TRIPLE POSITIVE GROUP
Comments
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Hi everyone,
This is my first post. I was diagnosed with a triple positive on 4/4/13. Right now I am trying to decide what to do. One doctor would like me to have chemo (TCH) for 18 weeks, every three weeks BEFORE surgery. The second opinion wants to do surgery and then a 12 week low-dose chemo. Anyone do either of these things?
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marisa - welcome, sorry you have to be here! You will find a combination on this thread of those who had chemo prior to surgery (neoadjuvent) and those who had surgery first and then chemo afterward (adjuvent). I think most of us had surgery first. There are risks and benefits to both approaches and the decision you make needs to take those into consideration. If you have chemo first they usually do imaging during this period to see if the drug regimen is working. This is good because you get to see "proof" of its effectiveness. This is sometimes done also to shrink a larger tumor so that a lumpectomy can be done, or make it easier to get larger margins. Others who have surgery first are relieved to get the tumor out, but then they have no physical evidence that chemo is working. With either choice you will be continuing Herceptin for the balance of the year. Many of us had TCH, then continued the H, a few others did 12 weeks of Taxol and Herceptin, then continued on Herceptin. They will chime in and let you know how it went for them!
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Welcome Marisa: You'll get lots of information and support here! I did TCH but I had surgery first, then chemo and then rads. What was the size of your tumor?
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Thanks SpecialK and ArleneA! Actually my tumor is only about 1 cm that they know of and a biopsy showed that it is not yet in my lymph nodes although the doctors don't seem sure of this.
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marisa - another aspect of neoadjuvent chemo that you need to consider is that you may not be accurately staged. Because staging happens after surgery when the final pathology report is done, and neoadjuvent chemo changes the picture, it is impossible to know exactly what the size and exact location of tumors/cells was, so it muddies the water. Staging is one of those things that bothers some patients and their doctors, but not others. It may be a factor in your decision if it will make you uncomfortable not being able to know for sure. Also, considering which drug regimen is problematic - the TC combination is harder on some people, Taxol is harder on others. I would ask your onc for their specific experience with their patients and the tolerance and complication rate for both TC and T only. There are ladies on this thread that started with TC(and H, of course) and had issues and were changed to T(and H), but I don't believe anyone did the reverse. There are also some who went straight to the 12 weeks of T, plus H.
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SpecialK- It's so hard; I just don't want to make the wrong decision with the chemo. But I know that I do want the double mastectomy (the doctors want me to do my left because of a large area of calcifications that I have) and am planning for the tissue expanders. I'm 36 years old with two young boys...
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marisa - I don't think either is the wrong decision, both drugs are taxanes, and making the decision about order of surgery and chemo comes down to which you are more comfortable with. One thing that may factor in is which you think you can tolerate better physically - recovery from surgery and then chemo, or recovery from chemo going into surgery. Usually you have about a month or so between each, so think about which you think you would do better starting with.
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Welcome Marisa...sorry you get to be a part of our special club....
I am relatively new too...just had surgery last week...my chemo and radiation are being discussed and planned this week and next. All of the woman on this board are so terrific with info and comfort...its all very unsettling trying to learn all the terms and medical jargon, but it does get easier very fast... I usually have the board open and also the abbreviation chart which helps you learn the "lingo".
http://community.breastcancer.org/forum/131/topic/773727?page=1#idx_10 -
Hi Dana, Did your MO or surgeon clarify why you are Stage 2 with such a small tumor ? Happy to hear that you are doing well.. Each day gets a little easier. Unable to give you advice regarding your sweet husband,my husband passed away a little over 3 years ago so I have been on my own..This board was and remains my salvation.
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Marissa, don't worry about wrong or right choices. Like Special K says, there really aren't any (except refusing treatment).
My co-worker's wife had my exact diagnosis, except she had 2 positive nodes while I had no positive nodes. We were in two different healthcare systems. She had chemo before surgery and I had chemo after. Even though her tumor was smallish (like yours and mine), they wanted to shrink it first to see if she was responding to the chemo, which she was.
I did Taxol with Herceptin for 12 weeks and did ok. TCH made me sick, so I only had one treatment of that. Rest assured that your case is likely being discussed by a tumor board. As I understand it, oncologists rarely make the treatment decision alone without bouncing it off of their colleagues.
Welcome to the board. Lots of fantastic information here!
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Eileen....still no clue why Stage II on inital path report...I think it must be typed wrong..unless the reason is I had more than one tumor...but I thought staging was always after main surgery...waiting for surgical path to come back by Monday and hopefully I can get accurate stage and re-post on my profile. I see the MO and SO on Tuesday!
Husband thing is odd, but I am reading the Breast Cancer Husband and loving some of the insight...got him talking a bit last night while I had his total attention in shower...he couldn't run...lol... I did tell him I know he is scared...that seemed to hit a nerve or light bulb for him....it will be a slow unpeeling with him...but I am a VERY patient girl ♥♡♥♡ sorry about your husband...thank God for this site for all of us!0 -
Expletive. I have a cold, with a temperature (assuming my thermometer is accurate, which is a big if). I was supposed to have herceptin tomorrow, but they are making me wait a full week. I was hoping to reschedule it for monday. I assume there is a reason why we are all on that 1x per 3 week schedule.... Whine. Sorry, just had to vent a little.
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cypher - I am sure it is fine, but sorry to hear you have a cold. I remember reading somewhere about some folks who had trips planned and they delayed one Herceptin treatment due to scheduling issues, their docs were good with it.
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"Custom made mold in the dark and peaceful radiation suite"? Pbrain, what kind of spa are you in?
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Wow! In just a few days you ladies have covered all my questions and I haven't even asked them yet, lol. I went backtracking into the thread to locate some really great stuff you've posted.
My biggest issue of course, was not being staged yet. I have 2 more AC chemo and then start Taxol and Herceptin (12 times/week). My lymph nodes are positive.
Thank you!!!
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I am doing my homework on Herceptin... I read the following on this site.....
"Herceptin works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals. By blocking the signals, Herceptin can slow or stop the growth of the breast cancer. Herceptin is an example of an immune targeted therapy. In addition to blocking HER2 receptors, Herceptin can also help fight breast cancer by alerting the immune system to destroy cancer cells onto which it is attached."
Does this mean there are always HER2 cancer cells in me? Kinda confused on the target therapy...........0 -
Dana - everyone has Her2 cells normally and they are in other locations in the body besides the breast. If you are Her2+ there is an overexpression of these cells and my understanding is that is what acts as a signal to the cancer to multiply, and makes this type of cancer more aggressive. Herceptin is also used for certain types of digestive tract (gastric) cancers - it is the overexpression that is targeted by the medication. Some people experience cardiac issues while on Herceptin because there are Her2 cells in the heart also.
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DanaM,
HER2 is a protein produced by cancer cells ( and it is not only associated with breast cancer), and a genetic mutation in the cancer cells themselves produces this human epidermal growth factor receptor 2. You did not inherit the gene from your parents, it is a DNA "error" in the cancer cells themselves. About 1/5 BC patients have cells that produce an excessive amount of HER2. Herceptin is the standard treatment for us gals these days, but on February 22, the FDA approved the use of a new drug, KADCYLA (Herceptin + emtansine {a chemotherapy drug}). I asked my MO about it on April 16, asking if I should switch over to it for my last six Herceptin (trastuzumab) sessions, and he stated that it is currently only being offered to BC patients with metastasized BC. I live in Canada, so maybe it is different in the USA. FWIW, I find the followng website useful:
TonLee, so glad to read that your renovation is essentially done. Time to enjoy your new digs!! BTW, I read an article today, attached, stating that drinking coffee and taking Tamoxifen reduce the rate of BC recurrence. Mind you, I find the article quite light on a myriad of details, but seeing as you are drinking two pots a day, good on you
. Here it is:http://www.sciencedaily.com/releases/2013/04/130425091345.htm
Marissa, a warm welcome to this thread. You will meet supportive, intelligent, funny, compassionate and wise women on this thread. FWIW, I had surgery first, then did chemo from end of July 2012-mid-November 2012. Radiation and Herceptin and Tamoxifen all followed.
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Gratitude - thanks for the coffee article
- not that I ever had many, but it's one vice I'm not giving up. Since I've pretty much cut out sugar, I look forward to several cups of flavored coffee a day.Lago & anyone who had tattoos done already - if you went to a PS to get it done, how did yours get the size right? Do they measure? Use a template? Or just free hand draw with a marker? Also, did it hurt or sting after and for how long?
On the Tamoxifen issue, is the CYP2D6 test something a primary can just run as part of routine blood work?
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Marissa I asked my BS why I wasn't getting chemo first. He said it was because that was only for really big tumors… at the time they thought my tumor was 7cm (actually 6.5cm but only 5.5cm was invasive). Later on after surgery I did ask my onc. She said the reason they might do chemo first is to see if you respond. A friend with the same onc had the same chemo/herceptin as me. We had the same tumor size (granted hers was bases on a clinical path since she did chemo first) but she wasn't hormone positive and her tumor was larger. She did have node invasion. She got chemo first.
So I don't really think it matters. There are pros & cons to both. I know I felt better once the cancer was out of me but of course I'll never know for sure if the chemo was working. Granted it might not of needed to work. But so far I'm coming up on 3 years August 31st so what ever was done it looks like it worked.
Go with the onc you feel most comfortable with. The one that explains things to you.
cypher that stinks. I know Herceptin does lower your resistance. Granted I got shingles on it and they still gave me my infusion.
PBrain you crack me up as usual: "Custom made mold in the dark and peaceful radiation suite"
Shore I wondered that too. I almost brought my circle template
I told my PS about what size I wanted… and had him redraw them twice going a bit smaller each time. I had small ones before. Of course they are a little bigger because my boobie prizes are bigger. Just cut some circles and see what you like. Then bring in the circle and tell your PS that's the size you want. Women do really come in all sizes. I find a lot of PS make them about the same size and too big compared to what I used to have. I had guy sized areolas before. Really small. Guess they match my estrogen levels now. OK I'm off to get ready for work on site again today. Will be MIA for a bit.
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Long, thought provoking , informative article...for every woman. http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?smid=tw-share
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Pbrain, what's your take on this?great news ..some Pharma cos are now sharing their research!
http://www.pmlive.com/pharma_news/trial_transparency_movement_is_irreversible_says_boehringer_chair_4735920 -
Gratitude. thank so much for the link on coffee and tamoxifen. Great news for me.. I drink coffee all day long.
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Eileen I'm a big coffee drinker too, when I'm falling asleep I have thought of my first cup of coffe. But with all the meds I take I'd sleep all day, and I'd rather be up more so I an sleep better at night. But when we go out I drik reg. coffe at nite too and it doesn't affect my sleep at nite or I don't know cuz my sleep is never the same, so what's the difference.
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Camille. I too can drink coffee just before bed,it has never affected my sleep.
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I was reading an article the other day regarding using scorpion venom for several cancers and breast cancer is one of those cancers. It will go to trial on humans in the near future. Brain cancer is a big one too. Apparently, the venom goes directly to the cancer cell and destroys it. Who would have ever thought about studying scorpion venom!
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Eileenohio and shore1, glad you liked the coffee article, but I did not thinK it had strong "legs." Shore1, re: the CYP2D6 test, I asked mY MO if I should have it administered in the late fall, before I began taking Tamoxifen in early 2013, and he told me the test is not super reliable and that given my cell receptor status for estrogen (100%) that the results would not matter as I need some form of SERM. If your test results are low in percentage scores for estrogen positive receptor status, then I think it makes sense to ask for the test.
Lago, I read this article and knowing you take an AI, I thought it might interest you (and, of course, any other ladies on this thread who also take AIs and are deemed post-menopausal):
http://www.medscape.com/viewarticle/802972
Ashla, thanks for the NY Times article. Thought provoking to say the least.
DanaM, here is another article, a very good one, IMO, about using Herceptin as part of the treatment plan for HER-2+ gals:
http://www.uptodate.com/contents/adjuvant-medical-therapy-for-her2-positive-breast-cancer
This site, www.uptodate.com, may be another site you want to check once or twice per week.
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Shore, you live close enough that you could get your tats from Vinnie in Baltimore. He is an amazing 3d tattoo artist for areolas. I think he only does breasts anymore because of demand. There might even be a thread on here about him.
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I am home from my ALND surgery. Only one drain. I am so thankful they kept me overnight instead of sending me home. Surgery wasn't until 3:30 and I came out of anesthesia better that I ususally do. However when the local anethesia shots wore off about midnight I started having severe pain along the incision and in my scapula area. They gave me dilaudid every 2 hours until about 8 this morning. Also started with the nausea and vomiting about the same time. And they almost had the catheterize me because I couldn't pee until about 3 am. On top of all that my IV was in the crook of my arm so every time I bent my elbow the slightest bit the monitor started beeping! All in all it was not a very good night with very little sleep. I am so glad to be home, not nauseous, and have the pain under control with Ibuprophen and have Vicodin to take at night. I guess the next step will be constipation from all the pain meds. Time to get out the stool softeners, etc that I had put away after chemo.
BS said he should have the path report by the end of next week.
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Thanks gratitudeforlife I doubt I will switch at this point because I'm handling the SE pretty well. Also according to my last dexta I'm not losing, or at least not losing enough to change the percentage numbers. I'm still osteopenic. If I do see a drop though I will discuss this as a possibility. I always wondered about Aromisin.
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