthracyclines anyway, Slamon said.
However, several experts said they weren't ready to abandon this mainstay of cancer treatment.
"They work," said Dr. Larry Norton, breast cancer chief at Memorial Sloan-Kettering Cancer Center in New York.
Dr. Gabriel Hortobagyi of the University of Texas MD Anderson Cancer Center, agreed but said Herceptin's benefits are still worth the low risk of heart failure.
"The big problem is, it costs too much" -- more than $40,000 for a year of the drug alone, said Dr. Linda Vahdat, director of breast cancer research at Weill Cornell Medical College.
To attack that problem, Dr. Heikki Joensuu of the University Central Hospital in Helsinki, Finland, tested nine weeks of Herceptin plus chemo or chemo alone in 232 women.
Three years later, disease-free survival was 89 percent in those who got Herceptin versus 78 percent of the others.
Most studies are giving Herceptin for a year and one large one is testing two years but those are totally arbitrary times, Carlson said.
"They have really changed the question," he said of the Finnish researchers. "The question now is, is even one year necessary?"
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http://www.sciencedaily.com/releases/2011/08/110809212433.htm
This link has many articles on herceptin including the heart problem risks.
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It all comes down to whether you want to risk potential side effects from treatment or recurrence of aggressive Her2 breast cancer. If your oncologist screens your risk appropriately with pre-treatment cardiac assessment, continues to screen at least quarterly during the year of Herceptin, and if you have no underlying cardiac issues, the vast majority of patients don't have issues with Herceptin. If there is minor impact on heart function, as detected through MUGA or echo testing, Herceptin can be discontinued or postponed. Most patients with decreased heart function regain ejection fraction percentage when the drug is stopped and/or restarted later. Try this link to a cardiac specific study:
http://www.cancer.gov/clinicaltrials/results/summary/2007trastuzumab-heart0607
For me, the proven benefit of Herceptin far outweighs the potential side effects or risk. I feel this way about the chemo I received as well - I did not have every side effect, and I made it my business to learn as much as possible about how to manage the ones I did have. I worked in conjunction with my oncologist, his P.A. and his nursing staff to minimize and manage any issues I had.
edited to add: my link doesn't seem to be working, try typing the address? You posted it while I was writing this! Awesome!
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Herceptin has been a godsend in changing survival rates for HER2+ women. When i was dx and we were waiting for the path report, the surgeon said to me (regarding the Her2 status), "This is one area where you WANT to see 'positive' on the report." She was very happy when mine came back Her2+ so I could get Herceptin.
I did the TCH (with carboplatin) without major problems, and the rest of the year with Herceptin. Finished in 4/10. I had 5 MUGAs (one at beginning, then quarterly and then one to finish up). They stayed the same (around 57%) until the last one, where it dropped to 51%. I could tell that it would be lower, I was finding my heart rate raising faster on the treadmill, but didn't notice it otherwise. As the months went by, I can tell I am recovering and my endurance is improving. I am also taking L-carnitine (which was recommended to me on this board) and coQ10 which are helping rebuild my heart function.
From the reading I have done, I would NEVER consider the small risk of heart problems as a deterrent and therefore take my chances with a Her2+ cancer.
During my last 3 Herceptins, i sat next to a lady who had a small cancer about 8 years ago. She only had surgery, nothing else, and didn't want Tamoxifen since she had already done the 'hot flash' thing and didn't want to do it again. Well, at her 5 year mark, she recurred as stage IV and was getting Herceptin along with me. When I went back six months later to see the nurses and drop off some Christmas cookies, they told me she didn't make it. I know there are LOTS of examples and stories on all sides. But for me, I would rather be able to look back and say I did everything I could to fight it. I am all done now (except for being on Tamox) and feel fantastic. Working out hard at the gym daily (running, lifting weights, etc.), working hard at work, enjoying life with family, friends, doing a bit of traveling. Life is wonderful. I'm not sorry about any of the treatment I went through.
(Oh, and I had rads - which were no problem at all.)
Please PM me if you have any specific questions or tell your wife to feel free to as well.You sound like a wonderful husband. She is lucky to have you on her team.
Amy
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The only side effect I had from herceptin was an occasional runny nose and sometimes a jittery nerve in one eye which never came back after I finished. As Dragonfly and Amy say - I didn't want to look back and be sorry I hadn't done everything I could in the first place.
The thing is that chemo/herceptin works - as proven by many many posts on these boards of women who had chemo before surgery to shrink their tumours. One of my friends on here had liver mets and herceptin has totally killed them off. I remember reading the posts of Sundiego whose very young wife had liver mets and chemo/herceptin was rapidly shrinking those mets.
Blair - a blood cancer marker test may not show anything, my onc said they are not reliable for breast cancer. Plesse keep us posted and keep researching - you are a great husband. My husband didn't get into it as he has had his own cancer battles and he hates being reminded of it. Even when he was facing surgery for bowel cancer, he didn't research - I did it for him - and he's not as computer savvy as I am.
Sue
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Blair, have you seen anything about Navelbine and Herceptin?
This article suggests that may be preferable to Taxotere and Herceptin given the toxicity of Taxotere, but I can't find much else on it.
http://www.medscape.com/viewarticle/736332
I gather Navelbine is easier to tolerate, although I think it requires a port. Did you discuss ports with the oncologist? I'm wondering when they are recommended and where they are placed.
I have my first meeting with an oncologist Tuesday and I feel like I am cramming for a final exam I didn't know I had to take, with the associated full fledge, heart hammering, can't catch my breath panic attacks! I'm using your posts as my cheat sheets..... -
TheLadyGrey I could be wrong but I don't think Navelbine is used in early stage BC.
My MO left the decision about the port up to me but advised me that it is recommended due to the number of infusions that will be required over the course of the year with chemo and Herceptin. The port placement was relatively easy and my vascular surgeon put mine on the left upper chest low enough that it cannot be seen (i.e. covered with most of my clothing) and central enough that my bra strap does not rub across it. Because I could not have infusions in my right arm (risk of lymphedema due to SNB) and would have been limited to only my left arm, the port made sense as a way to protect the veins in my arm. Essentially the port connects via a cathether to a large central vein. My catheter runs from the port, across my collar bone and looks like a vein in my neck-no one has ever noticed it.
If you are not squeamish and want to see photos of an actual port and how it is accessed, check the following website (it was very helpful to me when I was first trying to figure all of this out):
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The Lady Grey - I would concur with dragonfly1 on the Navelbine. I believe that it is used predominantly in later stage cancers after many other chemo regimens have been used. I think I have also seen it used when there has been a Taxotere allergic reaction, as it is gentler. My port was placed during my BMX because my surgeon already knew I would be receiving chemo. It is just below my clavicle, in plain sight below the hollow of my throat, but it is so small and well placed that you would never know it is there. It facilitates blood draws and infusion of chemo/Herceptin and then Herceptin alone. I recommend having one if you will be receiving a year of Herceptin as that would be a lot of sticks - and we all know that some nursing staff are better than others with that! Some chemos are toxic to the skin and a port is preferable, also preferable when having had a BMX since both arms are susceptible to issues with needle sticks if you have had a bi-lat SNB. Ports can be placed on the chest or neck or arm.
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Dear susieq58, TheLadyGrey, SpecialK, AmylsStrong - Thank you for the posts. KEEP them coming over the weekend. Today is a rainy day in Beijing. It is my free day - hope it stops later. Some people have written about Navelbine. Since I am in China now, I have to rely on my wife to ask the second oncologist and the second visit to the first oncologist a lot of questions. I am hoping that at least they will explain why Cytoxan instead of Carboplatin in TCH. My wife is very resistant to the idea of a port and discussed with the first oncologist about it - they will try for now with IV into her arm and hand veins. My wife does not drink enough water. She is going to have force herself or I am going to have to force her to drink at least 16 oz or more of water a day. On that score, how much water do you all drink with the treatments and how often. TheLadyGrey - good luck with your oncologist visit and please post back here afterwards. Well, I have to go an try enjoy Beijing. Will post more later. Sunday I go to Hong Kong for a week of business and then back to Beijing until Nov. 17th. Then home to take my wife and kids away over Thanksgiving and then on to treatment with my wife on 11/29.
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