Wanted to share my miracle Herceptin Story..

[sabpri]

I used to post all the time and then when my recurrance happened in April I went dark. My Path showed my cancer to be Triple Negative, so I didn't really bother to come here anymore, but now I need to share my story with all of you in celebration as well as possibly helping someone else!

When I was first diagnosed in August 2005, I apparently had a very unique pathology (I always have the weird things!). I had 2 HUGE tumors (6cm & 7cm), both pathologically totally different. One was Strongly ER/PR positive, Her2-, and the other was classified as Triple Negative, but with this asterick * showing that my tumor had a small sub population, less than 10%, that was strongly Her2 Positive. They decided to throw the kitchen sink at me and give me hormonals and herpcetin. I was unfortunately already Stage 4 Bone Mets at diagnosis (misdiagnosed by OB, but that is a whole other story). We never did a biopsy on the mets, so we didn't know if they were Her+ or Triple Negative or Hormone+. I was NED when I finished my treatments and I stayed on herceptin for one year. My heart function had dropped some on the Herceptin, and between that, not knowing if the mets were Her2+, and not even knowing after that weird Path if I really was her2+, my Onc decided to take me off. I had one of those gut feels that it was a bad idea, but I wanted to just be done with that place for awhile.

Fast forward January 2007 and my markers, which had remained between 12-17 while in remission jumped to 21. I know that is not a lot, but it was a red flag for me since mine had been so low. No one was really concerned and told me it was normal fluctuation. I decided that there was nothing I could do at that time anyway, as things might be too small to be picked up on a PET, so I just went about my life and enjoyed for the next 3 months. In April 2007, my markers were at 32 and even though less than 38 is normal, I knew my cancer was back. The following weeks they jumped to 44. We did a scan, and the Bone Mets were "innumerable (love that!) through my entire skeleton and a spot on the lining of my lung and thymus. I had a biopsy and the Path showed the cancer was Triple Negative. I still felt like I needed the Herceptin, even though my Path didn't show it was warranted. I pleaded my case to my Onc, who luckily listened to me and said she would agree to give me the Herceptin if I did not get stable/NED after 3 rounds of Carbo/Abraxane. My numbers did drop, but then they stalled at 40 and would not drop further. Scans om 7/30 showed the random spots on lung lining, thymus were gone, but the bones were significantly worse, lots more lesions spread from my skull, to my arms, pelvis, ribs, sternum and thighs (lovely!). I thought I was going to die.

My Onc agreed at that time that we could add the Herceptin and try one cycle of the Abraxane/Herceptin (we dropped the Carbo) so we would know if the herceptin did anything before adding a new chemo (Navelbine was the next one). On August 3rd I did my first Abraxane/herceptin and my markers dropped from 37 to 21 in 2 weeks! They did creep up a little to 26, so we decided to do another scan after another round of the combo. My results came back Tuesday showing all the cancer activity in my bones had returned to normal, and there was no new or recurrent sites of cancer. I can't beleive what happened from August 3rd to Septemeber 21st after 2 rounds of Abraxane/Herceptin!!

Our plan is to drop the chemo for now and just do the Herceptin for 6 weeks, than another scan to see if I am still showing no activity (no one said anything about NED, so I am not sure about that yet - I think on of the areas showed "returning to near normal levels" so I guess that does not qualify me for NED). I'm hoping that the Herceptin does it and I can stay in remission for a long time.

I just wanted to share my story because I think we all know so much more about our bodies than we think. I feel blessed that I have an Oncologist who was willing to listen to me, and to be open to following my gut even though it flew in the face of science. I don't know what the story is, maybe I am Her2- and Herceptin still works for me for some reason, or I am Her2+ but it did not show up on the pathology from the Bone Biopsy, I don't know, but I do know that for whatever reason, it worked. Maybe there are more women out there who could benefit from herceptin, and could add it to see if it makes a difference if the chemo is not working.

I feel so blessed, even if my remission is short and I wanted to share and to hopefully help someone else.

Love,
Natalie <!--IBF.ATTACHMENT_205526-->

[Lani]

there is a very small minority of cells which like to lay dormant which are responsible for recurrences and they seem to have the appearance of triple negative bc often. Some progenitor cells (daughter cells of the stem cells, but not yet fully differentiated--those w determined fate that cannot be changed and very defined characteristics--may be her2+ or there may perhaps be some stem cells that are her2+

It is a shame noone tested your serum her2 when they failed to biopsy your mets, as that may have given you an answer.

Anyway, your case proves that the answer is not cut and dry for many reasons, some of which have been theorized, many of which having not yet been theorized...one is that herceptin helps those with excess her family ligand like heregulin, one is that her2 testing misses some her2+ for multiple reasons, one is that you have a her2 mutation which the testing doesn't pick up, among others...

Please keep telling your story as I hope it might give some researchers an idea which might unravelling this incredible puzzle.

I, like you, can't see the reason not to give one or two courses and a followup PET or other scan to patients with confusing tumor profiles--the answer will become clear quickly (either it helps or it doesn't), the cost shouldn't be much more than a course of the wrong chemo (which can make you sick requiring lots more expensive care) and even if the effect doesn't last(which I SINCERELY PRAY it does) it teaches everyone something which may advance our understanding of the disease and hopefully paves the way for better treatments, it also gives you an indication that maybe what you need is just to try adding different things to herceptin to keep your quality of life while this progress occurs.

Congratulations, thanks for posting, and continued health!

[Lani]

4:00 PM-5:00 PM|
Systems biology for target identification and rational therapeutic selection in breast cancer

Richard Neve, PhD, Molecular Biology, Genentech

Will listen to see if any new herceptin combinations looking promising!

[Julie2]

Hi Natalie,

Thank you so much for sharing your story. Congratulations for achieving such a miraculous response and wish you to be NED forever.

Julie

[TriciaK]

Natalie, thank you so much for joining us again and sharing your remarkable story! We need stories like yours to keep us all going. We also need to be able to know when things look down so we can pray for you and think positive images. In other words, we do need each other and hope you will continue to post. Your story is a good example of the power of knowing your own body and being as informed as possible. Here's wishing you NED for many years! Tricia

[Lani]

I attended the lecture this afternoon--interestingly this gentleman believes there are basically two types of tumors which have multiple subsets and that her2+ tumors usually fall within what HE calls the luminal group (vs the basal group)

Interestingly he said John Park of UCSF is working on characterizing Circulating tumor cells using gene expression profiling (ie, it could be done on a blood sample rather than a biopsy), but he feels the way CTCs are often separated out from a blood sample (using an epithelial cell marker such as EpCAM) may not produce a representative sample.

His work predicts that adding a second targetted therapy to one to which a cancer can become "resistant" is a smart move in a prophylactic fashion--in the case he showed he added an AKT inhibitor to an EGFR inhibitor which markedly improved its efficacy, but of the cell lines shown, the ones for which this worked best did not seem to be her2+ cell lines.

Interestingly, he showed that EGFR content of a breast tumor by IHC does not predict those for which an EGFR inhibitor like IRESSA might be most effective, and in this example SKBr3 and BT474 (Her2+er- and her2+er+ cell lines) were among the most sensitive to IRESSA treatment.

He is looking for biomarkers predicting efficacy of IRESSA and other inhibitors underdevelopment, many of which are years from approval. But
he is involved in a faster way to screen compounds, some already on the market and FDA approved, for efficacy against various cell lines and has 5 employees working full time testing 40 compounds against a whole slew of cell lines.

Go team!

[tousled1]

Natalie,

Thank you for sharing your amazing story. Just goes to show - listen to your body. We seem to know our bodies better than the doctors.

[Gina]

Natalie,

I was greatly touched by your case study. So many times, I think we need to re-evaluate all our cancer models and realize that the tumors are merely the symptoms, or artifacts, if you will-- of a much more systemic all-encompassing underlying illness. Many studies have correlated elevated CA 15 and CA 27/29 levels with high blood circulating levels of serum her-2 --from your story, it sounds like your doctors were probably following the CA 27/29 markers and I agree that it was such a pity that no one even thought to run a quick serum her-2 blood sample on you.

Be that as it may, I would highly encourage you to share your whole story with Elizabeth Edwards who has a case similar to yours...at first thought to be triple negative...now, perhaps, slightly estrogen positive...the bone involvement also strikes a familiar chord.

Some of you will recall that there is data that shows even when a tumor appears to be her-2 negative, the serum her-2 marker will still be found to be elevated in the blood--this is rare, but it does happen and has been documented.

Would love to know what Natalie's serum her-2 number is even now. Any way you could find out??? Even if it were just slightly elevated, it would give you another clue.

Best of luck,
Gina

[jones7676]

Thanks for sharing your story, for all of us on this site knowledge provides the power to ensure our treatments are the best suited for each of us. May you stay disease free for a long time.