Anyone on chemo continuously?

[Lisa]

Hi friends,

Since my last recurrence (to my stomach area lymph nodes), I have been on Taxol weekly with no pause. I think maybe 7 weeks now. My onc, when asked, confirmed that I would be on chemo the rest of my life. For those of you unfamiliar with my story, it seems I'm one of those for whom Herceptin doesn't work without a chemo combo. Since this time last year, I've had recurrences to liver, bones, brain and now lymph nodes.

My question is this: have any of you been told this same thing and are you now continuosly on chemo? How are you doing? I'm pretty good, except for the third week when I get Herceptin and Zometa, too. Then I'm a bit sick. I do have increasing neuropathy in my fingers. Need to increase my L-glutomine and vit. b.

I'd appreciate your responses.

Love and light,

Lisa

[JoJo]

Hi Lisa,

I have heard of women being on chemo continuously for their stage 4, however you might want to check if you could take relatively safe breaks from chemo, just from time to time, to prevent from developing immunity against chemo guns over time....

Take good care ~JO.

[JoJo]

Am i the queen of PS's or what? :-)

On a happier side-note, my chemo nurse told me last week that there has been some women who have been on Xeloda for years; one been on for 8 years.

Positive thinking! :-) Hugs ~JO.

[Patty H]

I have really never asked my Dr. that question, but unless something happens I think that is my schedule. He did give me a break last summer when the chemo ended up putting me in the hospital. Sometimes when your body just needs a break, I think they give it to you. But on the other hand I have good quality of life and the chemo doesn't slow me down too much. I do wonder sometimes, how much will my body be able to take. Patty H

[lu ann]

My doctor hasn't told me yet, but I think I will be on continuous chemo. I had taxol, carbo, herceptin, and zometa for 6 cycles, and I'm now on navelbine, herceptin, and zometa. My bone mets are stable, but I still have a mass on my mediastynum. I had a fever of 102.2 last week after taking the lukine shot for low WBC. I thought I was dieing. I took 2 tylenol while my husband called the doc. He prescribed an antibiotic. My temp was back to normal before I went to bed. Love and Blessings, Lu Ann.

[Kathy in NY]

Hi Lisa,

Sounds like I'm in the same boat. I'm on Herceptin and Navelbine which I have been on for almost 3 yrs now. I had the Navelbine weekly...then down to 3wks/mo...now 2 wks on and 2 wks off. MY onc says he will only stop it if the cancer progresses or I can't handle the side effects. I have relatively mild side effects...just get tired easily. I also just returned from a recheck after gamma knife and the doctors there said the same thing. As long as I could handle it, I should stay on the Navelbine because its keeping the bone mets from spreading. I feel very lucky that I have a combination that works. But I'm not saying I like that weekly visit.
Best Wishes, Kathy

[al from canada]

Dear Lisa,
Linda is on the Navelbine + Herceptin like Kathy and all indications are that she will be on it indefinitely. We are applying for a spot in the U. of W. vaccine trial so that may change things.

Here is my take: there are limited side effects and Linda and I have a great Q of L. Even if the side effects were harsher, we would adjust. Sometimes the thought of doing something is worse than actually doing it. I am just so greatful that we have something that works! Also, don't lose site of the fact that there is a lot of stuff coming down the pipe.
Please hang-in and think about the future!
Al and Linda

[Kristen]

Hi Lisa,

Am so sorry to hear about the treatment schedule you will be on. I do know 2 ladies where I had my infusions and they are on chemo for the rest of there lives also. There onc's try and give them a break when they can, but as long as they are tolerating the schedule and is keeping the cancer from spreading they continue on.

They seem to have a good QOL, one continues to work, but is rethinking that, it seems she can get disability and would like to spend more time with her family. She has had it spread to the sternum, liver, and uterus in 4 years of initial dx. She just turned 40 this year.

You seem to have such a beautiful spirit and I am so glad you are back on the board. I think and maybe it's a horrible cliche, but you are one who makes lemonaid out of lemons. You are always in my prayers. Take Care K

[Lolly]

Lisa, I've met several people over the last five years who've been on chemo more or less continuously since dx, and they are doing well. Like the others have said, occasionally a break is allowed, either for health or vacation issues. I know if I need to take that step one of these days, I won't hesitate, with a good onc and the new dosing schedules regarding maintenance chemo. I'm hoping to be around for the cure, so gotta do what we gotta do to get there :)

Love, Lolly

[Lyn]

Hey there, well look at me, I had the radical surgery in 1998 with 16 out of 16 glands all positive and not hormone responsive, and I have been chasing enlarged lymph glands and skin mets ever since, the only breaks I have had was when nothing showed on the tests, but that never lasted long becasue they were there but just not big enough to detect, without a MRI I suppose, and now 1st January 1995 I have had the last of the results including the MRI of head and neck and I am "AT LAST, NED", for how long who knows, but at least I know in the meantime the ladies here have been road testing new drugs, and should I need them our gang will be well informed. I turned 50 in October and I declared I was just beginning a new 7 year cycle in life so hopefully this round will be for my enjoyment instead of a pin cushion for a Cytoxic Nuclear site. I have had that much radiation it is a wonder I don't glow in the dark. Even at our darkest moment, I know I have wanted to throw it all in but for the sake of my family, who would not be able to live in the life style they are custom too I have to plod along.

Love & Big Hugs Lyn

[Lolly]

Lyn, it's good to have you "back" if you know what I mean...you have brought in the new year for me with a big grin, thanks :D

Love, Lolly

[Lyn]

Thanks Lolly, yeh I know what you mean, some times I just feel like "Dobby" in Harry Potter and beat myself up.

Love & Hugs Lyn

[Sandy H.]

Kathy I thought they used Zomeda for bone mets? Has this changed or is it different with your mets. Or do you have other mets you need treated? So glad its working. Hugs, Sandy