"I don't know how to interpret these results"

[SoCalGal]

That's literally what my onc just said to me on the phone. My cea dropped from 49.1 to 45.6 BUT my CA 15-3 went from 57 to 62. He wants to re-do the markers in a week, to see if there is a trend. I have had 4 rounds of carbo/gem with gemzar in between since August, plus been on the Tykerb all along.

I know markers are not the only thing and that if they are bad on Monday, he'll probably want to do another PET scan. My question is where do I go from here?

Will there be new miracles announced in San Antonio this year or do the docs already know the new options? I don't have the energy or focus to start figuring it all out, but I like to have a plan, and right now I feel like I don't have one at all.

I hate to start running for consults, nor do I know in which direction to run. All I wanted to do today was find something to wear to my party this weekend.

I HATE CANCER SO FRIGGIN' MUCH IT'S NOT SOMETHING I CAN EVEN EXPRESS.

[Jean]

Flori,
I hate it too!
I hope you had a good time at the party...and I am certain you looked
beautiful. Try to hold on and go with the next round of markets, since
you know it is not the only factor. Wait to see what those new markers
deliver. Then take the next step and Flori there will be a next step
if needed...I don't have the exact answer for you as far as what
meds would be next, but I am sure there will be a treatment plan.

I am keeping you in my prayers.

Kind Regards,
Jean

[Lani]

Have you had serum her2 levels tested/followed? Where are you being treated?

I just attended the American Association of Cancer Researchers' Advances in Breast Cancer conference in San Diego this past Thursday-Saturday and the new drugs being discussed besides Ixabepilone were those in clinical trials like 17AAG (a heat shock protein inhibitor), TGF beta inhibitors (far from availability), mTor inhibitors, the new herceptin-drug combination, and pertuzumab. Clinical trials are ongoing and since you are from LALA land there are at least two major cancer centers nearby to ask for a second opinion or to inquire about clinical trials (if you are not already being treated there): UCLA and City of Hope.


At the meeting I heard the results of the Osborne/Schiff study -- Dr. Osborne of Baylor presented the results (in mice) of combining Iressa, pertuzumab and herceptin and "curing" the mice without recurrences
even for long stretches of time after treatment--very encouraging and without even requiring the antihormonal (though he said he was not sure why, except that the cure happened so quickly in those it worked on that there didn't seem to be enough time to develop resistance by switchiing to the ER pathway)

He did say that there was one strain of BT474 of two he used to implant which did not respond quickly and was not cured, even when he added an antihormonal and thought that the strain of BT474 used by Dr. Spector in his studies of tykerb resistance unless ER pathway is blocked was a different BT474 strain altogether.

Just as there are different cancer cell lines strains, there are different her2 + cancers even within the er- and er+ groups (I see you are er-) At the meeting they seemed to think the ER+s were especially complicated because, althought there are more possible treatments, there are more possible pathways through which to develop resistance,.

There are drugs which are already available for other diseases like PPAR inhibitors (used for diabetes) and bortezomid(used for multiple myeloma)
so things are progressing along...

It can never be fast enough!

Hope some of this helped!

[chrisy]

Flori, boy can we all share hating this disease, and the constant chasing of numbers, scans, results, hoping to find reassurance we are moving in the right direction.

Inconsistent results, as you just got, are not necessarily bad - maybe they are reflecting chaotic death of cancer cells, which can sometimes cause markers to rise. Hopefully the next labs will provide more clarity.

Lani, thanks for the update. The Baylor studies are my all time favorite - so hopeful.

[SoCalGal]

Thanks, Lani, I'm breathing again. At least I have something to take to my onc next Monday. Even though I am a woman of action, BUT, when I get bad cancer news, lately I just stop functioning...I am being treated by an old school onc - the same guy I've seen for the last 11 years. I like him, he's smart, but I don't think he's cutting edge but he's always been up to date. He's supportive and willing to do whatever I ask, suggest, and overall I have confidence in him. Yes, I'm er/pr negative. Her2+++.

I have had many 2nd opinions along the way, and they always concur with his treatment. Lately I have been thinking about getting other opinions again. I see an MD (also a phD in pharmacology, another "old guy" but looks amazing) who's specialty is supporting the immune system of women with br ca (I see him for immune specific acupuncture and also all the vitamins, supplements and non-gluten, dairy, sugar is from him, too. He's 65, at UCLA's integrative oncology dept). He thinks I need to give the chemo a true chance - 3 months. I just don't think this crap is working (carbo-gem) because I think my markers would go down if it was. I keep thinking (obsessing) I should go back on Herceptin. "I" never failed on that one and it seemed to keep me ned for several years. The question is what to add. And I just want DNA based chemo - this poison is so hard to take and co-exist with. Over time it just chips away at your health. My onc says that by all evidence, tykerb should be just as good, actually better than herceptin. I don't know what I am going to do. I want my mommy.
Thanks for the facts. You really helped me today through a rough day.

[dhealey]

Flori,
I hate this friggin disease also!!!! I have become so paranoid, everytime I have a new symptom I get sent for another test and have to worry all over again about recurrance. We shouldn't be the ones having to worry about our treatments, the doctors should. Unfortunately if we aren't proactive in our healing process something might get missed. Hopefully they will have things fiqured out or get another opinion. In the mean time buy yourself something sexy for the party!

[Lani]

As one attacks her2 from the outside and one from the inside of the cell.

Resistance develops via ER pathways(they think)--something you don't have to worry about--and by upregulation of her3 according to the current thinking from this conference and my recent reading

In a perfect world, you could get your original tumor's her family studied

ie, her2,3,4 and EGFR and use that to convince yourself whether to try a trial of pertuzumab (if you were her3 positive) or tykerb plus herceptin (if you were not) THis is just theoretical, from someone without expertise, I will have you know.(that is not to say that the her 3 couldn't have popped up as resistance to tykerb/herceptin occured in your mets)

The report from this conference is that in the clinical trials so far with tykerb plus herceptin they have not heard of any reports of additional toxicity from adding the two together. There does not seem to be a marker for VEGF EFFICACY that they have discovered so far, but that is something else they could add at some point.

It can cause bleeding and hypertension and a talk at the conference showed that when you stop Avastin there can be an accelerated regrowth if blood vessels (at least in mice)

One of the most interesting speakers I have heard on new her2 specific treatment combinations for Stage IVs is Jenny Chang of Baylor (heard her speak at San Antonion last year) She unfortunately wasn't on the program at the conference this past weekend.


I will try to keep you informed of the latest and greatest as I hear about them. Hold your breath for San Antonio and ASCO and hope.

Couldn't hurt to get out into that great Southern California sunshine and get some vitamin D (don't overdo the tan) and mellow out!

[SoCalGal]

Mellow out - that's funny. If I could do that I wouldn't be ME:)...
Forgot to say I am going to call my Onc tomorrow and ask for the serum test. And I know the first (3) people on the Parp trial for Br Ca at Cedar's. One posts here occassionally under Swanky, and the other 2 are from my support group.

Lani, Thank you, I really appreciate all of the her2,3,4 info. It helps me so very much in thinking better.

[Joan M]

Thank you for sharing information about breast cancer research.

Has your onc considered surgery for your sternum? While surgery is generally not applicable to bone mets, it can be used to remove an isolated met to the sternum, and has been shown to result in a long-term survival benefit.

My understanding is that most oncologist tend to shy away from surgery. Also, sometimes surgery is not indicated depending on a patient's profile.

In April, I had a single pulmonary met removed from the apex of my left lung. The turmor was tested for HER2, which was positive, but before being tested for that it was inadvertently tested for EFGR, which came back very positive. So, I'm interested in studies involving EFGR, the epidermal growth factor receptor. According to an article in Cure magazine, targeted drugs such as Tarceva (erlotinib) for non-small cell lung and pancreatic cancers, and Erbitux (cetuximab) for head and neck and colorectal cancers inhibit EFGR.

Subscriptions to Cure magazine are available free to cancer patients.

I just joined a trial at Memorial Sloan Kettering -- a very easy trial for the patient -- and will agree to give a piece of my lung tumor to some some scientists there for a protocol that will study clinical resistance to anti-Her2 therapy.

We're very fortunate to have so many scientists working on a cure for breast cancer. It gives me a lot of hope.

[lilyecuadorian]

Flori we are lucky to have Lani ...Lani, thanks for the information The Baylor Osborne/Schiff study are my favorite also ....it dosent go a day with me thinking about this study - so hopeful.