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Her2 and Herceptin

Ev
  • By Ev
  • Posted March 10, 2009 at 1:40 pm · 37 replies
  • In Support groups
  • Shared with the public
0 Recommendations

Hi Team,
Is anyone Her2 positive and on Herceptin for life?
I just want to know if anyone else's path has been like mine.
I was diagnosed almost ten years ago with E-,P- and Her2 +, first stage. A year and a half ago, a second cancer in right breast, DCIS, and mets from the first cancer in the lymph nodes of the mediastinum (sp?) ie chest cavity and a bone lesion. First time around: chemo AC, lumpectomy and radiation. Second time, Taxotere, Carboplatin and Herceptin. (6 rounds) and lumpectomy for DCIS cancer.
Responded well, have been waltzing with NED since the third chemo, Halleluah! and have been on Herceptin every three weeks, monitored with echocardiograms every three months and pet scans.
The Herceptin treatments are for life unless my heart shows deterioration from the drug.
Like everyone else's, the stage 4 diagnosis came as a tremendous shock. I had no symptoms at that time but had read an article in the NYTimes about the use of MRIs as diagnostic tools. I asked my onc if I could have one so that I would feel reassured that the cancer was gone. At first he brought up reasons not to have an MRI - questions about whether insurance would pay and details about how false positives stress people out and result in biopsies that aren't needed. I said I was willing to deal with all of that. 3 MRIs, two Cat scans, two biopsies including one of the chest, and a pet scan later, I got my diagnosis.
It's been a tough time, even more psychologically, emotionally, and spiritually, than physically, but I'm hanging in with all you alligator wrestling beautiful women.
I know that my situation could be much worse like the shoeless guy who wished for shoes until he saw a man who had no feet! The spectre of more mets hangs over my head every day, but I'm trying to do the best I can with whatever time I have left.
Would love to hear from others.
Cheers,
Evie

Explore topics in this discussion:

Cancer Taxol Surgery Brain tumors Atarax Avastin Breast cancer Taxotere Chemotherapy Pain Carboplatin Benadryl Depression Stress Sutent

37 replies

chloemom

Hi again Evie,
I too am E/P- HER2+. I have weekly infusions of Herceptin and plan to continue with it for as long as possible. I've also had two rounds of Taxol & carboplatin in the past 20 months. I just found an article recently about great benefits from adding another drug with Herceptin when it appears that Herceptin may be loosing it's effectiveness alone. I'll see if I can find it and post here for you.

There's also an article I posted as a discussion this week about changing ER- to a + so that we can try
the hormonal therapies! That was hopeful to me. I think it's under the News category.

When that slimy alligator raises your fears, check out the discussion What We Need On This Site to get a reprieve and some laughs. It's 80+ jokes and funny stories! I find that so helpful...an occasional rant helps too! lol

chloemom

I was on oncology-times.com this afternoon,
The entire Feb. 25, 2009 issue is on HER2+ and new Herceptin combinations....most of the studies are for mets. I couldn't get link to paste.

lynnwv

I am also E/P- Her2+. I have done Taxotere/Herceptin and Navelbine/Herceptin over the last year. My last scan indicated combinations weren't working, so my oncologist just switched to Tykerb/Xeloda. He said we may go back to Herceptin with Tykerb at a later time, but he is hoping for a better response to the new combination. I was hoping that Herceptin would work longer, but hopefully the Tykerb pills will go longer.

mariec

Yup. That's me. Dancing with NED as you put it since summer of 2004. On Herceptin and Navelbine since June of 2002.

I'm sort of astonished by the whole thing. I had no idea I was going to live this long and well. Not unhappy about it, mind you.. just astonished.

gpawelski

There are a number of issues on the subject of Herceptin. In addition to taking this drug for a long time, these kind of individual, targeted oral drugs would be taken in addition to an existing repertoire of chemotherapy mixtures a cancer patient is already taking, instead of taking them alone. The benefits of the newer targeted therapies are marginal, meaning, these targeted therapies may impart a clinical benefit by stabilizing tumors, rather than shrinking them (substituting shrinkage for stabilization).

Targeted therapies need approaches to determine optimal dosing, to assess patient adherence to therapy, and to evaluate treatment effectiveness. To determine the dosing and effectiveness of targeted therapies, physicians turn to pharmacodynamic end points, such as tumor metabolic activity on Pet Scans, levels of circulating tumor and endothelial cells (CTCs), and serial levels of target molecules in tumor tissue, adding more complexity, trying to identify the subset of patients most likely to benefit from specific drugs.

Ev

Hi Chloemom, again.
It's interesting that you have Herceptin weekly and I have mine once every three weeks. Also that you had two rounds of Taxol and Carboplatin while I had six of Taxatere and Carbo.. Wonder why and how that's determined.
Thank you for your citation about Herceptin in the Oncology Times. I'm looking forward to reading it later along with the humor discussion. Love to laugh but not so easy these days!
Evie

Ev

Hi Lynnvw,
Wishing you the best of luck with your new combo. I've heard of Tykerb/Xeloda but don't know anyone on it. May it work, work, work to kill off all those SOB (and every curse known to man) cells!
Evie

Ev

Mariec,
I met a woman in the chemo room who's stage 4 and been on navelbine ("navy bean" is how I remember its name!) for 10 years. When she told me that, I felt as if I had received the best gift ever. Like you, I'm astonished that I'm feeling good after thinking at the time of my diag. that I'd live for just one miserable year! Since you've been dancing for 5, it inspires me.
Thanks for your post.
Evie

Ev

Gpawelski,
Just for the record, I get herceptin as an IV, not an oral drug. I don't think it's available as a pill.
Evie

chloemom

Morning, by rounds I meant 6-7 months of treatment each time. I was offered the every 3 wk Herceptin last year but had just read of some benefits to weekly infusions so I decided to keep it. I'm only a couple of miles from the clinic so travel isn't an issue for me. I'm curious too in the difference of taxols prescribed.

gpawelski

Ev. You're absolutely correct. I inadvertently did not take out the word "oral" or add the words "and IV." The oral vs IV in regards to Herceptin brings to mind the differences between Herceptin and Tykerb.

Tykerb was one of the first oral agents with the potential to compete directly with the IV drugs. Early use of Tykerb was limited to patients whose breast cancer was refractory to Herceptin. In the longer term, it could supplant or perhaps find a place in combination with Herceptin.

Although oral tyrosine kinase inhibitors, like Tykerb, offer patients a well-tolerated, conveniently administered alternative to intravenous (IV) therapy, oncologist were not ready to use Tykerb as a replacement for Herceptin.

According to a Decisions Resources, one of the world's leading research and advisory firms for pharmaceutical and healthcare issues, they found ninety-one percent of surveyed oncologists stated that IV cancer therapies are more profitable than oral therapies. And fifty-eight percent of oncologists say they would favor IV Herceptin over oral Tykerb because administration of IV drugs remains an important source of income for their practices.

Is Tykerb better than Herceptin? Maybe for these reasons.

Cells are the most basic structure of the body. Cells make up tissues, and tissues make up organs, such as the lungs or liver. Each cell is surrounded by a membrane, a thin layer that separates the outside of the cell from the inside.

For a cell to perform necessary functions for the body and respond to its surroundings, it needs to communicate with other cells in the body. Communication occurs through chemical messages in a process called signal transduction. The purpose of these signals is to tell the cell what to do, such as when to grow, divide into two new cells, and die.

Targeted cancer therapies use drugs that block the growth and spread of cancer by interfering with specific molecules involved in carcinogenesis (the process by which normal cells become cancer cells) and tumor growth. By focusing on molecular and cellular changes that are specific to cancer, targeted cancer therapies may be more effective than current treatments and less harmful to normal cells.

However, the monoclonal antibodies like Herceptin and Erbitux are "large" molecules. These very large molecules don't have a convenient way of getting access to the large majority of cells. Plus, there is multicellular resistance, the drugs affecting only the cells on the outside may not kill these cells if they are in contact with cells on the inside, which are protected from the drug. The cells may pass small molecules back and forth.

Exciting results have come from studies of multitargeted tyrosine kinase inhibitors, "small" molecules that act on multiple receptors in the cancerous cells, like Tykerb and Sutent. Targeted "small-molecule" therapies ruled at an annual ASCO meeting of oncologists a couple years ago. The trend was away from the monoclonals to the small molecules.

mariec

Ev

Almost 8 actually.. 5 NED. But that's really cool to know-- 10 years. Wow. Navelbine seems to be really good as a first line drug with Herceptin, I know a few people who have been on it a long time-- maybe a bit less so later on in the game.

A thought on weekly vs. every 3 weeks Herceptin-- I had it weekly at first because Navelbine was weekly. Then Navelbine became every other week and Herceptin eventually followed. I think if a bi-weekly drug wasn't in the picture I would probably do Herceptin every 3 weeks. At least that seems to be how it works. take care y'all...

TwoGee

Add me to the list of ER/PR -, and Her2+. I have been on Herceptin since Dec. 2000, yep, you read that right, 8 years now. Just recently I started Tykerb in addition to Herceptin and also have been on Zometa for those 8 years. I was diagnosed Stage 4 from the get-go and have had 3 recurrences in that time, but am doing very well for someone that did not have a "snowball's chance..." My oncologist 8 years ago put me on Navelbine along with the Herceptin, and I have only had Navelbine once since then, other recurrences treated with radiation and cyberknife.
Very happy to be here and able to tell you my story and give you hope for many tomorrows.
Gail

nutrachris

I was diagnosed at stage IV in June 1999 with enlarged nodes and 3 brain tumors. After Herceptin, Taxol, Gamma Knife and wbr, I was in remission in the summer of 2001.
I took Herceptin from August 1999 until November 2007 at which time I decided to discontinue the drug after consulting with Dr. Dennis Slamon.
I still see my oncologist and am monitored using the Siemen's Serum HER2 test.
Had PET scan in Decmber - all OK
Brain MRI this past Monday - all OK

Hugs
Christine
Founder, www.her2support.org

Ev

Wow Nutrachris! What an amazingly impressive "cancer resume," as I've heard it called. (Not to be taken with a flip tone!!!) You've been through so much. Thanks for letting me know and helping me learn about all this. I haven't heard of Dr. Dennis Slamon - I'll google him. I'm thinking maybe he's the one responsible for herceptin? Nor have I heard of Siemen's Serum HER2 test. And, what's wbr? I guess I'm a good candidate for a crash course using the website you started. Thanks for posting, and keep up the excellent healing! Cheers, Evie

Ev

Hi TwoGee, Thanks for sharing your story. It's so helpful to hear from women with similar diagnoses who have been wrestling for many years. As a friend recently said to me, "What's the downside of hope?" I'm thrilled to know about you.
Cheers,
Evie

Dallasshan

Hi Eve,
Dr. Dennis Slamon is the doctor responsible for Herceptin. There is a great movie on Lifetime that follows the trials of Herceptin. The movie is called "Living Proof" and features Harry Connick Jr. as Dr. Slamon. Lifetime runs it pretty often. It is a very inspirational movie. Hope you enjoy it.

Jonnygayl

I found your message very promising. I was diagnosed in 2008 with stage 4 in the lungs and in the spine.I am on herceptin every 21 days and zometa every month. I have had pet scan every 3 months and a mugga test for my heart. I go in 2 weeks for the pet scan every thing loks good. I am just waiting for it to stick its ugly head again. I have had no surgery. I also take femara every day. Your message made me feel so good.

Ev

Hi Jonnygayl,
I know pet scan time is stressful - scanxiety - I've heard it called. Wishing you the best of luck with your next one. Until then, I'm choosing to think with hope that you will come through it with flying colors.
Cheers,
Evie

chainsawz

Hi Evie!

I was diagnosed July 2008 er\pr -, her2+ with mets to the lungs. I had 6 rounds of taxotere and carbo along with herceptin with a moderate response. I am now getting herceptin once every three weeks for the rest of my life.

I have been reading about the combo of Bevacizumab (avastin) Plus Vinorelbine (navelbine), but don’t know enough yet to determine if this is a viable option if the herceptin does not hold the line? Many posts say positive things about navelbine so I am hopeful :>

I love what you said about the shoeless guy – that type of thinking is exactly what gets me thru each day. I love coming to this site and reading posts from such strong and beautiful women who want to fight just like me!!

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