TRIPLE POSITIVE GROUP
Comments
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LaughingGull,
Another option is ovarian suppression if you want to take an AI. I've been on Zoladex for 3.5 years now so I can take Aromasin. My OB/GYN has mixed feelings about removing healthy ovaries. He notes that women who keep their ovaries tend to live longer than women who have theirs removed. But, after all I'd been through, he told me that it was up to me -- that if I wanted them removed, he'd take them out.
Zoladex + Aromasin has been OK. When I turn 51 (the average age of menopause), I will take a vacation from them both and undergo tests to see whether I am menopausal. Then, I can just skip the Zoladex.
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Thank you Elaine. That is exactly my concern....the benefits of keeping ovaries vs removing them. Also I am not exactly sure my ovaries are healthy, given my monthly pains and aches. What is your experience with Zoladex + Aromasin?
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LaughingGull,
At first, Zoladex + Aromasin caused moodiness and hot flashes. I felt like I was PMSsed all the time. My MO prescribed Celexa, which has been fine. As time went on, the hot flashes have decreased. After 1.5 years on Zoladex + Aromasin, I was diagnosed with full-blown osteoporosis. So, MO has put me on medication to address that. At first, I was on Fosamax, but MO found a way to get my insurance to pay for Prolia (a shot every six months), so now I'm on that. At my next dexascan, we'll see whether or not the Prolia has restored any of my bone density.
In short, Zoladex + Aromasin has had some negative side effects, but I do not suffer from debilitating joint pain or anything like that.
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Thanks, laughing--I have some Biotene but haven't used it yet. #1 went well for me (although I've been treating myself to more-than-average junk food--oops).
I know this is old news here but WaPo had an article in today's Science section about the Herceptin study:
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Hap I am knocking on every piece of wood in sight because #1 has been a breeze. I'm sure it'll get worse but so far so good!!
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Thanks for the pep talk, Hap--very much appreciated!!
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laughinggull - I think how close you are to natural menopause is an indicator with how you will do with hyst/ooph or ovarian suppression, and also how deleterious the side effects may be. I had a total abdominal hyst/ooph nine years prior to diagnosis with breast cancer because I had uterine fibroids too numerous to count that were causing ongoing bleeding - literally for months on end. My gyn suggested removal of ovaries in addition since I was 45 at the time. As part of the diagnostic workup I had a TVU done about 6 months prior to the surgery which showed no issues with the ovaries themselves, although I commonly had ovarian cysts - including a large lemon sized one that ruptured - hurt worse than labor, lol!. At post op pathology a pre-malignant ovarian tumor was found, 3cm in size. Quite the surprise to all - including the doc, but glad I opted for the ooph in addition to the hyst. My cholesterol did elevate after the surgery, but might have anyway - and my total number is driven higher by my "good" cholesterol and my triglycerides are fine, and my bones did thin - but stabilize - and that might also have happened anyway because I fit the physical profile for osteopenia/osteoporosis. There is no way to know for sure how advancing age would have impacted either of those things without the surgery. I did have routine DEXA scans after the hyst/ooph, and would recommend that to anyone having this operation, and had one on the same day that imaging led to breast biopsy. This provided a very good baseline for the measurement of how treatment affected my bones. Chemo and six months of letrozole did have a deleterious impact and I started on Prolia in Feb of 2012, I cannot tolerate oral meds due to a reconstruction of my gastro-esophageal junction in 1995. I just had my last Prolia injection, for now, this past March. My MO does want to see how my next DEXA looks before deciding on whether to continue on Prolia - which worked very well for me - I had the largest recovery of density of any of his patients. Hyst/ooph did not cause any moodiness/joint pain/weight gain for me, but I did, and still do, have pretty intense hot flashes - and it has been the better part of 20 years since I had the surgery. Letrozole does not make them worse though, and they are improved through an anti-inflammatory diet. A couple of additional thoughts - if you have thickening of the uterine lining Tamoxifen can cause that to be worse, and a very small percentage of Tamoxifen users develop uterine cancer - something on the order of 1%. Also, some oncologists, mine included, do not like Tamoxifen for Her2+ patients - the feeling is that aromatase inhibitors (Femara (letrozole), Arimidex (anastrazole) or Aromasin (exemestane) have a better capability with patients who are both ER+ and Her2+ , as the Her2+ aspect can cause Tamoxifen to work less effectively over time, a concept known as "crosstalk" which encourages early Tamoxifen resistance.
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new here. Not a club looking forward to joining but here goes. Reading with interest that several of you did chemo before radiation die what appears to be small tumors etc. I was recently diagonased IDC stage 1a tumor 0.6 but triple positive receptor, hence reason I am on this forum. I was diagnosed on a Thursday met the BS Monday and Friday had lumpectomy with no lymph node impact. Waiting for path report and post op meeting with bs next week to discuss next Steps. Expect to get 2nd opinion at MD Anderson.
Interested in order of treatment radiation first or chemo?
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TTW I believe typical order is chemo, then rads, then Tamoxifen/AI. Others can give you their experience—I’m still fairly early in the process, but that’s what my tx plan is. I believe I’ll start the rads after I finish the Taxol (i.e., while I’m doing Herceptin only).
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laughing gull,
My OB/GYN refuses to take my ovaries (he also refuses to tie my tubes but that's a story for another day). He says that ovaries provide a whole host of other benefits and it's important to keep them. He's insistent.
For a while I was on lupron for ovarian suppression. I was also on tamoxifen, which is an unusual combo. But I was tolerating tamoxifen well, and my MO was worried about bone loss on an AI. I struggled on lupron for two years - migraines, vaginal dryness, moodiness, pain (I felt like I was 100 years old). I stopped the lupron and slowly got better over time. My last cycle was July 2015.
My current problem is that no one can tell me if I am menopausal, peri, or pre. My labs are mixed up and make no sense. So my MO says I cant get pregnant, my OB/GYN says I can and wants to put in a copper IUD it is super frustrating.
Your OB/GYN will definitely have an opinion. Have you had genetic testing?
TTW welcome!
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Dear +++ Sisters, you are the best!
Thank you for listening and chiming in and being there!
So I went to the GYN (he is a gynecologis/oncologist -I had no idea there was such thing) and the decision is: out they go. Because of my age and the pains and heavy periods and because as SpecialK mentioned, the uterine bleeding episode (accompanied by thickening of the uterine lining) looks like a red flag for Tamoxifen. I will start radiation next week, which will last 5.5 weeks, and after that I will get the oophorectomy.
Tresjoli2: did your doctor say what are the other benefits? This doc said it is not clear at all that there is such thing.
So alea iacta est. The decision is made. Thanks ladies for again guiding me and supporting me.
LaughingGull
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TTN - you didn't give any indication how old you are but if you are over 60, talk to MO/RO about brachytherapy. It is done when there is a small tumor and no lymph node involvement. I don't understand why the age thing but it appears that there is.
It has a variety of names but basically the radiation is done internally using the incision cavity rather than externally. Because it uses the surgical cavity, it is done fairly quickly post surgery. It's twice a day for 5 days but then you are done. My surgery was Dec. 20th and I was done with radiation by Jan. 4th. My final path report wasn't even in by then because of the holidays. Started chemo (herceptin and taxol) in early Feb. (in part because I was scheduled to help my daughter out of state while she had some surgery in mid-Jan). By Feb, I had enjoyed time with my daughter and sister on the east coast, had the port put in, and my first echo done.
On the ovaries discussion, I had both ovaries and uterus removed when I was 37. I had polycystic ovaries and never conceived. Back then we all did HRT so I had several strikes against me as far as developing BC was concerned. However, I was never sorry to see my lady parts go. I have taken calcium with vitamin D and chrondrotium and glocoscene (never can spell either word) for a number of years because I have arthritis but when I finally had my first dex scan last fall, my MO was surprised to report that "I had the bones of a 30 year old."
Tresjoli - in the "olden days" like the '60's, the American College of OB/Gyn's had a "recommendation that no women be given a hysterectomy until age times parity equaled 120." And of course you had to have the permission of your husband for either a hysterectomy or tubal. I thought that attitude on the part of mainly male physicians had ended but you obviously have an old school type doc. (I did my PhD dissertation on "voluntary sterilization" in 1976). End of my feminist rant! You can tell me your story about the tubal another day.
Being TP means the treatment is longer and means there are some treatments that are fairly effective. Talk about a double-edged sword!
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Welcome TTW
I was BMX, then chemo. No radiation.
Despite us all being 3P, it seems like our treatments are so very tailored to each of us. As confusing as all the treatments may appear, I find it comforting that we can each find a tailored treatment.
Best wishes.
Vicky
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Laughing--congrats on the decision. And just re: rads, you've got this. Yes you'll have some yucky skin (for a while) and yes the schedule is tough (every weekday) and yes you'll get fatigued occasionally but really it is not a big deal. (And just confirming that you'll be doing the every-three-weeks H/P while doing rads? I was pretty sure my MO said my rads would start when I was done with the Taxol, but you're done with the other chemo drugs, yes? Did you get a break between those and starting rads? In my head I'll get a few weeks/month off but I've never been told that.)
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TTW, standards are always changing as new drugs are approved. My guess would be that with a 1cm tumor IDC you would have a course of chemo with Herceptin and maybe perjeta, then continue with Herceptin and maybe perjeta over the next 12 months. In addition, there might be a course of radiation since you had a lumpectomy. Good luck with your pathology and keep us posted. Welcome.
Ingerp, good for you powering through round one!
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SpecialK--I almost PM'd you but thought I'd ask here. Others may be interested or have information to share. I just got notification that my blood work from tx #1 was available. Everything is in normal range, no big changes from last time I had CBC/metabolic panel, but what am I looking for? WBC? Seems I've seen Neutrophils mentioned on BCO? I'm just curious what the typical areas of concern are. (And I know I'll be getting some blood work before every tx, but I think they said only ?? every time and a more comprehensive one periodically? Would that be CBC every time and metabolic panel more infrequently?)
TIA.
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ingerp - you are looking for a number of things on both your CBC (Complete Blood Count), and periodic CMP (Complete Metabolic Panel) or BMP (Basic Metabolic Panel) - usually a CBC is done prior to each treatment, with a CMP or BMP done less frequently. Because chemotherapeutic agents have an effect on all fast growing cells - skin, hair, nails, digestive tract, etc., they also can negatively affect blood cells. There are three main blood cell components on a CBC. RBC (red blood cells), WBC (white blood cells), and platelets. A reduction in RBC leads to a lowered hemoglobin level - which provides oxygenation in the blood, and this is why after cumulative infusions you can feel like your muscles are burning or are short of breath. Hemoglobin is the number your oncologist will watch to determine whether you need a blood transfusion. If your hemoglobin drops below 8 usually docs will transfuse - you can be asymptomatic at that level but some people start to have symptoms at higher levels - watch for lightheadedness, dizziness, lethargy, confusion, or shortness of breath and let your onc know. As WBC drops you can be more susceptible to opportunistic infection, as these are the blood cells that attack intruders. With dose dense chemo you can receive Neulasta because there are more days between infusions, but with weekly chemo like Taxol, Neupogen can be used as a daily injectable to help boost WBC back to a safer level. Some oncologists also place patients on prophylactic antibiotics during chemo if blood boosters can't be used, or are ineffective. Platelets are the clotting factor in blood, if they fall too low chemo has to be postponed to allow them to come back up - because chemo drugs cause soft tissue irritation there is a danger of internal bleeding if your platelets are too low. Platelets can be transfused to help but they are the shortest lived cells, only about 5 days so transfusing them is a Band-Aid approach. Most of the other aspects of a CBC describe the blood cells - how many, what shape, density, etc., but the one other number that is watched is ANC - absolute neutrophil count - this is a measure of how well your body is manufacturing new baby white blood cells - if this is not happening then a booster will usually be tried. On the metabolic panels docs are usually looking at kidney and liver function - because chemo drugs are filtered through these organs. If your function is impaired beyond mild levels, you may need a delay, but this is not very common. To assist with kidney function drinking your body weight in ounces per day is advised to help flush the toxins out - this includes water, juice, soup, etc. - it is just important to help your kidneys process the drugs out of your system. Be careful with any pain meds that tax the liver, like Tylenol, since it is already working hard to do the filtering.
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thank you all for your responses. Was chemo as bad as they say? Yes my tumor on MRI was 6cm and MRI biopsy measured it 3cm long. So tiny for sure. Was told unless 5 or higher won’t recommend chemo? I want to knock the crap out of this stuff and not have it lurking somewhere else in my body. I am in great health, don’t even take aspirin so this whole regiment of medications and doctors is foreign and terrifying. Super mad have to deal with this. leaving couple of weeks for vacation in Europe and hope I won’t dwell on this.....good thing I will be with two friends that are long time BC suriviors! You all seem so knowledgeable and grateful to have found you. The HER2+ status scares me.
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hap - I have a medical background - used to work in Transfusion Services - have taken care of parents and in-laws with cancer, my in-laws were doctor and nurse, my husband's brother is a doctor married to a nurse, and his sister is a nurse. One of my best friends, who is also a BRCA1+ breast cancer patient diagnosed with triple negative at 35, is an organ transplant histopathology technologist and we discuss this stuff all the time. I have had 25 lifetime surgeries, a number of unusual tumors and an assortment of health issues. I ask a LOT of questions and do a LOT of research on my own. On metabolic panels the tests that indicate kidney function are BUN and creatinine. These values show waste products so are an indication of how well your kidneys are working to excrete. Liver values to watch are ALP, ALT, and AST - these things are made by a normal liver and have a normal range - too little or too much signals an issue. Bilirubin is the liver waste product measurement, similar to the kidney ones. Liver functions are pretty sensitive, if your liver was not working correctly I would think it would show up in metabolic testing. The liver also helps regulate estrogen. If your liver function is impaired it can cause a buildup of estrogen - which is not good for estrogen fueled breast cancer.
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SpecialK--I'm going to copy and paste your response into a word document to save. You are truly a gem. Thanks ever so much.
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laughing gull,
I am scheduled to take my ovary out one week after the end of radiation treatment. Like you, I am kind of young (45). Period not quite heavy but quite painful. Genetics came back with BRIP1 gene that could lead to higher risk of ovarian cancer. Met with OB Oncologist and a regular OB and decided to do the surgery. I was told there is no need take uterus out. Also it's a small surgery and OB will just do it alone.
I think my oncologist is planning to put me on tamoxifen. Thanks to SpecialK and I'll ask about AI as an alternative. Just have my bone density test done today for a baseline. My plan is to ask for Nerlynx at the end of Herceptin and Perjeta. Not sure if I can tolerate it but want to give it a try.
Thank you SpecialK for sharing your knowledge.
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3mm “greatest linear length of tumor is 3mm”. That is from mri biospy
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and yes have great team of doctors at Oschner in New Orleans. Once get full path report and meet post op with BS and MO going to MD Anderson for 2nd opinion. .6 cm was size mri found April 20 and ultrasound biospy so small had to do mri biospy hence the reference to .3cm tumor comment in path report. Due to 3 year prior b9 situation in left breast put me on tamoxifen which I tolerated well and Bi annual mammograms and mri all good until last month.
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TTW - because you have one measurement that is larger than .5cm (5mm) you will likely be recommended to receive chemo with Herceptin, but I would be doubtful that Perjeta would be recommended for a tumor this small. Her2+ stage 1 tumors are often recommended to receive Taxol and Herceptin for 12 weekly infusions, which a number of people on this thread have undertaken. Post chemo, while still receiving Herceptin for the balance of the year (now in infusions given every three weeks instead of weekly) you would have radiation and anti-hormonal therapy - some oncologists recommend this concurrently, others have you complete rads, have a short break, and then start anti-hormonals.. Here is a link to the study information regarding single agent Taxol and Herceptin for smaller Her2+ tumors:
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laughing, my ob/gyn said that keeping ovaries have shown cardiac benefits, and that women who keep their ovaries live longer. I have ZERO evidence to back that up, it's just what he said. I have to say, the man is a big fan of mine, and he delivered both my children and helped me through several miscarriages - as an OB he was amazing. Now, I'm finding he isn't really listening to me or trying to help as my GYN in a non traditional situation. . I've stayed loyal as he has been with me for 15 years. But I've been thinking lately of perhaps a second opinion. We will see.
TTW I had 1.5 mm of IDC...and I did taxol and herceptin. What I did was unconventional just three years ago, but is now becoming a more frequent treatment for us triple positive ladies. I was glad I did it.
Hugs to all!
Tres
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hap - you will never find a comparison where no treatment is used in a trial because that would be unethical to deny treatment to diagnosed patients. Since the purpose of the ATP trial was to see if they could give less treatment to node negative women with smaller tumors, the other comparison arm is effectively the trial data that precedes where AC-TH andTCH were given to patients with the same clinical criteria. The disclaimer by Dr. Winer is basically that for very small tumors chemo and Herceptin should be considered, but not mandated. He specifically mentions T1a - this is part of the TNM staging which means a tumor between 1-5mm, it refers to size, not grade. This is consistent with current NCCN guidelines, not a new result of this trial.
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Would love your thoughts although I don't have the pathology report. My best friend has had a recurrence after 25 plus years. She is not triple positive. He oncologist said chemo wouldn't work (?) (she will be getting arimidex). I was surprised when I heard this as I thought she would get chemo but I'm not up on the latest. I suggested she get a second opinion and maybe have her records sent to a national cancer center (like Anderson in Texas?) We both live in the San Francisco Bay Area. Any cancer centers you would recommend? We do have University of California San Francisco which is a designated cancer center. She can't have radiation because she had it 25 years ago and it was a lot stronger then. She's 72 (which you would not know) and has kids and grandkids she wants to be around for. Thanks.
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hap - correct. That is why the ATP trial was undertaken - the thought is that those much harsher regimens were chemo overkill for smaller Her2+ tumors. In effect, they did use those patients, and trial data from previous trials that tested other chemo regimens. There was no need to spend more money and recruit patients when they already had that data in hand - that would be reinventing the wheel. The trial was not necessarily undertaken to reduce cardiac toxicity - particularly from Herceptin - since under the ATP regimen you still get the same amount as you would with AC-TH and TCH. There were previous looks at the difference between AC-TH and TCH that established less cardiac impact when not using the anthracycline in the regimen. Data collected from previous trials would have been incorporated in the trial design, and what amount of DFA would be deemed a successful result. Here is a link to a more detailed account of the ATP trial:
https://www.nejm.org/doi/full/10.1056/NEJMoa1406281
cowgirl - can your friend be seen at the Carol Franc Buck Breast Center at UCSF? It is a NCI center, and has a great rep for breast cancer treatment. Laura Esserman, surgeon, and Hope Rugo, oncologist both are nationally known.
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I'm not smart enough to post a picture or I would show you one of a very bald me on my 71st birthday - two months post Taxol and starting AI's. My MO's comments - "you are a healthy 70 year old and we will get this." I think she did. Even told me to take out the port after the last herceptin. Both my mother and maternal grandmother lived until their mid-90's. Mom had a melanoma removed from her leg 35 years before her death so I am optimistic.
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hap - yes, you can have another chemo, there are folks here on BCO who have done chemo a second time with local or loco-regional recurrence. You cannot radiate the breast again though, so your surgical choices become more limited and reconstruction on a previously radiated breast can be problematic. There is a lifetime limit on Adriamycin, but if you struggled with Taxol I doubt that you could tolerate stronger chemo drugs. One of the specific features of using Taxol in the ATP trial was allowing those with smaller tumors to receive a gentler chemo. If you had a local recurrence you might be in a tough spot.
taco - you go girl!
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