Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
Comments
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I am so sorry to hear you are going through this too. It really sucks!
This is one of the latest links...I'll have to search through for more links but this one was August 16, 2011. I know I have more saved somewhere on the computer. I wish you the best too!!! -
Thanks -- I had actually already seen that. I am technically T1b, in that the pathologist said that. It is mathmatically impossible, but there it is.
I have like all of the markers in one area or another, which means I am a good candidate for all of the drugs, the problem being that I am temperamentally one who says "why should I?" versus "why shouldn't I?", the answer being that I have it all in a way that doesn't lend itself to playing dodgeball with any of the therapies.
I'm like the LAST person who should have the bait and switch pathology plus this final pathology report that bears zero resemblance to anything I have read about. I didn't trust anyone to start with -- but this is just getting too damn weird. I may change my mind and forego treatment ....AGAIN!
Actually, my goal is to get throught he port installation. I reserve the right to change my mind after that.
When does one start sleeping again? I'm starting to feel like a science experiment -- "nonsense -- you can in fact go 72 hours without sleep and function." I feel kind of odd, but not in a bad way.
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Dear KC71579 - You live not so far from us. Our second opinion came from CINJ in New Brunswick affiliated with Robert Wood Johnson Hospital. Maybe my wife's second oncologist and your oncologist are the same doctor. I will private message you but maybe you can post the articles here so everybody can read them. I am in Hong Kong and China on a business trip and come home November 17th. Everything is up in the air until we get the third opinion. Your post was very very valuable, useful and helpful. It still is a tremendous dilemma. I am obsessed with trying to get as much information as possible and in her own way so is my wife. When I called her on Skype she was watching videos on the Sloan Kettering website and reading articles on small HER2 positive tumors and what to do about them - very unclear and problematical. Thanks again. If you can share even more about your situation as it relates to my wife's situation, I would be greatful.
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Dear TheLadyGrey - What chemo was recommended to you? You did not tell us. Is it TCH - Taxotere Carboplatin Herceptin x 4 then herceptin. How many opinions did you get? Given your choice of words you sound southern and possibly from Texas. Did you in fact get an opinion from MD Anderson Cancer Hospital? Anyway, please elaborate a little more and post about what is going on as will I.
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Dear KC71579 - Thank you very much for the article. I had read it last week and it is already posted here early in the thread. Do you have any other articles you can share?
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TheLadyGrey,
It looks like we're going along the same path. I had my port implanted yesterday, and I'll start my TCH on Tuesday. After the nurse tried three times to thread my veins for the light sedative they used for the procedure, I know I made the right decision in getting a port. I didn't have much pain - just a bit sore in my neck area today.
Like BlairK, I've done a lot of internet research, and I feel comfortable in my decision to do the TCH treatments. I'm going to a free HER2 seminar on Saturday morning, and I hope to find out more information that I can share on this message board.
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Good morning!
I am going through my old e-mails to find the ones I sent to Jenn so that I can post the links. I found a few, and please forgive that some of them are older as I had to make this decision 2 years ago.
Lady Grey, sleep has resumed again with the help of my little friend Ambien
Believe me, it is not something that is easy to get past, but it does happen. I was diagnosed 5 months prior to my wedding, so that helped since I had something else to focus on. When I was making this decision, I made a list of pros and cons for myself with regard to chemo and herceptin, based on everything I was told and everything I had read. That really helped me make my decision too. I should say that my tumor's ki67 was <5%, which was a big factor with my docs as they felt that this was not behaving as a normal HER2+ tumor. I guess this is usually higher in HER2+. Apparently, my pathology has kept my docs up at night too I had three tiny tumors, only one was ER+, PR+, HER2+ and the others ER+, PR+, HER2- DCIS and IDC mixed. Like Lady Grey said, I have a hard time too believing in people, so getting pathology double checked made me feel so much better.One other thing that I wanted to add was that I was 30 years old when I was diagnosed. The possibility of me losing my fertility without a clear cut, firm "you need chemo and herceptin," haunted me too. My young age keeps the doctors on their toes, and I have committed to constant follow up. Right now, I see a doctor a month pretty much...MO, Surgical Onco, Gyno, and Rads Onco. They rotate me so that someone sees me all the time. I don't mind that constant monitoring, and each time I go and get good news makes me feel better.
Blair, my doctor at CINJ was Dr. Sirena Wong. She was awesome! Her tumor board was split on how to treat me, right down the middle. She was the only doctor that said, based on my age, that she would put chemo/herceptin on the table for me. She told me that if I didn't opt for chemo and herceptin, I absolutely had to do Tamoxifen. She was very caring and compassionate, and even though I didn't treat up there because of the distance, I would highly recommend her. At the time, they were not giving Herceptin alone and I don't think that they do that very often now. I may have opted for trying Herceptin sans chemo, but they don't know how that works without the chemo. Frustrating
Blair, where do you live?
Here are a few of the other links still left on my computer. I haven't checked these guys out in a long time, so hopefully they still work and are not repetitive.
http://www.hemonctoday.com/article.aspx?rid=61261
http://www.theglobeandmail.com/life/health/herceptin-a-wonder-drug-but-not-a-miracle/article1515391/
http://www.hemonctoday.com/article.aspx?rid=61262
http://her2support.org/vbulletin/showthread.php?t=43251
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422516/
http://www.mendeley.com/research/management-small-her2positive-breast-cancers/
I am sorry that you are both agonizing over this decision Blair and Lady Grey. I can't tell you how many countless tears my husband (then fiance) and I shed over this. It had many ups and downs. I will tell you that once your decisions are made, you will be at peace. Right now, IMO, is the hardest time when you are weighing all of the options. No one should have to go through this
Hugs!
Krissy
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Dear racerdeb - TCH with carboplatin or cytoxan? Good luck with your chemo and herceptin and please write and tell us how it is going. You have 2 cm tumor so there is no doubt or ambiguity about your treatment path. I would imagine that tamoxifen or arimidex depending on your menopause status will also be part of the treatment plan. Good luck again.
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Dear Krissy - I live in Central New Jersey. That is about all I would say in a public forum. The second oncologist will also go to a tumor board. It is now a 1 to 1 tie ballgame with 1 chemo + herceptin + arimidex and with 1 arimidex only. The third opinion and tie breaker will be a large city teaching hospital and that will be either Penn in Philadelphia or Sloan Kettering in New York. It sounds like your doctor is Chinese. I am now in Hong Kong and also came from China and will go back to China on this business trip. The first doctor who recommended chemo plus herceptin plus Arimidex is also Asian. I speak Mandarin (well enough to carry a conversation) and unfortunately I can say cancer and breast cancer in Mandarin. I will read all your articles. Thanks a lot.
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Dear Krissy - The first article is very useful. Thanks again. How do the doctors monitor you? Do they do full body scans or blood tests?
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Dear Blair
I do blood work, u/s, diagnostic mammogram, MRI. I also do pelvic internal/external u/s (because of young age and tamoxifen). All of this rotates. Full body scans would only be done if I were symptomatic, or if blood work shows elevated levels. Knock on wood, so far, so good. Dr. Wong was Asian. Very smart lady. My brother's mother-in-law is currently treating with her for stage 4. Sloan and UPenn are great hospitals, as is Cancer Treatment Center in Philly. I am with a local medical oncologist, Dr. McGee.
Best Wishes!
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BlairK,
I agree that my recommended treatment plan is somewhat of a "no brainer" with the size of my tumor. Since cancer wasn't found in the lymph nodes, I had hoped that I wouldn't need the full-blown chemo treaments. However, with the HER2 positive status, I know I'll need to have these more drastic treatments. My doctor told me that I had a 35%-40% chance of recurrence without it. My TCH treatment plan is for Taxotere, Carboplatin and Herceptin. No other treatments have been mentioned.
I can see where the decision for your wife is not as easy with the smaller tumor, and I hope your doctors will help y'all (yes, I'm from Texas LOL) make a good decision.
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Blair, I met with the oncologist on Tuesday. The treatment recommended is Taxotere, Carboplatin, Herciptin once every three weeks for four treatments and Herceptin once a week for the first six weeks.
I had decided to do it, then read some more about side effects and am back on the fence. I'm in the MD Anderson system but no date. I had decided that going to MD Anderson was pointless because my oncologist was part of the under one cm study so they aren't likely to deviate from her recommendation, but now I'm on the fence about that too.
As I sit here today, I'm having the port put in at 6:00 am tomorrow. The decision to use a port was easy for me. Between the chemo and the blood draws and who knows what else, that is WAY too many sticks for me! I'm going to outline the line of my bra with a sharpie prior to the surgery as I saw suggested here. I'll let you know how it goes.
I have ordered the Penguin Cold Caps which will arrive Monday. The representative told me that they have good outcomes with the TCH treatment. I had the delivery expedited so I will have a couple of days to practice with them -- I think it is a bit of a fiddle to change them out timely and smoothly.
I'm set to start TCH next Wednesday with the second of 6 weekly Herceptin infusions the following Tuesday I am reserving the right to change my mind up to that point they hook me up. Right now, I'm just doing the next thing in front of me. And crying a LOT.
I'm copying my two posts about the substance of my conversations with the oncologist. She is a very impressive person, and I am not easily impressed.
First post:
So, as promised, here's my summary of what my oncologist said:1. HER2+ is dispositive. You have it, you get adjuvant therapy. She didn't out and out say that (see below) but that was my takeaway. I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument. Unlikely that I can use it to successfully undermine her recommendation. 2. My tumor is scattershot -- the ER/PR+/HER2- bits are laid back, pot smoking, sunset loving, Bruce fans who might get around to checking out the surrounding territory someday, while the ER-PR-HER2+ bits are weaponizing to take over hostile contiguous countries. We didn't talk about the DCIS. 3. Breast cancers are like that -- a bit of this, a bit of that. The pathology reports reflect the distinct characteristics that amount to action items. My pathologist communicated that he didn't like the weaponizing bits AT ALL by phrasing things a certain way -- I'm a student of words and I had to agree as the word choice and level of detail struck me as odd (seeing as how I have SO MUCH experience with pathology reports.) "Why are there so many 'negative, unfavorable, suboptimal, FISH Panel prognosis: unfavorable" comments? She knows the pathologist and said he was making it clear he doesn't like the look of it. 4. My invasive component is 6 mm, some of which is the laid back bit and some of which is that weaponizing kind. Both kinds were added together to reach the 6 mm number, although I don't think it is nearly that simple. There is no way to break that down to what percentage is what, and if there was she wouldn't trust it and would recommend adjuvant therapy because of the HER2+. (You will start to see a theme here.)5. With my profile, my risk of recurrence is 15-20%. In general, the risk of recurrence is 10-15%. I'm not sure why mine was pegged higher. 6. Adjuvant treatment reduces my risk of recurrence to zero (seriuosly, she said that). The chemo dials down the reactivity such that the Herceptin can kill the cells. 7. She recommends TC (Carboplatin), 4 infusions every three weeks, and Herceptin 1x/week for six weeks then monthly to complete one year. Because Herceptin is an antibody protein, she likes to get the blood level up quickly hence the 1x/week for 6 weeks regimen -- don't you just love the way I said that like I know what it means? I hadn't seen the 1x/week for six weeks protocol before. 8. Neulasta is given the day after each TCH infusion. Bone pain is generally felt only after the first one and can be handled with Advil. No mention of Claritin and I forgot to ask. Overweight women are more likely to experience bone pain. 9. Side effects: a. Nausea is licked. If drug A doesn't work, drug B will. Drugs are taken on a preventative basis. b. The short treatment period puts my risk of neuropathy, eye problems, and finger/toe problems at zero. c. Fatigue: week one, 75%, week two 85%, week three 90%/normal, then back down with the next treatment. The best antidote is to exercise -- I think exercise cures pretty much everything so no need to sell me. d. Cold caps work. Like for real. They have a cold cap "Angel" who spreads the word and and helps women use them properly. 10. I need not be concerned about cardiac issues. The statistics are international so the level of care is uneven, and overweight women are more likely to experience a decrease in function which rights itself when treatment is over. 11. The ER+ bits, she placed at 3-4 mm (do the math -- I'm down to 2-3 mm of HER+, added to together), but size didn't really matter as her recommendations would be the same: Tamoxifin for two years then the one that starts with an A for three, reducing my 5% risk of recurrence to zero. That treatment will also reduce the risk of a new cancer on my right breast.12. I asked whether the TCH would wipe out any cancer that is my right breast. She did answer me, but I have no idea what she said. That's all I have for the moment. I have to admit she was remarkable. I went in with about the worst attitude you could have -- not only was I not going to do it, everyone who suggested I should was my avowed enemy, and by damn I had every single article printed out and indexed to back up my position.Not only am I going to do it -- I hugged her at the end of the meeting. I don't hug strangers.
Next day:
I consider this oncologist like a force of nature -- go with her or get out of the way. Very high energy and extremely observant. Here are some additional things I recall: 1. Oncotype scores are for ER+ borderline cases where chemo is a question mark, but HER2+ calls for adjuvant therapy (remember that theme?) so scoring isn't relevant.2. Cytoxan is not FDA approved for TCH and there isn't much SE difference between it and carboplatin. I'm skeptical about that, but I think that adherence to protocol in the absence of a compelling reason to deviate is one of the prices paid for being treated by a national name. 3. It is acceptable to wait 84 days after surgery to begin treatment. I have no idea why they came up with that totally random number. 4. Lymphovascular invasion didn't matter to her as the tumor is HER2+ so adjuvant therapy is appropriate in any event (that theme again....)5. The weaponizing HER+ part of the cancer is ER/PR- so hormonal therapy is not helpful. 6. There have not been any trials for Herceptin only. She said that after Herceptin was approved, the researchers at MD Anderson went back to study the outcome in small HER2+ tumors that did not receive adjuvant therapy and were shocked at the high rate of recurrence. It had already been established that treating women with HER2+ tumors greater than 1 cm with chemo plus Herceptin resulted in markedly lower rates of recurrence, so that protocol was adopted for smaller tumors where adjuvant therapy is recommended. WIth chemo + Herceptin, the risk of recurrence with small HER2+ tumors dropped from 10-15% to near zero. Doing a trial with Herceptin only would be ethically difficult given what the medical community knows about the efficacy of chemo plus Herceptin. It is unethical to continue with a trial when it becomes clear that a class of participants is experiencing materially better results, the idea being that all trial participants should be offered the superior treatment. The long and the short of it is that we aren't going to see a Herceptin only trial for invasive disease, at least not any time soon. I think she said Dana Farber is putting one together for DCIS. I'm forgoing a second opinion because what I want is for someone to tell me that the risk/benefit analysis weighs against adjuvant therapy except I know how to read. This oncologist is offering the most palatable regimen (except for the Cytoxan) which guarantees no recurrence (her words, not mine). A different oncologist might have either (1) a less absolute prediction, or (b) a worse regime in which case I am back to square one. The whole point of this exercise is to buy peace. Of course I could change my mind about all of that in the next five minutes!I can't believe I have ER-PR-HER2+++ AND ER+PR+HER2- cancer. Seems statistically unlikely -- so far, statistics haven't been very friendly to me and I do wonder about buying into a system which is 0/3 in terms of predictive value. I worry that because I happen to like this particular statistic (15% to 0%) I'm being too quick to use it as a basis for my decision. -
TLG - Do they have you scheduled for a baseline MUGA or echocardiogram prior to the start of your Herceptin, or have you already had one? That is standard of care.
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Echo set for 3:00 tomorrow (fun filled day, right?)
Someone wrote to me that all I really have to do is show up, and I'm using that as my mantra. "Don't think about next week -- just do the next thing. You aren't deciding anything. You are just showing up."
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Theladygrey That's a good mantra. You don't have to be brave, you just have to show up. This is such an overwhelming experience that completely defies logic. One day you feel fine, the next day you are told you have a life threatening illness and then you are told about necessary treatments that will affect you dramatically physically, emotionally, cognitively, etc. Can you say post traumatic stress disorder? Trying to regain some equilibrium is not easy in this context. I work in healthcare and have also found it very difficult to become "the patient". I question everything and don't think that all of my physicians have taken kindly to my well-informed, well-researched, questioning approach:) The ones who are not threatened by that are the ones I trust and respect. It sounds to me like you have found that in your MO. With that feisty attitude of yours, a wonderful MO and all of us cheering you on, you'll do well...Good luck with the port and echo tomorrow!
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Dear TheLadyGrey - Thank you for your write-up. I still think you should get a second opinion. Too much is at stake. At 6 mm, the need for treatment is more clear than my wife at 3.5 mm. I would like to know more about the "weaponizing" versus "laid-back" cells. My wife has "scattered nests of cells" as opposed to a "solid sheet" and I am not sure what that means. If you are ER positive I am surprised to hear no mention of hormone therapy.
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Blair Theladygrey did mention hormone therapy-she said she would be receiving Tamoxifen x 2 years followed by "the one that starts with A" (I'm guessing Arimidex) x 3 years...
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Dear TheLadyGrey - I love your writing style and colorful way of writing. It is a great pity though that we all are writing about cancer. You should be asking your doctors about a MUGA scan in addition to or instead of an echocardiagram. Our next door neighbor is a cardiologist and also across the street is our pediatrician. A MUGA scan measures the heart ejection fraction and is much more useful. Basically it measures if your heart is pumping blood efficiently. If it were to fall below 50 percent, they would consider stopping herceptin and then giving you medicine to rebuild your heart. The echocardiogram is a more standard test given to any patient while a MUGA scan is more specialized. All the doctors and posts that I have dealt with since my wife has been diagnosed with BC talk about MUGA scans and none of them talk about echocardiograms. By the way, the risks of heart damage appear to be low - under 5 percent and other factors such as age, physical condition, heart disease history and the use of adriamycin which can also damage the heart all come into play. Please keep posting and good luck with your pre-chemo tests and treatment. You still have time to get a second opinion and it may be well worth it but only each patient can decide that for themselves.
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Blair - echocardiograms also measure ejection fraction. I have had only echocardiograms, you will find that whether an echo or MUGA is ordered varies by oncologist. What they are generally looking for is either a drop below 50%, or a 10% drop in ejection fraction between scans, which are usually done quarterly.
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Dear SpecialK - I stand corrected.
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Dear KC71579 - Your doctor Dr. Serena Wong was trained by my wife's second opinion oncologist Dr. Deborah Toppmeyer. Both of them are at CINJ and Dr. Toppmeyer is also a medical school professor and trained at Dana Farber Cancer Institute at Harvard. Small world. Unfortunately and since we have a 1 to 1 tie, we are going for a third opinion at the University of Pennsylvania. If we need a fourth opinion we will go to Sloan Kettering in New York. I told Dr. Toppmeyer that you had written to me and were a patient of Dr. Serena Wong and that your parameters are similar to my wife's and also you received the same recommendation as my wife and are reoccurence free after 2 years. Thank you again for your very valuable post.
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BlariK,
I found a link that may be helpful to you and your wife. It is a discussion be several oncolocists and how they proceed with very small HER2+ turmors.
You may have to register to look at these.
http://www.researchtopractice.com/Browse-Tumor-types/breast-cancer/cocb/1/1/matrix
Here is the path to get to the comments by five oncologists from the major cancer centers as to how they treat T1a and T1b HER2+ cancer.
Home › Browse By Tumor Type › Breast Cancer › Consensus or Controversy, Issue 1: Adjuvant Therapy for HER2-Positive Tumors › Consensus or Controversy, Issue 1: Clinical Investigator Overview Matrix
Best wishes, Boo
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Dear Boo307 - The debate among the five oncoloigists is very useful and interesting. The relapse rate discussion is scary. Thanks a lot.
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One more question to everybody. My wife's FISH test for HER2 is 5.0. The cutoff for positive versus negative is maybe 2.2 or 2.5. I asked the second oncologist if a FISH test of 5.0 is more aggressive then compared to a FISH test which is lower like 2.5 or 3.0 or 3.5. She said it did not matter - the key thing is whether it is considered HER2 positive or HER2 negative. Did any of you discuss your FISH test number in your pathology report? Any insights?
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My oncologist said the same thing: FISH over 2 is HER+, and how much over is irrelevant to treatment decisions and doesn't indicate the level of aggressivenes. In other words, a 7.0 score isn't more of a threat than a 2.5. My score was 4.04.
Net/net, I asked my oncologist about every single term and number on a 4 page report with addendum, and, after answering thoroughly, she consistently turned the conversation back to how, for example, the Nottingham schale is irrelevant because I am HER2+.
I think -- and this isn't based upon anything but my own study of the history of the disease and the available treatments -- that oncologists must be a little bit excited to see HER2+ patients because they have something to offer them -- Herceptin -- that flat works a HUGE percentage of the time. I haven't seen another treatment that promises even close to the near 100% recurrence free success rate of Herceptin.
Blair, I am not getting a second opinion for family reasons. My kids are older -- two away in college, and one in high school. The high schooler is not doing well at a time when he needs to be focused on his school work. The college kids, both excellent students at challenging universities, panic in spurts but they at least aren't here having to watch mom walking around crying and staring blankly into space. The oncologist has promised me, and in turn them, a 100% guarentee of no recurrence. If I do this minimal treatment (minimum in that it is the least amount of chemo I have seen) it will all be over by the beginning of next semester, and my kids will stop worrying about me. That is worth whatever I have to go through. I will do ANYTHING for my kids.
I plan on having each of them meet personally with the oncologist. She is a vibrant, articulate, passionate woman who speaks with surety. I want them to hear the words from her mouth and ask whatever questions they have.
I know your kids are much younger, but whatever you decide, look into ideas of how best to reassure them. Kids flat KNOW when something big is going on, however much we try to tell ourselves otherwise. In the absence of another explanation, they will often blame themselves for the tension.
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"I know your kids are much younger, but whatever you decide, look into ideas of how best to reassure them. Kids flat KNOW when something big is going on, however much we try to tell ourselves otherwise. In the absence of another explanation, they will often blame themselves for the tension"
Never were truer words written, Lady Grey. For Blair or anyone with younger children, they must be told what is going on at an age appropriate level.
Caryn -
Dear TheLadyGrey and exbrnxgrl (an old friend from my DCIS thread) - I agree with both of you about my children. I want to tell my children somehow about cancer but my wife won't let me or won't do it herself and I can't at this point go against the wishes of my wife. She sometimes go ballastic about little things (thankfully not too often) and would go ballistic if I attempted to tell our small children (boy 8 and girl 8) that mommy has cancer without her consent. The one good thing lately is my wife appears to be worried enough to read some research papers that I send her and some websites and is networking and asking around. However, there is not much guidance on what do with T1a HER2 positive tumors. The discussion panel on the five oncologists about T1a and T1b HER2 tumors sent to us by Boo307 was very good and relevant and there were some really good hospitals represented - Dana Farber, MD Anderson, Johns Hopkins. It seemed 4 out 5 would not treat a T1a HER2 positive tumor with chemo and herceptin. The oncologist from MD Anderson seems more aggressive than the other four. I am now back in Beijing having had 6 hectic days in Hong Kong. I am focusing on my business well enough but my wife's situation constantly weighs on me and I am up late on this bulletin board and internet searching for answers. It does not help that so far the third opinion will not be until December 27th. I hope that the delay will not cause my wife any problems with reoccurence risk and the HER2 positive and that perhaps they can expedite it. The biggest factor in my mind is the reoccurence risk with a T1a HER positive tumor - nobody seems to know definitively. As others on the bulletin board write that their treatments with TCH are OK and they have not had bad side effects although some usual side effects - it seems to me that if the risk can be reduced to 2 to 3 percent it could be worth it. But I am not sure my wife is thinking in those terms and I won't know until Thursday or Friday after I get home.
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Blair, I did a little research and this looks like a well done book for smaller children, My Mom Has Cancer, amazon=http://www.amazon.com/Our-Mom-Cancer-Abigail-Ackermann/dp/0944235166.
I can't get the 5 oncologist discussion link to work, nor can I get it through search. Any ideas?
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TheLadyGrey I was just reading the graph with the 5 oncologists looking at T1a/T1b treatment. It's the first link Boo listed and you need to register to get to it:
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