Herceptin with Upsc

Dear Casey
Only a psychic can answer your question. Fortunately, I'm not one. I think one year in remission is too soon for my comfort zone to change anything.

evertheoptimist said:

Never heard of herceptin
Never heard of herceptin used for UPSC patients. I thought that was for breast cancer. Can you tell me a bit more about this treatment?

Herceptin (trastuzumab) is one of the most hopeful new drugs.
In a recent study, about 60% of women with UPSC were found to overexpress the protein HER2/neu--the same one that is overexpressed in some breast cancers. HER-2/neu is found in about 30 percent of breast cancer cases and 20 percent of ovarian cancer cases.

Women who are HER2neu+ used to have a MUCH poorer prognosis than other women who were HER2neu- with the same grade or stage of cancer. Herceptin has almost leveled that playing field for breast cancer patients; it's still considered experimental in ovarian cancer, so the jury is still out here. If you take Herceptin, even if you are HER2-neu positive, you have the chance to overcome and negate that poor prognostic factor.

But so many women never know that are HER2neu+ because they don't have the live tissue assay done that tells them that they should add life-prolonging Herceptin to their treatment regime. You can test for HER2neu overexpression positivity or negativity with a simple needle biopsy into any malignant tumor you may have, if you don't mind them rooting around a little with the needle to dig out a large enough live tissue sample. I was able to have this assay run, along with an assay for estrogen and progesterone receptivity, with I had my 1st recurrence. But had I realized, before I had my initial debulking surgery, how critical it is to know if you are HER2+ , I would have fought for that live tissue assay from Day One. I can't believe it's not the standard everywhere, although I do think it is many places. I was HER2neu-, or I'd be on Herceptin today, just in case.

I know it's a tough call to stay on a drug that is experimental for your cancer, especially if you've been on it a year. Are they monitoring for cardiac side affects? Do you have any side affects from the Herceptin?

lindaprocopio said:

Herceptin (trastuzumab) is one of the most hopeful new drugs.
In a recent study, about 60% of women with UPSC were found to overexpress the protein HER2/neu--the same one that is overexpressed in some breast cancers. HER-2/neu is found in about 30 percent of breast cancer cases and 20 percent of ovarian cancer cases.

Women who are HER2neu+ used to have a MUCH poorer prognosis than other women who were HER2neu- with the same grade or stage of cancer. Herceptin has almost leveled that playing field for breast cancer patients; it's still considered experimental in ovarian cancer, so the jury is still out here. If you take Herceptin, even if you are HER2-neu positive, you have the chance to overcome and negate that poor prognostic factor.

But so many women never know that are HER2neu+ because they don't have the live tissue assay done that tells them that they should add life-prolonging Herceptin to their treatment regime. You can test for HER2neu overexpression positivity or negativity with a simple needle biopsy into any malignant tumor you may have, if you don't mind them rooting around a little with the needle to dig out a large enough live tissue sample. I was able to have this assay run, along with an assay for estrogen and progesterone receptivity, with I had my 1st recurrence. But had I realized, before I had my initial debulking surgery, how critical it is to know if you are HER2+ , I would have fought for that live tissue assay from Day One. I can't believe it's not the standard everywhere, although I do think it is many places. I was HER2neu-, or I'd be on Herceptin today, just in case.

I know it's a tough call to stay on a drug that is experimental for your cancer, especially if you've been on it a year. Are they monitoring for cardiac side affects? Do you have any side affects from the Herceptin?

linda,
as usual, you are SO
linda,

as usual, you are SO helpful to all of us. thank you so much. I am currently in remission. Is there any point of testing my stored tumor sample from the original debulking surgery for this analysis? if I do, given that I am in remission, will that even matter unless I recur, at which point, I would have the option of having the tumor assay done?

lindaprocopio said:

I'm pretty assure the assay has to be done on live/fresh tissue.
I remember dear Nancy saying this: "Had I known remission would be fleeting, I would never have wasted a moment of it anxiously waiting for the other shoe to drop. Because REMISSION is as good as it gets for us." I took that to heart and believed 100% in my restored health during both of the brief remissions I had. BLISS! Sure, I got my heart broken again when I recurred again, but the BLISS and REST of allowing yourself to believe was still my best move.

If you are in remission, please LIVE as if your cancer journey is OVER. I think of all the living I've managed to squeeze BETWEEN chemo infusions these past 3 years, and then I think of the lucky ladies in REMISSION who can't seem to free themselves from the blade swinging over their heads and relax into the JOY of remission.

I digress. (blush)

You don't want to worry about having an assay done until (God forbid) you do have an actively cancerous tumor they can get to to get a fresh tissue sample. Then I'd be sure and be tested for ER and PR receptivity, and HER2neu over-expression. But until you have a reason not to, I want you to BELIEVE in your remission and minimize the time thinking about cancer that eats up too many hours that could be joyful in your life.

I'm getting pretty preachy and bossy here and I apologize. I'm on steroids following my radioembolism Friday, and streoids always bring out this side of me.

Preach on, Linda!
You have an important message that we all need to hear--thank you & the steroids. No assay was ever offered to me at the time of the debunking surgery either. Malpractice in my opinion.

Hope you are holding up well after the radioembolism procedure.

(((hugs)))

Carolen