I am interested in exchanging information with anyone who has a friend or family member who is being treated with Iressa (ZD1839). My friend has recently begun the drug therapy,and it would be really helpful to learn about the experiences of others. Time is of the essence.

My mother has just been approved for a phase II trial with Iressa. She has not yet started her treatment, but I would be happy to exchange information with you. Has your friend started treatment yet? What drugs has your friend taken? Mother has been on Taxol/ Carboplatin, Taxotere/ Carboplatin, Gemcitabine/ Carboplatin, and Navalbine/ Carboplatin. All have produced a remission, but the cancer keeps coming back. Are there others available that we havent tried that you know of other than Iressa?

My friend was diagnosed as stage IVb one year ago this month. She first had to deal with a brain tumor and underwent the Gamma Knife procedure. This was followed by several sessions of full head radiation to clear up any remaining spots. She then underwent a series of 6 chemotherapy treatments using taxol and carboplatin. Additionally, she has been taking certain herbal supplements for about eight months: MGN3 and Essiac Tea, and several others. She has been taking Iressa for about two weeks. She has experienced daily bouts of diarrhea, but reports that she is dealing with it by using Immodium and experimenting with what, and when, she eats.

[This message has been edited by richmoor (edited 02-20-2001).]

Six months ago my father was diagnosed with metastatic adenocarcenoma. At first he responded well to the chemotherapy and the tumor began to shrink. Several treatments later the tumor began to increase in size again. He was then given taxotere which did nothing but make him weak and very prone to infections. Now his doctor asked if he would like to participate in the experimental treatment of zd1839. We are very torn since we have do not have anyone to ask that has undergone the treatment themselves and have been unable to find anything regarding the success rate of this treatment. If anyone has any information, please, please contact me as soon as possible. He is in stage IV now and I'm sure that would have alot to do with the effectiveness of the treatment as well. Thank you in advance for any information on this matter.

My friend was forced to stop taking Iressa in the eighth week of treatment because of dibilitating diarrhea.

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My husband was diagnosed March 8, 2000 with non-small cell cancer in his lower right lung. Since he had never smoked, he had been treated for pneumonia, brochitis, asthma, etc. etc. for 2 years as could not convince anyone he might possibly have cancer, even though his Father passed away from lung cancer on Christmas Eve 1976 and his Mother had recovered from cancer. Needless to say, we were devastated. Gary was 55 at the time. He ate healthy, excercised, and had never done anything to abuse his body.
Gary's cancer had spread to brain, but that tumor was removed 3/24/2000 and followed with Radiation Treatments. As of this date, all is fine there. After that, standard Chemo treatment was administered until December 2000. The tumor had been held in check and was considered less dense. A PET Scan was scheduled on 1/3/2001 to see that the cancer had not spread anywhere else, as doctor was considering using radiation. However, the PET Scan confirmed our worse fear, the cancer tumor had now grown to fill the entire right lung, into the liver, and also into the spine. Gary met criteria to be in Iressa Program being conducted at M.D. Anderson Cancer Center in Houston, TX. He has been taking Iressa since January 29, 2001. His 1st follow up was February 26, 2001 and no change --- which was good, as meant tumors had not grown during month taking Iressa. His 2nd follow up was March 27, 2001 and although the CT Scan showed a couple small places in spine not on previous one taken, Iressa appeared to have kept tumors from growing again. It was explained that the small places spotted this time possibly had been there and were same as previous month, but because of how CT scan takes pictures of "slices" of body, these might have just been between views. Gary has the side effects of a rash that we are in process of trying different combinations of things - both prescription and non-prescription - that have doctors approval to try to control mainly the itching. Gary uses Imodium daily, as the diarrhea is rather frequent as has been reported by others taking Iressa. Also, Gary has been sick at stomach at times, similar to car sickness, but that has been going away without taking anything to treat. (Possibly caused by nerves?)
When Gary was first diagnosed, we both hoped for an immediate cure. As all lung cancer patients are aware, this rarely happens when not discovered until Phase IV.
Depression is another battle we are fighting. So many of the survivors of other types of cancer (I originally thought all were just one disease.....have sure found out differently!) never gave up hope. Some days are harder than others. Iressa may be the right drug that does over-come Stage IV Lung Cancer, or it may be the one that extends life long enough until something better comes along.
Will be glad to exchange information with anyone in Iressa Program or considering it or any other aspect of fighting Lung Cancer.
God Bless. Elaine, Gary's wife

Hi Elaine,

Just read you note about Gary and I'm very impressed with your attitude. I, too, am the wife of a Stage IV Lung Cancer patient. Terry was diagnosed on 12/99. We have been through a number of Chemos since then. He is now on Navelbine, and CPT11. These have made his blood cells go down, and he has very little energey.

We do try to keep our spirits up. Terry is 58 years old, and hanging in there. We never talk about losing this battle. I always try to tell him that he must fight for time. I know the statistic are against us, but may'be with these new drugs we can somehow get this into remission and some day lick it. If you would like to e-mail me directly, may e-mail is marge_hartig@prodigy.net.

God Bless you both.

Hi Elaine,

Just wondering how Gary is doing on IRESSA.

My husband, Terry, has just been accepted for the IRESSA trial, and I'm just hoping to hear from you or anyone else who has had some experience with it.

Thanks and God Bless
Marge

Dear Marge,
Glad to hear Terry will be given a chance to take Iressa. Gary is in middle of 6th series of pills. He has good and bad days, but is definately able to be out and doing more now than a year ago while on Carboplatin and Taxatere Chemo. There are side effects, but we have found combinations of things that work to keep under control. Gary's 1st problem was the acne (which has been totally gone now for several months.) He had a prescription for Clindamicin for it, but actually a prescription used for Shingles worked better to stop the itching, called Lidocaine Viscous 2%. The doctor advised us to use an over-the-counter antibiotic with it on the open sores to prevent infection. Another ointment that really seemed to work was Desitin (over-the-counter diaper rash ointment). It seemed to control the irritation as well as any of medications tried. The diarrhea has been the worst side effect. Gary takes Imodium (over-the-counter) for it, and has best results if just continues to take numerous doses. (Gary's Research Nurse has assured us that if needed a prescription drug could be prescribed but so far we have not requested.) For coughing, Gary takes little "sips" of Vicks 44 Cough syrup. At night, he sometimes takes the prescription Hydromet Syrup as it seems to help him relax in addition to relief of coughing. Gary goes thru spells of using a Nebulizer (breathing machine?) where he inhales the following drugs: Albuterol .83mg and Ipratropium .02%. They seem to help with lung congestion and Gary says he feels it is easier to breathe after using. For daily aches and pains, Gary takes 1/2 pill of Zyrtec Tab 10mg once a day. He takes Celebrex 100mg twice a day. [He stopped this one for couple days, and could really tell a difference so has taken every dose since]. If he has had a really bad day, he takes 1 or 2 Propoxyphene HCL 65mg at bedtime. He also has Temazepam 15 mg for sleep, but has only taken a couple times when felt uncomfortable at bedtime but not bad enough to think he should take a pain pill. At bedtime, Gary takes 1 or 2 Benadryl 25mg (over-the-counter) for lung congestion. [This also helped stop itching so he could go to sleep when acne was the worst]. The other drug Gary takes when needed is Megace 20ml for appetite. Gary was a body builder until diagnosed with cancer and weighed around 225. He ate large quantities of food every meal then, so now every once in a while we realize he is down to couple hundred calories and so he gets on the Megace for couple of days. Also, when he is just not eating much, he drinks Ensure Plus. Gary NEVER took pills/medications/prescriptions before getting cancer, so is over-whelmed with all the stuff stock-piled around the house for him now. He still tires out easily and gets depressed at needing so much rest. But after several bad days this month, we rode our motorcycles (Gary has a Gold Wing with Sidecar and mine is a Suzuki Intruder 1400) to breakfast one morning. We are enjoying sweet corn, green peppers, and tomatoes from the garden that Gary planted, tilled, watered, and takes care of on daily basis. I helped weed his watermellon and cantelope patch this week while he supervised. (He has trouble if leans over for long periods of time since the surgery a year ago to remove the brain tumor.)

We keep hoping for a miracle. Gary's tests during last visit to Houston showed that the tumors have not increased since taking the Iressa. All other vital signs are normal. Even if Iressa will just hold him like now until a complete cure comes along, we can continue to hang on. Would sure like to see our husbands beat this horrible disease. Our doctors in Houston have been very good to try to treat all side effects/symptoms as they arise. Also, they do not seem to be offended when we inquire about something we have heard about. They have explained why most of our suggestions are not the right course to take for Gary, but it has helped to know why. We will leave for Houston this weekend, as Gary has tests and doctor's appointment scheduled for Monday, 7/23.
God Bless,
Elaine

Hi Marge and Elaine,
I am doing well now. I just started on a clinical trial for ISIS and Taxotere. So far all I have experienced is severe heartburn from the ISIS and just a overall yucky feeling from Taxotere....nothing bad at all. I am hooked up to a small portable pump through a port in my chest. Its a little inconvenient, but other than that, I have been quite pleased with the drugs so far. I just got off of Taxol, had about 12 or so treatments. The last sessions where really painful and I am glad to finally be off of them, however I remains stabilized the entire time I was on Taxol. axotere is very similar, except the side effects are not as harsh. I hope this is beneficial to me. If my tests in five months from now show that these drugs have not helped me at all then I will look into Iressa. I have heard so many wonderful things about the trial and hope I either wont need it, or wont miss out on my opportunity to try it if Isis doesnt work. Other than putting your name in for a lottery is there any other way to get on Iressa. I am just worried I will have to wait longer than I have. Elaine, I think I read a posting from your husband months ago on Aol message boards. I just remember reading something from a body builder, I wonder if it is him. All the information you wrote on him is really helpful. I live in Albuquerque, NM and would love to go to MD Anderson for treatment, but my insurance wont let me. I saw Dr. Lee for a second opinion. It is really helpful to hear about all the drugs that they are using to make your husband feel comfortable. I have some of the same symptoms. My doctors weakness is pain management....You have no idea how helpful the information is for me. I would be interested in hearing about any new symptoms and prescriptions he gets....if you dont mind. mreed88693@aol.com
I am on a 50microgram durelgesic patch every other day for pain, as well as oxicodone and hydrocodone.
My chest crackles all night long and I get congested just when laying down, I wonder if the benadryl will help me. I take Ativan to go to sleep...but it doesnt really help. I get relax, but thats it. My nurse says that my doctor probably wont give me any sleeping pills as long as I have something pooling up...that I need to cough it up.
I am certainly not a body builder, but am 29 and have been pretty active. I used to be an outdoorsy person. So I know how drastically your life changes. My hairs all gone, privacy - due to a few interviews on tv and a few articles, I have no job, and no idea what my future holds for me....and for how long. I am so amazed that now all my concerns are about my medications and staying comfortable, convenience over anything else. I am at the least 30-40 year ahead of my time. I dont want to be standing in these lines yet.
It sounds like your husbands has a lot of energy. Does he take anything for it. I feel tired alot, but I wonder if it is bordom. Bordom brought on by depression or feelings of hopelessness. I dont think that this is anything that therapy can remedy either. I just feel it is so personal that I cant share that with anyone but my husband. How are you two women holding up? I know anything I whine about is nothing compared to what you both are going through. You are so strong. Steve, my husband too is the strongest person I ever met. He is an angel. I worry about him so much. I hope that if something happens to me, that he will meet someone as wonderful as he is, someone who deserves him. He has so many years, and has had so much bad luck with women. I think eventually he will do okay. I will always be with him looking out for him, whether I am here or not. I love him so much!! Well thank you for listening to me babble. This had turned my evening from tears to complete relaxation. Good night. Take care all of you and your families. You all such beautiful caring people.
Michele

[This message has been edited by mreed (edited 07-22-2001).]