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any long term EXTENSIVE SCLC survivors out there?


Remembering Dave

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I haven't been on this SCLC forum very much in the last year or so - Dave and I have been active on this board since shortly after his diagnoses in March 2003. But I've spent more time on the Family Members forum and General for some reason.

Now that it appears his cancer could be back after just completing six months of chemo, which SUCKS big time (although the met which we went after is now gone) I am wondering how many long term extensive SCLC survivors are out there.

Dave was initially diagnosed with limited SCLC and after his chemo and radiation at that time went into remission and made it almost a year to the time he FINISHED treatment before it returned. so the first met is gone, now he may have a second met.

sorry to be rambling, my thoughts are all over the place.

Karen

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Karen, I don't have any answers for you question, but I did read your other post (in the general forum) about Dave's liver met, and the possibility of doing RFA. My mom also has a liver met, quite close to the surface and her onc and the liver specialist have agreed that she should try RFA. Initially, there was some discussion about her lesion being TOO close to the surface (not sure why, but there needs to be enough "margin" to work with). The docs conferred, and just agreed today to give it a go. Now they're having trouble finding space and time to schedule it...the first available appointment isn't for almost a month, but mom's onc. is trying to giggle things and have it done sooner, maybe next week.

We don't know much about the procedure, but thought I'd mention it here, and I'll share whatever I learn, along the way.

The liver guy indicated they don't have much experience with RFA on metastized SCLC to the liver, so he couldn't give her any stats on success rates.

I'm just happy that they can try this procedure....it sounds like the side effects are minimal, and as long as the fight can continue, we're gonna fight.

Prayers being said for David, and you...

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Ry - how could I have forgotten about Cindy RN? But you see, it's been a hard, stressful, panicky tiring week.

I did just go in and read hers. yep, hers was bad - and she's still kicking and doing well and apparently friends with NED.

Just looking for some hope. whenever Dave was doing well I wanted him to be giving others newly diagnosed hope.

Someone else sent me a PM about their dad being a long term SCLC extensive survivor.

feeling much better now!

we get PET scan results in the a.m., and sure hope we only have the liver met to deal with!

God Bless,

Karen

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Yep-I am still around. I check this forum a couple times a day to see whats up-I have not posted much lately. I am busy with teaching the CNA classes. I am at the the 4 yr mark this month!!

I had a relapse in 2003 and did the chemo and radiation that yr. but my last dose was Aug 2003 and I am still NED.

God is good!!

Cindy

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One thing to keep in mind as I have been told by many many outside people is that the majority of people posting on an internet website are undergoing treatment, newly diagnosed, or recently ending treatment. A lot of survivors understandably after 5 years or so just want to forget the cancer and not be involved.

We are fortunate that we have some survivors on here who take the time and effort to post just so that others can be encouraged, but we also have to remember that there are so many survivors out there :)

Hope that made sense

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..its hard to get an answer for that question or "How many people live w/this ...for how long????" He!! .....its THE MAIN QUESTION EVERYBODY WANTS TO KNOW....

i guess people dont want to say 'cause (lets face it).....it aint good....and no one wants to depress or discourage anyone....

whether its good or bad i want to know.....not sure how accurate the answer would be for you (the way you asked it) because "long term" survivors prbly dont hang out here much anymore.....

i just wrote NCI after looking all over their place trying to find 5 yr mortality rates ......(long time) i never could "actually" find it..... i wrote them telling them i couldnt find the info..... they sent me back a letter w/15 hyper-links none of which answered my "1" question....i would have rather them said "we arent gonna tell you"....instead of trying to confuse me w/bullsh!t...

my experience is nobody will tell you squat (even your own onc) when you start asking about actually dying.....sure.. nobody really knows for sure...and they dont want to be held responsible for info they cant be sure about.........

but you better believe there's all kinds of #'s on it (if you can find 'em)....i'm sure there are survivor #'s for EVERY CANCER, every stage, any mets (and where they are at) how long you've had it..etc....just cant find the info..... i'm sure they dont want you to...

i wrote them back thanking them for being,

vague,lazy,worthless and stupid...... ...s

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hehehe...

...i kinda wish they would .....especially on a day when i'm not feeling very well...... i'd prbly send them a $19 check and pay my bank $20 to stop payment on it...... (and still give them a cussing).....

actually ...i'm they may do a lot of good stuff... just nothing thats of any use to me......they appear to be geared more for people who DONT HAVE CANCER.... than those who do....

.......s

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Hey, Schmay and Frank, you guys are HIILARIOUS.

Man, if I could only find a 20 year survivor who had ext. sclc with mets to the spine and liver, I'd be a happy girl.

I almost had a breakdown in the radiation onco doc's office today when he gave us the news about Dave's spine mets. the good doc handed me a script for xanax, and I'm not even his patient, ha. so I enjoyed your exchange.

Karen

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Took a xanax in the onco doc's waiting room today. was my first time. been putting it off b/c didn't want to be a zombie and have to take care of Faith and Dave. Man, that stuff ROCKS. Didn't zombie me, but it was sort of like, well, it made it impossible for me to cry. that was all. it was the first conversation I've had about Dave in four days that didn't involve sobbing!

see my post under General for an update on today.

Better living through chemicals!

Karen

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I know I am pretty late jumping in here, but wanted to let you know that I know two survivors with sc extensive - 1 is 6 years out, and she did in fact have mets to the liver, 1 is almost 5 years out. Both are doing fantastic and feel great physically.

There are many survivors out there!! Hope for many happy years coming your way!

Wendy

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  • 2 months later...
  • 4 weeks later...

Idon't know what qualifies for long term. Thought I would put in my 2 cents. I have had extensive SCLC sinc Oct 2004. I had 6 rounds of chemo. I have not had any med or treatment since April. I went back to work (yay!) my job opened up, perfect timing. I am so happy to be at work, doing something. I am also back singing in my church choir. Very special. I don't know if I qualify for long term. I don't think so, but I feel every day is long term. My family was told I had 6 months to a year. I have passed the 6 months. I feel wonderful; I was in hospice in Nov 2004, I was supposed to die. Me doctor calls my a miracle. However, I do know that my prognosis isnt great. I am not getting any treatment excet for bone treatment. I see the dr. this coming Tuesday; I wish there was something that could be done, but he says no for now. I will have another scan in Aug. Any help or info would be greatly appreciated. As for me, I am very happy to be around.

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