BoBennett

I was just on a hunt to see where you’ve been and I obviously missed the post. Hope your wife is doing better. Have to comment on the up to date info February 24, 2005 issue. Way to stay on top of what is coming up. I read the findings you posted. It seems like daily there are groundbreaking breakthroughs. My take on most of them are they are kind of like a Rube Goldberg thing. A little dust on the marble screws it all up. They often work but there are always little tiny things that throws them off track, so I tend to not pay a lot of attention to the initial reports. However since that drug may be on my horizon I appreciate the information. Bo

I made three trips to the ER in five days due to pain from bone mets. I understand and hope the pain leaves quickly. Following treatment, Carbo/Gemzar/Zometa the pain started subsiding inside of a few weeks. For the large part I’ve heard many people talk about the relief they got from while using Zometa. Hope it helps. Good luck in your fight Bo

I’m way behind on the Tarceva information, but I did found some stuff I thought was interesting and I don’t think I’ve heard it mentioned. The info I found was dated, and this is the one of the links that was speaking of some connections. http://www.medicalnewstoday.com/index.php?newsid=6651 I was searching info on bronchioloalveolar cell carcinoma and the Tarceva thing kept coming up. Basically the sources were saying that Tarceva worked well for BAC and for those who never smoked. This was the first I heard of Never smokers having better success. I was surprised by this information, working specifically, ( possibly) for those with BAC and never smokers. One more thing to consider. And I have a question Bo

I was on Carbo/Gemzar for 6 months, I think I had a little thinning of my hair. Even if it was thinning it kept growing. From my experience 100% have not lost hair, though I’m sure some out there have. Bo

I have no direct knowledge as I ended up not getting one,, yet. I was in a similar situation a while back and all the feed back I got and all I heard was get one. I have heard talk of infections but that seemed to be unusual. All I have seen is the veins do stop producing as easily as they do in the beginning and it gets to be a hassle and painful when they have to poke and dig, and at one point I almost didn’t get my treatment cause they couldn’t get it. Also my hand s area is starting to be tender from all the holes they poke. I am at a point where possibly my treatments will slow up so I decided to wait and see, but I have to say I wish I would have listened to all those who said they got a port at the beginning. There are many folks here that will tell you what there are like. Look at Feb 2 post Port-A-Cath Risks and Maintenance Bo

Bruce, The prevailing thought is to eat what ever you want so you don’t lose weight. I look at it a little different. As many of us are on pain medication often in the beginning of treatment , and deal with constipation A diet rich in fruits and vegetables helps the overall situation. The chemo presents it own as to the constipation issue. I wasn’t eating at the onset of treatment and when I got my appetite back, a month into treatment I started eating anything and everything. I went from feeling fairly good to feeling like I was eating all the time and packed. I slowed up eating and started eating the ol diet rich in fruits and vegetables and felt better in all areas. Good luck with the chemo and good luck in your fight. Bo

Wendy Interesting thought and great to hear you talk of utilizing this experience. I had a traffic experience that could have been bad and my wife always says that "this is a sign". It happened the day I got the old X Ray. This is definitely a mind bending experience and hard to wrap your mind around. I was like Eileen at the beginning, I gained a tremendous amount of humility. Then it slowly drifted away as I began to feel better. But the thought remained and I am humbled that it could be worse and certainly was. I definitely made a change, my life is now geared toward living to feel better tomorrow. all else is secondary. Part of that gear comes from, I owe it to those that want me to hang around. Not just living in a surviving sort of way. It would be nice to start over again and treat my body with reverence for the future, so in the future I would have been healthy. I found out starting over is a state of mind and time. I’m never going to be a CEO or even a superintendent, so I no longer will push myself to be successful at a job, if I’m forced to go back to work. I gave during the big part of my life, no more. I will only do what I like to do if that brings “success“, great, if not, oh well. I don’t need the trimmings any longer. My goal is a healthy life so I can enjoy what I want in life. A few months prior to my symptoms setting in I commented to my wife I don’t want health without money. Man, did I back up on that. I also am thankful that I had years of enjoying the fruits of life and that helped me accept that its now time for a change. I didn’t expect to be here today and didn’t expect to ever feel good again. I wish everyone could enjoy my good fortune. Keep hunting for why, you’ll find it. Keep up the fight. Bo

I get the CarboTaxol every three weeks if I’m lucky enough that my counts are OK all but one time they were OK. For me the CarboTaxol have been a little more forgiving in the counts department than the Carbo/Gemzar, not much but a bit. I have a few days of bone pain and getting knocked down a bit but I go for a walk and the sore legs make me forget the other chemo stuff, so I’m happy with the treatments, and I’ll take this any day to active cancer symptoms. I told my Onc last treatment I would stay with this so its down to every two months now, I’ll get another scan late spring, if its good, again, I’m stopping for the summer to let my body catch up. When my onc switched me to taxol, my daughter, an RN who spent a few years on an oncology ward commented. “they are bringing the big guns out now”. Like a lot of folks have echoed, I think that its hit and miss, for the Oncs and us, we just have to make a decision based on what we see and hear or let them decide for us. I’ve seen to much to let anyone make my decisions. My question is, if Taxol is the big guns why didn’t I get it in the beginning. I had minimal symptoms in the chest area but immediately after starting taxol they went away, that included hacking up blood. As I gathered all the info I have heard manny agree that there is a small select group that does well, all doctors I’ve talked with have echoed that sentiment commenting on trails and stats, many of those who have used or are using it don’t like the side effects and talk as if they are very bad. Of those that use they are divided if it helped or not. If I read of a trial that talks of my position I would jump on it but considering that even some who do nothing stay stable, I couldn’t find a reason to chance the side effects. Thanks for the comments and information Bo

Hey Robd1 I can’t answer what the Onc is thinking but I can echo the prevailing thought. Chemo being systemic is more useful than radiation for overall treatment, in a later stage situations. However the size of tumor might be a reason for the onc suggesting radiation. Personally, (and I didn’t feel this way at the beginning) I am happy my onc suggested no radiation, only chemo, he suggested no radiation because the cancer was already out and about and said it would be too hard on me for just a result on the primary?, though no one ever seems to know if a treatment will be hard on them until they have it. One thing I learned early on was there were often no definitive answers to questions like these. Everyone, including doctors, has a different take on the situation. Your approach to learning and asking, IMO, is the best way to arrive at an answer. Good luck in your fight. Bo

I coughed up a very small amount each time when I would hack up, that went on for 7 or so months, then it stopped. My take was it is from the lymph involvement in the bronchial area. I got that, sort of, from doctors and nurses, but that’s just my take on it. If it means anything. I hacked it up for that long period of time and so far so good, other than it would sometimes scare the **** out of me. Yours could very well be from the surgery, just passing on some thoughts, don’t take them for gospel. Good luck in your fight Bo

Sorry if it sounded if I were implying that traceva/Irresa doesn’t work for other than non smoking Asian woman. Just passing on what I am hearing and what I hear and learn is how I base my decisions, not to say others don’t as well. As for those that are taking it and doing well they are certainly there as well as those who are not happy with it. All things seem to work for some sometimes and,,,,, In the future I will try and be more specific with passing on info. I didn‘t mean to imply that I wished I could take traveva/Irressa I meant to imply that carbo and taxol are working and why switch to something that is unproven , other than antidotal.. Thanks for the responses. Just passing on one piece of info. Glad its working for you TAnn Bo.

Traveca/Irressa/Taxol Just wanted to update my decision. My Onc. suggested I go on traveca or Irresa, he didn‘t say exactly why other than my last scan was a little on the better side. I felt he was inferring I have been on chemo long enough without a break and that maybe a break was in order. My take on Tr/Ir was that they were like most other chemo’s and such in that they sometimes work and sometimes don’t. Beyond that, Dr. Joe and my Onc both said that there is a small percentage, I think around 10ish, that respond well to Tr/Ir and the rest of the population doesn’t respond. So based on that and the info I got from here I elected to continue with the Carbo and Taxol until it warms up then break for a bit. My Onc said that non smoking Asian women respond best to Tr/Ir. I thought that was interesting. (My onc is a good guy but that was the most info I have received from him in 9 months). With all the trials and such it would be even more interesting to know what other types respond well and what are the percentages that way we could make better decisions on treatment. Anyone hear of those types who respond well. Bo I also wanted to say that without this board and the info it provides I don’t know were we would all get answers to our needs. Bo

IMO, I believe that genetics play a part in LC and cancer in general. My family, has a 27% rate, ( 22 members first line). But I wonder if that plays a part in survival? I’m betting it doesn’t. Bo

Peggy, No help as to why or what causes but I too get those leg cramps, in the calf area, they started after treatment. I am careful in the stretching department though they come on by themselves during the night. I made the connection to the cramps and chemo but I don’t really know. Bo

Shortly after I started treatment I noticed my hearing go better. Going by the TV Volume my hearing returned/increased by about 50%. anyone else have an improvement in their hearing? Could this be an effect of chemo? Bo

Bill, sorry I’ve nothing new to add to the port a cath, but, I found the pen thing and a few other things interesting. I have been wondering if, (since Tarceva is a pill and bought through perscription), the Oncs make any money off it. I don’t fault them for trying to make their business work, but, well you understand. It is another thing to consider when deciding to accept new treatments. Also do your wifes doctors actually claim the The Gemzar 1200mg. / carboplatin 200mg. delayed progression and if so do they claim that specifically or based on trials. Bo

Just for informational needs. My tumor has always been judged in centimeters and I hear a lot of folks talk in terms of millimeters. For those like me, not a good judge of these little increments and still learning about this stuff. 1.58 mm is a 1/16” 3.17mm is an 1/8” 6.4mm is a 1/4 “ oops 25.4mm is an inch 2.54cm is an 1 inch 10mm is a 1 cm The reason I am talking about this, is, tumors are not necessarily round. Supposing when a CT is done that for some reason or other the tumor shifts, it only has to shift a tiny little to make a difference. The size could well be biased by this shift. Many folks live and die by the reports. And I have listened when folks are concerned about 2 millimeters. Even if the tumor isn’t round, I would think it certainly isn’t smooth and rough edges could easily change the true measurement. A recent scan showed a 20% increase in my tumor size, I wasn’t all that concerned because, to me that is in the realm of a possible mistake. My new report talks specifically to thin side and fat side, not something that was mentioned in other reports, possibly because of nothing to compare with and it wasn’t known. I could be wrong but its something to consider, as reports often dictate changing treatments and such Bo

I wanted to put this link out here. http://www.mskcc.org/mskcc/html/11571.cfm?tab=HC It has information regarding many of the herbs and such we all look at. Good stuff for making informed decisions. Interesting to note, similar info was up on the American Cancer Society web site, sometime in the past 6 months it became unavailable? After a lengthy phone call the AMC folks steered me to this info at Sloan Kettering. I’m sure someone has passed on such info before but I just wanted to pass it on again in case it go lost.

Sorry to hear that type of news. You asked about results from Taxol, I had some luck with the Taxol. And I also had no luck with Carbo/Gemzar. Upon starting Taxol I noticed immediately a change in what and how much I coughed up and I took this change as positive and in fact new scans were encouraging. My daughter, an RN who spent a few years on an oncology ward commented when I started Taxol that “they are bringing the big guns out“. It is definitely hard to understand how and what type of treatments are determined. I’m also thinking about Traveca or Irrisa. What works for some? Bo.

Randi, What is SAHM? Interesting Q. I will say I haven’t a clue how my wife and kids and others are going to feel but my heart breaks when I think about my wife and kids. When my own mother died, (I only realize now, since diagnosis) I was not in the least attentive to what she was going through. I feel bad for that but my mother knew It was all about me and she still loved me, so I can only hope to try and lighten the load around me if and when I go. My Mom knew I loved her, done. I am so pissed that my mom continued to smoke and that offends my siblings and others. It doesn’t offend my mother. I sometimes confuse preparation with painting the house, when in fact I am more worried that they will take to much time getting past me. So as for preparation, I’m trying to let all know that I only want those I love to cry their eyes out and move on. Taking care of transgression is the priority and I only have one left and don’t know if I have the courage to confront it. As for when and if I go I want to go somewhere and be left alone, and if that goes against those that I leave behind, parade them in. Interesting thought, it goes with the territory. Bo

Thanks Debi, I meant I usually right click the info in, not out, as you can see I need the benefits of a spell checker that I think I know how to use, . But it does work dropping in like you suggested. Thanks. Now I don’t need anything, its great Rick Bow Not meaning to digress a thread but, Mr. Ry I am sitting in front of my computer with a sweatshirt and beanie on, nice picture.

Same with me Ry, white space on sides. Also my right click is not working. I ussually write a response, copy and paste it. Will the right click be functional? Bo

Yes Chuck Barris is surviving lung cancer. He was dianossed a year and one half ago with a tumor in his lung, had surgery, no chemo or radiation. He appears to be doing fine. Bo

My vote was no, but I wanted to qualify that with change its hard in the beggining, and once I get used to it, I'm sure I will adjust and like it. So ask again in a month. Thanks for all the work you do to keep this site going. Bo

Chuck Barris, gong show. Its interesting to note that those with money/connection and means to get all the latest, don't appear to survive any longer than those without. At first a down thought but then most of us don't have all that and that means were still in it, so,,,, Bo