twodogs

I had my last PCI blast in January of 2003 and didn't think I'd ever eat or get off the couch again. Food and the thought of eating anything other than ice cream and cream filled chocolate Bismarks nearly gagged me. I dropped around 40 pounds and if I could make it to the mailbox and back in one trip I thought I was doing great. By June of 2003 I'd gained a little weight back and was strong enough to meet my friends for a fishing, drinking, story, (lie), telling trip on the Snake River in Idaho and Oregon. By November I'd gained even more weight and was able to join my brother and his sons for several local deer hunting trips. Today my weight is maybe five pounds over what I'd like and I'm still taking Epogen shots to keep my blood counts and energy up. Many of my old favorite foods and beverages are not even appealing anymore. That hasn't stopped me from gaining strength and weight though. You just find new favorites. In any case, things do eventually get better. It just seems at the time like it's taking forever. Just hang in there. Things do improve. Best wishes.

"That look", huh? You should talk to my wife. Nearly every time she even mentions food she gets it. I know she's plotting to make me eat something. Enjoy the upcoming weekend. You never know when something will fire off an appetite. Every once in a while I'll think of something or come across a food idea that seems attractive and I'll try it. I don't remember if I mentioned it in my last post, but, you need to take care of yourself during these times too. I have a bigger problem with her losing weight than with myself now. I'm holding where I want to be, but when I don't want to eat she doesn't eat. She/you need to eat regardless.

These weekend situations waiting for reliable results are just horrible. I read your post a couple times and sort of highlighted on the stable and even improving conditions you noted and less on the questionable. Hopefully you can change your focus to the good stuff for the time you have to wait for your regular doctor to get back. You noted that your white blood counts are 431. We must be using different scales. I'm anemic too and my whites were running around 3.2 - 3.6 against a scale where "normal" is 4.0 - 10.5. I've got them pumped back up to over 4.0 after a long series of Epogen injections. Not a whole lot of ambition heading into a three day weekend , huh? It actually looks like a good time to get rested up. I know I did last year and I won't be doing a whole bunch this year either. Best wishes on your results and enjoy the long weekend.

FWIW, it seems to me that all us cancer clubbers who've been through chemo and/or brain radiation have memory loss to some degree. It wouldn't surprise me if your dad, having had more than normal chemo, would have more chemo brain symptoms. I did a quick Yahoo search for "chemo Brain" and found over 1,000 sites. You may want to look at some there. I've got it and everyone I know who is likewise afflicted has it. I hope your dad is fine. My oncologist told me it is very common to be paranoid about anything that happens, BUT, to check back with her to make sure.

I underwent lung, (chest), radiation from June 26, 2003 until October 31, 2003 and, then PCI for most of December. After about the first two weeks when I was eating like a pig, (to compensate for cold-turkey smoking cessation), I began to gradually lose my appetite, senses of taste and smell and desire to eat. I dropped from around 185/190 to the mid 140's before I got my eating somewhat under control. I did have one good period, for most of November. That was between my last chemo session and my first PCI. Then I sort of dropped off again. I feel I'm doing much better now, hanging in at 163/164. That is a very good weight for me and all I need to do now is get back some strength. I'm still amazed at how little I eat or how seldom I "feel" hungry. I've also been lucky to be able to dredge some humor out of this mess. In addition to lung cancer, and as if I need it, I've also got a high blood presure problem. In order to maintain any semblance of eating during some periods I essentially lived on cream-filled chocolate Bismarks and ice cream. Both my oncologists were encouraging me to indulge to my hearts content. This, of course, was driving my cardiologist nuts as my cholesterol and triglycerides were running rampant. Currrently we're all just trying to get along. Hopefully, this will pass for your husband. It pretty much has for me.

I did. It was 15 rounds. Five zaps a week for three weeks. Last one on December 19, 2003. First, most obvious, affect was my white hair, ( I started graying at 21), started going away real fast during week 2. By January 1st I was cue ball bald. I started to notice some additional difficulty with memory tasks along about then also. I say additional because I was already dealing with Chemo-Brain. By February 29, my birthday, I had a head full of stubble about like a three day beard. Today my hair has come back strong and is the same color as when I was in my youth. I still struggle with memory tasks and have the same chronic fatigue symptoms so many of us endure. My most recent tests show no evidence of disease. I have a lot of faith in my doctors and their staff people. They jumped on me instantly as soon as I was diagnosed and treated me more like a close friend or relative than an obscure "patient". As ugly and miserable as this whole process is, at this point, I'd do it again. Not everyone feels the same about things and your mileage may vary.

Me too. I've been taking 25 mg on and off for a couple years and steady since January. I quit this morning. I've got a Cardiologist appointment next Tuesday and will ask then.

Wow. You shouldn't have used so much after shave. Don't you remember what hapened to McCauley Culkin in "Home Alone"? When my hair started coming back in, (after PCI), I had periods when my scalp felt pretty tender. I don't remember it being too painful or lasting very long. Good Luck on this. (Back off on the after shave)

Well, what can I say. I saw that quote some time back and purloined it for my "signature" on another BB. I've tried to find out who and where it came from with no luck. Nevertheless, I find it highly admirable and appropriate for use in our situations. KatieB, If it wasn't so darn long you could get it as a tattoo .

In my case we didn't have to go through much decision making. In just a matter of hours after my original diagnosis I was getting beamed up. I finished all treatments in December, including chemo and PCI. I am currently taking Epogen every other week for my anemia. Earlier this year I had what they call an "esophaegal dilation" to expand my throat and improve my ability to swallow. I believe the radiation scarring had caused it to become restricted. Still don't have a whole lot of ambition. I did make two driving trips earlier this summer. First was to the west coast and second was to Michigan. Not unbearable at all but nowhere near the fun it used to be. Probably not much help since the only real choice I had to make was to have the PCI.

FWIW, I went through a couple periods of similar symptoms during my treatments last summer. I had pretty severe cramping and the "drawing up" he's experiencing. I'll go back and see if there was a specific diagnosis or remedy. As I recall, it was just a reaction to everything else that was going on. I don't remember taking any meds for it. I do remember that it was fairly painful. By Golly, I found it. Last July my Sodium counts were very low. My radiation doc put me on restricted liquids as a seizure precaution. I became very dehydrated and once I got back on unlimited liquids the problem more or less went away. I had a couple short recurrences, but, nothing major after that.

Yesterday I read the "Oprah" thread and the different opinions on "smoker liability" versus "tobacco liability". This morning the wife and I had the old responsibility discussion again. One thing that continually stands out is the number of LC victims who never smoked. And along with that, the huge number of relatively young LC sufferers. In my case I smoked for nearly fifty years before being dx'd with my lung cancer. Back then, when I was still smoking and in denial, I was convinced that heredity was the principle cause of the disease. Naturally, I didn't believe that a lot of things, including smoking, were healthy, just not the only factor involved. I also believed that the second hand smoke issue was pure myth. Now, of course, I'm not so convinced of anything. Does anyone know or have an opinion on whether these younger and non-smoking victims are generally afflicted by second hand smoke or other environmental factors? I don't remember ever seeing the results of any such studies.

I did the Ethyol when they started to focus on my esophageal areas. I don't remember how many days or treatments it was. I was doing once a day. Like someone else already mentioned, I had days where I wasn't sure I was going to be able to swallow water. I don't have any idea how bad it could have gotten without the Ethyol. About a month after all my treatments were over, Chemo, radiation and PCI, swallowing got more difficult. Less painful than when undergoing treatment but I just flat couldn't get things down. The toughest was one of my BP pills, a 90 mg. Procardia XL. Upshot of that episode is, I believe, the radiation induced inflamation was scarring and healing up and caused what they called a "stricture", or blockage. So, I went in for an "esophageal dilation". It's a procedure where they just run a tube and dilator down to the affected area and pump up a balloon to stretch that area back toward it's normal size. I had it done in April '04 and have gradually gotten better. Not 100% yet, but better. The pill is about the only thing left that's a challenge, but I think I'm gaining.

Addie, I'm glad you found the humor in the post. Here's some more, I'm actually a him and not a her. But, don't let that little faux pas, (sp), on my part detract from the enjoyment. That's part of the beauty of this site. After what we've all been through, the last thing I'm going to have is a sexual identity crisis. My four kids and seven grandkids would never believe it. I should have done a bio when I first joined up, but, didn't. Sorry.

SDianneB and Addie, The evidence is overwhelming. I know that some people elect to not have this procedure and I always assume there are other factors at work there. I completed my PCI last December. I believe it was 15 sessions, but it could have been more or less. I had taken a month off from any other treatments following my last chemo session. I felt so good I would have taken more time off, but, my radiation doc was pretty tight on my butt about getting it done. So far, everything is looking good. I'm still fighting fatigue and anemia but that's not too bad considering the process we go through. I got hit when I was 63. Between advanced aging, chemo-brain and PCI I can just about get away with doing anything I want and blaming the mistakes on one of my ailments.

I see you've gotten quite a bit of feedback on the emotional issues. I think we've all experienced those same things and it's very easy to empathise when someone else is going through it. Thank God for resources such as this site. It took me about a year to find it and I sure wish it had been sooner. Anyway, and to my point, the hair issue. I wasn't too ego driven over the hair issue. I have been one of the lucky ones to reach into my sixties and still have a full head of it even though it was white. That's a family trait and usually starts in the twenties or thirties at the latest. Some of us color it and some don't. I was a "don't" and my brother was a "do". After my chemo and radiation treatment from last June through November I still had my hair. Then we scheduled the PCI and I was told to prepare for my bald period. The gals all joked about it and how it would come back and on and on and that I shouldn't worry. After about three weeks of PCI I noticed my hair was beginning to shed. It was kind of humorous because our dog has white hair about the same length as mine and we weren't sure who was losing the most. I decided then to get a very short buzz cut. That was about a week or so before last Christmas. By the first week In January I was like a shiney cue ball. We live in Wyoming and don't get out much during the winter, but, when we did, my head instantly felt like it was frostbitten. By my birthday, the end of February, my noggin looked like I'd poured some dark sand all over it. My hair was actually coming back already and it was darker than it has been in forty years. Since then I've had a couple more haircuts. My hair is getting longer and longer and staying dark. Incidentally, my brother has quit coloring his hair so we now have the friends and relatives really confused over who's who. He's five years younger but that's harder to tell now also. So, continue to follow the advice about treating yourself well. And don't worry about the hair deal. It is only temporary.

Mo, I too am having problems with low energy. I usually describe mine as total exhaustion but I haven't done anything to get exhausted from. I am anemic as a result of all my treatment and my blood counts are screwed up. Some are high and some are low. My chemo doc is giving me Epogen shots on a weekly basis and that seems to be helping. Nothing dramatic but it does show promise. I asked him about Procrit or whatever is getting so much TV time these days and he wasn't in favor of it. How are your counts? I'm guessing they're satisfactory or you'd know it and be doing something. Hope they find a simple answer for you. And we're sort of in the same boat on the trips. Our newest grandbaby was due today up in Fargo and we'd planned to be there. Luckily for us the stork was delayed as I went in for my weekly epogen shot here and ended up getting my next CT scan a little early . Seems the doc and I are having a vacation schedule conflict and this sort of straightened that out. If I have the strength I'm good for the summer before I have to see him again. Of course, the shots continue. Hope everything went well for you today. Best wishes

Lisa, Disney's Small World. One of Walt and God's greatest gifts to mankind and kidkind. We played the Small World theme at my daughter's wedding, my 50th birthday party and at my retirement party. Nobody except family knew why that was so special to us. Bengel, We're just east of Gillette in a small, (average for Wyoming), town called Pine Haven. We're on the edge of Keyhole Reservoir which is controlled by South Dakota and the BLM for irrigation. Right now it's starting to look like a dry lake bed. Everyone, Thanks again for the welcomes and kind words. I hope I can contribute to the continued succcess of this endeavor.

Don Wood, Thank you for the welcome. Funny you should ask. The "twodogs" has three sources. 1. I did have two dogs when I started using it years ago as a CB "handle". 2, There's a saying around here, (Wyoming), that you can spot a real cowboy because he has two dogs in his pickup and finally, there's a rather coarse joke about some naming conventions. I just sort of carried the old CB handle over to the internet when I finally got here. My best wishes for you and Lucie.

Ry, Yes, SVC refers to Superior Vena Cava. In my case my neck was so swollen that a 20 inch silver chain that I wear was tight on my neck. My normal neck size was 17. I assumed that my neck and facial swelling was a reaction to the Aleve I'd been taking for my other pains. I also had a lot of purple veins on my chest that I'd assumed were just normal spider veins. I didn't think much about how fast they'd accumulated. Of course, I'd come to these conclusions through self diagnosis on the internet. And, I'd already talked one doctor into going along with me and giving me a steroid shot to cure the problem.

I'm also a Newbie to the site. I actually just found it this morning. I've been avoiding this subject on the net because a lot of the sites I visited earlier on were depressing or displayed a lot of anger. I had enough of those emotions of my own and didn't need to fuel or feed on that of others. I'm 64, married 40 years, was a smoker for nearly 50 years, retired, three daughters, one son, six grandkids, (one more due tomorrow perhaps). It'll be a year from June 26 for me. I'd been experiencing strange aches and pains on and off for about a year and a half. Just prior to my DX I was hacking and coughing, (thought it was alergies), and having neck/back/ shoulder pains. I'd been taking Aleve for the pain and had developed severe swelling of the neck and face and finally went to an ER. Thank God for the doc on duty. He diagnosed me as having a tumor and SVC Syndrome. Biopsy came back as SCLC with the lymph nodes exposed and, of course, the tumor. The tumor was, ironically, about the size of a cigarette pack and located between the Adam's Apple and the breast plate, just about exactly where there was no possible way to get at it surgically. In any event I was in an ER mode and my radiation treatments began the very next morning. On and off the radiation and chemo treatments ran from June 26th to December 20th. So far things are going well with my CT's clean, except for scarring, and my appetite and taste both coming back. I'm starting to eat regularly if not heavily and enjoying a healthy and delicious cocktail now and then. From what I've seen so far this looks like a pretty good group. I hope we can share and help each other through what ever it is we have to face.

In June of last year, during the front end of my radiation tratment, I often wondered if I was ever going to be able to swallow air again without pain. Well, maybe not that bad. Things like well seasoned meats, beer, carbonated drinks, etc. were really hard to get down. Ice cream, custards, pudding and other foods in that category went down well. Cream filled, chocolate coated bismarcks got to be my main meals. Besides that, I liked them before I got ill. Surprisingly, lemonade went down really well so that helped get me through the summer. I had my last radiation on August 19, last year and have gradually been getting better. Like others, either from the chemo or radiation, I pretty much lost my appetite and most foods did not taste anything like they should. Ergo, weight loss. This was sort of a humorous situation as my chemo doc encouraged me to get down anything I could, (ice cream, pudding, etc.) while my cardiologist, (yeah I've got that too), was all over my butt to get my cholesterol and triglycerides down. Because of the concentration of radiation to my esophegal area I did end up with some other complications which required me to do the requisite relearning of taking smaller bites and doing more chewing. Good news is, things are tasting a whole lot better now and I'm eating a whole lot more. I'm at just under 160# now, down from 180#+ but up from around 140# and will be perfectly happy to hold this. I feel good , but as I stated before, still have the anemia and lack of energy. In retrospect, the radiation treatments themselves never bothered me other than the exhaustion. And, since my sense of tastes changed I didn't miss my old favorite foods that much. Good luck on your treatments. Keep us up to date.

This is the first place I've ever found that had a discussion about "optical migraines" I've described this condition to eye doctors, radiologists, chemo docs and all types of civilians. Nobody ever claimed hearing of it before or knew what it was. Mine started around last April as I recall. I was subsequently diagnosed with SCLC on June 26. Mine included involvement of the lymph nodes and an inop tumor. The tumor was inop because of location, not because it was beyond hope. Anyway, I've done the whole last summer and fall routine of chemo and radiation following up with a 21 day full-brain radiation treatment from December 1- December 20. So far, so good. All my CT's have looked good and we're all optimistic. I still struggle with anemia like most. And I still do get these optical lightning storms though and am relieved finally to hear I'm not alone. I just found this board this morning. I've sort of stayed away from the boards because some just get too depressing or angry. My best wishes to all.