When do most recurrences for HER2 happen
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all I keep hoping that the way Herceptin attacks those little receptors is the key to cancer. Does anyone know if Dr. Slamon is still actively involved in research. (moment of silence for BC survivors and others that went through this trial) libraylil0
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libraylil
Good choice. I have been in and out of Onc so much that I feel sometimes a breath of fresh air and sunshine are much better. Tumor markers are exactly the Dr.s choice but maybe one a year ask him to run the blood test. Its really inexpensive, most insurance will pay these and yes they can cause nervousness but I found when the markers were normal I jumped for joy! I also found out that sometimes our immune systems are cranky at times and can cause higher markers. Stay healthy!
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Suemed asked me a question in February about what type of follow up my oncologist does on me.
Sorry I haven't answered; I was on a cruise and just returned.
After three years out from chemo, my doctor did blood work (WBC, Complete metabolic panel, and tumor markers) every three months. A CT/PET scan is was done every six months (had been every three months until the three year mark).
As my four year checkup since the end of chemo (three years since the end of herceptin) was NED, I am now on a six month schedule for the bloodwork and CT/PET scan.
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stumbled on this , has anyone read this?
sassa- you are lucky your Onc. gave you pet scans, mine wouldn't
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Sue - From what I understand HER2 is a more aggressive type of tumor that is why they are also most often grade 3. Herceptin changes the risk of recurrence. Some of the studies with higher reported risk of recurrence were done before herceptin was approved for early breast cancer. I think now even women with smaller HER2+ tumors get herceptin, don't they?0
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Ladies,
From what I understand there is no actual date that everyone agrees upon as to when you can start counting. My onc looked at me and said well, we're working on 4 years now and I said, from when? His response was from date of dx. I later remarked to a life insurance salesman that he didn't want to sell me any insurance. Of course his response was of course he would until I told him my BC situation. He asked when I was diagnosed and said that that was the date they used at the company to offer life insurance to a BC survivor (5 years).
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I asked my Onologist this past week about this and he said that he used the date of diag. as the date.
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Thanks, I was wondering what the date was!
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7 years and I am still here! Did Hercept. weekly X 52 after DD AC/T as it had just been approved for "early stage" her2+ bc the month I finished the Taxol....
I have "heard" that those who are ER/PR+ will have risk go up somewhat after they go off the A.I.s.
Not going to worry about what I cannot change~
Hugs and warm wishes to all,
Marcia
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I was tripple positive and 4 years out when I met with my onc in Jan. I've been on Arimidex for 3 1/2 years and of course was told that it would be 5 but I got to thinking. If there was a reason to take Arimidex (lowering of Estrogen levels) now, today, why would that go away after 5 years. I asked my onc about what happens after Arimidex? He looked at me and said, "If it's working now, what makes you think it will not work after 5 years"? He said the data wasn't in but by the time I finish my 5 years it would probably be his recomendation that I continue taking it. I had heard some rumblings like that but sure hated to hear him say it.
edited to add: arimidex and I have never made friends
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iowasue,
I think the research article you stumbled on is one that has been around for a while (I think the date on yours was 2009) I believe it is the study that found that almost 25% of HER2+ STAGE 1 with no node involvement had recurrences. I believe this was one of the pivotal studies that made herceptin start being offered to even us stage 1 gals--the recurrence rate (up to 25%) was just too high without the chemo and herceptin.
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Herceptin is used on all her2+ BC now as the norm. PET scans are usaully every 6 months for the first 2 years according to DX. I was later stage and went to 1 X yearly at 3 years. Now at 6 years, woo hoo, It depends on the markers and the way I have been feeling. I never showed any signs of cancer in my blood at all with first DX, so it can be tricky. I also have 2 auto-immune disease and still no PET unless something is amiss. Right now I have been having some spine pain and am in to the Onc again the 11th of April, probably will order PET, but remember to show on PET the tumor must be the size of a pea. Its all in Gods hands ladies, I did however just read an article on MD Anderson web that Her2+ after 5 years out that the recurance rate begins rate begins to slowly climb again, but so is our ages and that will happen when we get a we bit older. I met a woman who has been on Herceptin 8 years! Every time they take her off her cancer returns. I developed a small heart murmur with Herceptin but nothing too much to worry about, hey I am here and alive and NED!
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My oncologist will not do PET or CT scans for early stage no node BC so I guess I have to trust that Chemo/herceptin did its job...
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I got scans before surgery orded by my BS. My onc told me she doesn't do scans unless there is a spefic reason. She redid my liver scan because they did see something but it appears to be just cysts. She will another liver in a year. Thats it.
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I don't get any scans either (stage 1; no nodes) Sometimes I look at it as a blessing since I don't have to worry about it, and other times I worry about not having to worry about it!!! LOL! My first onc I had (she just retired) did the tumor markers every 3 months, but my new onc does not do them. He is a newer onc and just did his residency at UCLA under Dr.Slamon's team, and when I questioned him, he said that "even Dr.Slamon doesn't do these tests for early stage bc." He did add, though, that if I really, really, really wanted them, he didn't have a problem running them "once in a while." I haven't decided if I'm going to ask for one when I see him in April or not. My last one was about 6 months ago. What do you all think?
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Weety from what I have read the scans won't pick up anything until a tumor is a certain size anyway. Finding the tumor earlier once it has metastasized doesn't increase survival either. Furthermore they do these scans and then find something that you might have had all your life but isn't giving your trouble as in my case now with my liver. Now it appears I will be getting a liver scan yearly for a while till they are confident nothing is changing.
Who needs the extra radiation and cost anyway. I'm not worried. If I feel there is something wrong then I will want one but until that happens IMO I assume that cancer is not growing in my body until someone can prove otherwise.
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02bhealthy~ I only had CT and scans because of "issues". One was a kidney birth defect, one was a possible lung clot, one for reconstruction (looking for blood vessels) and then 2 bone scans because of neck and hip issues. My oncologist doesn't do them unless there is an issue.
Lago~ I was told the same thing about increased survival but I do not agree with it. I hope your liver stays the same.
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Hey girls!
The dx date is not the survival date, it goes by the surgery date, weather it is mast or lump. I only know this because my daughter is in pathology and that is how they work it out. If you truly look at it. if we went by dx date it could go back 3 years if we didn't know we had it, but surgery date determines the date the cancer was absolved or excised from our bodies. Thats the day they claim to have cured us! Right, we all know about the other goodies called chemo and rads. So pull up these surgery dates.
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I too was told the date of surgery as well.
V
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OK, date of surgery then!!
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My oncologist goes by date of Dx but he also added that if you add 60 oncologist in a room you will get different answers- Date of Dx, date of surgery, date of last treatment (meaning the last herceptin).
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from what I understand for IBC & SSI disability they go by the dx date on determining back pay approval. Just what I heard, don't know it it's the same for other cancers or not.
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My onc said date of surgery, but he also said that is differ from whom you talk with.
He said the highest risk is 12-24 months after surgery.
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My onc nurse also said 2 years is a high risk time.
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I'm reading this thread with interest: I finished my herceptin after chemo and rads, in december 2010. I am considering joining the study of the oral form of herceptin. I've wondered how much longer the oral form will protect you against a recurrence--my guess is they don't know, that's why they are studying it. Is that true?
I may also post a separate question about this trial since I'd love to know how bad the side effects really are. Thanks!
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Is the oral herceptin given AFTER the year of regular herceptin? I'm just surprised it is not just given in place of the regular herceptin. Do they put you on it for another year?
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I've never heard of an oral Herceptin. I am on the trial drug Neratinib. It is oral and for HER2+ patients. It's suppose to be the next great herceptin type drug. Could this be the one you are talking about? If so, the biggest side effect I have had is diarrhea, and they tell you right off the bat it's the biggest side effect. It can be controlled by diet. I've been on it since December. The trial for me is a year, then they monitor you for 5 years. They do test you every 3 months. Like Herceptin could give you congestive heart failure, Neratinib can give you liver damage. So that's why the testing. You know, if the medicine doesn't kill me it'll cure me, sorta speak. Will never be cured with IBC, but will hopefully prolong time between a recurrence. That's the plan anyway. Hope this helps you.
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Thank you ladies, yes Neratinib is the drug I'm thinking of (I call it "oral Herceptin" but I know that's deceiving since its not technically Herceptin). Yes, you have to have had Herceptin for one year before being eligible for the trial, then you have up to a year before joining the trial.
Any good questions to ask the doc about the trial when I go in mid April? It seems pretty cut and dry and I'm considering joining the trial despite risks to the heart and liver. I was stage IIIc with ER+/PR+/HER2 neu + breast cancer in my left breast at diagnosis in Oct. 2009. Many thanks
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Hi geminihalf - I finished a year in the Neratinib trial in January. I finished Herceptin in April 2009 and began the trial in January 2010. I read about it here and told my NP that I wanted in! She called me as I was driving home and told me how excited she was because my onc was going to be an administrator.
I think I got the placebo
since I didn't get the diarrhea which is the #1 side effect. But I'm still glad I participated. Can't think of any questions for your doc - they will monitor your heart every 3 months with a MUGA and ECG, and check liver enzymes and other blood work.
Good luck! Sue
edited to add: Thanks for the info Sassa. I've never heard of an onc ordering PET/CT scans that frequently. I had one before and one when I finished Herceptin, and that seems to be more than many early stage node negative women have. Hope the cruise was WONDERFUL!
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Hello Her2 positive gals...
I am 6 years from being free of BC - from the surgery date, that is, and I'm still 6 feet up!
Diagnosed at 37 by a lump that I found and became suspicious of, no family history, and BRCA 1 and 2 negative. Had a right MX, chemo of AC and T, 52 weeks of Herceptin, no Rads. My BC was grade 3, micromet in the sentinel node only, minimal LVI, the BC was necrotic (gross) and cribriform (not sure what that is but it sounds gross too). ER was 90%, PR was 75% and the Her2 test was as positive as they get. Also, took 5 years of daily Tamoxifen, never had a side effect that I can contribute to it, did not go into any form of menopause, and after the 5 years of Tam, had a BSO at 43. My Onc. does have tumor markers drawn every 4-6 months when I see her (they are normal), I have a MUGA scan once a year (always fine), and had 2 bone scans (after c/o achy bones twice) - turns out the achiness was just muscle strain. Never had a CT or Pet Scan.
So do I feel "cured" ? No, but I sure feel lucky. These 6 years have been like I have won a lottery in the game of life. I just take one day at a time and try my best not to take any moment for granted. At this point, I take no meds other than a daily vitamin, and exercise regularly to maintain positive cardiac health. At this point, I was told by my Onc. and PCP to take care of my heart and bones and not worry too much about the CA returning - so that's what I'm doing.
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