Stopping chemo afte 30 months????

[marie]

I wonder if someone there can help point me in a good direction to make a decision:
I'm a 3x BC survivor (the last one was mets to my liver). I've been on Herceptin+ Navelbine for about 30 months, and am in complete remission with NED. My oncologist originaly recommended that I stay on Navelbine indefinetly, but now has raised the option of getting off it, just staying on Herceptin. I'm looking for research on whether this is the right choice. Also on info on really long term use of Navelbine and or Herceptin. Most of my friends with mets have gone off their original chemos, and most of them have recurred. I'm still on my first-line treatment, and I'm still in remission. I don't want to save a few months of toxicity from the Navelbine, only to recurr!! It has minimal side-effects, all of the tolerable at this point. On the other hand it sure would be nice to be off it!

Any help???

marie

[Lisa]

Marie,
I was on Navelbine/Herceptin for recurrence to liver and bones. I stayed on for 9 months until liver was greatly improved and bones, too. Then a month later, I discovered met to brain (which chemo doesn't affect anyway), then a month or two later (current), mets to torso area lymph nodes. I'm now on weekly Taxol with 3 week Herceptin/Zometa.

My onc says I'm one of the people who must have chemo added to Herceptin to work. We wouldn't have known this had I not stopped the chemo. So now I'm faced with being on Taxol indefinitely.

I realize this doesn't help you much. Tough call, I know.

Love and light,

Lisa

[al from canada]

Dear Marie,
I would love to have the answer to the same question as my wife Linda and I, will be faced with the same decisions in 2 weeks. There are two differences: Linda is not NED and she has been on Herceptine + Navelbine for only 7 mos. With the exception of a few cases, I haven't heard of many successful "herceptine only" outomes. Linda has few side-effects, has stable disease, has beaten the odds so far and has a good Q.O.L.
Can anyone on the board enlighten us on the logic of stopping what's working in favor of a "treatment roulette"? If someone could guarantee us another 20 years on the H+N regime, would there be any questions? Absolutly not! In fact, getting another 24 months would be like winning the lottery.
My thoughts are that they would have to replace the current treatment H+N, with something else, not just H. A clinical trial? A vaccine? Something with either a better track record or something with better odds.
I was excited when they talked about taking Linda off of Chemo in favor of H. only but the more I researched, the more apprehensive I have become.
We need you guys to weigh-in on this one because it is a question many of you will be faced with.
Al

[Lolly]

Marie, I have been on Navelbine/Herceptin twice, for six months each time. Just finished the second regimen, and the reason I went off Navelbine and on to Herceptin maintenance each time was because I had reached NED. If I weren't NED, I wouldn't have wanted to stop the chemo. I think it's basically a case-by-case call, to be made by the patient and doctor.
Personally speaking, if I still had active disease, I would want to remain on a combination therapy, as long as the side effects were tolerable and I had good QOL. Like Lisa says, it's a tough call, but I feel it's YOUR call.

Love, Lolly

[Peggy in Orlando]

I am currently stage IV, NED. The last chemo I received was July of this year and that was Herceptin.

My doctor gave me the option to stay on Herceptin indefinitely if I wanted. She had concerns about the cardio toxicity even I had no heart problems at the time. She said she had seen other patients with cardio problems that came on rapidly and without warning and then it was too late. She was very much in favor of me giving my body a break if possible and I agreed.

If you're NED now, you can "save" the drugs for later. I guess it's a choice you can make and probably you could find an oncologist who would keep you on some type of chemo forever. But what happens if your cancer progresses while you're on Navalbine. They would have to use something else (maybe something not as gentle) to get you back to NED. If you go off the chemicals for a while, you give your body a chance to recover you may be able to use Navalbine and/or Herceptin effectively again. I think I have heard 6 months is the time frame. If a drug was effective one time and you take a 6 month break from it, it may be effective again. Of course, it's always possible that you go off the drugs and the cancer forges ahead immediately. If they had all the answers we'd have a cure.

The drugs are not a cure - they just help hold things back. At least that's the way I understand it.