TRIPLE POSITIVE GROUP
Comments
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About 1 in 5 women who have breast cancer are HER2+. But, that's not THAT rare.
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I didn't think the +++ was rare neither. Idk???
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Justdiagnosed-best advice I found on these boards when first diagnosed was to take a tape recorder to all initial appointments as you receive so much info and you are already stressed. None of the docs I interviewed minded and it was so helpful to go back.
Your diagnosis is similar to mine. As Elaine mentioned only 1 in 5 have it. Not that rare but more rare than others. I don't believe that +++ relates to the size of your tumor but to the amount of Her2 being expressed.
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JustDiagnosed-What was the histology report? My invasive cancer was mucinous which is rare-perhaps your histology is rare.Bre58-thanks for the info. I asked because I just noticed a pea sized lump above my incision line that I am going to ask the MO and Plastic Surgeon about this week as have appts. with them already.
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Chrissie29
It has "no special type". ???
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Dr Pegram of Stanford discusses optimal pertuzumab ( perjeta) use in Her2-pos breast cancer.
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I had 7 rounds of Herceptin total - 4 with chemo and 3 thereafter - until LVEF dropped so low.
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I think that the hercepton can be strong, vs I heard that there is her 3+ . Has anyone come across this? Since I had 2 different gum ours in my left breast and had both removed because we thought it would never come back. I am finding this is not the case, with hercepton + . It can and does come back, but what triggered it? Since they are killing off just about everything that could come back? Anyone know why her2+ slips thru? My BS stated that our bodies can make estrogen, which I am guessing the receptor looks for an attaches to, if it can find it, it can be found in our fat cells? So if the her2+ is still around, I guess it can go mutate, with one of these re grown fat cells that turn into estrogen! Trying to be clear here, with this analytical mind of mine.
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I just diagnosed from Tennessee. Welcome to this very strange and sometimes surreal journey. I'm not a warrior or really not even brave but if I want to live I need to make the best choices possible. Our diagnosis is about the same except mine was a recurrence on mx side and it was 2.2 c. If you'd like to private message me for some extra support feel free. Others have done this for me and its helpful. Best to you and all the great ladies on this site!
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Jersey,
Her2 doesn't attached to estrogen. You can be her2 positive and estrogen negative. Here is a short definition of what her2 is and does.
HER2 - or human epidermal growth factor receptor 2 - refers to the HER2 gene and its associated protein. The protein helps to control the growth of healthy cells. But if the HER2 gene is amplified, or the protein is over-expressed, the cells can grow uncontrollably and lead to cancer.
Herceptin is a drug that targets the her2 cells. It supposedly works best when mixed with chemo, but I think they operate under that impression because most of the studies were done with chemo included before it was approved. Some people are getting just herceptin now, I believe. Fairly unusual though.
It is pretty well tolerated, but it can affect your left ventricular ejection fraction, so they monitor it with muga or echos to make sure it doesn't drop too low.
There is a her3 and a 4 I believe, but I don't think they are sure how they impact breast cancer yet. I'd have to look more,but I think one of them is more common with a colon cancer.
On the her2 cells slipping through, they can travel outside your blood stream also. However I am not an expert to comment on why people have a distant recurrence many years after diagnosis.
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Herceptin is a monoclonal antibody, that targets, or 'intercepts' that over expressing protein. It is not chemo, per se. Estrogen positive is when your cancer is fueled by estrogen, and yes, your body fat can and does produce a small amount of estrogen. it might be that as we age, as women, our bodies try to manufacture estrogen, since our ovaries dont produce as much. Our brain and bones love us for it! But your adrenal glands can produce a small amount also, and I am sure there are other things that do too. Use the search function on the left of your page here to find out more.
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Herceptin is the drug. Her2 is the problem.
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Aromatase inhibitors and tamoxifen are the drugs. Estrogen is the problem.
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Two separate issues altogether.
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well said, fluff and tomboy!
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Just to elaborate on some of the things in Jersey's post - I think there is some confusion between Her (human epidermal growth factor) - which includes Her 1, 2, 3, and 4, which are types of Her - with Her2 specifically being linked to breast cancer, and the way they result testing for Her2 - which can be 0, 1+, 2+, and 3+, with Her2+++ (or 3+) being the result that is definitively considered a positive result for Her2. Any breast cancer can return, Her2+ breast cancer is particularly aggressive, and surgery, chemo, targeted therapies, radiation, and anti-hormonals can and may all help, but there is never a 100% guarantee that the cancer won't return or progress. As fluff and tomboy said - the Her2+ and ER+ function somewhat independently - Her2+ is a genetic overexpression that tells breast cancer cells to replicate, and separately, estrogen fuels the estrogen receptors on breast cells. Apples and oranges. Estrogen is produced by our ovaries, adrenal glands, and body fat. If you are premenopausal, and ER+, you are given Tamoxifen which blocks the receptors on the cells but allows estrogen to circulate and do the positive things it does. If you are postmenopausal the assumption is that your ovaries are no longer producing estrogen so you are usually given an aromatase inhibitor, which interferes with the enzymatic mechanism which converts androgens into estrogen. Since body fat is also a source of estrogen doctors will advise maintaining a healthy body weight/low BMI. It is also important to note that most Her2+ driven recurrence happens within a shorter time period - 2-3 years after diagnosis, but ER+ driven recurrence can happen years later. This is why we stay on anti-hormonal medication much longer than anti-Her2+ medication.
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Ladies-Anyone have a lumps that they have felt after expander placement that turned out to be nothing? I have this eraser sized hard lump that I can feel. The MO said she thought it was expander, but the plastic surgeon didn't think it was expander but said it could be a skin cyst or fat that was affected by radiation. He said to watch it which is easier said then done after watching my original lump that didn't show up on mammogram or US for 3 months, but that eventually led to my cancer diagnosis. Any positive stories would be appreciated.0 -
Chrissie - sorry, but I'm impressed. I don't touch these aliens unless I have to. I could have a child's toy in there and not know it. If MO thinks expander and PS says definately not expander, either call MO back with that info or call BS.
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knmtwins-I don't know if tamoxifen causes insomnia, but I thought going into menopause could.Bren58-what tests do they do after mastectomy/implants to check if something is a recurrence?
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knmtwins-your comment made me smile-they are alien for sure! I think I will call the BS tomorrow to get her feedback. Thanks.0 -
Chrissie-I've had two or three lumps checked. If you are really concerned, they can do an ultrasound. Probably won't be too comfortable with expanders in. I don't know if they can do an mri or not . I think not because there is a likely the metal magnet kind of part
I have had sleeping issues since I started tamoxifen and now with arimidex. I have a prescription for Ambien that I try to use sparingly.
Specialk-thank you for filling in the empty spaces. I was hoping you or Lago would chime in.
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SpecialK, we are so glad you stay on these boards to help with all your great knowledge!
Chrissie, all docs are different. After my BMX, no one followed me. Never saw the MO again, and only saw the PS for the exchange and tattoos. My GYN did yearly bloodwork for a couple years, but that was it. This time around, I found the lump myself and followed up with getting it tested. Now after my recurrence (all new docs) I see my MO every 6 months, but he only orders bloodwork once a year. I see him again in 2 weeks and I may decide to switch MO's. He got me through chemo, but I am not very impressed with his follow up. I know others on here have different follow up protocols.
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Fluffqueen - What time are you taking your Tamoxifen daily? I've been taking mine with dinner and I'm also having sleeping problems. I might try taking it mornings to see if that helps.0 -
Time of Day - Taking tamoxifen - Anyone else want to chime in. Blown and I take it at dinner and have trouble sleeping. Is there a secret time to take it?
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I take mine at night and don't have any insomnia. I don't usually sleep through the night but that's been happening for about four or five years. I wake up and can fall back asleep fairly quickly.
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Thank you Special K for breaking all that down again for us Triple Positive BC Ladies. You explained it very well. Do you know what is the number the MO would like to complete on Herceptin?
Patty
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I was on Tamoxifen for 1 1/2 years and three months ago the oncologist put me on Arimidex; Tamoxifen was so much EASIER. Terrible, terrible, did I say TERRIBLE Joint Pain! In addition, foot cramps, and nail beds softer and nails peeling like when I was on chemo
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Fluffqueen and Bren58 - thanks for the info. I would feel better if someone could do an US so I will ask the BS about this.I take Tamoxifen in the morning and sleep ok so far. In fact, I had a colonoscopy on Tuesday at 11:30 so after came home and slept another 4 hours until 6:30 because they had to give me extra sedation. I was still able to go to sleep at 10:30am. I do notice though I wake up to go to the bathroom so not sure if that is related to the Tamoxifen. I was waking up with chemo but not after that ended.
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I have been taking 10mg in the morning and 10mg in the evening per my MO recommendation. I feel I don't sleep great, have night sweats and probably up every 2-3 hrs
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PMR53 - do you mean total number of Herceptin infusions?
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