Update - Stage IV - three years off chemo

[StephN]

Hello everyone -
This week is a milestone for me - who was not given a very great chance to live out the year of 2002!
In July of 2002 I was "let off" a hard course of chemo plus Herceptin for hard to treat mets. I was #6 enrolled in a new clinical trial here in Seattle (phase II) that involved Taxol and Navelbine and Herceptin if patient was Her2 pos. I have done well on that protocol and managed to get off and stay off chemo for THREE years. This is with very fast moving and aggressive metasteses to liver and starting into my bones. In my case, hitting the cancer hard and taking the highest doses I could stand did the trick. My med onc is happy for me and all my family and friends are overjoyed at my success.
It was definitely not easy, but the few months of tough chemo was a worthwhile tradeoff for me to have this long off any kind of chemo.
With exception of my brain mets caught in early Jan. of this year, I have no sign of active disease. These appeared probably only because the drugs can't cross the blood/brain barrier as molecules are too large to get through.
Brain mets are either resolved or dissipating on schedule. Nothing new in my abdominal CT scan. "Out, out damned spots!" A quote from Macbeth.

Zometa. I have been on this bone strengthening drug for three years and this is "long term" for this drug. They don't know how long we should take it. They don't know about long-term side effects. Since there is much that is NOT known as the drug is so new, I am being cut to every 12 weeks. I will get the same dose I am now getting which is the normal dose. Will not increase as we do with 3-week Herceptin dose, etc. My med onc feels for the protective benefit is worth getting it on a stretched out basis, rather then stopping altogether. Fine with me as I feel fine after I get it.
We had earlier touched on some of the new biphosphanates, but Zometa is doing the job for me so we will stay with it.

Anyway - just wanted to share my news. And let some of you know that Herceptin is effective on its own for many of us after we have become Stage IV.

Next stop - a vaccine trial. More as things firm up.

Steph,

So great to read, thanks for the history. You serve as an inspiration.

Warmest regards,
Eric

StephN,
Your story is a very encouraging one for my Mom! I always pass along details about your journey to her. Thank you for sharing and congratulations on your milestone! May you continue to have many many more!!
Brittany in KY

Mom's History:
Dx 3/04 - Bc with mets to liver and lungs.
Liver mass was 9cm, several lung nodules
Tx 3/04 - 12/04 Taxol/Carbo/Herceptin
Liver mass was 2.3cm, no lung nodules
Tx 1/05 - present Herceptin only every three weeks
Liver mass is now 1.9cm, not sure about lungs
Chest ct and bone scan scheduled for August.

Thank you for sharing Steph. We are all so grateful for you and your wisdom!

Love, Joy

Dear Steph,
Praise God for your wonderful news! Your persistance and faith are a great inspiration to us all. I was wondering, how far were you off chemo, when you were given the herceptin? I was five years out and the doctor still gave me herceptin. God Bless, Cathy

StephN,

Phenominal news and many more years to you.

Rhonda

Steph, I am so happy to hear your good news! It gives all of us hope. I have some questions that I especially need to know, but maybe others need the answers, too: Are you still on Herceptin? If not, how long were you on it altogethr? How long did you endure the hard chemo concentration? I am trying to decide how long to continue Herceptin. My oncologist hasn't said anything about stopping it yet, but I am wondering if it is an indefinite, rest-of-life thing. I was on Herceptin and Navelbine for 6 months, now just Herceptin for another 6 months to date. A year ago they found 3 small nodules in my lungs, which haven't grown or changed in a year on Herceptin. I have also been taking Femara for the year. I would appreciate hearing your answers to these questions. Thank you so much, and I pray you have many more years! Tricia

Yeay Steph! So good to hear your news. I am now 4 months since the end of chemo, and on Herceptin and Aromasin. I was also surprised to see continued improvement while on herceptin only.

From what I understand, the Herceptin will be a continual thing basically forever. I don't mind, as long as it keeps helping me.

My onc is recommending adding Faslodex to the Aromasin and Herceptin, so that is something I am considering now.

Congradulations. You are a brave lady to have tried something new and so aggressive. But I am very glad that it paid of for you. I wish you continued good health and hapiness.
XOXO
Anne

[StephN]

Thank you all for your "round of applause" for my success in staying off chemo for three years. I applaud you all for also sticking around to share with! I wish fervently that we ALL could dance with NED for life!

My subtitle of "Herceptin and Zometa keeping me clear" means that I continued on these drugs unbroken since the end of chemo. Herceptin was first given at the onset (discovery) of my mets in Jan of 2002. I took it weekly with my Taxol and Navelbine.

When stopping those drugs I went on the every 3-week routine of Herceptin and Zometa. That has been three years.
While we don't know much about long-term Zometa (kidney and jaw concerns), I WILL stay on Herceptin as long as possible. Meaning that my med onc will give it to me as long as it is effective or until something else comes along that he would like me on. OR I have a heart event that would warrent my going off Herceptin.
Altogether I have taken Herceptin for 3.5 years. I am very faithful to my "vitamin H."

So far so good and I have Ginger Empy to catch up with! She is now some TEN years on Herceptin.

[StephN]

Cathy -
to you question of how far off chemo I was given Herceptin. I was 6 months off the original round of Adriamycin and Taxotere when the mets were caught. So, it is at that time I was given Herceptin, but at Stage IV and along with more chemos.

I did inquire about getting Herceptin "off label" in 2000, but insurance was not paying for it at that time for adjuvent therapy. Knowing I had it in my back pocket, so to speak, I went on without it hoping that the other first line aggressive treatment would work for me.

No such luck, but it did the job when I needed it most.

Dear Steph- I love your positive attitude ! Keep it up. Do you know of anyone who took herceptin 5 years out of chemo? I wonder if I should even be on it. God Bless- Cathy

Steph: That is awesome new and I am so happy for you. That is special coming from someone I know and yet being stage 4. That will inspire many people. Keep up the good work of sharing which I know you will and that is what this board is all about. Getting the word out we can fight and move on thanks for Herceptin and other drugs. Hugs, Sandy

[StephN]

Cathy -
I do know a couple of other women here who are taking Herceptin with an estrogen suppressor and having success stabilizing and shrinking some nodes or a bone met or two.
One was just five years out from original DX. Not sure about the other, but she is also doing well. The first lady I refer to is 72!

Steph, you have done remarkably well from the beginning. I suspect you're another "Christine"...you'll be able to stay one step ahead of this disease. By the way, I think your attitude goes a long way in healing. Thanks for always sharing and responding to the posts of so many.

Steph, I was so pleased to read your post. Thank you for willing to share your experiences. You offer hope to others that come to this site, and you often give encouragement when you can. I always enjoy reading what you have to say. Today I had my three month MRI and am waiting for the results. I became stage 4 last May after being diagnosed in May of 1998. Herceptin has been a wonder drug for me and so far it is doing its job. I hope it continues.
Best,
Barbara H.

Steph,

As far as I am concerned, you are a hall of fame (ER)!!!!

You are truly an inspiration to all of us especially the newer members who are most vunerable and need your type of reassurance and guidance.

Your contributions here are second to none.

take care,
Al

[Lolly]

Steph, you are the embodiment of "knowledge is power"! You give us all hope and inspiration.

<3,
Lolly

Steph,
I am so happy for you! This site is such a valuable tool for all of us. I have learned so much here because of people like you.

Could you tell me if you are Er/Pr + and what kind of diet and or supplements you take, because they seem to be working for you. I am just so confused about all of the conflicting reports with diet and supplements.

Thank you so much for taking the time to share with us!
Lori

Steph,

Wonderful!

Thank you for your posts and sharing your life and experience. You and others on this site have been a great source of informtion and inspiration for me and I am sure for many other new comers. I am stage II and have been fortunate enough to be at the right point to step into the newly released treatment protocol for early stage with herceptin. This and people like you give me hope that I will be around to see my 13 and 14 year old boys have children of their own!

Thanks again.

Sassy