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Iressa poll


Andrea

If you or your loved one is/was taking Iressa, which of the following apply:  

24 members have voted

  1. 1. If you or your loved one is/was taking Iressa, which of the following apply:

    • A. Taking Iressa with no side effects
      2
    • B. Taking Iressa with very minimal side effects
      15
    • C. Taking Iressa despite a lot of side effects
      3
    • D. Had to stop Iresssa due to side effects
      6


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So many people are on Iressa, off Iressa, have questions about Iressa, etc. So I decided to start this poll :)

If you have side effects, it would be great if you could list them in response so others might not feel as "alone".

Thanks! :)

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My mom is taking Iressa, not sure how much longer she will remain on it. She feels worse than she did with chemo, surgery, and radiation! Her ability to do anything is declining. She describes the following major side effects:

Fatigue

Lethargic

Weak

Nausea

Severe diareha. (Snowflake called it explosive, my mom calls it Thunder Mountain. I think she sees too much about Thunder Mountain on the news recently and adopted the phrase ;)

Very dry skin.

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Andrea

I hate to sound really stupid, but why is she on Iressa, anyway. Isn't she NED. Is there some study that shows it stops recurrance? I am not aware of it. Your mom had chemo pre surgery which should have got those wayward buggers and didn't she have rad pre and post surgery? I cant remember lol. Anyway, just wondering, why Iressa, since what it does do doesnt seem related to your mom's standing.

I may be wrong and I hope someone corrects me, if I am cos I hate passing on rotten info.

Sorry to be so bold!

added: I guess I can think of a theory where Iressa might fit into your mom's situtation but I will let others post to see if I amo on right track. Plus, I also thought there were more "proven" chemos if trying to halt reoccurance is the goal.

love

elaine

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Andrea and anyone else who may know...

My dad hasnt had to take Iressa as of yet... but I was under the assumption that Iressa is for anyone that dosent need chemo or radiation, and that it would stop the spread....am I wrong? Ive also heard that Iressa is chemo in a bottle... whats the deal with this stuff? I feel dumb but I really dont know...

Jamie

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There are two uses for Iressa. The first use, and most common and where most of the articles come from is for Stage IV when other treatments don't work.

However, there is a thought amongst oncologists and studies which show that if Iressa does good in Stage IV, it should be used earlier for maintence of NED (prevention of recurrance) during the first two years of remission when recurrance is so high.

It is chemo in a pill, but it is supposed to have less side effects than chemo. In my mom's case it is having more side effects :)

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I am currently on Iressa. I've been taking it for about 2 1/2 months. I have had very few side effects, and definately feel a whole lot better on Iressa than with any of the chemo's I've been on.

I have a little bit of dry skin, an occassional pimple and diahrea off and on, but nothing too bad. I also get very tired, but still not as bad as chemo.

I had my first CT scan after being on it for 2 months and it showed some shrinkage in my primary tumor and stable for the "spots" in the other lung.

I am very happy being on this. A pill once a day sure beats those horrible IV's, low blood counts, red blood cell shots, white blood cell shots........ I just pray that I can stay on it for a while.

Hope this helps!

TAnn

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Hebbie,

I completely forgot abuot that. The reason I ask is because my Dr has refused to write rx for it since I have not done other chemos. I doubt if I could aford it since I don't have RX insurance, but I thought I would try it and if it seemed to work then I could petition the drug company or something for some help.

Anyway that's why I asked because I need some "ammo" to try to get a rx.

thanks all

elaine

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Elaine -

My Mom is taking Iressa without ever having done chemo or radiation. Her doc didn't even question her when she chose that as her first line vs. radiation (chemo not really discussed).

On another note, a guy I work with was able to get the drug Co to foot the bill for his mother-in-law who was retired and had no other insurance but medicare (who won't cover it). They had to submit some paperwork - proof of income etc but they paid for as long as she was on it (9 months). I would be more than willing to contact him for you if you want more information! Just let me know.

Much Love,

Amy

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Amy

Thanks. First I need the RX and I doubt I am going to get it. Mainly because my onc knows I can't afford the Iressa and says that unless I have done other chemos or I am near death or severely disable because of my rx, the drug company won't consider it as medical emergency. I have tried getting some prescription help in the past and was not successful. It seems we are just above the guidelines; IF I were taking all the prescriptions I probably need (EXCLUDING IRESSA), we would have NO income, which is what is frustrating.

Oh well...

Thanks for the info. I will keep all the cases of people who have not had chemo or rad and stlll get IRESSA together so I can try to convince the DR. I also read where medicare is now paying for IRESSA; am I wrong? I thought I read and posted a news article that said that..

Because of that, I thought about petitioning my HMO and requesting it because if Medicare is paying for it and medicare has no prescription coverage, then the HMO should also even for patients without RX coverage. It isn't fair that some people can't have a treatment just because it comes in pill form and not drip form. I think in the end IRESSA is actually cheaper than chemo. Not all oncs like it because they don't get a piece of IRESSA. Much of their incomes come from buying chemo drugs at lower prices and then dispensing them, from what I have learned. I am not saying this is what is forefront in most oncs minds, but I do think it enters into their minds--

thanks

I was raised 12 miles north of Kansas City, so you are in my hometown. Isn't it a great place????

love

elaine

Elaine.

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My hubbie started Iressa June 6th and has very minimal side effects. He has a slight rash on his chest which is diminishing and the strangest part is the skin is peeling from his fingers and hands (like peeling from a sunburn). He uses skin lotion and is not at all bothered by it. His doctor thinks the Iressa is working and is keeping him on it for now. We have our fingers crossed. :D

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My husband started Iressa on June 11 (5+ weeks) and has minimal side effects. He started with a pretty angry rash on the shoulder where he received radiation and had slight rash other places, but it has all subsided now and is very minimal. He uses a little over-the-counter hydrocortisone cream and is not bothered by the rash at all. Very minimal problem with diarrhea. All is well.

Peggy

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Andrea,

Earl had all the side effects your mother is suffering. In addition to DRY skin he also had peeling of the skin on one finger. I think he would have put up with the side effects if the Iressa had worked. Unfortunately, it didn't for him.

The most important thing is to find out if the Iressa is doing its job and if it is, is your mother willing and able to put up with these symtoms.

Tough decisions.

Love,

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Andrea,

I feel for your mother, I empathize with her (and I wonder if it is working as a "diet aid" for her like it did for me....).

My oncologist put me on Iressa after surgery and radiation as "preventative medicine". I was supposed to take it for a year to suppress any new growth...and managed for almost two months.

My side effects: yes, EXPLOSIVE diarrhea, fatigue (coulda been that diarrhea that got me up all night long...on the flip side, NOT waking up with it would have been worse), pressure in my eyeballs, brittle/paper-like nails (finger and toe), hair loss, rash/acne from bosom up and working its way down as well, memory loss (!), headaches....

So I'm off it, have been for a year...and wondering what the LONG-TERM side effects are since I "enjoyed" all the short-term ones...

My face will never be the same - it's red/blotchy and breaks out fiercely anytime I attempt to wear make-up, I have diarrhea more often than not, memory issues, fatigue.... Hmmm...

Two years is a long time for your mother to be miserable. My oncologist took me off it for a month to see if the symptoms eased up without the drug - yepper...so he took me off the trial. He told me that if I need it in the future, it's still an option, second time use doesn't seem to be so bad on a person.

Good luck! I hope the ickies either ease off or she gets off it...

Becky

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Thanks everyone!!

Becky--it is a diet aid for her, she is losing weight!

Amazing how many differnt side effects one pill can have on so many. I guess we shall see waht the onc says. I like what your onc did Becky, took you off to see if it gets better. That is what we might have to do.

We are so bummed that the clinical trial he wanted to try for maintence closed just as she was ready. Bahumbug!

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I'm not sure if the clinical trial you said had closed is the same one, but my oncologist at the Mayo Clinic - Arizona - was suggesting I get in their clinical trial for Iressa when I first saw him in May. I was diagnosed with earlier stage lc and I think this trial may be to explore that use to go along with the usual use in later stage lc. In the end I was restaged and am doing radiation and chemo because PET showed one or two lymph nodes "hot", so we put any thought of the trial for Iressa on backburner for now. It might be worth checking it out, though, I know they had a clinical trial going as recently as June through Mayo. May enable someone to get it without the exhorbitant cost. Good luck!

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Thanks for the info! The trial was for something else, not Iressa. The onc said if she didn't qualify for teh trial for whatever reason, Iressa was teh back up. Just a bummer b/c he was so excited about the trial

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My brother continued taking Iressa as long as he could get prescriptions from his onc. One day his onc said,it is not working any longer. He had no test to support this. The test actually were done after this comment,and were found to have stabilized the tumors. As long as he took it every day,they did not grow. When told that he could not get another refill,he decided to take them every other day, so they would last longer. That is when the tumors started to grow again. And spread to other areas. He did have side effects,but felt it was worth it. There was shrinkage and stabilization when taken properly.

When answering the poll,there was not the option to answer as follows: oncologist make more money when giving chemo as treatment. There is no profit in writing a prescription every few months. Doctor took patient off Iressa while stabilized.

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  • 2 weeks later...

My son finished up his last chemo yesterday. We saw onc today. The nodule has shrunk and cancer has not spread. Dr. said since Terry was so young and was doing so good, he wanted to start radiation right away. We didn't have this option in apr. 04 as mass was into lymph . Does this sound right to you? He is submitting for iressa to be approved by ins. co. If it is he is going to put him on it. My son is still staying with me and we still have his wife in nursing home althou she is going down hill there. He is really down. Today was their anniversary.

Terry's mom (jay)

diag. with nsclc in april 04 stage 4

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