New thread--how many long-lived Stage IVs are hormone receptor positive?

Lani · 03-26-2006, 12:08 PM

I would like to start another thread inquiring of those Long-Lived Stage IVs what their hormone receptor status(ER AND PR) is and, if ER positive, how long they have been/were on antihormonal therapy, and what kind

I have heard bantered around that the ER receptor pathway may be the origin of the resistance that develops to Herceptin treatment.

If this is so, would the cancer be expected to return when antihormonals are stopped--which, I suppose, they never do in Stage IVs, but perhaps some of you had to stop them because of side effects...

I hope this isn't too much of an imposition for our long-lived "legends"

I doubt Genentech nor any of the researchers at MD Anderson, Dana Farber, Mayo, etc has looked at this (it is hard to pool data between institutions without formal clinical trials) and drug companies are often slow to do their post-marketing research as it doesn't directly and quickly affect their bottomline...

Thanks to you all,
Lani

TriciaK · 03-27-2006, 02:09 PM

My story has been told before, Lani, but here it is again to add my info to your interesting thread. I have been both er and pr positive from the first time I was diagnosed in 1985. At that time I had double mastectomies and reconstruction, nothing else. In 1990 the cancer reoccurred in my T9 and T10 vertebra. I was put on tamoxifen and stayed on it for 5 years. The doctor then wrote on my last MRI report after the five years the words "healed metastatic breast cancer." I took that literally and never expected to have cancer again. Then, as I have said before, in June of 2004 I had a heart attack and in preparing for heart surgery, a CT scan found cancer mets in my lungs. This time it was her2, still er and pr positve. I have been on femara since, with 6 months of navelbine and herceptin, then 9 more of herceptin, until my EF dropped to 30% and I had to stop the herceptin. I am now NED, on femara only (with Zometa) and doing well. I should add that I was 56 at the time of the first DX and postmenopausel. I will watch your new thread with interest! Thank you for starting it. I hope you get a lot of response. Hugs, Tricia

Sherryg683 · 03-27-2006, 03:15 PM

Lani, is what you are saying is that is better to be ER+ or ER-, can't quite understand...sherryg683

Lani · 03-27-2006, 04:18 PM

I am not "saying" anything. I have never seen a study that included patients from a lot of different institutions pooled together that looked at the long-lived survivors on Herceptin. I doubt there is one.

The North American studies of adjuvant herceptin (2 which were merged) and the non-No. American HERA studies seemed to show the same benefit of Herceptin plus chemo (even though the chemos were EXTREMELY DIFFERENT) between her2+ patients and her2- patients--they all had about a 51% decrease in recurrence IN THE SHORT-RUN as many patients in the study were only a few years after their breast cancer diagnosis. BUT THESE WERE DONE ON PATIENTS WITH EARLY NON-METASTATIC BREAST CANCER,and their results continue to evolve...

I have started a thread to see if those who ALREADY were Stage IV (METASTATIC) AND treated with herceptin, ie, the wonderful living legends who have beaten the odds, to see if there seems to be any trend in Herceptin's effectiveness between the hormonally positive patients and the hormonally negative patients.

I have NO PRECONCEIVED IDEAS--JUST CURIOSITY!

As I said, I don't even think the heads of breast cancer at MSK, DanaFarber, MD Anderson, etc know the answer to this one--and we will have a scewed result as it will only include those who have discovered and participate in this forum and have been reading of late. It will obviously not have the participation of those who have NOT done well.

But maybe it will tell us something and maybe we can get GENENTECH INTERESTED IN FUNDING SOME biostatistics student or inhouse summer intern in completing the project.

Lani · 03-27-2006, 04:27 PM

I am not "saying" anything. I have never seen a study that included patients from a lot of different institutions pooled together that looked at the long-lived survivors on Herceptin. I doubt there is one.

The North American studies of adjuvant herceptin (2 which were merged) and the non-No. American HERA studies seemed to show the same benefit of Herceptin plus chemo (even though the chemos were EXTREMELY DIFFERENT) between her2+ patients and her2- patients--they all had about a 51% decrease in recurrence IN THE SHORT-RUN as many patients in the study were only a few years after their breast cancer diagnosis. BUT THESE WERE DONE ON PATIENTS WITH EARLY NON-METASTATIC BREAST CANCER,and their results continue to evolve...

I have started a thread to see if those who ALREADY were Stage IV (METASTATIC) AND treated with herceptin, ie, the wonderful living legends who have beaten the odds, to see if there seems to be any trend in Herceptin's effectiveness between the hormonally positive patients and the hormonally negative patients.

I have NO PRECONCEIVED IDEAS--JUST CURIOSITY!

As I said, I don't even think the heads of breast cancer at MSK, DanaFarber, MD Anderson, etc know the answer to this one--and we will have a scewed result as it will only include those who have discovered and participate in this forum and have been reading of late. It will obviously not have the participation of those who have NOT done well.

But maybe it will tell us something and maybe we can get GENENTECH INTERESTED IN FUNDING SOME biostatistics student or inhouse summer intern in completing the project.

DeeM · 03-27-2006, 05:03 PM

Hi Lana,

I think this survey is a great idea. I am stage 4 since 2002 with bone mets. I am est+Her2++ and have been on herception since Feb. 2002. I am doing great and think all the information we can gather is valuable, because this is a relative new drug. Unfortunately, the drug companies and medical center do not have a direct line to us, like on this site. So thanks and I look forward to looking over the information you gather!

Dee

sassy · 03-27-2006, 09:24 PM

Just wondering if the inquisitive minds at Genentec view this site. Can't help but think they would find interesting information here. Any idea Joe?

Sassy
________
AlluringBaby

Lani · 03-27-2006, 11:19 PM

have you been on any antihormonal (tamoxifen, arimidex, femara, etc) and are you both er+ and pr+ or are you er+ and pr-

It would also be helpful to know if you were pre- or post-menopausal when you were diagnosed(and if you had your ovaries removed or received shots to shut your ovaries down?)

Once we get 18-24 responses, I volunteer to try to get the info forwarded on to Genentech and others and see if we can get them interested in pursuing it further.

So the questions are:

(1)when first diagnosed with breast cancer
(2) when diagnosed with metastatic breast cancer(ie, was it metastatic when first diagnosed or did it metastasize years later)
3) age at diagnosis, pre vs postmenopausal, whether ER+,
whether PR+, whether received antihormonals (which), ovaries removed(?)
4) did the hormonal status of the tumor match that of the metastases (if known ie, if the mets were biopsied)
5) any other information regarding type and duration of chemo is also helpful
6) what type of maintenance therapy you are on

7) whether you were ever on antihormonals without herceptin or herceptin without antihormonals if you are ER+

8) where your mets are/have been ie, liver, bone, lung, brain

We may be trailblazing with this!!!

At the very least, it will paint a picture for others on this site regarding the
fact that her2+ breast cancer no longer carries the same "dire" prognosis cited in the literature before the advent of Herceptin and that even Stage IV her2 can be compatible with an enjoyable, functional and meaningful life!

Thanking everyone in advance for their help and participation...

Lani

Kim in CA · 03-28-2006, 08:59 AM

Hi Lani,

Great thread! Here goes. I was orig. diagnosed in 1997 at age 42. 41/2 cm breast tumor with 5 out of 36 nodes positive. I was told at the time that I was ER neg. and PR neg. I had a mastectomy followed by high dose chemo with stem cell rescue and then radiation. The chemo put me into menopause.

In 2001 I had recurrence to my liver and a review of my original pathology report showed I was Her2+. I had 8 months of Taxotere and Herceptin and then ended up getting a second opinion from a breast cancer specialist at UCSF, because scans were still showing a small spot on my liver. The doctor at UCSF said I needed to stop the chemo because of mounting side affects and referred me to a surgeon to talk about liver resection. She also indicated that even though my original path report showed I was less than 10%+ for ER, she wanted to treat me with Femara anyway. I ended up having the liver resection at the end of 2002, and it turned out there was no cancer left in my liver.

I remained on the Herceptin and Femara and then when tumor markers shot up again in 2003 we added Xeloda. I was only on the Xeloda 10 days and had to stop because my body didn't metabolize it well and it built up to high levels that literally almost killed me. I have been NED in my body ever since, with the exception of a small brain lesion(11mm) that was sucessfully treated with Gamma Knife last August.

I continue on the Herceptin and Femara and will be celebrating my 5th year as a stage IV gal this June.

I get my tumor markers tested every 3 weeks when I get my Herceptin. Last night my doctor called with the good news that my markers had dropped back down after steadily rising the last six months. They had reached 27.2 and although that is still in the normal range, the steady upward trend was really making me a nervous wreck! They are back at 21, so I can breath a little (huge actually) sigh of relief!

I don't quite know what to make of any of it, but am just thankful for each day!

Kim in CA
P.S. forgot to mention that I participated in the UW vaccine trial. I innitially showed a robust immune response, but it did not appear to last.

DeeM · 03-28-2006, 09:23 AM

Sassy,

Here is the answers to your questions.

Originally dx at 34 with DCIS in Lt breast. Had a radial masesctomy with no lump nodes involvement. No other treatment. ER+

At 43, had pre-canerous markers in rt breast so had a rt masectomy. Wanted to make sure! After surgery, had reconstructive (saline implants in both breast.)

At 44, (jan 2002)having chest pain and back pain, found a lump in my neck, all within 3 weeks. Had a bone scan, CT, and lump removed. Found bones mets in Spine, Sternum, ribs, lt humerous, lt scapula and hips. Lump ER+, Her2++. Started taxotere(12 months every 3 wks), heception, zometa and radiation to neck, sternum and mid back. I still have the herception and zometa. I am still pre-menopausal. Came back six months after I ended the taxotere. Now 49. Really considering either the shot or removal of ovaries to kick in menopause. Otherwise, I am feeling great and have had no progression.

I really like this survey..thanks a lot!

Dee