HER2 Positive-anyone 10 years out?
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AnnMarie - Nicely said!0
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Ann Marie-that post may have done more to help me look ahead than anything or anyone I have talked to so far. You are so right.
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Hi All, I'm down to 4 Herceptin treatments, and I'm becoming very anxious about treatment ending. That little bugger was so aggressive. Can anyone offer their thoughts on how they moved on?
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Though I had multi tumors, the largest was 1.6 and the rest were very small, .50 an under yet it still went to four nodes so I see mine as also rather nasty...I had my last Herceptin three weeks ago. I did notice a woman on here, four nodes, stage III with Her2+ and hormone negative and I believe she was goind on 8 years, maybe even nine! I noticed she was in the herceptin trial.
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it makes you feel better when you all of the positive stories. i have my last hercptin oct 14th.. it is bittersweet. i am happy this routine is coming to an end, but nervous as well and hope tht it never returns. jackie
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Thank you, kathleen1966 and rackie for your posts. I should also pass on that my husband's cousin (aka my son's godmother) and one of my best friends in life, was diagnosed @ stage 4, her2+, er+ with spread to her lungs and several nodes. She sadly passed away a few months ago, but lived for 14 years with advanced stage. She used to tell me she pioneered Heception. Truly one of the happiest people I've ever met in my life. You never knew she even had cancer. She is my inspiration!0
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**pioneered Herceptin
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Missy I had my last Herceptin Sept. 16th. Yay!!! Seriously enough is enough. If Herceptin is going to kill it then a year of this should be more than enough. Matter a fact I've been reading that the protocol may change to only 6 months. Some large study is pointing that way. We should hear more about it after the San Antonio Conference.
I'm looking forward my nail not being lifted, my eyebrows and eyelashes not thinning, hair growing faster and a bit straighter. Oh and nipples… I get nipples on Thursday.
As far as I'm concerned I am NED. Until someone tells me otherwise I'm good to get back to my life. Focus now is landing a job. (As well as continuing to lead a healthy lifestyle).
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lago - Good for you for finishing. I like your way of thinking...we did what we had to do, then time to move on. Just a little scary. Feel like I'm somehow losing my safety net.
That is very interesting re the 6 month treatment plan vs. one year. Curious to hear the results of that study.
And, yayyyy for nipples!!! That is a good thing ....:)
I
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My stepmother had BC and is 12 years out. She was ER/PR- but does not know her Her2 status. I was told they really either didn't check routinely then or didn't necessarily tell the patients because there was no herceptin available then. So she was either triple negative or ER/PR-, Her2+ and she is still here, NED and enjoying life.
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Thank-You for all the recent posts, I learn so much from you ladies, it helps me focus on the positives. I finished x1 yr Herceptin in June, and went on to the voluntary clinical trial Neratinib which they say covers the BBB, blood brain barrier, currently I am finding it difficult to cope with what I think is the side effect, unknown territory, universe give me strength to get through this
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I agree, what uplifting posts!! I have two more Herceptin infusions left. I am scheduled for a latissimus flap with a TE on January 18th along with a right mastopexy. I am now thinking I should go ahead and have a prophylactic mastectomy on the right. Have appts on Oct 11th with breast surgeon and a reconsultation with the plastic surgeon to discuss bilateral TE and see what his thoughts are as far as which surgery would achieve the best outcome. Saw breast oncologist last week and discussed Neritinib Clinical Trial so will start trial in the spring after I am completely done with reconstruction. Still seems like I have a long road ahead of me, but I will eventually get there.
kakaCathFreeSpirit, are you doing the double blind study? If I knew for sure I would be getting Neratinib and not a placebo, I would have chosen to go ahead with trial and do reconstruction later. I hope I am making the right decision.
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I checked into the Neritinib Clinical Trial but even though I'm a stage IIB I'm ineligible. They change the protocol to node positive only. Strange considering someone who is a stage IIA with node involvement can be part of the trial but stage IIB no nodes, with a higher risk of recurrence can't be included. So no diarrhea for me.
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There are two big studies looking at 6 months vs. 12 months of herceptin as lago mentioned - here are the two links if anyone is interested - PHARE and PERSEPHONE0
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lago, that doesn't make sense at all. Dr. Abramson told me they had changed the trial from no nodes to node positive only and she said if I wait very long they could change it again for persons with 3 or greater positive lymph nodes or she said they may even close the trial all together.
Some exciting things happening at Mayo Clinic. They are testing two vaccines and one is for Her2 positive breast cancer. This article was in our newspaper this morning.
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About the neratinib trial changing to only node positive--if you think about it, it really isn't that strange. With node negative HER2+ cancer, they are finding that the recurrence rates are so small with herceptin, that adding a 2nd chemo isn't really going to affect those numbers much. Look at it this way. Say out of 100 women with stage 1, neg nodes, there is a 6% chance of recurrence (which now they are saying is even lower,especially 1a and 1b). So only 6 women who got herceptin will recur. 94 of the 100 of them would be taking the neratinib for nothing--they weren't going to recur anyways. So you would have to enroll sooooo many more women to start getting activity (aka recurrences) to really be able to measure and show a signifcant a benefit. They really need to be able to measure more activity in order to be sure the results are "statistically significant." Just like 9 out of 10 is less "statistically significant" than 90 out of 100 even though both are 90% and 900 out of 1000 is even better. Statistics need greater numbers to ensure accuracy and show that they are not just from "chance." I'm not sure of all the technical terms, but it really makes sense if you think of it this way. Greater chance of recurrence means more options to measure recurrences (or not--hopefully!)
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Weety I'm not stage I though I'm stage IIB. If I had just one node with the size of my tumor I would have been a IIIA. I agree it makes sense for stage I node negative but stage IIB. Remember Herceptin hasn't been around that long. HER2+ does spread even in node negative women. Granted I don't know all the details but it might make sense. Also I don't think there are a lot of women with tumors as big as mine and node negative so I just fell into a weird spot.0
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Neratinib is a chemotherapy drug, oral form, up to 1 yrs after Herceptin you can volentry apply for the trial. It states on my consent form that the 3rd purpose of the trial is : to learn whether neratinib will affect the risk of breast cancer recurrence in the brain. That was the one that got me the most, and scared me an awful lot, maybe that was the plan to scare us all silly, again Im only guessing, but that says to me that there must be stats somewhere to say there is a slight increase in that area of recurrence after Herceptin with node positive girls, and like weety mentioned they must be very low, so yes I am having doubts about my decision with taking it on, based on my quality of life right now, Im still on the max dose of 240mg daily, tabs x6. I guess this is related to another forum topic, but it does kind-a tie in together.0
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I was just dx HER2+ BC and am recovering from surgery, awaiting appointment with oncologist. The posts on this forum have helped me so much. Most of the information I found in studies wasn't too encouraging as the data was old (early 2000's). Loved reading your posts/stories and hanging on to the hope we all have. Thank you all for sharing.
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KaKaCathFreeSpirit I don't think us HER2+ gals are more prone to brain mets. It's just that Herceptin does a good job of keeping it out of the other areas in our body that the only place it can go if it does metastasize is the brain… This is because Herceptin doesn't cross the blood/brain barrier.
Does that make sense?
So if t hey can find a drug that crosses the blood/brain barrier for us HER2+ then they might prevent brain mets .
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Tykerb is that drug.
Herceptin and Tykerb for me. NED from MDA last Thursday! Will stay on those two until "they stop working" according to the oncologist. Two years and ten months with Inflammatory breast cancer Stage IV and am NED!0 -
Yay Scuttlers. Keep it going!
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Wow, Scuttlers--thanks for the story of HOPE! Congrats and hope NED stays with you for many more years to come.
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Scutters - Congrats on NED!!!!!!0
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scutters, that is so amazing!!!!!!! also, my oncologist did say that hercpetin will likely be given for a shorter period of time. this friday will be my last, (of 18 ) treatments. she said there were 2 study groups with giving herceptin for 1 year versus 2 years. she said the verdict is still out as to weather or not 2 is more beneficial and then said that in actual fact, herceptin will most likely be given for an even shorter period.
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My onc has mentioned to me that if the San Antonio conference releases information that says research is supporting that 6 months of Herceptin is just as effective as 12 months, I will finish Herceptin in December rather than February. My onc is expecting that research to be released in December. I'm secretly hoping it is not. I want to finish the one year of Herceptin as planned.
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I have been on Herceptin since February, 2009. Did have progression on it, added other chemo cocktails and eventually it all worked. I have been told that I will continue the Herceptin indefinitely until it stops working or until MUGA scan is bad. Same withe the Tykerb. MDA oscologist told me last week that we would "consider" changing current treatments at five years of NED.
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Hi
You've had lots of traffic on this question, but I just wanted you to know there's yet ANOTHER woman who's made it to 10years. We caught mine very early, neither BRAC gene, although three of my seven sisters have had the same, all premenopausal, all at age 45-46! My older sister is on her 12th year free and clear, but a sister who is 10 years younger than I just had a double mastectomy on Tuesday...
Sorry Ging! I opted for lumpectomy, radiation, and could only take tamoxifen for 6 months because I was gaining 10lbs/month! But clear now since Feb 2001. Not only is there a lot of hope, but there's a lot of life out there for you to live. Enjoy!
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I sit in the infusion room with four women who have done Herceptin 6+ years! One of them has been receiving Herceptin for almost 10 years! She's NED after a liver surgery this year. This is the first time in 10 years that she's been NED. I'm so thrilled for her. Sweetest lady in the world.
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Inspirations, strength and determination, we all need some at various stages from those whom have been there done that before us
Thankyou 0
