what are your thoughts

[al from Canada]

My wife Linda and I got the results from her third ultra-sound in 6 months for her liver mets. The report says that there has been no change, consistent with extensive heptic metastases (75% of liver mets). She is on Navilbine + herceptine, feels fine however we were disappointed that over 6 months there has been no tumor shrinkage, just stable disease. We have brought this up before and the doctors say: if it works, don't change (the chemo). We are still in the position of waiting until the current regime stops working before they will change the chemo. Given the extensiveness of the mets, I'm afraid we are only going to have 1 shot at a second regime; sort of a do-or-die (ie, by the time we find-out #2 doesn't work it will be too late). We have a consult in Toronto next week and I would like to have a game plan together, even if it is accepting the current one. Any comments or opinions appreciated.
Al

[michele u]

My thought would be to ask for the new cellsearch test. It's supposed to tell you if the chemo is decreasing the amount of cancer in the body, is what i get out of it. I think this very senario is what the test was made for. You might want to ask you dr about it

[Esther]

Can you ask about adding Xeloda to your treatment?
I am presently on Herceptin/Navelbine/Xeloda for liver mets, and am having excellent results.

Started treatment in Feb 04, and have had 50% of the tumors disappear, and the remaining ones have all shrunk down.

It might be worth asking about anyway. You wouldn't have to stop what you're doing now, and they think is working in keeping her stable, but just would add a little extra punch.

From what I understand from my Onc, Xeloda taken in pill form directly targets the liver mets.

[Lolly]

Al, I agree, it's disapointing to say the least, and it seems to me you're right to question the strategy. It all comes down to whether you and Linda want to focus on quality of life now, or sacrifice some of that in exchange for hitting the cancer hard before it has a chance to progress. I know we have a few on this board who've successfully waged a hard fight and are now NED, but it is a hard road. I say the decision should be your's and Linda's, and if it runs contrary to the oncs opinion then you'll have to really push for what you want.

I found this very informative, and very long(!) article, it discusses various chemo regimes used for MBC. I hope it's of some help.

Love, Lolly

[Steph N]

Hello Al -
So sorry to learn that the combo Linda is on did not do more against her disease. From what I know about these situations with fast moving disease you have try to do more than stop it in its tracks. Linda is younger than I am and I am sure can support a stronger combo, whatever that may be.
Quality of life was not my first thought - it was to LIVE so I could worry about "quality" later! Even under a hard chemo treatment for 7 months, I could do many of my normal activities, just not as long or as often. I reached NED having begun with almost 60% of my liver in fast-moving disease. Most people i would casualy meet were not even aware of my illness even toward the end of my treatment when I was pretty worn out. So, it is not as bad as some think.
The "holding pattern" was not what I wanted - too hard to move on from that position and this also gives the cancer a chance to get used to the drugs.
Is Linda ER and PR negative? Can't recall. This could mean a change as well.
Linda needs a full body PET scan. Insist on that no matter what. They need to know the full extent of her disease - or if it is still only in her liver. This I would not budge on. This is the best way to tell what is still tumor and what is scar in her liver. Without this information, I would not go forward.

[Christine]

Al
Here's my response to You at this time. Start out by adding Xeloda to Herceptin/Nav and then have the onc. give her Lupron to eliminate any potential risk of hormones involvement in cancer progression in the liver, and because she still a young women. Hormones hide in our adipose tissue and adenal glands supply more. Shutting down the hormones could only help her present status by starving the Ca cells. Try getting ther onc to approve this plan. Test tumor markers after i month and possible scan after another interval. If she has better results, then stay on this protocol. If necessary, there is a clinical trial on the Fast trac by the FDA, called Lapatinibby GSK, that you may want to consider , since it is for advanced metastatic
BC. This drug acts by cutting the blood supply so the the cancer vascular system can't feed the tumor cells.(anti-angiogenisis) There are trials all over the U.S.. Call 800-410-6618 or contact Elizabeth A.Carifioli@gsk.com - patient recruitment services. Also try calling 610-787-3787. Susan Blaustein can also be a contact there.
Good Luck, HOPE THIS INFO HELPS! W ell wishes Linda and hugs to you both. Christine

[Al]

Keep us posted...when are you heading to Toronto? I know that my sister has a similar situation with her liver (though her cancer has progressed more than Linda's), and everything has stabalized, but cancer is far from gone. We are definetly going with Navelbine/Herceptin starting November, but we have also requested Xeloda.
Continued luck to you, Linda & kids

[al from Canada]

We are going next Wednesday. Thank you for your kind words. All the best to your sister.
Al (from Canada)