Mark - North Calif

Hi Folks, Sorry, I misread Snowflake's message. After two months of treatment (not 2 weeks as I stated), I believe bad side-effects can happen to those with sensitivities to a drug. I didn't mean to imply that some people who stop taking a drug don't continue to have issues. In my case, I've been very lucky. Hope this clarifies my note. Mark

Hi All, I'm responding to Snowflake's question but thought this would be of general interest to everyone. In my case, the Iressa side effects consist of gastro-intestinal problems, primarily of daily and frequent diarrhea. Bleeding of the nose and gums also occurs at times. My skin turned dry and I have acne outbreaks on occasion. I now have dry eye syndrome which may be related to the drug. I take other drugs for a heart condition so there may be interactions as well. As an experiment, my Onc asked me to stop taking Iressa for a week to see if the side-effects were curtailed. The results were dramatic, all side-effects diminished within a few days. To be honest, given these results, I can't see how anyone who took the drug for 2 weeks could have lingering side-effects. I believe Iressa saved my life and am thankful I still have access to it.

Hi All, I do appreciate all the posts. I have a couple of replies to specific individuals which may interest the group. RY: I'll wait a bit before PM'ing Lisa O. ACP: Sorry to hear that Iressa may be failing your Mom. My Onc and I are watching for the signs also but so far no change. My Onc told me that he knows of very few who have managed to stay on Iressa this long. That's quite a statement coming from a clinical professor at Stanford Med school. Hope your Mom can move to Tarceva which works in a similiar fashion. Ernie: I noticed you're located near Naples, FL. I recently moved to Cape Coral a few miles up the coast of FL from you. Looks like I have to update my profile again. BTW, I still go back to CA to see Onc and for testing (CT Scan, etc). It's a bit of a pain and expensive but I can't argue with the success so far - maybe I'm a bit superstitious . Also, trips give me a chance to see & stay with ex son-in-law (an ENT Doc). Regards, Mark

Hi Everyone, Thanks for the posts. I guess 'going strong' is a bit of a misnomer. A better way of stating my situation is to say I'm still happy to be functioning.....there are many side-effects and they are getting more severe & annoying with time. I'll keep taking Iressa as long as it works. BTW, I was lucky enough to be placed in the Astra Zenica 'compassionate drug program' so continue to have access to this drug. I realize Iressa is off the market now and has been replaced by Tarceva. I'm still interested to hear from any long term Iressa users. My message to everyone is never give up! Regards, Mark

Hi All, I haven't written for quite some time but thought my current status would help all with their battle. My condition has been 'stable' now for almost 4 years thanks to excellent medical care and Iressa. Started taking Iressa in 2003. Aside from the 'normal' side-effects, I've been able to stay on my daily dose without too much difficulty. Wondered if anyone else has been taking Iressa this long and what has been thier overall experience. Regards, Mark

Hi All, I have a neuropathy problem with my left foot. It is numb on the outside edge of the ball of the foot. It's not causing any serous discomfort nor is it impacting my ability to walk. But it is a bit troubling. Onc says there is no history of Iressa causing this. I can't decide if it's due to Iressa, previous chemo or a simple injury. I've been on Iressa for almost 1 year and this condition just started within the past month. Anyone out there experience the same thing with Iressa? Thanks, Mark

This question I had to respond to I was diagnosed with stage IV NSCLC on 11/2002 but the clock actually starts with the first diagnosis which was 8/2001. At the time of the restaging to IV, my son-in-law who is an ENT Dr told me privately that I should go out and do those things I've always wanted to do because time was short. My Onc guessed I had somewhere between 6 months and 1 year based on his experience. Second opinion from Stanford agreed with my Onc's estimate. As you can see, I'm still here and working my usual 60 hour work week, riding my bike 10 miles per trip, etc. I'm feeling well and my treatments seem to be working. So, are all the Dr's wrong? Of course not if you study the statistics. But they are only statistics where some people live longer and others not. My point is these are just numbers which are influenced by many factors (e.g. general health of the patient, age of the person, other complicating health conditions, etc). As others on this chain have stated, don't let the numbers get you down. BTW, when I was 40, my cardioligist gave me no more than 2 years to live based on the condition of my heart's arteries and family history. Even after 3 angioplasties, he was still holding his position on this prognosis. Well, he was wrong too! Hope this helps, Mark

Hi Again, Just reread my reply and realized that I may be off by 10X in my estimates for Xray & CTscan resolution. Even if they are 10 times more accurate, they will still miss very small tumors. That's the state of today's technology. Regards, Mark

Hi, If memory serves me well, Xray's can only resolve images to 1 CM and CT Scans are only effective to 1 MM (based on the technology). So to answer your question, it is possible to miss a very small tumor with both methods in the early stages of the disease. I'm no expert but I believe only a tissue analysis can confirm a suspicious Xray or CTscan image. Hope this helps, Mark

Hi All, Here is something to ponder since Iressa is working well for me. I am a male and have adenocarcinoma with NO bronchioloalveolar features. Also, I am a former smoker. That pretty much is at odds with the findings of this study. The message here, I believe, is that everyone should try Iressa! Yes, it's a lottery but some do manage to obtain good benefits even when they appear not to be a good candidate for the drug. Regards, Mark

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

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

Hi All, I'm a former smoker and do sympathize with Fay's plight. Every time I announce I have lung cancer, there is someone (including MDs) who ask if I smoked. How irritating that must be to a never-smoker! Anyway, I believe the irony is that some day we will discover that all those fumes spewed out by cars may have a strong impact on LC formation. Just my 2 cents, Mark

Hi Don, Technically, you're right...but I always start the clock at the time of the reoccurance since that was the event that triggered the 6 month prognosis. Obviously, I'm not complaining Mark

Thanks everyone for the kind messages. I have buried myself in work thinking that would keep my mind occupied. For the most part, this strategy 'works' but I do catch myself looking over my shoulder and wondering what's next. While exercise has been very beneficial, I do acknowledge that there is a higher force working here since I was given 6 months to live over 1 1/2 years ago Regards, Mark

Hi Dave, Good news and worth sharing with the rest of us! Wish you a speedy recovery! Mark

Hi Again, I have adenocarcinoma, not that weird name I wrote in the last message. Also, BAC was discounted in my case....Stanford Medical Center confirmed this. Regards, Mark

Hi All, I appreciate the responses received - thanks! To answer a few questions: My cancer is diagnosed as Ednocarcinoma - multiple biopsies confirm this for both the initial diagnosis as well as for the reoccurrance. I weight about 25 lbs more now than when I started chemo - honest! Dr's theory is the weight gain is caused by the large amount of steroids taken during chemo. My theory is I eat too much now My favorite form of excercise is riding a bike. But as Joe points out, it's not the form of excercise but how hard you push yourself that counts (within reason, of course). I ride hard enough to work up a sweat and raise my pulse. Normal ride for me is about 10 miles - not hard to do on a bike. I never avoid riding up a hill but look on it as a challenge. During 'standard' chemo, riding uphill was intensely difficult. Most times, I had to walk the bike. Even today, I still have difficulty riding up hills which posed no problem a couple of years ago - could also be age . Anyway, I believe excercise is important. Hope that answers your questions. I need to get back to work for awhile Regards, Mark

Hi All, Haven't been on this site for some time, too busy with work and other things. Anyway, for someone with stage IV NSCLC, I received very good news. Just found out that all tumors scattered across both lungs (5 total) are shrinking and largest of the lot has totally disappeared! Both my Onc & I were flabbergasted and stunned!!! He went back and reviewed all CT scans for the last year with radiologist to confirm results. It appears that my first chemo session started the ball rolling (CarboPlatin & Gemzar) and the second regime of Iressa continued reducing the tumors. Since tumors were small with the largest ~1 cm, it was easy to overlook the reduction in size. BTW, this was a reoccurance of an earlier stage I episode in Nov of '01. Anyway, I firmly believe that excercise had a hand in these results. It's nice to be able to pass on good news....Onc kept pumping my hand in congratulations until I had to pull free Take Care, Mark

Hi Howard, I've been taking Irissa for about 6 months without bad side effects, just the usual diarhea and acne, certainly side effiects I can live with. I'm happy to say that my tumors are reducing in size. Whether that's due to Irissa or something else is unclear....this is human medicine after all. My Onc did notice that the tumors started reducing in size after the usual dose of Carboplatin and Gemzar. So, my suggestion to you is to consider the 'normal' course of chemo treatment first. BTW, my Onc gave me about 6 months to live (Stage IV disease) in Nov of '02. So, I'm way ahead of the game . Best Regards & Good Luck, Mark

Thanks everyone for your reply. First, I want to say that I respect and appreciate the suffering and pain Cancer patients endure. It was not my intent to diminish that physical reality. I have experienced that first hand myself. What I wanted to do was separate what is a scientific and physical reality from the more abstract position. The use of the word survivor is NOT a scientific term but actually a marketing term introduced by psychologists who have no apparent means of actually curing or treating cancer. We are all patients and have to live with the statistics of the disease. That is the only point I wanted to make. Sorry if I offended anyone. BTW, in other regions of the world, Cancer patients actually live longer by dealing with the scientific reality. Regards, Mark

Hi Everyone, I'm new to the site and simply want to share my experiences with NSCLC. I would like to exchange therapy information and results. First some background info: In April of 2001 I came down with what I thought was the worst case of flu possible, night sweats, fever, etc. Attending emergency room doc totally missed the shadow on the left lung and prescribed antibiotics. In Sept 2001, my cardioligist performed my 3rd Angioplasty (I've have a life-long history of cardiac problems, mostly caused by bad genes). Procedure was a success and I returned to work in two days. Ater one week, felt diminished lung capacity, coughing, etc. Went back to the emergency room, had another lung xray and discovered I now had lung cancer. Further tests revealed stage IA NSCLC. Lobe with tumor was removed surgically in Oct 2001 and I was declared cured. My case was followed up by my pulmanalogist. In Nov of 2002, CT scans showed multiple tumors in the remaining left lung and a tumor in the right lung. Bingo....I now have stage IV LC. Further needle biopsy confirmed diagnosis. All tumors are very small (less than 1cm). Currently I'm in the 2nd chemo cycle of CarboPlatin & Gemzar and also receive Anzemet with Decadron. Please be aware I am not complaining about the medical treatment I've received. For the most part, I have the best medical care possible (Physicians in the immediate family). I have read some of the threads on this posting and can relate to the patients who continue living life as almost nothing has happened. In my case, I now work 50 hour weeks instead of the normal 70 hours. My Oncologists have suggested taking it easy and doing what I have always wanted to do. The fact is I like my work and am doing what I enjoy (at least for now). I do travel a bit more with my adult daughters and plan to 'retire' in Europe sometime in the next year. I still ride my bike 10 miles in a session and have gained some weight due to the Steroids. Overall, I feel better today than I did two years ago, no coughing or any other bad side effects. Just wish Chemo was more effective for me. Tumor growth is arrested but I had hoped for more. I know I sleep much better than my daughters. I try to explain to them that I have lived a very full & wonderful life up to now and will do all in my power to continue living. That's the best I can do. Guilt, blame, sense of victimization, survivorship, all these terms have NO relevance for me. This is a disease like any other and needs to be faced head-on with no pschological impediments. The rest of the industrialized world deals this way with illness, why can't we?