beckyg

I just spoke with the oncologist. I had a bone scan on Friday because the pain in my ribs and sternum and back has been worse lately. He said that there is a "very small" suspicious spot on my lower right rib, but there is only one, and it is smaller than a dime. The radiologist things it looks more like trauma than tumor--like maybe it's an old break that never healed well. I can say that I have had pain in that area during the many episodes of bronchitis I have had in my life, so that's a believable explanation. Anyway, he doesn't recommend radiation at this point--thinks I ought to sit tight for a while and wait and see. He is also working on getting me referred to MD Anderson--he sent records down last week and is waiting on a call back. So hopefully that will get going before long. Becky

I saw the oncologist today because it became obvious over the weekend that my breathing was getting worse again. He sent me for an x-ray this morning to make sure there wasn't something going on there. No change from 2 weeks ago. He told me I could try upping the steroids and see if that helps--I am on a pretty low dose of Prednisone because a low dose was working when this breathing nightmare started. Hopefully that will do the trick and things will improve within a few days. He is also sending me for a bone scan on Friday--I have had pain in my ribs on the right side since I woke up from surgery in February, but in the last couple of weeks it has seemed worse. It is in a place where it could just be muscular--caused by all the coughing I have done in the last year, but he suggested before I got a chance to that maybe it would be a good idea to do a bone scan at this point. He said he should have the results by Monday morning--much faster than the bone scan I had in Houston in January--that one took a full week! I am optimistic because heating pads do help the pain, but I am still glad to have the test and know for sure. Keep your fingers crossed for me. Becky

Norme, I know they received the CT scans--my husband delivered them to the office in person. I have called and sent e-mail today. Evidently the office is closed on Fridays. I will attempt to pester them again on Monday. Becky

Most of the 20-30 treatments you have seen are for primary lung tumors. Most people getting radiation for bone mets get 5-10. Becky

Good question, David. When my daughter was about 8 months old and still nursing, I put her in bed between us on a Saturday morning when we both wanted to sleep a little more. Curtis rolled over facing her and she evidently wondered why men have nipples too. I found it funnier than he did--she had a powerful little suction method, and he didn't think it was a very nice way to wake up! Becky

Barbara---I am with you on the Tylenol--it is about as effective as candy for me. I hadn't thought about the liver effects of Tylenol--just that it doesn't do anything for me.

Check the Grieving Forum. Ada died recently.

Snowflake--the RFA doctor being slow is a battle I am having directly with the doctor. He is just choosing not to respond to me at the moment, so I guess I am about to start pestering him more often. When I first contacted him through the office, he responded directly to me by e-mail. We have exchanged e-mails a couple of times, but he has been silent since my husband dropped off my CT scans. Fay--the RFA doctor only has CT scans, so this error on my PET report won't affect that, but your point is well taken that the error could have caused me some trouble. At the moment I am just relieved that it is an error--I'll worry about fixing it next. My local doctors are great about quick responses, I think largely because we are in a relatively small town and they live here. If I call either the local oncologist or the radiation oncologist needing to be seen or with a question or whatever, things normally happen that day. It's only when I deal with the big shots in the big cities that I have trouble getting anything done.

I (finally) got a copy of the report from my PET scan from June. I read the title at the top of the report and began to panic, as it said, "Purpose: Restaging Squamous Carcinoma of the Left Vocal Cord." Of course I was thinking, I have adenocarnioma in my lung. Is this a new primary? Why did no one tell me about this? I didn't even know there was anything wrong with my vocal cords. I read the report. Nowhere else is there any mention of my vocal cords. The title has no bearing on the report. Evidently no one bothered to proofread. It did mention uptake all over the place, but only the lung was listed as most likely cancerous. The oncologist (and the report) said most of the rest was probably because of lingering effects of radiation and trauma from surgery. It did indicate that the tumor showed evidence of damage from the treatments, which was welcome news--the big shot lung cancer specialist in Houston led me to believe that the treatments hadn't done anything at all and that it had actually grown. I know these doctors are busy and that I am not their only patient, but I get so frustrated with how long it takes some of them to do anything. I contacted a doctor in San Antonio about RFA to my lung. He now has my CT scans and I am waiting for him to deliver an opinion about whether I might be a candidate. In some sense, I think, it has only been two weeks, but my goodness, those two weeks are precious to me! Thinking of you all, Becky

Whenever you change your profile, it changes in all your posts automatically. Becky

Cathy, There is a posting by John in the New Research forum about Radiation Toxicity management. For me, the irritation to the esophagus was the only thing i was really warned about. I took various medications for it and it wasn't as bad as I expected. But I now have radiation pneumonitis. I was warned that this was a "slight possibility" and that if it happened, it would be "like bronchitis." It is not very much like bronchitis--not being able to breathe is by far the worst part of my cancer treatment so far. Anyway, John's post is about some drugs that seem to reduce the chances of pneumonitis in those doing chemo and radiation at the same time. I would definitely ask about them. Becky

When I took Katie to school this morning, there was a note posted on the door that said there was a fatal accident on Highway 21 outside of town this weekend, and the mother and grandmother of twin 3 year old boys in Katie's class were killed. Their 12 month old sister was hospitalized but will be okay. The boys and their 5 year old brother were at home. It has never really impacted me to think that I could be hit by a car at anytime--that doesn't change the fact that I am fighting lung cancer every day when by rights I ought to be thinking about having another baby and enjoying my life in general. But this morning I read that and then got back in the car and cried all the way to work. I just kept thinking about those 4 children and their father--at least if lung cancer takes me out I will have had time to help Curtis plan for Katie. Prepare is definitely not the right word--Curtis and Katie will never be prepared, but they will at least have some warning. Becky

I'm glad to have you back! Take care of yourself and enjoy knowing that tumor is gone! Becky

I am glad she is going to the radiation oncologist. My understanding is that it normally does show up on the CT, but the bit about it only being he upper lobe not being enoguh to cause shortness of breath sounds like garbage--mine was just my upper lobe, and it was plenty to cause shortness of breath. I hope they figure it out soon, one way or another. Becky

I just got back from the oncologist. I had my first x-ray on Monday after 2 months of Iressa. The tumor has not grown and there are no new lesions. There is more scarring in that area (from that darn radiation!!) and I have a small amount of fluid in my lung, but I knew both of those things going in because of how I am breathing and coughing. I had hoped that maybe this time I would finally get to hear about my tumor shrinking, but I won't complain since it is at least not spreading. I am concerned about more scarring in my lung--radiation ended over 4 months ago. How long is it going to continue ruining my lung? Becky

Heather, I have had a small pleural effusion since the end of May, the first scan after radiation. The only time anybody has been concerned about it is when they were considering surgery--if it has cancer cells it it, they won't do surgery. Before I had it tested, the doctors all told me that fluid like that is a very common result of radiation. Becky

Glad to hear she is on her way home. I know we have all missed her. I was just thinking this morning that it ought to be about time for her to escape the hospital and get back to her own bed. Thinking of you both, Becky

Thanks Fay, I'll try it with chairs. That night the problem wasn't so much getting up off the floor as it was moving at all. I had just had to change the sheets on her bed (naptime accident) and changing the sheets, for whatever reason, wipes me out pretty thoroughly for a while. I am headed to the oncologist in about an hour for results of my latest x-rays. This is the first check since I started Iressa. I'll post when I learn something. Becky

A couple of comments. First, I did call my Texas Govenrment Relations coordinator for the American Cancer Society. I told her that I was an 8 month lung cancer survivor and that i was interested in advocacy. She said she would send me some things in the mail. She didn't know off the top of her head what oppotunities they had in my area, but that information would be in my packet. We'll see what happens. In response to Snowflake, I am torn on this issue too. I am all for programs to prevent people from starting smoking and programs to help people quit. I am also in favor of punishing tobacco companies for deceptive things we now know for sure they have done. The more I learn about the results of all those Big Tobacco lawsuits and where the money has gone, the more disgusted I am. But I hate for the discussion to focus completely on tobacco. Most of the people here hate that initial question--"How long did you smoke?" because of the implied "You smoked, you deserved it" that comes along with it. I am currently really resentful of the belief held by too many in the medical community that my cancer is an aberration because I didn't smoke and there is no point in focusing on people like me. Sure people who have smoked ought to have more screening than they do, but those who don't also need information about warning signs and they need doctors who take breathing complaints seriously. Maybe it's self-centered of me, but I can't help thinking when I read about new screening trials and such, "That wouldn't have helped me." I saw a program on the Science channel recently discussing a new theory about global warming. This scientist has a lot of interesting data connecting Earth's climate changes to sunspot activity. As a scientist, I found the theory very compelling and convincing. As a person who can't breathe and who is concerned about air quality, I have this nagging fear that current belief in the Greenhouse Effect is the only thing keeping governments really motivated in this area. I know there is no proof that pollution has any connection to lung cancer, but it has been connected to asthma and all sorts of other breathing issues, so it doesn't seem like a big stretch to me. My two cents. Becky

Becky, We have that one and have read it many times. Last night Katie was grouchy and was falling on the floor crying every time i told her to do something. Finally, exasperated, I told her, "Katie, quit crying! That's enough." Later, she wanted to play Ring Around the Rosie. I was particularly short of breath and told her I was too tired. She said, "But Mommy, Ring Around the Rosie is always short." Then I cried because I really couldn't do it. She crawled up in my lap and hugged me and said, "Calm down, Mommy, it's okay." Then she said, "When I cried before, you yelled at me." Of course I cried harder then. But by bed time I was able to get through her stories. Becky

Ada's death has shaken me far more than I expected. I didn't know her well, but I followed her story and the fact that she was still with us after everything she'd been through was a source of hope for me. She will be missed. Becky

Ask about radiation pneumonitis. If she has had a recent CT scan, there might be a "ground glass" appearance in the radiated part of her lung. Radiation pneumonitis appears anywhere from 1 to 6 months (or maybe longer) after the end of radiation. In my case, one morning I woke up so short of breath I was having to catch my breath after walking 12 feet or so from my bed to my bathroom. I found that the breathing treatments didn't do anything for me either, but steroids have made a huge difference. Becky

My experience with Taxotere was that it was easy. I sat in the oncologist's office for slightly more than an hour. When I left, I would go get some lunch and then head back to work. I was sleepy that afternoon because of the antihistamines they gave me in the pre-meds, but that was all the trouble i had. I only had two treatments, though--it might well have gotten worse. But after the Cisplatin/VP-16 combo, it was a dream treatment. Too bad it didn't work for me. Becky

Yea, Fay! I know how wonderful it is to be without oxygen. It's good to hear things are going well for you. Becky

I have a sign on my office door that says in big type "In the United States yesterday, 438 people died of lung cancer. I was not one of them." Several people, both faculty and students have commented on it. Yesterday a colleague read it and said, "I like your sense of humor." I told him I really didn't think of that as funny, and I have been thinking about it since. The sign is there for educational purposes for those who don't know how many people are affected by lung cancer, and it is also there for me--so every day I am reminded that 8 months after diagnosis, I am not dead yet, and what's more, I am still at work. I hate that my endurance level has dropped and I hate that when I tried to stop the prednisone, my pneumonitis flared up again and is not yet back to the point it was when I lowered my dose of pred, and I really hate that I have lung cancer at all, but I am still here, and it is good to remind myself of that. Have a great day everyone. Becky