Addie

Aw, dang Brat....I'm so sorry to hear this. Know that you've got the combined power of lchelp behind you guys....and I personally intend to have a wee conversation with The Man Upstairs tonight on Brian's behalf. Tell him to hang in there...and you do the same, sweetie. This must all seem so fearsome right now...but you both have wonderful spirits...and I'm gonna hope that will see you thru this and find Brian on the road to improvement and feeling better very soon. Thinking of you and sending my very best thoughts and wishes your way. Keep a good "Addietude"....okay?

Funny you should ask about golf, Kel. For the first time in a year....I played 18 holes yesterday in 92 degree heat! Slathered head to toe (and I mean ALL OVER MY HEAD TOO!!) with SPF 50, "armed" with three bottles of water and a hat...I shot an 86~!! Our course is a short course...but challenging. Not an executive or par 3 course...but just not long, in terms of yardage. I was SO pleased with myself for lasting thru 18 holes and for my score! But boy am I tired with sort muscles today? I used muscles I haven't used in a while...as you can imagine. I'm playing as a guest in the ladies member/guest in two weeks...so hope I can do as well then. First birdie I make...will be for your mom! I almost had a couple yesterday...but lipped out.

My onc likes peanut brittle. I make a really good peanut brittle and had taken some in last Christmas (along with some homemade fudge) for his staff and the three doctors. Well, once I found out that Cooper likes it a lot...I told him I'd make a batch JUST for him. And then my cancer came back. So...the first time I saw him after that....I teasingly told him I was holding his peanut brittle "hostage" until he "fixed me". I'm not totally fixed. I go for cycle 7 of Topotecan starting tomorrow...and who knows how many more cycles? As long as it keeps working and keeps me stable...I guess we go indefinitely. I can live with that...and perhaps wouldn't live without it! But I've decided the man doesn't need to wait forever for his candy...so I'm gonna try to get a batch made within the next week or two, for Cooper...otherwise now dubbed "Chemo Sabe". I think holding the peanut brittle hostage for 6 months is long enough....don't you?

Forever is a loooooong, loooooong time, Beth. I like the sound of it! Hope this chemo combo is just the ticket for you to enjoy that looooong ride to forever!

Sandy says, B-NINE, I-WIN!! What great news. And win you do, Sandy...I'm so happy for you and we'll be waiting for you in Cin's Pub...so come hoist one in celebration as soon as you can!

To our favorite "Brat".... Don't know how I missed this post...but am sure glad to see they figured out what was causing Bri's symptoms...and also that he could go ahead and start on the Tarceva! Hope the fluids and antib regimen fix him right up, and also that the Tarceva works for him too! Yes...you probably could use a few good nights of sleep...eh? My mom used to swear by a hot toddy before bed on "special occasions"....like when she REALLY needed to sleep! Best to Bri...and you too....and keep us posted on how he's doing. Glad your scary night is over with!

My liver tumors be d*mned....I'm having a Transfusion with vanilla vodka. Just a drizzle of the vodka though....as it's more a symbolic thing. Good to see you back behind the bar, Cin....we've missed your leadership and the bar chatter you're so good at, dear girl! Yes, it's been a time of mixed emotions again lately. The losses are always so tough...but the fact that we can all come here to hang together a bit and support one another, is always a help, I think. To all of us...no matter our specific reasons for being here...we raise our glasses in salute to companionship, support and caring for one another as best we can. Down with cancer....and UP WITH CYBERSUPPORT! Buy the house a round on me, and my onc who has recently been renamed....Chemo Sabe. I guess that makes me Tonto.....eh?

FWIW...my onc's office won't release a copy of my scan results until AFTER the doc has seen it. But the radiology dept at our local hospital gets a preliminary report out for any oncology patients PRONTO!! I had my last CT on a Tuesday afternoon at 2:30. My onc had a copy of the prelim. report by that evening! Since he was leaving town on Wed. morning...he left a note for his receptionist to call me to relay the results. I got the call from the receptionist by about 11: a.m. Wednesday morning...not even 24 hours after the scan!! It sounds like your onc and his staff are just not as understanding about the angst created with waiting for results...and the radiology dept. might not be any more sympathetic. But I'd either be making some major noise about how it shouldn't TAKE a week for you to hear results...or I'd be finding a new onc. There is no reason why you should have to wait for your appointment WHEN THE RESULTS ARE KNOWN LONG BEFORE THAT!! You aren't over reacting...you are reacting normally to having a condition that is ANGST-PRODUCING ANYWAY....nevermind when you're waiting on test results that could be good...or could be bad! I mean, that's the reality of this disease....we're never quite sure which direction things might go. I tend to stay pretty positive, as you know...but this last scan had me a bit more worried....simply because having the d*mn cancer in my liver and pancreas ain't a cake walk! It's a major help to me that I don't have to wait a week for results. I had the prelim. report immediately....and only had to wait the week to see my onc and get more specific results, when he returned from vacation. (Even oncs deserve some time off...eh? ) In the event that I cannot contact anyone in my onc's office (ie: if I have to wait for someone to call me back at the end of the day...because they are all too busy to call)....then I just call my primary doc's office. I always have everything copied to him...and HIS nurse is a breast cancer survivor, very sympathetic and she will READ ME the results of a scan or test over the phone. I'm lucky (and I'd change docs if I weren't)...that I've got doctors who don't play power games with me regarding information about MY OWN HEALTH or body! You need to find doctors who will treat you the same way. I'm long past putting up with anyone who thinks they're gonna lord their "power" over me when it comes to my health and any info relating to it...and that includes snooty little nurses who think they can tell me what to do, too! The last time I saw my gyn, I refused to have the physical exam...because there is nothing he can do about anything anyway, as long as I'm in tx for the cancer. His nurse was NOT happy with me...that I was THERE and wasn't going to disrobe for a physical examination. She said I was "overdue" for it. I told her..."Listen...I had my mammogram, you just took my b.p., got an updated sheet on my meds and the doctor and I will talk and I will update him on my status re: the cancer...but there is NO NEED FOR AN EXAM because my cancer tx takes precedence over the fact of needing my ovaries out! Since nothing can or will be done about that....there is simply no need to go thru a physical exam at this point!" She wasn't happy. And you know what? It's HER d*mn problem.....NOT MINE! She can put HER feet in the stirrups....mine were staying on the floor, thankyouverymuch! You're about to turn 50, am I right, E? That should do it for you, sweetie. I turned 50, got a HUGE mental infusion of confidence AND got in touch with my Inner Bi*ch.....and am a new person! I take on imperious nurses AND doctors with dirty windowsills! (That last is another long story about a gyn oncologist who left me half naked in his exam room for too long...and I got up and walked out. He never billed me, much to his credit...cuz I'd not have paid the bill!! Oh, and his windowsill in the exam room WAS filthy and dusty which also didn't endear me to the guy!) Turning 50 was an epiphany in a lot of ways...not the least of which has been that I'm much less likely to just "make nice" when some medical person is jerking my chain or exerting themselves in some power struggle. My new motto? DON'T MESS WITH THE CANCER LADY!! Make a few demands, Elaine...or find better docs. Better still.........DO BOTH! _________________

Melissa... Saw my onc on Wednesday...and next Monday I'll start my 7th cycle of Topotecan. I didn't ask him how many more I'll be having...but he'd told me previously that as long as someone tolerates the Topo well...you can have more cycles than are usually given for carboplatin or cisplatin. Generally, a maximum of 6 cycles is all most people can tolerate of the platin drugs. I'm currently on 9 mgs. of Topotecan....down from the 12 mgs. I was getting the first 4 cycles. It caused my platelets and hemoglobin to tank, so my onc cut me from 4 days of tx to 3 days. I assume I'll continue with the 3 days unless or until it's no longer working or my bloodcounts go wonky again. So....yeah, I guess you could say it's being used as sort of a maintenance drug in my case. I expect I'll have periodic scans and what they'll be looking for is new growth OR growth of the tumors that are still there. At the point where it looks like the Topotecan isn't working anymore...there are other options...but I've not really inquired about them yet. One step at a time...you know? Your mom may well tolerate the cis and campto just fine! Cis can cause problems with hearing...so be sure your mom is aware and reports any such changes to her onc. If Mom isn't mentioning her nausea...she may not mention other symptoms...so you might have to be the one to encourage her awareness AND willingness to let the nurses/doctors know. Everyone is a little different in terms of reactions to various drugs....but in order for the docs to make the best decisions on what to treat with...they need to KNOW the effects...like nausea, or constipation or ear ringing or bloody noses....whatever the symptoms may be. Okay...enough of my "preaching" for one morning. Wishing Mom well with tx...and keep asking questions when you have them. Somebody here has probably already "been there, done it"!!

Ahhhh.....so just recently when local papers in the east here, talked about Mt. St. Helens doing some rumbling again...it wasn't really the volcano? It was YOU, Uncle Dougie? Your deliciously funny description of your gasseous difficulties and Frank's suggestions on how to cope notwithstanding, if one is sitting down on a wooden chair...flatulence can sound a bit like a dog growling. If you have a dog...this is a perfect "out" for blaming "someone" else. Don't ask me how I know this, okay? But suffice to say sometimes I smile inwardly and consider myself a ventriloquist! I hope you get a good report from your latest scans...and keep up that great, humorous Addietude you got going, Doug....cuz it's a winner for sure!

Shar...you and Hal have my very best thoughts and wishes for Hal to recover well, for the radiation to work on the other tumors...for everything to go in a positive direction. And yes...stress is bad for cancer and lots of things...so try to breathe deeply, take care of yourself during all this....and trust, hope and BELIEVE!! Sending all good thoughts your way.... Maryanne...thanks for letting us all know and please pass our wishes along to Shar...

The above is the paragraph that speaks the loudest to me. That you're FEELING a whole lot better, especially. That your stress is reduced. The move is complete. That overall you are noting little improvements. Just keep heading in that direction, sweetie! Hoping all else turns out okay....and that you just keep feeling better and better.

Yes, they surely are. But they AIN'T the kind of diamonds I was talking about. And besides, other than to set fire to the 14 remaining t.v. dinners and a whole $%#@load of bagel pizzas.....I have no need for matches!

Do the steroids make him chatty too, Peggy? They sure wire up MY mouth ...and my mouth goes pretty good most of the time, even WITHOUT steroids. Dinner sounds fabulous. I'm so glad to hear Don is all perky and sparky with energy! It must make you smile to watch it...eh? My hubby cooks most of the time now and occasionally likes a break. If I don't give him that break by cooking myself....he goes to the garage to get one of the 15 t.v. dinners he bought because I happened to say they "weren't too bad" one night. My luck, he caught a sale on them two days later. He went out and bought 15 of the d*mn things! They aren't THAT GOOD either...but I didn't have the heart to tell him that. Then he got on an artichoke kick. We were each having a whole artichoke at least 3 times a week. I was starting to sprout leaves under my arms....I swear. Leaves with pointy little ends. Then one day he's going to the store and I said, "See if you can find some of that Pepperidge Farm French bread pizza. He came home with a box of that....another box of some other kind of pizza-but-not-a-traditional-pizza....and then this HUMONGOUS BOX with mini bagel pizza hors d'oeuvres. There were - I dunno - 40-50 little mini bagel pizzas in that box. Enough to choke a horse. I think we've got 49 of them left. I wonder if I told him I really liked diamonds....if he'd go to the jewelry store and bring me home like....a 40 ounce BOX OF DIAMONDS!?? Nah. My luck he'd just bring more t.v. dinners. And bagel pizzas.

Sounds real good...and thanks Beck, for the report. Glad it's over for Sandy, hoping for a negative path report...and hope she bounces back asap! Sending quick healing thoughts your way, Sandy. Be well!!

My deepest sympathies, Nancy. I'm just so glad Mike was able to walk his daughter down the aisle....a family memory that will mean so much to all of you in the years to come! Hoping all such memories and the security of your love for one another will help sustain you thru the difficult days. Mike fought a good battle...and the fact that he went peacefully is important. Thinking of you and sending vibes for strength and comfort.....

Hi Troy.... If this is small cell and there is a lot of activity, then it should respond very well to chemo. When my small cell relapsed, there was a lot of activity going on...and this is what my onc told me. After three cycles of chemo...the visible cancer was reduced by 50%~!! The mediastinum is the area of lymph nodes in the chest between the lungs. When I was originally diagnosed, I had one small "infiltrate" in my lung (which was likely the primary tumor) and also activity in the mediatinum....in the lymph nodes. Without any spread outside of the lungs/chest area though...I was considered "limited stage". Here's hoping that it is only inflammation or something other than cancer for your mom. But I agree, it does sound like this has been caught fairly early. Sending wishes for the best...and hoping you'll keep us updated. There are many people here who've done LOTS better than "the odds" with small cell. Keeping a positive attitude and keeping hope alive are both helpful! Your mom is lucky to have you as an advocate and someone who looks for more information re: this disease!

I was told (can't recall by whom) that survival time is calculated from the end of treatment. But you know what? ANYTHING is worth celebrating when you're dealing with this #$%@.....right? I just celebrated one year from dx last month. Since I'm still in tx....I guess the clock hasn't started yet on that one. Congrats on the 3.5 years, Joannie...no matter WHEN your clock started. It sure sounds good to me...and I hope you just keeping adding on the years...free of cancer. Dancing with NED! Keep it up girl, as you stand as inspiration for many of us!

Have a safe trip, Kathi. I feel sure your dad will wait for you to arrive and will go one better, and hope that there is a turn around in his general condition. I'm glad you were able to get an earlier flight...and am sure your being there will be a great comfort to both your mom and dad. Keep us posted, honey...and enjoy the time with your folks as much as possible.

Pegala... Hoping this works and works well for Don. And like others have said, thanks for sharing so much info about procedures, etc. It's really helpful to so many, I think. Tell your brave hubby that I smiled thinking of him saying, "Burn 'em". Sounds like a line out of Hawaii Five-O....."Burn 'em, Danno!" (Oh lordy...please tell me his rad onc's name isn't Dan! ) All good thoughts coming your way.......

You know, for someone of your comparitively tender years you've got some real wisdom, Beck! Add me to those who always enjoy your posts...which is the vast majority, Toots. Of this, I am sure. It's one thing to be verbose...it's another to be verbose and REALLY SAY SOMETHING. You fall into the latter category! Keep it up! Love ya!

Thanks for the clarification, Katie! Yes, I think Topo was originally used for ovarian cancer...but as happens with various chemos, they find it works for l.c. too. Small cell, anyway. It really does make a difference as to the onc's preferences or experience...and whether or not he is associated with a large cancer center, I think. And of course, the patient's particular situation. For example...originally my onc was going to put me on cisplatin and etoposide....but because I have a kidney condition...he opted to use carboplatin. Cisplatin can be harder on the kidneys. But see...some people might think that cisplatin is a more "effective" choice as it's been around longer, I think...and for many years has pretty much been the first line chemo. There are a few of us here with sclc-relapsed, who are currently on Topo...so it's getting used more and more, I think, as second line. Dianne is even getting Topo in pill form...something really new! Anyway...again, thanks for clarifying, Katie. I had to jump in and say something you know, especially since I've had such a good reaction to Topo so far...and also because - simply based on how I feel at the present time - I'm a ways yet from last-line tx. Staying positive in my head, you know.... We call it "Addietude"!

Geez, I hope it's not last line! This is my first recurrence and I'm on Topo....which my onc said he chose "because it WORKS!!" Three txs and it reduced the cancer in my liver and pancreas by half I've had NO nausea with any of the chemo...but for three isolated times when I was also getting radiation, and ate something I shouldn't have or ate too soon AFTER radiation! The choice of chemo is an individual thing I think...based on the onc's experience with what "works" and also what the patient can tolerate. So far, I've been very lucky in that I've had FEW, if any, side effects from any of the chemo. There doesn't seem to be any good reason for your mom to be suffering the nausea...because there are meds to help that. And it's true that once the nausea gets hold of you...it's harder to get rid of. Does your mom get premeds with anti-nausea drugs BEFORE chemo? If not, I'd be asking WHY NOT?? Zofran is what I've been given...in IV form and also pill form. The stuff worked for me and many others here who've taken it. I'm sorry your mom has had so much trouble with the nausea. Staying hydrated AND getting protein (to help rebuild healthy tissue) are both very important while undergoing chemo. I'd have a talk with her onc and ask him to put you in touch with a nutritionist too! Ask about Zofran or some other anti-nausea med. Ask about the Topotecan too. Best wishes to you and your mom..and let us know how things go.

Mine is chemo related...and was mild...mostly on the bottoms of my feet, and really only noticeable at night, when I was in bed. Sitting or standing, during the day....I didn't really notice it. But recently I've had a spot on my right hand...the pinkie finger and down the outside of my hand to the wrist. It's expanded now to include the ring finger too...and it itches like crazy and sometimes has this burning sensation. The other night, I had a burning, shooting spasm of pain in the hand...OH, and the outside of my left ankle also itches like mad. Weird...huh? And nothing is bilateral...which seems kinda weird to me, too. It's "on my list" of things to ask the onc about on Wed. when I see him next. It will be interesting to see what the neurologist says...since you've not had any chemo, Deb. Be sure to let us know...ok? Oh...I got some Benadryl anti-itch cream at the drug store the other day. It sort of helps. Not a lot...but a little. You might try it.

Nancy... There isn't much to say, but how sorry I am that you and Mike are having to deal with all this. Know we are here to help, if we can...even just by "listening". Cancer doesn't know from what is "fair" or "unfair". I wish it did...because then a lot of people who now battle cancer...would never have been put in that situation. Thinking of you...and sending wishes and thoughts for as much quality time as possible.