beckyg

Iressa has held my cancer stable. I have been on it now for a little over three months, The only side effects I am having are the acne-like rash on my face and on my legs--I have quit shaving them because they are so sensitive. (Good thing shorts season is over!) My doctor told me that Iressa has held some people stable for over 2 years (and it hasn't been around at all much longer than that!) I guess I think your dad's doctor is misled about the effects and side effects of Iressa. It may not be the best thing for your dad, but I would ask him about it again and get better reasons than he gave. Good luck, Becky

The cough is finally starting to improve. The breathing is marginally better--I am back to getting around my house without panting. It is taking lots of creative planning to get through class, and even to get TO class--walking that distance is tough right now. But I am waking up fewer times during the night to cough and when I am up during the day it is easier to cough stuff up. First thing in the morning it is still a lot of work to get things to move. But I am crawling out of this hole, and one day, hopefully soon, I'll get to be annoyed again by that tickle in my throat that gives me that annoying dry cough! Becky

Radiation was easy for me while it was going on, but I am learning now that everything that hurts is a direct result of radiation. My breathing problems are a direct result of radiation. Radiation may have kept my tumor from growing, and I try to keep that in mind, but mostly I am pretty negative about the experience. There is a post in New Research, I think, about managing radiation toxicity--check it out and ask about the drug mentioned. Radiation pneumonitis is way more common than my radiation oncologist led me to believe, and there are drugs out there than can reduce the chance of it. Becky

Ry--I finally got some of the Cold-Eeze yesterday and have been sucking on it every few hours since. I don't know if it is helping, but they don't taste terrible, and I am game for anything at this point. I have some Albuterol. I haven't been using it recently because I never can tell that it does anything, but I am back on it today--maybe it will help. Right now the cough isn't so much about "itchy throat"--that's what I have in "normal life"--when my Tessalon perles keep the cough manageable. Now I am just so full of phlegm that I dream I am drowning and sit stragiht up in bed coughing until goo starts coming up. I left a message for the doctor Friday morning; he called in some antibiotics then but forgot to call me to tell me he had done so. So I got them this morning. Maybe they'll help. Thanks for all your concern and suggestions. Hopefully I'll get a break in the next few days and start feeling better. Becky

Ray, I have been on Iressa since July, and it is holding my cancer stable. The only side effect i have had is the facial rash--like being a teeenager with acne. The doctors have said I should stay on it as long as my tumor holds stable. Becky

In my world, and this was true long before cancer, a cold is never a head cold. I get stopped up in the nose for a day or maybe two, and then it all runs down the back of my throat and the coughing begins. You know how on the bottles of cough medicine, it always says, "See your doctor if cough lasts more than 5 days" or something like that. In my world, coughs linger 6 to 8 weeks. I have no sympathy for people who cough for 5 days and are done with it. I have broken ribs from coughing. However, all that was before radiation. Now I couldn't breathe before that cold started. Now I am back to using the oxygen a lot of the time because I cough so hard and long I end up hyperventilating. I have been coughing for two weeks now, and so have my husband and daughter. Every time I breath in, unless I have just had a particularly productive coughing fit, I hear my breath creaking in my chest--I can just imagine the air I am taking in forcing stuck-together parts to open up. I have a parpetually bad taste in my mouth. Pregnancy left me with mild strss incontinece, which is easy to deal with if you are not coughing ALL the time, but as it is, I am gaining intimate knowledge of what a diaper rash feels like, in spite of the Poise pads. Well, I haven't coughed the whole time I have been ranting about this cold, so maybe if I crawl back in bed, I'll be able to sleep. Seems like I might be pushing my luck. Becky

BLT, I am currently taking 20 mg a day of prednisone as a treatment for the fact that radiation FRIED my lung. More formally, it is called radiation pneumonitis, and it is a much more common result of chest radiation than my radiation oncologist led me to believe. I have been taking steroids since July 21. I started on 10 mg, did well on those for 6 weeks, then things got significantly worse when I stepped down to 5 mg, so back up to 10. My breathing improved, but not up to where it was when I cut down to 5, so then I went up to 20 mg. Becky

I meant to post this last week and forgot. The doctor at MD Anderson explained a little about pleural effusions that I wanted to share. Evidently, we all normally have about 1/2 cup of fluid between our lungs and the pleural sac that surrounds them, for lubrication. That fluid can build up in cancer patients either because the tumor starts blocking some of the pores in the lung, so the fluid can't pass back and forth like it should, or because of radiation scarring the lung and closing the pores that way. In general, pleural effusion can cause shortness of breath and coughing, but it isn't in itself a big problem, unless there is a lot of fluid or there are cancer cells in the fluid. Hope this helps with some of the confusion out there. Becky

Greg, The transcript will be archived by noon tomorrow. I watched part of it, but had to go teach a class before it was over. I'll be interested to see what else he had to say. What I saw didn't cover anything I hadn't known for months though. Becky

It's good to see you back Gina, and especially good to know all is well. I had been thinking aobut you just this morning as I drove in to work. Becky

Ry, I had to laugh about the lizard comment. I hope he isn't feeling bad about that. My face is red and blotchy and I have a little on my chest. I hadn't thought about it as "lizard skin", but I like it! Becky

I had an oncologist appointment this morning and got both the flu shot and the pneumonia shot. My arm is already feeling a little sore. He was surprised other people were out of vaccine, but he said he had plenty and quickly brought me my dose. Becky

You guys are nice, but I think I'll still try to hold my tongue. I am afraid that if I start being a little bit tacky the whole avalanche will fall. I have had to quit reading the Grieving section altogether because ugly things come to mind when people post about very real pain. Two things that have legitimately aggravated me recently: My grandmother truns 79 next month. For years on her birthday, she has said, "Well, this might be my last birthday." No I hear through the grapevine that she says, "Well, I just hope I don't outlive Becky." The other? I was talking to someone I didn't know about lung cancer and I mentioned that it doesn't necessarily come from smoking ,since I never smoked. She said, "Well, doesn't that make you wish you had smoked?" I told her that I couldn't see why I would wish that I had spent years on a stinky, expensive habit that probably would have made my cancer (and certainly my breathing) even worse than it already is. The closest I get to that is that if I had been a smoker, my coughing likely would have been taken more seriously and I might have been diagnosed sooner. Becky

The longer I take the prednisone, the more reasons I can think of to hate it. (But there is of course, the bigger fact that without it I can't get around the house without O2 up my nose). I knew that it could make me mean, and I have so far been conscious enough of that possibility that my family hasn't noticed me being meaner than usual. But, boy, am I. I just manage to keep my mouth shut and not actually say what I am thinking. Last week a friend who has always been a couch potato wrote and said that she has been jogging--training for the Susan G. Komen Breast Cancer Walk. She is up to jogging 2 miles in just under 25 minutes. My first e-mail (which I erased before I sent) ranted about supporting breast cancer and how nice it must be to be able to walk 2 miles period. I have not posted much lately unless it is entirely about myself. I am reading and in my sane moments cheering or crying with you all, but I have made it a rule lately that if my immediate response is tacky, I don't write anything--no reason to subject anyone else to my rudeness. Once I get over this cold, maybe I can start dragging myself to the exercise bike. I need to do something to help expand my lungs so I can lose the steroids. Becky

I asked my oncolgosit the same question--he said absolutely I should have a flu shot! Now my problem is that every place I call is already out of flu shots. Somebody has to still have some, I just don't know where they are hiding! Becky

Yea Cheryl! I am so happy for you! Becky

I went back to MD Anderson yesterday for a follow up appointment. Last week I went and the doctor ordered a new CT of the chest and abdomen and a brain MRI. Yesterday he looked at them and said he can see no evidence of cancer anywhere except possibly the lung. I said, "What do you mean, possibly?" He explained that I have so much scar tissue in the right lung that it is impossible to tell from a CT what is scar and what is tumor. He said that the tumor is probably still there, but it could be entirely dead. He said the only way to tell would be to go in and biopsy it but at this point he doesn't recommend that--said I should just stick with the Iressa for a while. He also said that 6 months after radiation ends (next week for me) is when the radiation typically stops causing more damage, so it should be the case that my left lung and lower right lung should start to be able to catch up so my breathing will get better. He told me I won't be running any marathons. I didn't tell him about David P, but I did tell him that I really wanted smaller things--like being able to walk from the car to my office without having to take a break. Now if I could just go back to the annoying dyr cough I usually have, things would really be great! (I have a wet soupy cough this week. In my world, these things tend to drag out for weeks before they clear up.) But, as my husband keeps pointing out, my head is empty, and my cancer appears to be dormant! Becky

He didn't go into my other options at this point--he really wanted to wait until after I have all the tests done before we get into much. I didn't ask him about the RFA this time--will do that next week. He did say that the fact that I have been on Iressa takes me out of the running for a lot of clinical trials because several drugs in the pipeline work in similar ways to Iressa, but that there were several other research studies that I would be eligible for now and still eligible for if and when Iressa stops working for me. As for working--I have the greatest job, boss, colleagues in the world--all working to make things as easy for me as possible. Aside from that, as long as I am well enoguh to be able to be here, it makes a world of difference mentally to get up and go to work. Those months I was doing chemo and radiation and recovering from surgery were way more depressing than the months I have been back, and back then I was still happily hoping that there would be surgery and an "end" to this in the summer. The other part of it is that I have worked full time now for almost 18 months. Before that I was in graduate school, living on teaching assistantships and not paying Social Security. As of my last birthday, my disability payout from Social Security would be about $260 a month. I don't have disability through work because when I started here a healthy 29 year old with a lot of debt from school, I thought I would add that coverage later and pay off some things first. That gamble sure didn't pay off! I have to run and call the hospital here at home today. The doctor yesterday wanted me to stick around and have a CT scan and MRI there. I asked if there was a problem with me doing it in Nacogdoches--at my little hospital, I can make an appointment, wait for 15-30 minutes, have the test done, and get back to my life. At MD Anderson, well, let's just say the waits are longer. I'll keep you all posted as things develop. Becky

I am about to head home after my visit to MD Anderson. So far nothing much to report. The doctor was very nice and did spend a good half hour with me asking what I waswanting from him and and talknig to me about how I am feeling. He went on and on about how well I was doing--couldn't believe I have been through all the treatment I have been throguh and am still working full time and taking care of a 3 year old. I said that I didn't usually see it that way--I don't think of myself as a cancer patient, but as a 30 year old mom, and I do what I need to do and get aggravated at how my inability to breathe slows me down. He ordered more tests--I haven't had a CT for a while, and he wants a brain MRI. The capacity of my right lung is visibly down since the original scans in January, and he explained that the radiation has done that--just by making so much of my lung scarred and inflexible. He said that is also why my right shoulder has pulled down so much lower than my left, which is probably why my back and shoulder hurt so much. Anyway, he said that his recommendation, assuming there is nothing new that shows up on these scans this week, is that I stick with the Iressa for as long as it continues to hold me stable. He said there are plenty of things left for me to try, but that people have been remianing stable on Iressa for 2 years and more, and that may be the case for me. Anyway, I'll come back next week after I have these tests done and see what he has to say then. I get his point--I don't really like the idea of sitting here waiting for something bad to happen, but Iressa seems to be doing something, so I shouldn't knock it. Becky

Buttercup Bubblehiney.

I have been coughing for the better part of the last year. Right after my diagnosis, I quit for a few weeks, until I had surgery and it became painful to cough. Since the end of chemo and radiation, I have had a constant cough. Every now and then it is wet, but usually it is just the dry itchy kind. I have been diagnosed with radiation pneumonitis. I take 20 mg of prednisone every day and cough medicine every day, and I still cough. As soon as I get the lest bit out of breath, the coughing starts. I don't know when or if I'll ever stop coughing, so I guess all I can say is you aren't alone in dry cough land. Becky

Tami, The CT scans I mentioned are just typical CT scans of my chest looking for shrinkage of my tumor. I had a bone scan last week to check on my rib pain. The doctor thinks (after the bone scan) that my pain is muscular--maybe I started hurting after surgery in February and have been altering my posture since then and it has now reached a point that it is really bothering me. Believable since my Dad pointned out ot me last week that I am lopsided--when I stand these days, my right shoulder (the side that hurts) is noticeably lower than the left. Hang in there--we're all scared of having tests and of not having tests. Becky

With my local oncologist's help, I now have an appointment at MD Anderson for a consultation and cosideration for clinical trials. It took a while to get to this point, but now that they have the background information on me that they wanted, I am scheduled for next Wednesday. I am hopeful that something good will come of this. It has been nice being on Iressa and being stabel for a while, btu I am ready for another round of something more aggressive. In other news, I finally spoke to a human at the RFA Lung Clinic. It seems that the reason the doctor hasn't commented on my CT scans is that he deosn't have them. Perhaps they were lost in the mail. I said that was not possible since my husband hand delivered them to a receptionist in the office. After some time on hold, I was told that receptionist thought my name sounded familiar and that she was pretty sure she handed those scans to the doctor personally. He doesn't remember that but promised to look at home. You'd think that the office of a doctor who does surgery on heart and lung patients al lthe time would be so used to dealing with films that this stuff wouldn't be a problem. Grr. I can get more copies of those films (at my cost of course), but this is really getting annoying. No response on why they didn't call me back last week to tell me that they can't comment on RFA for me because they can't find the films. Becky

I just sent e-mail to the local paper and local television station telling them that I hoped they would feature lung cancer stories next month. There are pink ribbons all over town and breat cancer stories in the paper almost daily. I told both outlets that I would be happy to share lots of information. We'll see what comes of it. Becky

Heard from the oncologist last night. He had talked to MD Anderson again and they have agreed to see me. (I am interested in lcinical trials, and they wanted information about what I have already done and my current condition before they would agree to that.) He said I should be hearing from them this week, and if I haven't gotten a call by Thursday morning I should call him back. Becky