When do most recurrences for HER2 happen
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I was very highly triple positive with three nodes affected, doing fine and was five years out last summer, but would love to hear of a study done on herceptin for early stage and what the stats really are??
Tricia x
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I guess I need to join this group. I have just finised my chemo. Now on to radiation..and the herceptin year. I was told I have a 30% chance of having a recurrence. I asked, is this because of the nodes, the hormone negative or the her2+ and they said a combination of the three. I am feeling pretty good at the momment though. I obsess about the nodes though. They did not show up on the ultrasound, the CT scan or the PET scan. These were all done within the same month as surgery. I wonder if I should get a second opinion still.
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kathleen 1966, go for the second opinion, why not? you deserve it!
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kathleen I understand your fear for the nodes. I had no nodes but a huge tumor and super fast growing, grade 3. There are so many risk factors for recurrence. Nodes doesn't automatically mean it will spread just like no node doesn't mean it won't. They really don't know for sure.
Just think that it never got past those 4 nodes and since they have now removed it with the tumor you are cancer free until you are told otherwise. We don't worry about getting into a car accident everyday but we put our seat belts on. Chemo is your seat belt as will be eating healthy, exercising, reducing stress and going to your doctor visits.
Congrats on finishing chemo. My last is today.
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Congrats to both kathleen and lago on finishing up with chemo! HIP HIP HOORAY! YOu are both one year behind me, and yes, it does get better as time goes on!
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BTW I spoke with the onc fellow today about hormone therapy for the slightly positive and the effectiveness of herceptin. He said that herceptin works more than 50% of the time. Not sure if that's true but I like it. Also he confirmed that if you are 1% or more hormone positive then you are hormone positive. No such thing as a little pregnant… you are or you aren't.
This chemo I was on my own so I had to take a cab home. No big deal until I slipped on the ice and landed on my ass and arms. Right elbow is a little sore. Good thing it isn't my lymphedema arm but the last thing I need is more swelling. Chemo has done plenty already
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Hi ladies!! Can I jump in here and join... there has been so much great info on here! My numbers are 90% ER+, 20 PR+ and HER+ by FISH. I just finished rads yesterday, and continue Herceptin until July.... started Tamoxifen in Nov (diagnosed at 41). Still want to ask my onc to check to see if I metabolize tamox... if not, will have ooph.
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Interesting about the hormone. I was 10% progesterone positive and was told this was not clinically significant, that I am clinically hormone negative. I did have one surgeon tell me that hormone positive of any kind was hormone positive. My oncologist and I were going to discuss whether or not to do the hormone therapy at the end of chemo but I forgot to mention it!
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the actual word on Herceptin and you can look at the HERA trial for this is that it's NOT that it works 50 percent of the time its that it changes your stats by 50 percent. So if you start with a 30 percent risk of recurrence after chemo, surgery etc. The Herceptin is supposed to cut your risk by another 50 percent making it 15 percent.
I have 3 separate Oncologists due to being on the SWOG trial and they all cite those statistics. Two of these Oncologists (I have not asked the third) State they have had not one early stage recurrence in 5 years after a year of Herceptin. Of course we know they are out there you can see them on the HERA trial however it is a MUCH LOWER risk after Herceptin
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Hi All,
This is a very interesting thread.
I never thought about breaking my risk factor into herceptin and hormonal.
I though and understood from my onc that since HER2 was the most aggressive of the 2, it determined the risk and thus the chemo etc.
I can see here that my kind of hormonal type is even more rare than most. I was only ER+(85%) and PR-(5%). The HER2 was +++.
I know that because I don't have both I have 40% less receptiveness to TAMOXY (from a retrospective study).
Hoping that the herceptin worked and did not leave anything to be caught by the tamox, even though I wouldn't think of not taking it.
Health to us all!
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mmm5 - that is what I have been hearing also, that the 30% would be 15%. thanks for letting us know that you have been told that by 3 different sources.
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Unless you've taken statistics, they can be really weird. I once had a friend who was a manager of a clothing store, and she called me to ask me what she should do if a customer had two 10% off coupons. SHe assumed that she should give her 20% off, but it doesn't work that way--If the customer had two 50% off coupons, are you going to give her as much stuff as she wants for free since that would be 100% off???? Once I explained it to her this way, she kind of got it, but I know it really confuses the heck out of lots of people!!! mmm5 explained the 50% reduction correctly--it doesn't mean it only works on 50% of the people treated with it, it reduces your original chance of recurrence by 50%. Maybe someone else with more statistics knowledge can come along and explain it better--I just took the one class I needed for my biology degree!
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I haven't read all the responses, so this info may be redundant.
The recurrence *timing risk-i.e., 1-3 yrs out vs. later--is based on ER/PR receptivity, not the HER2 (because of Herceptin). So, for those of us who are ER-/PR- the greatest risk of recurrence is in the first 1-3 years, like our triple negative sisters. For those who are ER+/PR+, even after Herceptin treatment, your risk of recurrence will be the same as that for other ER+/PR+ women.
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That would make everyone's risk of recurrence equal, except ER/PR+, HER 2 -, or no??
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Reading this thread, I have a better idea of why the onc I saw for another opinion, who is an expert on HER-2 +++ (she is lago's onc, too, hi lago) told me that my tumor was not a typical HER2 positive tumor. I am highly ER and PR positive. She wanted me to have the OncotypeDX, because even though my FISH score was amplified (I don't know the exact score, it doesn't say on my path report) she thought the Oncotype might give a better idea of just how HER2++ I am. My HER2 score came back 11.6. Anything below 11.5 is considered "Equivocal" so I was right on the borderline. My Oncotype score was 67, not a reassuring number. Now I'm wondering if because I'm not highly HER2+ the herceptin will be less effective. I sure hope that is not the case.
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webu I thought I read the more HER2+ you were the more you would respond… and then I read a study that said something different. I questioned the onc fellow this week about it. Granted he is only a fellow but he stated they don't really know who responds and who doesn't but he said it was bit more that 50% do respond to herceptin.
The drug is still too new to really know. I did find it interesting though that one of the latests studies says herceptin may be able to break the brain blood barrier if given with Viagra! Yes gals we may be singing "viva viagra" soon:
Viagra may enhance herceptin delivery
http://www.scientistlive.com/European-Science-News/Medical/Viagra_may_enhance_herceptin_delivery/24491/Also Levetra:
Phosphodiesterase Type 5 Inhibitors Increase Herceptin Transport and Treatment Efficacy in Mouse Metastatic Brain Tumor Models
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2856671/See always something new happening.
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lago - LOL picturing a chorus line of us with our bald heads singing "viva viagra"
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Love the image!!!
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Ha ha ha. GR8 image
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Viagra is turning out to be quite the medicine... impotence, pulmonary hypertension and now BC!!! Viva!!!
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I was recently dx (1/6/11)with 1.7cm IDC. According to my path report/surgeon I am triple positive; although I don't yet know my %. I somehow managed to leave my path report at the surgeon's office:(. This forum is very informative since there doesn't seem to be much info regarding us triple positives. Anyway, waiting in BRCA analysis to determine whether to have lumpectomy or mast. Should find out on Tuesday. By the way, I am 36 with no family history of breast cancer.
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Welcome kriskat - If you end up having chemo and it is TCH there is a very good thread here called 'taxotere,carboplatin and herceptin'. There are a couple other good ones as well that deal with triple positive. Yes it is not too common to be triple positive but it does give us a lot of treatment options - chemo, herceptin (immuno therapy), anti-hormone therapy! I am sorry you have to face this. I would suggest two things if you haven't already done them, keep a notebook of doctor things and any thoughts/questions and take someone with you to the doctor as an extra set of ears. I found that so helpful because sometimes the decisions are challenging and it is helpful to have someone who was there and can discuss things. Best wishes!0
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you guys lose me all the time with your understanding the lingo of drugs. i've asked every one of my team why no herceptin for me.. my cancer was high esrtrogene == cant remember the exact #'s. they all agreed that since i had an agressive chemo.. they're "saving" it in case of reoccurence.. whaddaya think ? Lago; thanks for telling somebody who told somebody who told me to delete my cooies and cach to gt on. it saved my life!!! 3jays0
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3jays... I believe with your stats, you should definitely be getting herceptin.... not sure why you wouldn't or why they would 'save' it.... they can always give it again later if something happens also. I would seek a 2nd opinion. Someone correct me if I'm wrong, but HER2+...I believe herceptin is in order... unless your heart is not strong enough.....
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thanks, Leanna. im going there tomorrow. gonna ask again "WHY" your'e right, though.. could be my heart.. i'll ask . some meds, like AC you can only take 1x.. i ass u med herceptin was one of those.. you know the joke make an a** out of me.. right?
i'll letcha know what the new answer is.. 3jays
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3jaysmom I agree with Leanna. If you are HER2+ (confirmed by FISH test) then you should be getting herceptin. I would seek another opinion. Herceptin only works for us that are HER2+, and it is a life saver when it works.0
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3jaysmom - ditto here with lago and leanna9, HER2+ by FISH would indicate herceptin unless your muga or echo is below about 50 I think!0
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Hi ladies! I just found this thread and I'm glad I did. I am also highly triple positive (99% ER 97% PR) and I did not realize that it was a more unusual combination. I know a couple of you from the August chemo thread (Hi librarylil and Omaz!) but for those of you I don't know here's my story. I was dx in May 2010, had a lumpectomy and re-excision. Was going to do TCH but turned out to be highly allergic to Taxotere. So I did AC x4 and Abraxane x4 (last one is next Friday, yay!). I will be on Herceptin for a year and will also be starting Tamoxifen in the near future. I am 33 and do have a family history of BC (grandmother and 2 aunts) but BRCA 1&2 negative.
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Hi jsw19. We met on the August thread before I ditched. Yes triple positive is rare. I'm only 30%ER and 5%PR but I was told there is not such thing as being a little pregnant by the onc fellow. You are hormone positive or you are not. I'll be going on the generic arimidex as long as I stay in chemo-pause. My onc is monitoring me. I'm 49 (for 2 more weeks). At your age the probably will give you tamoxifen since you could come out of chemo-pause.0
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We always worry about a reccurrences once we've had bc. I am HER2 + and ER- with 5/20 nodes involved. I had herceptin along with the chemo and finished out the rest of the year on it. My doc checks the HER2 level every 3 months along with tumor marker tests and all the regular things that go with the lab work. I am 6 years from dx and am doing fine! My doc told me that any woman at any time can get bc. The longer I go cancer free, the better. That is the bottom line. It's hard not to think about a recurrence, but it is important to live a good life too. I try not to worry about the future and live in the present.
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