Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
I have been posting on the DCIS section and now am moving here because my wife's diagnosis and possible treatment options have changed. Initially, my wife was diagnosed with DCIS in both breasts. On October 14th, she had a double mastectomy with immediate reconstruction with gummy implants. She also had bilateral sentinel node biopsies which were negative. We received the final pathology report on October 27th. The final pathology report said that the left breast was all DCIS with surgical margins of 16 mm and Stage 0. The right breast pathology changed. It is now Stage 1a. It is now both DCIS and invasive ductal carcinoma IDC. Grade 3, comedo type with necrosis, solid and cribform, ER positive, PR negative, 3 foci of IDC - 1 mm, 1 mm and 3.5 mm. Unfortunately HER2 positive. Surgical margin of IDC is 1.5 mm and DCIS is 2.0 mm. The Breast Surgeon referred us to a medical oncologist and we will have a consultation on Monday. The Breast Surgeon also said radiation was not necessary. The Breast Surgeon mentioned that in her opinion, my wife will need to have herceptin, chemotherapy and arimidex. I would appreciate hearing from you if you are in a situtation similar to this, have taken herceptin or are about to take herceptin, have had chemotherapy or are about to have chemotherapy. Thank you very much in advance for your information-sharing and advice.
Comments
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I think if you read this board a few minutes you'll see the stories of hundreds if not thousands who have done what your wife may do.
I did TCH - Taxotere, Carboplatin, and Herceptin. I did six rounds of TC and one year of herceptin.Halfway through the taxotere I started getting neuropathy in my fingers, so we switched me to weekly taxol. I hadn't know about how effective l-glutamine was for neuropathy at that time.
Aside from that, I didn't find chemo difficult. I believe in drinking lots of water before, during and after chemo to keep your body fully hydrated, and to eat a high fiber diet to prevent constipation. Other that that, it was easy. I worked through it - I work in a school. The herceptin has no side effects.
I recurred five months after I finished my last hercetin, so went back on a different chemo and navelbine - just had surgery to remove half my liver. Your wife is luck in that she is such a low stage, however, all her2 cancer is dangerous so she will need to follow the protocol.
Good luck.
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CoolBreeze is right, you'll find lots of us who are currently receiving exactly the same treatment that is being suggested for your wife. I had TCH x 6 as well and I'm still receiving Herceptin-it's the standard protocol for Her2+. Chemo and Herceptin are recommended even in small, node negative Her2+ tumors because Her2+ has a nasty way of recurring even when it wasn't in the nodes-very high risk! In the beginning I was devastated about needing chemo and asked the MO "but why? it's not in my lymph nodes-how could it go anywhere?" She explained that Her2+ tumors don't behave like others and they don't know why but their best guess is that it's possible for cells to travel from the primary tumor through the blood to other organs without lymph node involvement and chemo/Herceptin will hopefully address that. At the end of the day, once I understood the high risk I wanted to know that I had done everything possible to prevent recurrence.
I hated chemo but found it manageable. I worked the whole time, struggled with GI problems and felt increasingly fatigued-I work in a busy hospital. 4-6 weeks after chemo my energy returned and has continued to improve. I now have neuropathy in both hands but it's not painful and it's mostly problematic at night. I have had absolutely no problems with Herceptin other than the very first infusion which gave me cold-like symptoms. Herceptin can cause heart problems in a small percentage of people so they will closely monitor the heart (for me it's a MUGA scan every 3 months-I've had 3 and they've all been fine-no change). It's a long year of treatment but it gets progressively better/easier. I have 3 1/2 more months of Herceptin to go.
I will always worry to some degree about recurrence but I know that TCH is my best bet in beating the odds. I actually feel fortunate to even have access to Herceptin for early stage BC (wasn't always the case). Check out the Lifetime movie "Living Proof" about Dr. Slamon and the development of Herceptin-remarkable story...
All the best to you and your wife...
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BlairK, I too, had Taxotere, Carboplatin, and just finished 18 rounds of Herceptin Monday. Yay for me!!! It was very doable....kind of like childbirth, as time goes by, tend to forget the days where I felt like sh*****. I am a nurse and took a 6 month leave. I was neutropenic after nearly every chemo and also had a lot of GI symptoms, even vomited a few times. Had no side effects from the Herceptin. Your wife will probably get a MUGA scan every 3-4 months while on Herceptin to make sure ejection fraction remains within normal limits. A friend of mine was Her2+, node negative and ONC did not recommend chemo because of a low Onco DX. My insurance would not pay for Onco DX and stated it is considered experimental with Her2+ breast cancers. If I was her, I would have demanded chemo or at least would have gotten a second opinion. You will find a great wealth of information on these boards. I wish the best for your wife.
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Dear CoolBreeze - Thank you for your post. I certainly will read this thread over time. TCH seems to be one protocol and AC->TH seems to be another protocol. It is Saturday and the MO visit is Monday afternoon. I will try to read as much as possible. So far the scariest thing is all the side effects I am reading about especially the Herceptin side effect of heart damage - cardiomyopathy. Thanks again. I hope a get a lot of posts tomorrow.
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Dear dragonfly1 - Thank you for the post. You have an excellent way of explaining things. I think the odds are going to be high that my wife will need chemotherapy and herceptin. We will know Monday when we visit the medical oncologist. I tried to show your post to my wife but she walked away and refused to read it. At least I will be better prepared for the MO on Monday. I am reading about your protocol TCH but I am also reading about AC-T plus herceptin. Anyway, your post is really valuable for me and I appreciate it. I hope you will return to good health and be healthy. I will post Monday after the MO.
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Dear nurserhonda10 - Thank you for your post. Three posts so far - all valuable. I am learning quickly just as I did with DCIS, BMX, etc. since early September.
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BlairK I'm sure your wife is completely overwhelmed right now and terrified at the idea of chemo/Herceptin. It's really hard to get your head around 18 weeks of chemo and a year of Herceptin infusions when you first hear it. Hang in there-she needs time to process this and to understand how dangerous Her2+ is-it took me a while to fully accept the reality. As with this whole BC nightmare, it's a process. She's fortunate to have you there doing the research and becoming very informed. Just give her lots of space as well-she's very scared right now and needs to come to the decision in her own time.
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Dear dragonfly1 - As with the earlier stages of my wife's breast cancer, I am learning a tremendous amount quickly. You are right about giving her some space. She alternates between being grouchy and also saying "what ever happens happens". I am not wired like that. Throughout my life I have aggressively tried to find out as much as possible about any medical problem - mine and any family member.
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Blair, your wife is very lucky to have you do the research and be her biggest support. For me, it seems the hardest part of this whole journey has been the emotional part - we just feel so out of control. Everybody handles things differently so if you can just sort of meet her where she is each day - and it will probably change every day!! I was certainly up and down and all over the place!
I also did TCH, it wasn't fun but no lasting side effects for me. Keeping hydrated is really important, I faithfully drank 8 - 8 oz glass of water everyday and I'm still doing this. As I understood it from the chemo nurse it helps flush the chemo out of your kidneys. Another thing that the chemo nurse told me was to use Nioxin shampoo before and during chemo Almost all of my hair fell out during chemo but I always had just a tiny bit on top, and it sounds silly but even that little bit of fuzz helped me. You can buy it at Walmart hair salons and maybe other places too. My hair all came back really quickly after completing the chemo My ejection fraction did drop while I was on herceptin but came back to almost what it was before.
All my best to you and your wife.
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BlairK - Sorry to hear about your wife. She is fortunate to have a supportive man like you. Continue to be patient with her, like dragonfly said 18 weeks of chemo and a year of herceptin is a lot for a person to process, and yes, she is scared, but she will get through this. My fiance was so supportive of me actually he reminds me of you. He researched as much information as he could in reference to my DX and treatments.
I was DX in December after a unilateral mx i begin chemo in March. My treatments were 4 rounds every three weeks of taxotere, cytaxan and herceptin. I will continue herceptin infusions until March 2012 "one year of herceptin treatments". The chemo was doable, not many SE other than fatigue and flu like symptoms that usually occured 3-5 days after the chemo treatments. I didn't get nauseated at all...I took my anti-nausea meds as directed. I did lose my hair exactly 13 days after my first treatment..I was not devastated about that b/c hair will grow back and that also reassured me that the chemo was doing it's thing. I also had a metellic taste in my mouth that lasted about 4 weeks after my final treatment. I'm not having any major SE from the herceptin either, I am usually tired on the day of the treatment, but the next day i am back up and at it.
Of course everyone is different but I know your wife will be be fine and before long this will be a memory for the two of you...The weeks will go by faster than you think.
Nurseronda1 - Congrats on being done with herceptin!
Coolbreeze - Hope you are still doing well and healing.
Dragonfly - Sounds like you finish your herceptin treatments a month before i do. I consider herceptin a blessing since it directly attacks the her2+ cancer cells
(((Blessing to you all)))
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My wife and I met with the medical oncologist. His recommendation TCH but Taxotere Cytoxan Herceptin and not Taxotere Carboplatin Herceptin. There apparently are two variants of TCH. Taxotere Cytoxan Herceptin will be given once every 3 weeks for 4 treatments and then Herceptin alone once every three weeks until the one year anniversary is reached. Also in the recommendation is Arimidex after the TC is finished one pill a day for 5 years. The treatment will begin on November 30th. The consensus is that radiation is not necessary.
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BlairK I'm so glad that you finally have a definitive plan-it sounds very much like the standard of care. Although your wife's C will be Cytoxan, you still may want to join the TCH (taxotere, carboplatin, herceptin) thread which is very active and has many suggestions for managing SEs during this particular chemo. Be aware that Tax can cause nail pain/lifting and many of us have found that icing our nails during the actual Taxotere infusions has prevented this issue or minimized it (I used bags of frozen peas on my fingernails during each 1 hour Tax infusion). There are also some things your wife can do to guard against neuropathy-read the threads about Glutamine (I took Acetyl L Carnitine and I have mild neuropathy in my hands but I'd like to think it prevented it from being worse).
I hope that you and your wife are beginning to feel at least a little bit comforted by knowing what lies ahead even though it probably still seems really overwhelming. Please know that we are all here to answer any questions you have. Wishing you all the best.
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Dear dragonfly1 - Greetings from China. I am here on a business trip for two plus weeks, then go home to take my wife and kids on a vacation before she starts chemo. With the TCH regimen, there seems to be two "T" (taxol and taxotere) and two "C" (Cytoxan and Carboplatin). I am not sure I understand the difference but we are putting our faith and trust in the oncologist who has twenty years of experience and is considered one of the top doctors in our state. It is overwhelming but I am comforted by the medical oncologist showing us the NCCN guidelines and his prognosis of 95 percent survival rates and only a 2-3 percent chance of recurrence. My wife's IDC is 5.5 mm to 6.0 mm so it is very small. Your IDC is 1 cm which is bigger than my wife's so I am taking comfort that you are doing well.
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BlairK 5.5-6 mm is very small (great catch) which would explain the rational for TCH x4 instead of 6. It's less toxic and will be just as effective. Taxol and Taxotere are in the same family of taxenes (I had Taxotere) and I believe that side effects are similar. The Herceptin is the key for her and she should do fine with it. Again, they will monitor her heart at 3 month intervals to be certain that it is not causing any problems. Herceptin has completely changed the prognosis for those of us with Her2+ BC. Hope your wife is beginning to feel a little bit more grounded now that she has a plan. Enjoy your trip-must be hard to be away right now. Keep us all posted on how things are going...
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Dear dragonfly - Do you know the difference between Cytoxan and Carboplatin? That is the one thing I do not understand fully.
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BlairK I'm not sure why some MOs choose Cytoxan vs Carboplatin as our "C" and I don't know the big difference in the two. The taxenes are largely the same. I notice you are now on the TCH thread which is great. It has been my biggest source of info and support since the beginning. You should find others there who had/have Cytoxan rather than Carboplatin. We have some amazing women on the TCH thread who are quite expert in their knowledge. You'll find it helpful when your wife starts the actual chemo and needs day to day tips on SE management. I'll see you over on the TCH board...
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BlairK, they base treatment and stage on the biggest tumour when BC is multifocal, they do not add the size of all the tumours together for staging and treatment. I had multifocal BC 20mm and 15mm, staging is only based on the 20mm.
Your wife's biggest tumour was 3.5mm which is very small, her Onc would have decided on the less toxic chemo combo without over treating her with more aggressive Chemo for such a small tumour. I have seen quite a few women with small Her2+ tumours receive the same Chemo as your wife will be getting. Her prognosis is excellent and I wish you both well for the journey ahead.
Lou
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Blair, my experience is virtually identical to your wife's - diagnose with DCIS and found out yesterday with the full pathology report that I have 6mm high grade, HER++, maybe +++, etc.
I meet with the oncologist next Tuesday.
At this point, I am reasonably certain that there is NO POWER ON EARTH that could persuade me to do chemo. Based upon the resaerch I have done, the only statistically significant improvements in outcomes over the last 50 years relate to hormone therapies, which I am open to considering.
I'm not organic, nor am I an alarmist. I'm a retired trial lawyer with a high degree of skepticism for "Breast Cancer, Inc." which appears from my jaded point of view to play on extremely high pharmaceutical profit margins, defensive medicine and a patient population that is never more than a step away from a "Pink" moment.
Get a second opinion before you start on a course of action that has far reaching consequences. Understand EXACTLY what it means to lose heart function on Herceptin and the percentage of patients for whom that is a permanent disability, what EXACTLY it means to have neuropathy which can be permanent, EXACTLY what it means to have chemo brain which can be permanent, etc., etc., etc.
I'm astonished at the near universal chorus I hear from breast cancer patients of "well, I gained 30 pounds, got a port, lost 3 days every three weeks for six months, lost heart function, my hair, my nails, my taste buds, my MIND, but golly gee willikers don't get me wrong - I sure am grateful for all these drugs even though I have mets in my brain, lungs and liver!"
Golly gee willikers, I wonder why the drug companies are raking in the cash from all these compliant oncologists and grateful-to-be-disfigured-bald-vomiting-terminal but perennially grateful PINK patients rather than devoting some material percentage of those Pink stained dollars to better therapies - even - GASP - a CURE, as in "Race for" ... well, maybe not race but walk briskly...on second thought, stroll, ok, in actual fact, meander.
I'm demanding more. Consider having your wife look into exactly how sensible this protocol is.
I'm demanding more. -
I just read a sad story of a patient who was not given herceptin because her tumour was too small - 2mm invasive, the rest DCIS. In Canada, they don't give it to really small cancers - well, now she has mets and in only 1 year.
Blair - this study is a restrospective one which looked at people who had herceptin and those who didn't - worth looking at.
LadyGrey - you should also take a look.BTW you are wrong - herceptin has made a tremendous difference.
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Dear loulou40 - Thank you very much. I have reached the conclusion that with the TCH regimen, Cytoxan is used more for after surgery with early stage breast cancer and Carboplatin is used more for larger tumors and later stage breast cancer. Carboplatin can have more serious side effects such as kidney damage and nerve damage than Cytoxan. I am feeling more comfortable with the medical oncologist's recommendation of Taxotere plus Cytoxan plus Herceptin as I have previously described. Next week, my wife will visit the same medical oncologist alone and his treatment center. I am in China on a business trip. So the key will be whether or not my wife is comfortable. So far she is. She is beginning to do her own research but not on this bulletin board. The medical oncologist has over 20 years of experience and is only a 10-15 minute drive from our home. He received a "Top Doctor" award in our state. Thanks again for your posts. I just want my wife to get through this without serious side effects and to be cancer free.
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I agree.
To my understanding, Hercepin is a hormone based therapy, and as such can make a material difference in outcomes versus chemotherapy. As I understand it, Herceptin is given in conjunction with chemo but is not chemo.
That said, it has serious, alarming, potentially permanent side effects, particularly related to heart function, and those should, in my opinion, be very carefully weighed against the demonstrated statistical improvement in recurrence.
Dying of Herceptin induced heart failure is not a more noble death than dying of metastatic cancer. -
Dear The LadyGrey - I am sorry you ended up being blindsided like us with HER2 positive and IDC. Everything that we are talking about here has benefits and risks. Again, the trigger for chemotherapy and Herceptin is the HER2 positive. As I see it, HER2 positive is a high risk result. If my wife does not have the recommended treatment, then the risk is that the IDC can go in to the bloodstream and spread to other organs and then be a much more serious and life-threatening situation which will be even harder and more difficult to treat. With treatment as outlined here, the risk is the various side effects including heart side effects with Herceptin. The chemotherapy boards have thousands and thousands of posts. As many women on the boards have minimal side effects from chemotherapy as those that have serious side effects. Every person will have to make the key decision - am I willing to forgo treatment and take the risk that the cancer may spread into other organs and of course it may not spread or is the risk of side effects from treatment with the benefit of cancer reoccurence risk reduction better while accepting the risks of side effects. I know what my view is (I vote for the treatment) but since my wife will meet one-on-one with the medical oncologist next week, as with the double mastectomy decision this decision will be hers with me being here to do research and provide love and support. We still have some time and my wife and I have already discussed the possibility of a second opinion. Thanks again for your post.
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Herceptin can cause temporary heart damage, not permanent - it's andriamycin that does the permanent damage. Studies have shown that herceptin works better in combination with chemo. They are currently doing a trial where they are giving herceptin only for women over 70.
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LadyGrey - sorry if I sound authoritative, but I have done extensive research over the past 2 years, to the point where I told my oncologist which chemo I was having - which turned out to be exactly what he was going to recommend. The thing is, that if it ever comes back, or I end up with mets, I will know I did everything I could, as opposed to being sorry I refused treatment. I lost 22lbs, most women do lose some weight. The SE's are very manageable if you are given the right meds. I certainly never threw up. The only thing that annoys me about it all is my now very curly hair.
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Dear susieq58 - I have the perception that the risk of heart damage is relatively low. Do you have any statistics or percentages for the risk of heart damage on herceptin. It certainly is one of the most scary aspects of all of this but the risk of HER2 positive cancer mestasizing into other organs is equally scary. Again it all comes down to an analysis of benefits versus risks. I am not clear on one thing - are you having chemotherapy and herceptin or are you contemplating it? Thanks again for your post.
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Blair - normally tumours less than 5mm are not treated with chemo etc, but since your wife had 3, that may be why they are recommending it. BTW - you are such a wonderful husband to become so involved in this - your wife is one lucky woman.
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Blair - I had TCH x 6 and finished herceptin last December. They monitor your heart very closely before and during treatment and at the first sign of trouble they will stop. It is more likely to get heart damage if you are also having Andriamycin (no way I would let them give that to me), which is usually only given for node positive patients.
Sue
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I must disagree with LadyGrey. Herceptin is not a hormone based therapy. It is a targeted drug which acts on the growth receptors..
In a previous post LadyGrey mentioned all the side effects from chemo. Yes, you do lose your taste, your hair, possible neuropathy, and possible lower heart function. However, the taste buds return, the hair grows back, Heart function is monitored and it is reversible when Herceptin is stopped. Herceptin is stopped if the heart function decreases too much. No one can tell how a person will react to their chemo regimen. Perhaps, I was fortunate, but the pre-meds prevent any nausea. My onc recommend l-glutamine to prevent and/or lessen neuropathy. I did experience a littel in my fingers and toes. But it disappeared about a month after I completed chemo. I also had Adriamycin, which has possible cardiotoxicity. According to my ECHO, Adriamycin did not affect my heart function. and I only have 2 more Herceptin treatments to go. being younger than 60, in good health, and never having chemo before, I was in a low risk group for cardiotoxicity. With that in mind I accepted the fact that I needed chemo.
I'm not crazy about paying the drug companies all the money for these drugs, but I'd rather fight the cancer that I have, than let it grow because I might have bad side effects from my treatment.
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Dear susieq58 - My wife will have TCH (Cytoxan) x 4 and herceptin for a year and arimidex for 5 years. Our medical oncologist added up all the tumors together to make his assessment which differs from one post in saying that it is the size of the largest tumor. Three small tumors or foci of invasion plus a fourth area of suspected microinvasion in the original biopsy plus High Nuclear Grade 3 and HER2 positive (and ER +) all add up to the thinking for the recommended treatment plan. The medical oncologist also has at least two other patients if not more currently on the same regimen and they are doing well. My wife will have baseline MUGA scan next week. And she will have an additional one-on-one visit to the medical oncologist next week and formulate her own opinion. At the end of the day just like with the decision for the BMX, it is my wife's decision and she is the patient. I just want my wife to live a long cancer free life. My wife is more involved in reading and networking to her support group in this situation with chemo and herceptin compared to the BMX situation and I am glad for that. The medical oncologist is on-line and has already answered one e-mail that I sent from China. I am in China on a business trip until November 17th and then I return home to take my wife and kids on vacation and then the treatment starts on Nov. 29th. During this period - any information I can get on TCH and herceptin and side effects would be much appreciated.
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Dear susieq58 - My wife SNB on both sides were negative. The medical oncologist is following NCCN guidelines and also believes that Cytoxan has less side effects than Carboplatin. I rejected Adriamycin as soon as I read about it for the same reasons - it also causes heart damage potentially especially in combination with Herceptin. The medical oncologist said that he keeps Adriamycin in reserve for later stage cancer. He believes that my wife's survival chances are 95 percent and the reoccurrence risk is 2-3 percent.
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