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Iressa


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My friend, a five year NSCLC survivor with brain mets, is beginning Iressa. Any hints about handling side effects or any other practical matters would be appreciated. Thanks, Judith Stein

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Hints for Iressa?

In my case, it was changing my wardrobe to "compliment" my oozy red face and neck...and I lost all the blonde hair on my head - male-pattern baldness, almost.

...and the Immodium is a good hint. When they say "diarrhea," it's a definite understatement. The qualifier it should have is "FLAMING"...Flaming Diarrhea (with capital letters)...bad enough to blast porcelain off the pot and peel the paint off the bathroom wall...and of course, not JUST a daytime thing, it'll wake you up in the middle of the night with the three-second warning...(Here I am, guilty of TMI Too Much Information.)

On the bright side, I could eat ANYTHING I wanted - it's not like the calories were going to hang around! :roll:

I had some extreme side effects with Iressa, oncologist said he had only seen one person with a worse rash...he ALSO said that if in future I need the Iressa, it probably wouldn't do the same thing. The person with the worse rash was taken off the drug for a month and when placed back on it, no problems.

...and hey, if it's working, what's a little diarrhea among friends? Just keep the lil' spray can of Glade on the commode for generous use after a sitting...

Good luck!

Becky

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Hi,

My experience with Iressa is a bit different. Just some diarrhea once a day, usually in the morning (I take the drug at night before bed). This could be due to the drugs I take for high blood pressure which cause constipation. Seems everything averages out :-) Worst thing is the skin rash and the motley look of my skin. One look at me and you know I'm taking a strong drug. But, Iressa sure beats regular chemo! No hair loss in my case, no upset stomach, no lethargy, healthy appetite, etc. I'm more active now then I have been in over 1 year so I'm reasonably happy with the drug. My Onc wants to keep me on the drug until it drops in price to $1/dose. That means I'm on it forever :-)

Take Care,

Mark

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Like Mark, my husband is tolerating the Iressa well. He looks like he has a sun burn (and you do need to use sun screen or it is worse) and he has the (you call that a rash?) rash. It is really little acne like sores. He has them very badly in his hair and they itch terribly. But he feels better than he has in a long time and it seems to be holding things in check.

All the best to your friend~

Rochelle

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Thank you all for your helpful responses. You must be aware of the comfort and invaluable information you offer. It seems as if there is a wide variation in side effects and also efficacy. My friend is waiting for the Iressa to arrive. Her insurance company is paying for it, but it required some effort to get it to agree to cover the cost. After surgery and brain radiation, which helped for five years, this is her last hope. She is very grateful to you all. Judith

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Hello,

Iressa has worked well for me. I have the rash...(also itchy sore type bumps) and a bit of nausea. Occasionally I am more tired than I can justify although I do have quite a bit of activity. It has held me stable since 10/21/02 and I really have had a pretty easy time of it.

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My mother started Iressa 2/26/04 and is doing good so far. Minor diarrhea but felt good enough to play cards last night :)

Keeping my fingers crossed for your friend and all patients on Iressa!

Gayle

___________________________

10/03: 76 yr. Mom diagnosed squamous cell nsclc

11/04-1/04: 4 rounds of Taxol/Carbo

1/30/04: CT scan no change in growth/new spot 

2/4/04: Taxotere (1 hour intrav.)

2/8/04: Bad reaction, bedridden with Thrush/Diarrhea

2/26/04: Starts 15 days of Iressa

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Hi Again,

Did forget the most irritating side affect. In my case, I'm experiencing in-grown toe and finger nails. My Onc agrees it's probably the Iressa. He showed me a Med journal with pictures of patients with the same nail problems I'm experiencing. Naturally, it's painful and just doesn't go away. Podiatry has no cure for this, just removal of the offending nail in which case it just grows back even more deformed. However, the results from Iressa are so good, I can handle this minor irritation.

Mark

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Dear Judith,

I hope that "Iressa" does the trick for your friend and that her symptoms are mild.

Thanks also to all the folks who posted here with their experiences, my husband may have to go on Iressa soon and being "forwarned is forarmed" as they say! , Paddy.

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