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-   -   What is measurement date for 5 yr mark? (https://her2support.org/vbulletin/showthread.php?t=62204)

thinkpositive 11-24-2014 07:03 AM

What is measurement date for 5 yr mark?
My understanding is that the risk of recurrence is highest in the first 5 years. I'm wondering when this 5 year clock starts. Is it from the date of diagnosis, last chemo, last herceptin, surgery?


Lauriesh 11-24-2014 09:00 AM

Re: What is measurement date for 5 yr mark?
I always thought it was from date of diagnosis , but I was diagnosed with liver mets at 5 years, 4 months from diagnosis, so I would think I would use end of treatment date.

The imp thing to remember is that the risk is never zero, so it is imp to get any unexplained syptoms / pains checked out, no matter how many years it has been.


'lizbeth 11-24-2014 09:37 AM

Re: What is measurement date for 5 yr mark?

The trouble with that concern is that the "5 year recurrence" information is based on older treatments typically with surgery, then adjuvant treatment.

You have neoadjuvant with Perjeta with a good response. Since the data hasn't had time to develop - you are one of the pioneers in this grouping.

The closest information on recurrence is to look at group similar to your pathology. The 5 year (I think & should check) is for the ER+ group. The ER- was more likely to recur in the first 2 years of treatment, again based on older standard of care, before Perjeta.

I personally would count from the first treatment in August.

LeahM 11-24-2014 03:20 PM

Re: What is measurement date for 5 yr mark?
My onc says from last Herceptin. I go by that.

Becky 11-24-2014 05:36 PM

Re: What is measurement date for 5 yr mark?
And mine says date of surgery. Go figure?!

'lizbeth 11-24-2014 06:13 PM

Re: What is measurement date for 5 yr mark?
I like to celebrate, so I have the date of discovery, the date of diagnosis, the date of mastectomy, my NED day after the axillary node dissection.

However, I have not been celebrating the last day of Herceptin. I must add this, along with the final date of my vaccine trial and consume chocolate accordingly.

thinkpositive 11-25-2014 06:56 AM

Re: What is measurement date for 5 yr mark?
Thanks everybody for your responses. No wonder I wasn't sure what the measurement date to use!. I asked my onc the other day and she said it was date of diagnosis. It seems that there isn't a definite date that is always used. Us HER2 folks are never completely "out of the woods" but I like Lizbeth's idea of celebrating each milestone along the way.

Take care

europa 11-25-2014 11:41 AM

Re: What is measurement date for 5 yr mark?
I was told within the first 3 years after your last Herceptin. For those that are strongly ER+, there is no range because they have seen recurrences 10-25 years later. This is what I was told.

caya 11-30-2014 06:44 PM

Re: What is measurement date for 5 yr mark?
I am hopeful that with Herceptin use for early stagers, really only within the last 8 years or so, future studies will prove that even we triple+s will have a lower risk of recurrence as well.

I remember my onc. telling me in January 2007, when I started Herceptin, that I was basically a "pioneer", that I would be in the 10 year statistics 10 years hence (now going on 8 years). More so because I am triple +, and very highly ER/PR+. Of the 6 or so triple+ gals I know who started treatment around the same time as I did, all early stagers 1-3, no one has recurred. Hip hip hooray!!

all the best

thinkpositive 12-01-2014 07:29 AM

Re: What is measurement date for 5 yr mark?

That is great news. I guess us "pioneers" really don't have stats that we can refer to. The good news is that things seem to be improving all the time.

Take care

tricia keegan 12-03-2014 04:35 PM

Re: What is measurement date for 5 yr mark?
I agree with Caya, I was diagnosed in 2005 and had Herceptin for early stage and really hoping this is the "Cure" we're all waiting for, doing great so far.

'lizbeth 12-04-2014 12:30 PM

Re: What is measurement date for 5 yr mark?
Tricia - haven't you hung out with us long enough to realize "The Cure for cancer" is more like the "Cures for cancer". I hope you'll hang out long enough for the "Better Cure" for cancer that doesn't include chemotherapy, radiation or surgery!

Caya, that is awesome news. I love that you are cancer free 8 years later, and I love that 6 triple positives early stagers are still cancer free!

tricia keegan 12-04-2014 05:01 PM

Re: What is measurement date for 5 yr mark?
Lol 'Lizbeth, I've been a member here since 2005, three years before you joined so really wasn't sure what your comments meant or if there was any meaning there at all??? I think we may have crossed wires here.

sassy 12-04-2014 07:55 PM

Re: What is measurement date for 5 yr mark?
Tricia, we'll both soon be 10 year triple positives. I think that qualifies us as trailblazers!

'lizbeth 12-04-2014 09:21 PM

Re: What is measurement date for 5 yr mark?
Well Tricia, I think wires got crossed somewhere. Not sure what you meant by joining us in the thread and throwing in the "Cure" comment. Many women have recurred on or after Herceptin, were you referring to neoadjuvant Perjeta?

I don't really think it matters when we were diagnosed or joined the board. I just was truly surprised about the statement this is the "Cure" we're all waiting for.

Do I really want the next generation of breast cancer patients to go through the same treatments as us? Heck no! I want them to receive treatments that are even better.

So this is what I meant.

tricia keegan 12-05-2014 04:16 PM

Re: What is measurement date for 5 yr mark?
Hell yes Sassy, we are the "Trailblazers " for sure!!!! :)

'Lizbeth, I was referring to the fact that Herceptin was only approved for early BC a week before many of us were dx in 2005, before that most prognosis for her2*** was one year so already to me and others here this miracle drug really comes close to THE cure and has given some of us many more years than we otherwise would not have had. It may possibly have cured us, that remains to be seen in years to come but we remain positive...( my response was primarily to Caya's comments and geared towards other early stage her2-ers)!

'lizbeth 12-05-2014 05:23 PM

Re: What is measurement date for 5 yr mark?

It makes me very uncomfortable when a senior member of the board posts comments like you just made.

I checked Genentech's website and I learned that Herceptin was approved for early stage in 2005.

Then I went to the studies that Herceptin's approval was based on.

The 4 year Overall Survival with ACT was 85.6% compared to ACTH at 93%. So yes - it is a miracle drug for 6 women out of every 100.

Four year Disease Free Survival improved from 73.7% to 85.7%. That is a nice change.

Are you referring to the prognosis for Metastatic Breast Cancer perhaps?

I'm glad that you and Sassy are "Trailblazers" and happy about Herceptin.

But can you get your machetes back out and keep cutting new trails please.

I'd love to see us get to the same numbers with a combination of Perjeta and Herceptin and no chemo, or some other less toxic options.

'lizbeth 12-05-2014 05:25 PM

Re: What is measurement date for 5 yr mark?

and this is the JCO article:

Four-Year Follow-Up of Trastuzumab Plus Adjuvant
Chemotherapy for Operable Human Epidermal Growth
Factor Receptor 2–Positive Breast Cancer: Joint Analysis of
Data From NCCTG N9831 and NSABP B-31

sassy 12-05-2014 07:08 PM

Re: What is measurement date for 5 yr mark?

I profess to being baffled by your uncomfortableness with anything Tricia said, and also with your seeming agitation and need to strike out.

Herceptin was released for early stage in 2005---just in time for Tricia and I and many other women in our same boat to be treated. Undoubtedly that treatment played a large part in our almost 10 year disease free survival. So for us---it may very well be our "cure", a point my oncologist has made to me.

Is Tricia advocating that Herceptin is the cure for everyone---certainly not. A lot of advancement has been made in the last 10 years advancing survival rates for many more. Neither Tykerb nor Perjeta were available when I was in treatment.

Are any of us hoping that toxic treatments remain the standard of care--certainly not. Targeted therapy is much desirable over the slash and burn approach of the past.

Joe and Christine developed this website:

"Through a team effort, this unique support group seeks to promote education by maximizing the utilization of available resources. We promise to assist members by supporting their concerns and providing links to news and current research".
Christine H. Druther - MSPH

Their mission was to above all support---hence the name HER2Support. The reference to "team effort" was also intentional. Joe especially made sure that all members adhered to the practice of respectful discourse. We continue to honor that legacy.

'lizbeth 12-06-2014 02:26 PM

Re: What is measurement date for 5 yr mark?

I feel that the senior board members should be accurate in the information that we share.

It is not true that early stage breast cancer patients had a one year prognosis before Herceptin. According to the studies that Herceptin was approved on 85% of women would still be alive 4 years later without Herceptin. 74% of women would have not recurred in 4 years without Herceptin. These numbers tell me that 3 of 4 women receive Herceptin without benefit compared to the standard of care at that time.

Most board members are quite familiar with my concern of advancing standard of care. I was not striking out or agitated. I was trying to be funny when I responded to Tricia. But if someone joins a thread with a confusing post, or puts out information about Her2 breast cancer that seems inaccurate - we should clarify it.

I am sure that Joe and Christine would expect you and Tricia to be respectful toward my concerns as well. This is a two way street.

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