What are the milestones for HER2 Gals?

Thanks!! That was excellent. It makes me think my stats are pretty good. I did TCH and still doing herceptin.

I don't know anything about Papillary Carcinoma and I mostly focus on the risks for HER2+. Risk also depends a lot on the size of the invasive tumor if there was one and on whether any nodes were involved.

HER2-, hormone positive often doesn't need chemo. It is much less likely to recur. I gave the numbers from the MD Anderson study for HER2-, hormone positive node negative IDC tumors less than 1 cm without chemo in my response to you earlier in this thread. DFS was 95% - i.e. probably about as good as I get for going through chemo and Herceptin with a 1 cm node negative tumor.

You will probably find people more knowledgeable about HER2- hormone+ on the part of the forum for that.

I have a question. It might be hard for me to articulate clearly. It is about recurrances. And thank you in advance for help and answers.

Ok so let's say someone starts chemo and herceptin in January 2010 (for sake of this example).  They finish chemo in April. They continue on Herceptin only until January 2011.  Would their 3 year highest-risk window be Jan 2010-2011-2012, concluding Dec of 2012?  (Obviously I know that nothing final and formal concludes at that date, but I am just trying to get an understanding of what the window is.)

Now, someone earlier on this thread said she was getting 2 years of Herceptin. Would that extend out her 3 year recurrance window another year (through 2013 in the example above), or would she be extra-protected during the first 2 of the 3 year window? I mean, if that is so, why couldn't we stay on herceptin for the whole 3 years?

I was considering the neratinib trial which is a year after herceptin concludes - and my reason was that it would fill another year of the 3 year window with me having a potentially preventative medicine.  The research onc that interviewed me seemed to say that the three years of highest risk for recurrance were AFTER treatment stopped, at which point it would be most likely the cancer might reoccur once your body was 'on its own.' She said that if that was my main reason, I was only prolonging the time before I had to accept being at the end of treatment and seeing what happened.  With that in mind, I thoughtfully concluded that the trial was not right for me.

But this is just very confusing. 

Does my question make sense?  It would seem also that IF the three years is the most highest risk time for recurrance, that it would be the time to be most diligent about maintaining any lifestyle changes (re alcohol, weight management, supplements, diet etc). Would that seem true?

Thanks again to anyone who can help me make sense of this.

Amy

Barbe, sorry, I didn't realize that there is a triple negative forum and a HER2+ forum but no hormone positive HER2- one - I guess that is because it is the main stream diagnosis (most common and least agressive). You could try the IDC forum since they lump your cancer in with that or the hormone therapy forum.

Amy, the trials usually measure from the start of therapy. A treatment might delay recurrence if it is interfering with the ability of the cancer to grow and reproduce but not killing it. But if it is killing it off well, then the benefit should be long term. I think that Herceptin treatment is more like the second one - in combination with chemo, it usually kills the cancer cells.

There is no evidence that extending the Herceptin provides increased protection for non-metastatic cancer. One theory says that Herceptin helps kill off most HER2+ cells but that in some cases there are ones that are resistant to it. At the end of the year, it has probably gotten all the cells that it is going to. If you have resistant cells another year won't help. In Europe they often only do Herceptin for 18 weeks and even that seems to get good results.

An alternate theory is that Herceptin sometimes holds some HER2+ cells from multiplying but that it doesn't kill them off. If that was the case, continuing Herceptin might delay recurrence.

There is a large study comparing three arms: control without Herceptine versus one and two years of Herceptin, HERA. It started in 2001. They have only relaeased data comparing control and 1 year of Herceptin arms showing the advantage of using Herceptin over not having it. They haven't released data on the 2 year arm. I think that if they had found improved DFS or survival in the 2 year arm, they would have released that data. Not having published anything probably means that they have not yet found any significant difference between 1 and 2 years of Herceptin. Therefore, I think that the first theory is more applicable and we wouldn't benefit from an extra year.

For metastic cancer, they sometimes do continue Herceptin long term. My simplistic understanding is that once cancer is metastatic there can be cells hiding in places where the drugs can't get to it as well so they often continue therapy as long as it is going well. Herceptin is usually well tolerated, but there can be side effects and occasionally heart damage though it appears that that heals when Herceptin is stopped. (And it is also a very expensive drug still.) They aren't going to do 2 years of Herceptin for stage I, II and III if there is no demonstrated advantage because there is the potential of harm from side effects and because of the expense.

One more thing to remember for those of us gals that don't fully respond to the Herceptin.  If you should have a recurrence, you will get herceptin again, but you should also request Tykerb.  Tykerb works like neratinib (I was in the neratinib trial) and herceptin, but it is a dual her1 and her2 blocker.  It crosses the barrier to the brain.  It is an oral medicine that is usually used when the patient doesn't respond fully to herceptin.

I originally did TCH, but apparently my cancer didn't go away completely and started to grow back.  I am now almost done with A/C TH with Tykerb.  My doctor told me that Her2 cancer doesn't like Taxol.  Fortunately, I DO like Taxol because it is a much easier regimen to tolerate. 

I wish you all continued health.

Hugs,

Anne

AnneMarie, if you go back to the graph posted on page 1 of this thread above, it seems that "years from surgery" are used as a marker, not years from starting chemo etc. This makes sense because everyone with every type of BC will receive surgery, but after this it varies. Not everyone will have adjuvant treatment - the low risk BC patients will have nothing further at all.

Hugs,

Lucy 

Hi Anne Marie,

 I had 4 cycles of Adriamycin and Cyclophosphamide and 4 cycles of Taxotere in conjunction with Herceptin.  I will have Herceptin for a total of 18 treatments.  I was diagnosed in Nov. 2009 with Stage 3, grade 3, ER/PR negative Her2neu positive cancer with 2 nodes positive. I had a double mastectomy with lymph node removal on June 18th.   I got word 2 weeks ago that the post-op pathology report shows that there is no sign of any cancer in either breast or in my lymph nodes.  My Oncologist has told me that my prognosis is "excellent" and that the chance of recurrance is 25% in 20 years.

Hope that helps.

Annemarie -- I too am hormone negative, HER2+ and thanks for this thread.  I had two lumpectomies, then chemo (ACT and H for a year); uni-MX followed a month after completing ACT.  No cancer at all in remaining breast tissue.  Guess I will count my first three years from date of surgery (since that is a demonstrable moment of NED).  I have three more Herceptins to go! 

Thanks everyone for the really smart, helpful information.

I will have the 6 year anniversary of being NED in Oct 2010. Dx 9/04 and started treatment in10/04.  ER-, Pr-, Her2+.  30+ positive lymph nodes. Had L mast, 4 AC, 4 Cytox, Rads, 1 year hercept, and a trial Her2 vaccine. Feel like I am a miracel and am greatful for every day. 

Billiegirl - my dx is just like yours with less positive nodes, but still too many in my book. I am so glad to hear you are doing well so far out from DX.

lago - so true about the heart problems from herceptin (or combination of both adriamycin and herceptin) as my ejection fraction went down to 25% after 6 months of herceptin. With eating right and walking at least 5 miles a week on my treadmill and a few heart meds, I have built my ejection fraction back up to 45% luckily. The onc and cardiac doc decided together that I should not go back on herceptin. I finally got past that and am happy that I got 6 months of herceptin before the problem developed.

I wanted to add my experience, as I know it is not usual, but I think it shows you need to be vigil no matter how far out you are. 

I was diagnosed 3/21/05. Had mast on 3/24 and began chemo April14.  age 37 er/pr - Her2+++, 4.5 cm and 2+ nodes. Did ac, taxol/herceptin, then herceptin for a year, finishing in May of 2006.  I had my five year check up with my onc, who let me go and said just have yearly check ups with family dr. He told me my risk was as close to zero as you could get.

about a month ago, I started having severe pain in my back and pain when breathing in. I finally went to the ER, where I found out that I had a 11 cm tumor on my liver. It was  breast cancer, same kind (er/pr her2+++) 

It's hard not questioning if I could have been given doses of herceptin occassionally, if this could have been prevented. I am happy that I was NED for as long as I was. My youngest daughter was 2 when I was diagnosed, and now she is 8. I hope to be here until she is at least 18, if not longer.

I would also say try not to worry if it is 2, or 3 years or 4 years when you are "safe", You will never know. Live your life, enjoy every year, find happiness every day with your family and friends.   

Tricia

I am with you, I would like to know as well. Both my Onc's say with aggressive Her2 grade 3 you should recur in first 3 years and then fine. Certainly by year 5 all should be good. However there is Laurie's story above and I guess we just don't know. Laurie what does your ONC say about this especially since you were given such a green light at 5 year check up. I pray that Herceptin puts you right back to NED condition.