HER2 Positive-anyone 10 years out?
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Good luck Kimbers!
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More STL people!! Hey ladies! I had my treatments at Siteman Cancer Center, just finished Herceptin on Oct 2, 2009. I just wanted to say "Hi!" to some hometown folks ;-) Hope you're both doing well.
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Yeah, Kimbers, I think the onc I was talking about mentioned that trial you are in as a good direction for research to be going in!
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I'm sorry, I didn't read through every post in here, but want you to know that my sister will be 4 years out in April (she was triple positive, where I was triple negative, and she was diagnosed almost exactly a year to the day after I was). So, it is certainly not ten, but she has not had a recurrance (knock wood) and is doing great.
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Nordy, that's good to hear! I started my Herceptin/Taxol treatments last week and the nurse administering it said people getting this combination rarely experience re-occurrences. I smiled and said "Thank God!" ( Not for the cancer. Cancer is a Bummer and it Sucks!! I thank Him that I'm already healed and for the strength to endure this process) My oncologist nurse laughs everytime she calls me with results because my response is either "Thank God or Praise God!" The last time she stated, "your prayers are really working!" Therefore, I am praying for everyone on this site to receive extraordinarily good results from tests and treatments (NED), no re-occurrences and a long, happy and fulfilled life! God Bless!
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Hello everyone,
I am so happy there is a site like this. I, too, had HER2+ breast cancer with one lymph node positive. I just finished my treatment on Jan. 6, 2010. I had two surgeries, 6 sessions of chemo, 6 weeks of radiation, one year of Herceptin, and now am on 5 years of Arimidex. My oncologist said that there is still a 35% chance of this cancer returning. I don't like those odds.
I would LOVE to hear from other survivors of this type breast cancer. If there is anyone out there who has survived this aggressive cancer past five years without its recurrence, please let us know. The best thing for us is to hear from others who have been through it and survived. Am I right?
I want to use my experience to help others as well. Good luck everyone.
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Thanks for you prayers, CMT. You're an angel. I pray for you, too.
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Anna2 - I am really wondering why your doctor told you 35%. I really don't think that is correct with you having had all the treatments including chemo, rads, and the Armidex. I am hoping someone else will chime in with their thoughts.
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Yes Blondie my thoughts exactly re: 35% chance of reoccurrence. But hard to say without knowing all the details of the pathology. I was told less - much less. With MX on right breast it's 1%-3%... other numbers I was told include less than 10% chance overall (but that number was prior to deciding on the MX so need to re-discuss with my Onc). For the other breast (which is healthy) the chances are something like less then .5% but it does increase year by year.
Lilah
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Lilah...similar stats! I was diagnosed in 2005...still NED
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Good to hear from YOU Maryanne
And BRAVO -- you're at the 5 year mark - woo hoo!Lilah
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Anna2, I will be at 7 years this coming May. I posted earlier in this thread as well.
Hope M.
Stage 3 (8 by 9 cm tumor; 4 pos. nodes, ER/PR negative; highly Her2 positive)
TX = Mastectomy, full lymph node dissection, 6 cycles TAC, 25 rads, 1 year weekly Herceptin
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Yay Hope!! That's wonderful news! Keep doing whatever you're doing
BTW my Dad is from the Spartanburg area of SC. There has been family there since the 1700's. Beautiful area.
Have any of you had your onc's say that the recurrence with her2+ tends to drop off after 1-3 yrs. (or whatever amount of years it is)? I just wondered if that was true. My onc nodded when I mentioned this but he didn't offer any studies. Is the thinking that herceptin causes this drop off, or is it inherent with her2+ and does not matter if one has herceptin, or not?
Thanks,
tuckertwo -Dianne
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Dianne -- I think I read somewhere that it's a rule of thumb for cancer in general that if you make it NED for 5 years, you are far less likely to see a recurrence.
Lilah
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Lilah,
Good rule of thumb. I only have 4 1/2 more years to stress!
ARRGGHHH!!!Without paging thru all of the pages here, I thought someone posted something on this thread about her2+ 'falling off' in the time frame I mentioned. Just thought I'd ask!
tuckertwo
Dianne
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Ah. Here's the comment I was searching for. It's on p. 1 of this thread.
'Sorry, the chance of recurrence is also tied to your ER/PR status. For those of us ER/PR -, our HER2+ status ceases to be a factor after 3 - 4 years after surgery and we have the recurrence rate of our triple neg sisters, (close to zero at 5 years, basically considered "cured" at 8 years). For ER/PR + ladies, your recurrence rate is the same as any ER/PR+, HER2- patient after the 3 -4 years.'
Seems like 8 years rather than 5 is the norm?
Since I'm weakly ER+, I'm not sure where this puts me. I tried Arimidex and Tamoxifen (after checking to see that I was a normal metabolizer) and they both made me quite nauseated, even several weeks after beginning, so I quit.
Has anyone also experienced this with the AI's or Tamoxifen? I hope I'm not the only one!!
tuckertwo
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Tucker Two I have the same stats weakly Er positive at 16 percent (what was yours), I had arimidex could not do it, so my Doctor put me on Zoladex shots and states there are studies that put zoladadex/Lupron at the same benefit as Tamox.
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I know, Blondie, after all I have been through, I thought it would be a much lower statistic, but this is what he said. He also said that if I stayed at a healthy weight, that would also help.
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Tuckertwo -- Sorry I didn't get it the first time
I see now what you are asking... close to zero at 5 years works for me By which time I'll start looking forward to cured at 8. I thought you were never really cured though... technically. That said, I try not to dwell on rampant cells and instead try to believe I am cured now. Is that something like a mental sleight of hand? I call it cautious optimism.Lilah
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Lilah,
Thanks for your post. It gives me encouragement. I can beat this.
Anna2
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Anna2 ~~ My onc told me the same thing ... about a 35% chance of recurrence. You can see my diagnosis and treatment below. I don't know for sure that you are stage III like me (?) but basically he said, @ stage III with grade 2-3 HER2+ cancer, the stats BEFORE Herceptin were about 70% -- but now that we have Herceptin, those odds are cut in half. I like to believe what others here have told me ... the odds for ME are either 0% or 100%. And I'm focusing on the 0% recurrence. You CAN beat this.
Hugs,
Gayle
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Gabrielle
I was diagnosed in 2004, I am also Her/2 3+. At that time Herceptin wasn't available to all, one had to be stage IV. I had to go in a trial to get Herceptin. So were you stage IV when you were getting the Herceptin or also in a trial?
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HelloSistahs:
I declined taking hormone blockers as I was only 2% ER pos. It seemed that the risks out weigh the benefit in my case. One onc wanted me to and 2 others said no I choose the no. (hope I am right!!
I have also heard that the first three years are critical for HER+++. I pray that a cure is found soon. My nerves are shot. I have a hard time sleeping and stilling my mind even though I meditate. Maybe a more intense work out is in order. I am still a little over weight. I know that it would lessen my chances for recurrence. OH what a world.. I have a full pet scam in three months. A colonoscopy end endoscopy to look forward to in march. I am so nervous about it. No more bad news. It seems if I would of had any cancer the chemo or maybe my first pet or cat scan might of picked it up or knocked it out. But nooooooooooo. Thanks for the fear vent.
Peace
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Anna -- I have to believe we are doing the best and everything we can. Hang in there. You absolutely can beat this.
Bold -- love your picture! Is that you post-chemo? Your hair is so pretty! (You give me hope -- mine is dark and about a half inch long and not so full yet as I only finished chemo on Nov 9).
I have my waves of worry so I DO understand. But then I shake them off because what does worry do except ruin your day? I am not saying be reckless at all... I'm just saying: you do everything you can and then put your faith in that (because it's all we have). Yeah I'm trying to lose weight too... and I suppose for the same reason (but let's face it -- it's been a lifelong issue -- always about 20 pounds overweight). I did lose some during chemo but it's climbing back lol... taste buds have returned!
There is a trial of a new drug called Neratinib if you want to read about it. It's for the year following Herceptin... they are looking to see if it further reduces chances of recurrence (it's a pill and yes it has SEs). I'm not doing it but might talk about it with my Onc. It has SEs... and not sure I am prepared for more. Anyway if you are interested you can search the word Neratinib here and on the web.
Lilah
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Hi Bold,
Your hair looks cute. I'm still getting used to my short hair.
I know what you mean about nerves being shot. I'm a mess. Can't sit still, can't seem to make my mind focus on anything except the tiresome chant I do all day....'cancer cancer cancer will it come back will I die....'don't know why I can't focus on the positive but it is hard for me to find any, especially after aneurysm surgery in 2006. I have trouble sleeping too. I cannot fall asleep until the wee hours and look like an owl. I hope this state of mind gets better. I cannot seem to get on top of this. Part of it is I'm stuck in a really remote area with no support except husband, and you know how they usually listen.
What is going on with you and the colonscopy, etc? You say the PET scan didn't pick it up? Did they find something suspicious? I'm confused because I assumed if one didn't have positive nodes, it had not gone anywhere else? I see you are neg nodes.
I am about 4-6% benefit if I took an AI or Tamoxifen. But since I had chemo, my kidney function dropped to around 50 more or less so I think that's what made me nauseated.
mmm5....had not heard much about zolodex. What is it? Do you have se's?
tuckertwo
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I don't mean to imply that having positive nodes is an indicator of anything. There are women who are negative nodes who have had recurrence and those with positive nodes who have not. No rhyme or reason.
Back to Bold!
tuckertwo
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Lilah,
Well it's just a number game, isn't it? I would surely like to have some cautious optimism! Do they have injections of that anywhere
?? How do you get your mind to believe that maybe you'll be ok? tuckertwo
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mm5,
I think my answer got lost in the replies, but my doc said I was 4 - 6% ER+ which is weak. Don't know why I could not take the AI or Tamoxifen, just made me sick. So my benefit would be 4-6%. Woohoo.
Dianne - tuckertwo
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At my last onco visit I was talking to him about a possible ooph in the future. Of course, Im concerned about recurrence. As we were talking, he made reference to the Her2 "danger zone". I of course...went WHAT danger zone?!!!!
And he then said the first 2-3 yrs from diagnosis... are THE most critical, and if recurrence was to happen, it would be seen then. He also said, after 3 yrs the recurrence risk drops dramatically.
It wasn't something I was wondering at the time....but Im glad it was brought up. Im 2.5 yrs from diagnosis and doing good.
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My oncologist told me that since I am no longer having periods since chemo last year (I was premeno before chemo. post meno now, 1 year later) that I did not need to block my estrogen and that my higher risk of recurrence would be that I was triple Her2+++ and grade 3 (not because of the er+/pr+). He cites the "Zebra study" which you can find HERE. There are lots of other articles on google about this. And yes, he said most her2 recurrences happen in the first 2 years. I am already missing one ovary removed 15 years ago.
The Zebra study shows that women who had chemo induced ammennorhea have the same recurrence rate reduction and survival stats as women who take Tamoxifen. (And with out the nasty side effects I might add!) My oncologist alos admits that it is not currently the "standard of care" in this country (USA) but it is in other countries... he tells women about this so they can make their own informed decisions for their treatment.
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