Addie

Holding Sharyn and her parents in my most gentle thoughts. I know how hard this is and hope she finds strength to get thru it....and peace, no matter the outcome. We're thinking of you Sharyn....sending best thoughts.

Hi Alice and Mouse...and welcome! I just wanted to let the two of you know that there is a member here....soccermom...whose mother just went thru treatment for sclc. Her mom was MY hero and inspiration as she is 82 years old and got through treatment very well! Few side effects. Her mom opted not to do the PCI at her age....but she is, at last report, doing great and feeling well. So...wanted to let you both know that while yes, getting whacked with this diagnosis is sometimes complicated by other health issues OR our age....there ARE inspirations out there like soccermom's mom! Wishing you both well...and am glad you found this site as you'll get lots of encouragement and support here! I may be "only" 58 ...but when dx'd, I already had three autoimmune disorders and a kidney condition! I still made it thru tx with few issues or problems....so sometimes, I think we surprise ourselves with what we can tolerate. I'm sure you two will do just fine...and when you have questions or need a hand to hold...there are plenty of us here to help!

I finished PCI on Nov. 17 and no, I wouldn't say I'm fully over the effects yet. My memory is still a bit iffy...and I do still seem to tire out faster some days. BUT the really profound fatigue is pretty much gone by now, now that I think about it. There were some days where, after breakfast...a little computer time and then showering and dressing....I'd be exhausted before it was lunch time! If I sat on the sofa, I'd nod off. I'm not so inclined to do that anymore though. I was told the fatigue could last for a few months. I'm finding it to be sort of an off and on thing....some days worse than others. As for the steroids, I take them anyway for polymyalgia (like arthritis of the muscles). Only take 6 mgs daily and that is all I took during PCI. Seemed to be enough to forestall any severe side effects.....ie: headaches, brain swelling, etc. The thing with the fatigue....is that I just don't fight it! On the days I'm really tired...I don't do anything much more taxing than knitting or reading or watching t.v. Not exactly strenuous activity....and it helps not to overdo when I'm really, really tired.

Hi Lynne...and welcome. I can't answer to the question of ringing in your ears....except that I do know cisplatin can cause that. Not sure about camptosar. I was given carboplatin...and had no ear issues....but the tingling hands and feet are fairly common, I think. I had a lot of it in my hands...mainly my left hand and wrist...at first. Not too much neuropathy with the feet...until chemo was about over. I finished chemo in mid September and I still get the tingly feet mostly at night when I'm in bed! Not if I'm sitting or standing...just when I lie down! Some oncs do not think PCI is worth it.....but my onc definitely does! Microcells cannot be picked up by xrays or scans and since chemo does not cross the blood/brain barrier well...having the PCI to take care of any lurking microcells in the "attic" made a lot of sense to me. I had 13 days of PCI...finished it three weeks ago. It wasn't all that bad, really. My memory is still a little iffy...and once in a while I still sorta feel like I've got a dull headache....but if having the PCI helps even a LITTLE BIT, to keep the cancer from showing up in my brain....I figure it's worth having to make lists for the rest of my days....you know? Glad to know your cancer was caught early (as was mine) and that you responded well to tx (as did I ) You might find it worthwhile to discuss having PCI with a rad onc....or get another opinion about it from another oncologist. For me....I didn't want to choose NOT to have it...and then someday find myself with brain mets. I'd be kicking myself for that. And if I do someday get brain mets anyway.....well, at least having had the PCI I'll know I did everything possible to prevent it, even if I got them anyway. Good luck with your decision and hope you find lots of help, hope and encouragement here. There are lots of true survivors here and a good attitude is always a plus!! Again....welcome!

An early "gift" for sure. Enjoy and keep having those clean scans!!

Amazing story, Frank!! And TAnn...I'm gonna hope the same thing happens with you! Meanwhile, it sounds like a smart plan to just take a break over the holidays and indulge and enjoy yourself as much as possible! Put any worries aside till you get another MRI and see where things stand. It the mets aren't causing any symptoms...then enjoy that fact too and figure it's a sign that you're supposed to do what you plan on doing! Wishing you lovely holidays...with much relaxing, many laughs and smiles and NO worries to goof things up!

Wow, Joyce....both ends of the spectrum emotionally, huh? I'm glad Steve does NOT have the c.s.t. and hope you get an answer soon re: his vision. Hoping this isn't something that will cause permanent loss...but that can be reversed. And I'm so sorry about your friend's cousin, the nurse and the woman from your church. Some weeks it really does seem that tragedy or ill health is all around us AND that it seems to keep striking younger and younger people. Makes it sort of hard to shake the feelings of sadness, especially at this time of year. I'm sorry it's been such a rough week for you...and am sending vibes for better things ahead.

Boy...things are never simple, are they? Becky, if you're in touch with Muriel, please tell her we all send her vibes of calm and comfort...plus a few good health vibes for her AND her hubby!! Hope the rest of the move goes well for everyone and that Muriel heals rapidly and fully from surgery. And I'll just BET she's got some rare hospital tales to share with us later....

Sharyn.... I am so sorry. My thoughts are with you and your family.

You're starting to figure you way thru the system, aren't you? YES......pick up a copy of those reports and hand carry them to Angel Doc!!! Don't rely on the system to follow thru. You do it for yourself! E....yesterday, I got up and walked out of the GYN/ONC's office I'd been sent to for a consult. My PCP and GYN want that ovarian cyst found at dx to come out...so both ovaries are on the block and a GYN/ONC has to be on standby "in case" of a malignancy (which nobody thinks this is!) The gyn/onc's exam room was cramped and the window sill was filthy. There was no place to even hang my clothes, so my jacket was on top of my purse on the floor and my slacks and underwear had to be folded and placed on the drainboard next to the sink! I was upset because I had NOT anticipated the need for a physical exam at this consult. I mean, hell...this guy will ONLY be on standby during surgery IF the lesion on my ovary is malignant....he's NOT doing the surgery otherwise. So why the need for yet ANOTHER physical exam when the cyst is TOO SMALL to be felt (2 X 3 cm) AND there are four ultrasounds and at least two CT scans to show it? The nurse said surely I understood that the good doctor "didn't want to just take another doctor's word" for what was going on with me!! Huh? Why the hell not? I mean am I there on a lark? Are we all just making this cyst UP in order to get our jollies yanking the chain of a GYN/ONC? Did my GYN not send over a file, those ultrasounds, maybe even the CT scan reports? They let me sit yesterday, in this cramped, not very clean exam room, upset, blood pressure thru the roof, half naked.....for over 15 minutes after the nurse AND doctor both knew I was upset and fighting back tears. That 15 minutes was my limit. I got up and walked out....called my GYN and PCP later and said that if they cannot figure out a way to get these ovaries out of me WITHOUT the need for yet another new doctor doing an invasive exam......well, then....I'd be keeping my ovaries for a while! My point, E., is that sometimes enough really is enough! I'm generally very easy going. I trust my docs and go along with what they advise. But once in a while someone pushes me beyond reasonable endurance and I fight back! After all I've been through over the last 7 months...my limit now is that NOT ONE MORE DOCTOR is going to do a physical exam on me because "this is how he always does it"!! This is MY body and I've had enough. Everyone in the Western Hemisphere knows, by now, where that cyst is....how big it is....that it's not done ANYTHING since May of this year (not really gotten bigger OR smaller) and my GYN has never been able to feel it so I don't expect the GYN/ONC would have either....and the REAL bottom line is......WHY DOES HE HAVE TO FEEL IT IF IT'S ONLY GONNA COME OUT ANYWAY????? See my point? I've had enough. I'm calling the shots now on just WHO - if anyone - gets any more chances at feeling that little cyst. And right now, I'm leaning towards....WHEN HELL FREEZES OVER!! We are captains of our own ships, Elaine. Some days.....we just have to take the helm and prove it! Go get a copy of the PFT report and hand deliver it to Angel Doc! Take the helm, E.....you're in charge!

Hi Wanda.... I just finished 13 days of PCI three weeks ago. I was dx'd small cell limited in early May. Had 6 cycles of chemo (same as you...three days of infusions, then three weeks off) with carboplatin and vp-16 (etoposide). Had 31 days of lung radiation concurrent with the chemo. I had one very small "patchy infiltrate" of 1.5 cm that they think was the primary...and also some enlarged lymph nodes in the mediastinum (between the lungs). As of October 6th...I was deemed clear....No Evidence of Disease or NED as we like to call it. Your treatment protocol sounds like the norm. My onc told me this protocol is used because it works! The number of radiation treatments might vary and sometimes even the number of chemo cycles...but not by too much. Sometimes it depends too, on how well a person is tolerating the treatment. I found all of it not too terrible! I tend not to be too reactive to medical stuff (ie: fairly high pain tolerance and a tendancy to stay optimistic) so treatment really wasn't too bad for me. Of course, as I sit here saying that, I'm bald as a billiard ball and have put on 10 lbs I wish I didn't have....but hey, it all still beats the alternative, eh? Glad you found this place. There are a lot of survivors here....and many who've beaten the odds and outlived the predictions. Hey...every morning that we all wake up...we've survived another day! You'll probably experience even more fatigue during radiation...and may have some skin issues. But don't fight the tireds. When you are tired...rest. Your body will let you know. Somebody here has probably experienced exactly what you will...so when you have questions, just come and ask them. And don't be afraid to use the meds provided for nausea, etc. because it's easier to STOP the nausea before it starts...than to get rid of it once you feel yukky! I'm a little forgetful these days following the PCI....but then my hubby is getting forgetful too and he hasn't got any excuse...you know? Hope some of this info helps...or gives you an idea of what's ahead AND that you're not alone! You'll do fine. You've got us now too, to help! Keep us posted...ok?

No, no.....this isn't TMI...you AND the rest of us (on your behalf) are finally getting to where the info is sufficient.....don't you think? (Or almost sufficient...because like you, I'd be wondering about the bones and brain too!!) As you said...this one is human....empathetic. She will steer you in the right direction and I think you need to ask her too, about an MRI and bone scan. It sounds good to me that things appear to be relatively stable...aside perhaps from the SOB. Mild to moderate as opposed to moderately severe probably depends on who's looking at it. The first chest CT I had done to dx my cancer...the radiologist referred to the lymphedema as "mild to moderate". With a later CT it was called "moderately extensive". When I asked the rad. onc what he thought, he said I had "significantly less than" he normally sees with small cell limited!! See what I mean...they all have a different way to term the same thing, it seems. All that matters is the end results...eh? I feel you're now in good hands...AND you have someone who will listen...who seems to understand how it is to be on YOUR side of this doctor/patient equation. This is a very good....if sadly belated...."start". I look forward to hearing how things go from here...and hope you start getting some answers...and some GOOD answers at that! Hang in there, E. You know we're with you....

I'm so glad you finally found a good fit, Elaine! Don't start worrying just yet about your move, though....as maybe this doc will have an equally great colleague to refer you to......huh? I'm just grateful that for now....and the coming weeks...you've got an onc you can talk to and trust and feel good about. It's about bloomin' time....eh?

Sort of like walking into the prop room for the series of Halloween movies.....eh? What would they be up to by now? Halloween XXIV?? As for moving up into the mask...I was always in about the right place...but then just had to tilt my chin up a bit, to really fit into the mask properly. I never really did get too much of trapped or odd feeling....because really, it all went so much faster than the lung radiation. Once they slap that mask on you....just a minute or so to line up and then they leave the room and hit the "GIANT TOASTER" button. Anyway...it all now seems like a piece of cake compared to what I'm having to go thru to deal with this dadgummed cyst on my ovary. Ever gotten up and walked out of a GYN oncologist's office? I did. Today. Won't be going back anytime soon either. They can all just leave me alone for a while. Everyone is 99% convinced the stupid thing IS just a benign cyst anyway...but tell me why a doc's ego is such that they just HAVE to check it out for themselves when all he's gonna do is be on standby during surgery anyway? Then tell me why if he's such a great doc....the window sill next to the exam table was filthy, there was no place to hang my coat or slacks other than to fold them and put them next to the sink....and to do so I had to step around an oxygen tank on the floor? Sheesh....I felt like this was the 50's and I was there for a backroom abortion. Ick. Gave me the creeps. I walked out. Sorry...didn't mean to hijack your thread. Got off on my own tangent.

After the first couple of days, I got the waffle on my chin and the mask felt a bit tighter. I was told (and forgot to mention this to you before) that the mask does continue to dry and sort of shrink a little....so after the first 3-4 days, it might feel as if it is tighter. My concern at the time was that it was tighter because the old brain was swelling!! But no....the techs said the mask sort of gets a bit snugger as it dries out. It wasn't so tight I couldn't breathe, tho....so I handled it. You will too! The worst of the Waffle Face routine was the day of the sim...when they made the mask. I had that cross hatching on my forehead for the better part of an hour. I had to avoid everyone I ran into carrying a pat of butter and maple syrup! Hahahahaha

Oh, boy...is this good news!! Hope it's nothing but smooth sailing for you guys from here on out....your mom included, Karen!

Hey...this might be the first lchelp Brain Toasting Blog....eh? All of you ladies are going to do just fine. I'll tell you what my Rad Onc said on my last day of PCI....and that was, "Use it or lose it!" His comment was in response to my saying that while, yes...I was noticing some memory lapses....I was still reading daily, including the newspaper, and also doing the occasional crossword puzzle PLUS watching Jeopardy every night, trying to sort of "test" my brain a bit. He said this was a good thing to do, because the "use it or lose it" thing applies even WITHOUT PCI! I finished up my 13 sessions three weeks ago today and while my memory isn't getting any worse at this point, it's not getting any better yet either! For the time being, anything really important gets written down! My head is smooth as a baby's butt.....except for a small area at the back of my head which I have dubbed my "hair yarmulke"! I guess the radiation beams missed that particular area. That part needs a weekly shave or it starts to feel like little needles poking into my scalp. The headaches have been minimal....coming and going. Same with the fatigue...although in general, my energy is lower. But I figure that will correct itself in time. Nobody is approaching me yet wearing white coats and carrying a huge net....so I figure I must be doing okay, all things considered. Oh, and the mask...while weird at first, gets less and less bothersome because the radiation itself is over pretty quickly...so you don't spend a lot of time clamped to the table by that mask. I'll be following your progress here...but think you'll find it's all more a non-event than it is a big deal. Well, except for the hair loss again...although you never lost your hair with chemo, did you Di?

Moving is good....or, as in my case, NOT moving is also good for stress relief! Yes, Beck...you CAN be a little bit depressed....just as you can be a little bit pregnant (which only means that in time, you'll be a LOT pregnant ) And if nothing else, being depressed to any degree would likely create a certain stress to get one's self OUT of the depressed state.....no? It's sorta one of those chicken/egg dilemmas. Which came first? The stress or the depression? Maybe it doesn't matter. What matters is that you recognize that something ain't quite right...and you do what you KNOW works for you to get yourself out of it. If that means power tools and a new house, or being hungry for schnitzel and a package of veal that needs pounding.....or if it means meds and a therapist....well, go for it! You can prioritize too, you know. Set some stressors or issues aside for now. Only concern yourself with those that seem most important. You don't have to take on the Whole Wide Wonderful World of Worries all at once....do ya? This year, I've sort of made Christmas (and all the inherent stress of the holidays) more of a non-issue. I'm doing what seems less stressful for me! I love baking and cooking at the holidays.....so more of my gifts to local friends will be from my kitchen this year! For those at a distance...I made a lot of things this year...knitted mufflers, caps and mittens for the little ones. It relaxes me to knit. A lot more than fighting my way through crowded aisles in the stores!! I figure this year, I've got a good excuse for anything done differently or in a manner that is LEAST stressful for me! Anyone not happy with that can go suck an egg! (How's that for a hint of Scrooge?) Sometimes, if we don't take care of ourselves....we ain't any good for anyone else....so do what you need to do Beck, and don't forget - now and then - to slow down and stop totally for a glass of Baileys, or that bubble bath or whatever else relaxes you. Nothing like a little well earned self indulgence to offset mild depression or simple stress. Taken with a small puppy on your lap....well, you'll be smilin' in no time!

WOW!! Just WOW!! This kind of news sure does merit a steak dinner...and I hope you enjoyed every last morsel! Fabulous news, Jim. Keep it up! You are an inspiration.

Oh, Angie....how I wish you and Dad had gotten better news. Please know you're in my thoughts and that I'm wishing you both the strength to get thru this next phase of things. Sending you both all good wishes for a turnaround and successful zapping of the brain mets. Hang in there, sweetie.....

You know what, Tiny? I think in your case, cancer couldn't catch up to you again if it tried!! Your zest for Life and seemingly endless energy are such an inspiration! You ROCK!! Have a fabulous trip and celebrate yet another fabulous report! So happy to hear your great news....and keep those great reports coming, ya hear? Happy, healthy, Bavarian holidays to you.

Di...I never had the visuals (ie: flashing lights) during PCI...but every day, when the radiation started....for a few seconds I swear I could smell "something" cooking! I didn't want to think too hard about what it smelled like, exactly, because I knew it was MY FREAKIN' BRAINS BEING TOASTED!! It only lasted the first 2-3 seconds...and then it went away...but do you know how when you preheat an oven...after a few minutes you can sort of smell that it's all warmed up? I know this sounds weird...maybe it's that we smell something that's spilled in the oven, reacting to the heat....but THAT was the olfactory sensation I had....sort of like an oven warming up. Weird. Oh, and I had a good case of emotional meltdown during PCI too....emotions very raw....sensitive. Then again, I can get that way around the holidays anyway....so maybe it was just me. I swear, too...that the veins on my forehead stood out after PCI was finished and once in a while I get this strange sensation up the sides of my neck...like my jugulars are overfull or something. I just keep plugging away when I'm not nodding off, though...figuring it will all go away eventually. But when they say that the fatigue with PCI is more profound than with chemo and chest rad....they aren't kidding! It's not every day, all day for me....but when it hits me...it's all I can do to keep my eyes open! I'm glad you'll be going ahead with PCI...and sorry about your Vandy apptmt. but yes, you can set that up for later and get someone to drive you and drop you off! Sorry it didn't work for today, but I don't blame you for not wanting to walk a half mile or more in the rain!~

Angie...your dad is so lucky to have you! I'm sorry it's been such a tough time for you lately...but hope that Dad getting rehydrated helps him to feel better, and in turn...you too! Everyone fighting this awful disease should have an Angie on their team....as the loving support you provide to your dad can make all the difference. Maybe it helped too, that your dad got a little of his frustration out the other day....eh? Wishing you better days ahead and sending all positive thoughts your way.

Awwww, Nina.....Happy, Happy Birthday!! Age really is a state of mind, much of the time, you know. If it weren't for mirrors and creaking bones, I'd have NO CLUE that I was encroaching on 60 myself. But hey...you know what they say? Getting older STILL beats the alternative! You DO have a terrific AND youthful attitude....and I hope it sees you to 70 and then 80, and beyond - still feeling good and having fun! Sounds like a wonderful birthday spent with family and friends...enjoying good food (and drink? )...and it doesn't get much better than that! Here's to many, many more such days! (P.S. - My 60th will be in Sept. 2006 - just about two years out from the end of treatment....so hitting my 60th is a major goal for me. You'll be my inspiration...okay? )

Sandy.....sending positive, upbeat thoughts that these nodules are also nothing!! Try not to "rehearse" this....and think too, about how you feel. If you're feeling good....that will hopefully translate into things being good, so try to set your worries aside for now and wait till you have results. I know....easier said than done....but you've got us to help you thru. Lots of hands to hold here...lots of support coming your way.