Addie

I agree, Fay. My rad. onc offered up the Amifostine shots when I was due to have my chest radiation. Insurance paid...no problem. As I recall..the shots cost about $800. EACH!! The rad. onc said not everyone can tolerate them...but I did tolerate them pretty well, except for the last 2-3 shots (of the total of 31) which left huge red reactions on both hips and one side of my tummy...and itched beyond belief for a couple of days. The red marks lasted for 2-3 weeks. But aside from a day or two right after radiation ended, I had only mild esophagitis for a couple of days...and that was it! I was getting chemo at the same time...so my appetite wasn't huge....but I maintained my weight and I DID eat without problem, throughout radiation. I'm convinced Amifostine made the difference. I was always glad that I tolerated the shots without many problems. The shots themselves can cause nausea...so my instructions were to take a Zofran pill each day, 1/2 hour before my injection. I never did get sick...but there was a day or two when I didn't get the injection, either because I forgot to take the Zofran....OR was already a bit nauseated. So...they skipped the shot for that day...but I had the radiation anyway.

Well...you pretty much know my history...but it was limited to left lung and mediastinal lymph nodes to begin with. TX took care of all of it. I was NED. Recurrence to the liver four months from end of chemo (four tumors in liver - largest one is 4 cm) and to the pancreas (multiple masses). Onc said cancer may be "more generalized" in my gut....meaning there are tumors elsewhere that are too small to be picked up yet by MRI or scan. Spleen was mentioned...but never confirmed to have tumors. After three cycles of chemo...pancreatic mets are GONE...and liver tumors are half the size they were! Spleen, gall bladder, biliary tree all "unremarkable".

Dear Betts.....I read this post last night and was struck speechless and so sad, I just logged off. Now today I see your comment quoted above....and my heart lifted a bit. To know you're not just giving up or giving into this...shouldn't be a surprise, knowing a little about your spirit! But still, I'm so glad to hear you SAY this...as we all know there ARE miracles out there. Even when things seem pretty bleak....believing, still finding things to laugh about AND remaining as positive as possible....will help. Second or third opinions ALSO help....huh? Hang in there sweetie.....I know you will, and we'll be hanging in WITH you. You were one of the first to offer support when I first joined too...and I'll always be grateful. I loved your gentle humor from the get-go....and your happy dances made you stand out among many good people here! Blessings back at you, Betty.....many of them. All my good thoughts are coming your way.

Sorry I'm late. My lampshade was in the shop! Got a bit wrecked at Cindi's bash...but it's all spiffy again now and ready to party (if belatedly) in Maryanne's honor! Where's the Margarita station...I'm in need of some lime persuasion? Hope your day was a good one, MA....and hope you're still partyin' here too. It's the weekend. Weekend birthdays are the best because they are automatically three days long!

Kel...a bad day of golf is still better than no golf OR working! Boy...I sure hope it's just the hernia that is troubling Mom. I'll be sending all good thoughts and vibes her way and please DO let us know...will you? I'm sorry her vacation was interrupted...but hope she gets some good news and is back out on the course asap. Looking towards your next report being a good one!!

Kel...a bad day of golf is still better than no golf OR working! Boy...I sure hope it's just the hernia that is troubling Mom. I'll be sending all good thoughts and vibes her way and please DO let us know...will you? I'm sorry her vacation was interrupted...but hope she gets some good news and is back out on the course asap. Looking towards your next report being a good one!!

Aw, Betts....what is there to say? Dammitall, anyway. You've been an inspiration, honey...and you still are one to me. I'm so sorry it's come to this for you. We are here for you...and I hope you'll be able to make it to the puter for a long time to come yet. I will be thinking of you....sending my best thoughts your way.

Hubby's used quinine too....but his 83 y/o mother told him to take Calcium, Magnesium and Zinc....and since he started on it, he's not had ONE leg cramp. He used to get them so bad he'd wake ME up to come help rub his calves!! (I'm talking about his leg here. He doesn't normally keep beef cattle in our bedroom at night! ) Be sure to ask your doc before you add even vitamins to your med regimen though. Some vitamins interact badly.....for example, I used to take A & D...but my onc said to stop it when I started on coumadin! Still...if your doc approves cal, mag, zinc...it appears to do the trick for leg cramps. As for hands...(and feet) I have some mild neuropathy from the chemo...but not really cramps...so can't help you there.

I'll say this: Life with you is never boring, Beth. Even cyberlife. I'm glad you're home, I'm glad the pred. is reduced, I'm glad you've dropped four lbs. and I'm LMAO over the idea of you sitting on the doctor!! But see...just when you thought things were taking a turn for the worse again....it all shook out okay...didn't it? Well...if not totally okay...better than you thought, eh? As others have said....hang in there, enjoy the weekend, find reasons to smile and crack jokes...and BELIEVE in the power of positive thoughts. Positive thoughts are working for me....I've had a great week. Now it's your turn....

Here's a FWIW for you all.... I've been on prednisone for a year and a half...due to Polymyalgia Rheumatica....sort of "arthritis of the muscles". Never was on a high dose...started at 10 mgs. and am down to 4 mgs. daily now. I've been told it's possible that chemo will cure my symptoms...so that I no longer need to take the pred. But at this point, I've just slooooowly been reducing my dosage. Nothing drastic...which is how you need to deal with steroids anyway. I don't take my daily 4 mgs. on chemo days...because on those days I'm getting 8 mgs. of Decadron. I like what you said, John....that in some cases steroids will actually increase the effectiveness of chemo. I had an outstanding result from three cycles of Topotecan recently. Cleaned out my pancreas totally and the liver tumors are mostly 50% reduced!!! Did the prednisone help?? Sure hasn't seem to hurt. I think I might stay at this dosage, with my docs' approval, till the next three cycles of chemo are done!

Any shaving to be done...should be done w/ an electric shaver. Like Jen said, a regular razor is risky for a wee nick or cut that could let in infection. Most people lose enough hair that shaving the rest off seems a good idea. Mine came out in clumps over two days....so we had a head shaving/pizza party and a good friend shaved the rest off! This go-round with chemo, my hair was JUST coming back in again after some preventative brain radiation....and now....it doesn't know if it's coming or going!! Some of what was there when I started chemo again....has grown a bit longer....and some of the rest of it has come out!! But I'm NOT shaving it this time. I've been bald for nearly a year now. I wore my hair VERY short most of my adult life. I've got cancer. I don't care if people stare at my "duckling's butt" head. But I do miss futzing with my hair....twirling a bit around my finger when I'm thinking. Okay...my tangent is over. But wait this out if you wish...see how much of hubby's hair falls out. THEN decide whether or not shaving the rest is a good idea....but DO use ONLY an electric shaver.

If it's Cin's birthday does she still have to run the bar at the pub....or do we give her the day off to sit on the other side of the bar and inbibe? However it works....have a ripper, Cindi. 50 is a great milestone and deserves some serious celebration....so load me up with a Margarita on the rocks, salt....and I'll start celebrating with you!

Jeez, Frank....didn't anyone tell you that the idea of a hospital stay is a good R & R, with your own t.v., mediocre food and cute nurses to trim your toenails for you? Sheesh. Seriously....this must have been a scary time for you and your family but I'm delighted that you're home again and back with us. You were missed terribly! And you know...Mr. Ry was getting sorta funky with all that beer he's been hoisting in your honor. Even Ry couldn't make sense of him. Stay well, Frank....we need you right here!

I like your second post better 'n the first! Glad to hear the good news part of all this....and that you're feeling a tad better. Congrats to your daughter...and I'm glad you enjoyed the wedding and trip! We get some ups and then some downs, huh? Hope you get back on track with the Taxotere soon...and no more effusions to cause problems. Sending all good thoughts your way, Cath...

Maybe see how it goes this time? She may need it more now, for symptoms...eh? When I get chemo I get 8 mgs.....but with my first go-round with chemo, I think I got 20 mgs. on day one and 10 mgs. the other days. I got sorta weepy somewhere along the line...so they cut me to 10 mgs. and eventually, 8 mgs. It works fine for me. Makes me verbose.....I talk a lot anyway, but sometimes the steroids really run my mouth for me. See how this dosage goes for mom...and if there are problems, ask her onc about reducing the dosage. Does that make some sense?

Hey Frank....we have an "A.B.L.B.U." around here. I bet you are the only guy who knows what that is...eh? An "Acute Bud Lite Back Up" You better get yer duff outta that hospital and get back here in front of the cooler where you belong. Some of us are running out of room for OUR libations with the overrun of Bud Lite! Take care of yourself...and hurry back. You are missed a lot!

Well, you made me dig for it thru the forums....but at least your news was FABULOUS!! Congrats, Fay. Such good news...I'm delighted for you. Go get that shoulder done so you can sling some Singapore Slings in Cin's pub....okay? Or toss beer nuts (NO, Frank, that is not a comment about you )!! Glad there's a bit of good news around here today.

You might not need the cream. I've yet to use it...and the prick of skin to access the port is FAR less than accessing a vein!! I also leave my port accessed for all four days of chemo. Have to keep it dry...which means baths instead of showers....but hey...what do I do to work up a good sweat these days? Read? Knit? Watch movies?

Di....gave you my thoughts by email....but dangitall, I wish you weren't having to deal with all this indecision. I like your attitude though, that it's time to get some answers. You know...my onc refuses to do PETs. I've never had one. He says they "don't tell him enough"...which is his way of saying (I think) that there are too many false positives and it gets confusing! That might just apply in your case, as recent pancreatitis probably would light up....eh? Anyway, hon....I'm thinking of you...hoping you get some "debris" cleared away with your onc AND get the back up from your pulmonary guy that you need. Keep us updated...okay...and hang in there. I'm so glad you're feeling better physically....NOW we gotta get you there mentally...eh?

I have dusted off my best lampshade and I'm ready. But only 50???? Sheesh....you're still a spring chicken, Cin! 50 was my epiphany. There's something about that half century mark that is liberating and illuminating! I don't expect it'll take you long to discover that...and I look forward to what you have to say about it! Meanwhile....let the good times roll. I like a party that starts early and lasts beyond the actual occasion. Having said that...my 59th is coming up in September. Anyone inclined to start the party in July will get first whack at the Margaritas....deal?

No recriminations about the smoking Uncle Dougie....but what did it for me was reading that treatment works better if you quit!! My onc supported this too. Worth thinking about. Why go thru all the chemo, etc., if continuing to smoke offsets the good it does? I quit, virtually cold turkey, the day of my biopsy. From 2.5 packs a day....to two cigs that day....and none since. It will be a year on May 6th. No pills, no patches, no gum. Fear was a great motivator for me...and remember, I didn't yet have a diagnosis. That came four days later and confirmed my decision to quit. (Mind you...this was only the second time I'd quit in 40 yrs!! First time, it only lasted 10 days and I was a raving b%$ch who put on 7 lbs. in that 10 days. Even my hubby told me to just forget it and light up! ) Keep trying to give it up. Don't beat up on yourself about it....but just keep trying. I used to say...."If I knew I was terminal....I'd start smoking again, because I always loved to smoke". But you know what? Lately, due to low blood pressure and low RBCs....if I go up and down stairs, I find myself huffing and puffing a bit. I've never HAD any shortness of breath before...and it's NOT fun. So.....I've decided terminal or not...WHY would I add SOB (shortness of breath) to what ails me if I didn't have to!? Point being: I don't think I'll ever smoke again. Maybe I'll substitute M & M's or Kandy Korn for smokes... As for you....keep trying to quit, ok? But I don't think you'll find many (if any) here who will give you a hard time about continuing to smoke. I think we all just accept that we'd ALL be better off if we didn't....and NEVER HAD smoked!

Your mom is one ROCKIN' advocate.....I'll say that!! Glad you've got some changes and equipment that will work more effectively for you and make your life a bit easier. And I'm even more glad to see that you still retain some of your humor and "up" attititude. I know it's not easy some days....but you're a leader in this department for all of us!! I hope you sleep like a baby...and wake up renewed and refreshed and ready to report in to us! Thinking of you always, Beth...hoping for all gains, large and small....and for them to continue for a looooooong time.

I have a kidney condition, so my onc gave me carbo instead of cis....because cisplatin is also harder on the kidneys. One member here started on cisplatin and lost some 60% of her low frequency hearing, I think, after just a dose or two. She was then switched to carbo! Cis is lots harder on hearing than carbo....but BOTH are thought to be pretty equally effective, along with etoposide (VP-16) as first line chemo for sc lung cancer....so I wouldn't be concerned. The fact that your dad is feeling a bit better and not so tired is also good....and may be reflective of the fact that carbo's side effects aren't quite so bad. But a good many people have been treated with carbo effectively....and I think most oncs look at cis and carbo as fairly interchangeable these days, for first line treatment. Good luck to your dad!!

Hi Uncle Doug.... And hey...if attititude counts....you've got this thing licked! It's great news that there is no further spread than to the adrenal...but why, I must ask, are they not able to radiate your lung? In many cases, concurrent chemo and radiation of the primary lung tumor produces good results. I do realize some tumors show up where it's not possible to radiate....but your bio doesn't specify (unless my chemo-muddled brain missed it!) You can read my bio below. My good attitude the first time around didn't get me more than a 4 month remission...but THIS time I'm looking for better than that!! I met a woman yesterday in chemo with recurrent breast cancer....who says she's been coming in once a week for chemo (about 2-2.5 hours each time) for the past THREE YEARS!! But she looks wonderful and is stable and if the price is weekly chemo, she's willing to "pay it". We do need to stay positive and try to look at this as a chronic illness...but one that can be treated and either get us to stable OR to a remission. I started out journaling my experiences too...but now I just keep a calendar of sorts. My biggest concerns these days is getting some hair back (and in a color I recognize as my own ) and getting back out on the golf course! Sorry you have the need to join us...but we can always use someone with your humor and attitude.....and I hope you find good support and info from being here. Oh...and by the way....for some odd reason, my fingernails are growing like weeds!! Small consolation for not having had any hair since last June...but they DO allow me to scratch what itches!! Hope chemo continues to go well for you. The fatigue has been the worst of it for many of us....but go with the flow a bit. Don't fight it. Take cat naps and then exert when you have a little extra energy. Avoid crowds when your white cells dip....but Neulasta works well for that and Arenesp or Procrit helps the red cells, when needed. I've yet to need a transfusion even tho my platelets did get fairly low. Good luck, Doug....and I look forward to hearing more from you!

I'll hoist one for Charlie....you betcha. Should we be calling these Happy Cancerversaries? Nah....I don't guess that's necessary. Happy and Cancer don't really go together very well.....do they? I'm working on a year of survivorship myself.....next month. Will let you know. Lampshades WILL be required for everyone's heads, as you come to the pub for your favorite libation......okay? Congrats Charlie!! Keep racking 'em up!