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Old 01-23-2004, 11:27 AM   #1
Priscilla - OK
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Hello. I am getting weekly Herceptin for liver mets. For a couple of days I feel great - then my liver seems to shut down. I get deathly sick for a day or two until my liver starts to work again. The following Tuesday, I seem to be worse off then the week before, but have several good days inbetween. I am wondering:

1. Why we must take Decadron?
2. Do I feel better because of the Decadron or the Herceptin
3. Is the Decadron using up what little reserve I have in my liver making it weaker than before?

Does anyone have any thoughts?

I have really been blessed to do so well for so long. I just Praise God for each day.

Luv, PJ
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Old 01-23-2004, 12:42 PM   #2
chere
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hi i had asked this question myself. i couldn't get an appropriate response from my physician so i asked to be taken off decadron. it was helpful with the taxol but i see no value in taking it along with herceptin personally. i am doing just fine with no complications but the decadron has taken it's toll with weight gain. i urge you to keep asking the good questions and insist on the good answers that you can understand from the doctors. it's our lives and it's all we got!
love and blessings,
chere
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Old 01-23-2004, 01:34 PM   #3
jessica
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hi-just wondering, are you on chemo w/herceptin?or just herceptin alone?if herceptin alone, i don't think you need any of the pre-meds, including decadron.i had liver mets as well, and when i was on taxol/herceptin, i had the pre-meds first.since i'm just doing weekly herceptin now (since 9/18) i don't have the pre-meds before the herceptin.i tried the triple dose herceptin (once every 3 weeks)but felt miserably flu-ish w/deep muscle & bone pain.i just took tylenol for that, but since then i'm back to weekly & all is well.
as for how well your liver is tolerating tx...everyone is different, but i did 49 weeks of chemo and had normal liver function the entire time.the body is incredibly strong, and so are you and all of us here.keep the faith!
prayers, faith & courage,
jessica
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Old 01-23-2004, 10:54 PM   #4
Kitty
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I agree with the others....no chem with your herceptin and if not, why not? Decadron is to help prevent reaction to chemo ....herceptin is not a chemo drug so I do not understand why you would be taking it. I too have liver mets and and taking taxol & carboplatin with herceptin. I too have no problems with my liver function at all - the liver is a big organ and is pretty forgiving. Herceptin sometimes causes pain in site of the cancer is that what you are experiencing.
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Old 01-24-2004, 12:46 AM   #5
Lisa
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Priscilla,
I'm afraid I'm with the others. I, too, have liver mets and am on Navelbine and Herceptin. I have never been given Decadron and don't understand why you are. Perhaps you tried a chemo drug and it didn't work and they left you on the Decadron? If not, my two questions would be 1) why am I not on a chemo (Taxol or Navelbine) and 2) why am I on Decadron?

Love and light,

Lisa
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Old 01-24-2004, 02:54 AM   #6
Anonymous
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I understand the Decadron is to prevent reactions to the chemo. What I don't understand is after the first few treatment, with no reactions, why can't it be stopped? The way I look at it its in pills so one has the control whether to take it or not. No one stands there to watch what I take. I prefer not to want the weight gain, don't like being hipper the next day and then come down the 3rd day with a sleepless night and so choose not to take it! If I have a reaction well, its no ones fault but mine however, I am willing to take the risk. Its my life and this I am comfortable with. We get enough benadryl so what is the big issue? Maybe, I will find out one of these days. Hugs
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Old 01-25-2004, 01:16 AM   #7
chere farr
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personally i think and it's only my opinion, that some of these meds are big business...consider the pay chain of pharmeseutacals and insurances and doctors... and this country isn't very patient interactive yet. i speak out every chance i get about these questions and concerns although i have been harshly reprimanded for questioning some things. i may have had cancer but i'm not stupid. it's my body and my life. i saw a cute poem... me and you are friends...
you laugh i laugh you hurt i hurt you cry i cry you jump off a cliff... i'm gonna miss ya dummy! keep asking the good questions!
love chere
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Old 01-25-2004, 06:21 AM   #8
Jackie
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Very interesting point about the pay chain for the multitude of drugs given us. I'm on navelbine/herceptin and asked to be taken off decadron (with no ill effects) after reading about that option here. Wondered why no one ever mentioned that possibility...that's part of what makes this site so valuable! I read that oncs purchase the drugs from pharmaceuticals for resale to patients and confirmed that scenario w/ my onc. Outrageous costs, but who questions anything like that in our circumstances? However, if there wasn't $ to be made, the research wdn't go forward!
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Old 01-28-2004, 03:25 PM   #9
Steph N.
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Chere wrote: it was helpful with the taxol but i see no value in taking it along with herceptin personally. i am doing just fine with no complications but the decadron has taken it's toll with weight gain

Ditto for me. Took the darn thing with the chemo, but both times on chemo i was able to get my dose much reduced. From 100mg each time as a premed to 40mg. At that time there was a worldwide shortage and my doc had no problem cutting my dose. Fewer of the weird side effects to deal with - stopped the weight gain on the lower dose.
Never was an issue with the maintenance herceptin only as I was never prescribed this once the chemo was finished.
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