Guest Posted September 11, 2003 Share Posted September 11, 2003 My 43 year old sister Terri was told on her 43rd birthday last week (Sept 4) that she had Stage IIIb lung cancer. It's on 2 nodes and her right lung and around mediastinium area. MD said to try the clinical trial drug Iressa. Have read that it shrinks the tumor, but doesn't offer any extended life. I need to advise her quickly to get started, but side effects look horrible. Any advice would be surely appreciated. Jackie Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted September 11, 2003 Share Posted September 11, 2003 Hi, Iressa is no longer a trial drug and it is generally used as second or third line therapy in advanced NSCLC. It would not be current standard therapy to use as a first line therapy for a stage IIIb NSCLC patient. Standard treatment today would be a two-drug combination chemotherapy with more traditional drugs. The most common combination used today is probably carboplatin and taxol. Several others work as well. Chest radiation might also be used and surgery might be reconsidered if there is a good response to treatment. Is the oncologist looking at a clinical trial using Iressa as first line therapy? I'd probably get a second opinion. Sam Quote Link to comment Share on other sites More sharing options...
beckyg Posted September 11, 2003 Share Posted September 11, 2003 I agree with Sam that Iressa as a first line treatment is very unusual. i have been taking it for 6 weeks or so, and the side effects have been extremely mild. I have an acne-like rash that comes and goes on my nose and forehead; my scalp is sensitive, so I use baby shampoo and that takes care of it; and I am either constipated or have diarrhea, nothing in between. But my cough has improved and I have had no other problems. So I guess my point is, don't be afraid of Iressa because of its side effects. There are things to watch for, but for most people it isn't a problem. But do get a secodn opinion and find out about other treatments. Iressa is usually used when other things have failed. Becky Quote Link to comment Share on other sites More sharing options...
Guest Posted September 11, 2003 Share Posted September 11, 2003 Thanks for your feedback. There is a Protocol CTSU S20023: A Phase III Trial of Cisplatin/Etoposide/Radiotherpay with Consolidation Docetaxel followed by Maintenance Therapy with ZD1839 (which I believe is Iressa?) or Placebo in Patients with Inoperable Locally Advanced Stage III NSCLC. I'm not sure if we should just start with the chemo & radiation and see how that works. They told us that if she didn't opt for treatment she would be in serious trouble by Christmas. If she does opt for treatment he told us 50% of patients have more of an extended outlook. My father dies of stage 4 Melanoma Cancer 8 years ago and I wasn't really involved in his treatment as my Mom was. Now I am my sister's advocate and don't know which way to turn. Jackie Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted September 11, 2003 Share Posted September 11, 2003 Make sure you TRUST this DR. I agree Iressa is not usually used as a first response drug. I have sclc so my treatment is different than those of you with nsclc, but from reading others treatment protocals on this board they usually have 2 drugs used for several months. Most of them are pretty smart Please check out other avenues or talk with the Dr you are seeing about this. Good Luck, Cindy Quote Link to comment Share on other sites More sharing options...
luluc Posted September 11, 2003 Share Posted September 11, 2003 My brother has been on Iressa for 63 days,and has not mentioned any side effects that are bothering him. It is being used as a third line treatment. You can call the drug company for info on Iressa at 1-866-992-9276. They will send you an information packet,and answer questions you may have. Quote Link to comment Share on other sites More sharing options...
beckyg Posted September 11, 2003 Share Posted September 11, 2003 Jackie, The protocol you mentioned is exactly what I have been given. It is fairly standard treatment. For me, the hardest part was the Cisplatin--I really had a hard time with nausea for a few days after each treatment, but it was temporary. The radiation has given me long term problems--radiation pneumonitis is a side effect that is worse than I was led to believe. But look in New Research--somebody recently posted about a new drug that dramatically reduces the likelihood of radiation pneumonitis. Keep researching. This is doable and worth the fight. Becky Quote Link to comment Share on other sites More sharing options...
Guest Posted September 12, 2003 Share Posted September 12, 2003 Thank you everyone for your information! It has given me such hope and inspiration and I plan to take that hope and inspiration to my sister each and every day. Thank you and God Bless. I will continue to stay on this board. I just haven't registered yet. You are all in my prayers. All of our lives our in God's good hands and I wish you well. Jackie Quote Link to comment Share on other sites More sharing options...
Guest Posted October 4, 2003 Share Posted October 4, 2003 My mom is 76 and has stage III LC. We were told that she had to complete all chemo and radiation and only if they fail could she take Iressa. The chemo and radiation did not work and she began Iressa back in June. She immediately felt better. She even went back to work part time. I did some research and there is one fatal side effect to this drug which is ILD (intersitual lung disease). Japan has used Iressa for years and has reported several deaths related to ILD. Iressa has been used for a while in the USA as clinical studies and I have not seen reports of ILD complications in the US. Her oncologist did not even know about this side effect and he has been invoved in the clinical studies. I gave him printed material from internet articles We were told that Iressa only works in about 16% of people taking it and if you start feeling better right away it was a good sign it was working. Last week she started feeling bad and began vomiting white foam (did it on Wed & Thurs). her dr said he just did not know enough about Iressa. I think maybe it is related to acid reflux from radiaiton hurting her throat. she also is having severe headaches and back pain. i pray that does not mean it has spread. dr said last wk that xray shows tumor has shrunk. Has anyone heard of anyone vomiting white foam? what does it mean? Quote Link to comment Share on other sites More sharing options...
onelunger Posted October 10, 2003 Share Posted October 10, 2003 Hi...I agree with the others, Iressa is not usually the first drug used. I was on Taxotere for 6 months, then put on Iressa for a year, during which time I was able to return to work full time and had no side effects worth mentioning. Such an easy treatment, simply take a pill each day. It did stop working after a years time however and I am now back on the chemo regimen. I might also mention that here in Oregon a one months supply is $2,000.00, so if you don't have insurance for prescriptions, you might want to take a look at that, tho I do understand that the drug company, Astra Zeneca will sometimes help those in lower income brackets. Best of luck to your sister, Mary Quote Link to comment Share on other sites More sharing options...
Guest Posted October 10, 2003 Share Posted October 10, 2003 Thanks again for all your comments, unfortunately, my sister failed the breathing test and it was one of the inclusion criteria for her to participate in the clinical trial She currently has radiation 5x a week and 1 day of a 4 hour treatment of chemo. I know each patient with cancer has an individual treatment regimen, but for some reason, I don't think this is aggressive enough. We keep asking if this is just palliative to keep her comfortable. Wouldn't you think that at stage IIIb she would have a more aggressive treatment? She is currently in a clinical trial for drug study for helping anemia during chemo. Thanks for your input. Quote Link to comment Share on other sites More sharing options...
luluc Posted October 11, 2003 Share Posted October 11, 2003 My brother who was diagnosed last Oct, with NSCLC IIIB w/mets to the mediastinum, has had a new PETSCAN AND CT scan. The onc says that he CANNOT find the tumor! He has been on Iressa for 90 days. The onc says to keep taking it. There is always hope, no matter what stage. There is always prayers,too. That is what we believe helped, with the Iressa. Quote Link to comment Share on other sites More sharing options...
Guest Jeanne Posted October 23, 2003 Share Posted October 23, 2003 Hi Everyone! I am new to this site as of today and was on another page. My dad Don who is 71 years young was diagnosed with stage IIIB sclc this last May and underwent surgery after a PET scan showed a tomor about 2cm. He then had seven weeks of chemo and radiation every day for seven weeks. His treatments have been done now for over two and a half months and he is still quite tired, depressed and losing weight. Tomorrow morning he will be having another PET scan to see if there are any more cells or tumors that have enlarged or spread. He plans to go on IRESSA after that and is adiment about NOT having any more chemo or radiation. Does anyone know how soon you are supposed to start follow up treatments after completion? As I said it's been over two and a half months, and I'm concerned that his Oncologist has waited too long. By the way... has anyone ALSO had a bad or unpleasant experience with their Oncologist? My dad will meet with a new one on Monday as his current dr is a real jerk! Thank you for letting me join this chat room and for all of the great info I am getting for my dad. My mom, sisters and I have been quite concerned and confused for the last five months! God bless everyone!! Remember...I CAN DO ALL THINGS THROUGH CHRIST WHICH STRENGTHENS ME!!!!!!! Quote Link to comment Share on other sites More sharing options...
bluebayou Posted October 23, 2003 Share Posted October 23, 2003 Hello Jeanne.. Welcome to the site. Glad you found us. You will find great people here. Keep posting and good luck!! Quote Link to comment Share on other sites More sharing options...
flabet Posted November 6, 2003 Share Posted November 6, 2003 My husband's oncologist just keeps on trying new things with him and I can't imagine an oncoogist saying he will not be seeing the patient again. No matter what her condition. I think perhaps you need to find a new doctor. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 10, 2004 Share Posted March 10, 2004 Hello All, This board has been very helpful to me over the past 6 months, however, my sister Terri died on February 19. She was doing so well, but took a sudden turn for the worse and was put on life support only for a few days in order to get all the family together. There were 12 of us in the rooming, holding on her her, kissing her and praying. After they shut all the machines off she only lasted 38 minutes. If I can describe her death as "peaceful and beautiful" than those are the words that describe her passing. You could just feel God's presence in the room as we ushered our beloved sister in His care. It's still very hard to cope with, but we know where she is and we will indeed see her again one day. I wish all of you you are dealing with this cancer my hope and prayers, but also to give you strength that if you are right with God, He will be there for you and your families. Peace and God Bless. Jackie Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted March 10, 2004 Share Posted March 10, 2004 Jackie, So sorry to hear this. My prayers for you and your family. Dean Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 10, 2004 Share Posted March 10, 2004 Jackie, I am saddened to hear of your sister's passing. Your family is in our prayers as well. Curtis Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 10, 2004 Share Posted March 10, 2004 Jackie, I am so very sorry about your sister, my sister is fighting throat cancer right now and I am scared to death. Ginny Quote Link to comment Share on other sites More sharing options...
betplace Posted March 10, 2004 Share Posted March 10, 2004 Jackie, I am so sorry for this horrible loss you have suffered. Blessings Betty Quote Link to comment Share on other sites More sharing options...
Eileen Posted March 10, 2004 Share Posted March 10, 2004 Jackie---I am so very sorry for the loss of your dear sister my deepest sympathy to you and your family Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 10, 2004 Share Posted March 10, 2004 I too am so saddened by the loss of your young sister. I also read the string and am amazed at what seems to have been a not very caring or informed doctor, based soley on what was written here. Your family is in the thoughts and prayers of many as you travel the difficult road of grief Elaine Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 10, 2004 Share Posted March 10, 2004 Jackie, I am so sorry for your loss. You all will be in my prayers. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
GayleMarie Posted March 11, 2004 Share Posted March 11, 2004 My mother is doing very well on Iressa. She has taken 15 days of it and the doctor has prescribed her 30 more days. He was amazed Tuesday at how well she looked. The nurses too! She has not had the side affects and is able to go about her day normally. She has had the intraveneous chemo (Taxol/Carbo and Taxotere) and had major side affects. Good Luck with the Iressa as people tell me "when it works it works"! 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 Quote Link to comment Share on other sites More sharing options...
Guest Posted March 12, 2004 Share Posted March 12, 2004 My mother-in-law (71 years old) started out in 01/03 as Stage IIA Lung Cancer, adenicarinoma. They were about to do surgery to remove the lung when one out of ten nodules in the mediastinum tested positive for traces of cancer so the surgery was stopped. They instead tried chemo and radiation for 6 weeks which nearly killed her in itself. After she was somewhat back on her feet, the scans showed no improvement from the chemo/radiaton at all. As a matter of fact, she had progessed to Stage IIIB. It was then (in August 2003) that they started her on Iressa. So far, it's been almost all good for her. She does have occasional diarrhea and skin rash but the dr has been very helpful in controlling these. She has gained back 10 of the 20 lbs. she lost. She is back to an almost fully active lifetstyle. The scans have showed the tumor has not grown at all...it hasn't shrunk but it has not grown in six months. So, Iressa can definitely give hope. Six months ago, I never thought my MIL would have a chance. Now when I see her gardening or baking cookies and enjoying her life again, I thank God for the miracles in medicine today. Quote Link to comment Share on other sites More sharing options...
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