Welcome long-term survivors!

scouty said:

Thank you Greta!
I made a post about it on the CRC board to try to explain the differences in the 2 sites as I see it.

Thanks again!
Lisa P.

Good Idea
Good idea. I know just what you are talking about,( I read Your thread on the crc board ), about different issues for long term survivors. I do post occasionally on there when I think I have some beneficial experience or ideas, but this will be nice for those of us no longer in active treatment. Thanks
Pam

John23 said:

Greta -


I think it would be a good idea if it was known what time-frame
makes a survivor "long term".

Is this for cancer victims that are still here after 5 or more years, or
less than 5 years? And is it for those that have remained cancer-free
for that entire time?

An enquiring mind wants to know!

Thanks!

John

Victim?
Bah... It's not like I was walking down the street and got mugged!
;-)
-p

Leave it to the semi-colons
To be anal about "definitions"!!! Geez-oh-pete. I don't even know what to say. I think I heard that NIH defines a long term survivor as someone 5 year out from diagnosis. Personally I don't give a rip but I do know that I don't want it to take one thing away from our CRC board. It is meant to compliment it, not replace it.

Please keep in mind that there will be others that have had or have other cancers here too. Tiny One you are more than welcome but keep your celebration post with our fellow semi-colons, it means much more to them than to say someone 6 years into the fight with melanoma.

In talking to some of my other long time NED survivors (5 plus years), we talked about issues like scarring, scar tissue issues especially from radiation due to rectal cancer, diet, lifestyle, supplements, personal changes/differences since cancer, chemo/radiation induced menopause and other things like that. I would imagine that Phil would love to talk to some other long term survivors still in treatment and learn how they keep going and handle things like the fear of burning out everyone around them. Keep me honest buddy!

I would recommend that if you are going to start a new thread, ask yourself a few questions; who is it going to help the most? where can I get the most support and quality answers and use the answers to decide where to post. I would imagine there will be times when you post here and on the CRC board or whatever your cancer is.

I also hope that loads of lurkers look in to see what folks that have been in the fray for many years have to say and what they have to look forward to when chemo, surgeries and the initial diagnosis "stuff" has long worn off. Having a goal is a great thing and can help in wonderful ways.

These are all my opinions and where the heck are Cheryl and Suzann who asked me get this new board so they can provide their input?????

Lisa P.

Sundanceh said:

Congratulations!
I'm sure this will be a tremendous success and cover so many types of cancer. I hope that all goes well.

Congrats, Lisa for getting this new forum started up and thanks to CSN for making it happen.

Not sure how I fit in anywhere...I'm 6 1 /2 years into my cancer journey, but still actively fighting...I'm a survivor and over 5 years. I'll be checking it out and look forward to contributing if I have something to offer.

-Craig

Where do I fit in?
No offense Craig...but are you nuts? It's for people who have been dealing with any cancer for the long term. With all you've been through they could make a forum JUST for you!
;-)
BTW: I heard a segment on NPR about the DaVinci robot. It was interesting but I pretty much knew about it since reading about your experience. It's amazing stuff they are coming out with. I know that you and I have both benefited with "new technology" or treatments. Many others have too.

What constitutes a "long term" survivor?
Hi Lisa , John and all -

I think when you feel like a long term survivor then you are. Let's not be nerds and specify a number of years or whether or not you are in treatment.

Lisa, I think this a great idea. I have been on this board since 6/2005, but lately am reluctant to post. My Stage IV journey has been different from most folks - in spite of a recurrence after 3 years, doing really well. I was diagnosed 5/05 and even back in 10/07 when I went to a CCA meeting in Baltimore, I joined the "survivor's" breakout group, cuz that's how I felt.

See signature below. I just had a negative PET scan on Monday - was actually reluctant to share on the CRC board - hard to share really good news with folks who are really in trouble.

Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Currently on Avastin only

Betsydoglover said:

What constitutes a "long term" survivor?
Hi Lisa , John and all -

I think when you feel like a long term survivor then you are. Let's not be nerds and specify a number of years or whether or not you are in treatment.

Lisa, I think this a great idea. I have been on this board since 6/2005, but lately am reluctant to post. My Stage IV journey has been different from most folks - in spite of a recurrence after 3 years, doing really well. I was diagnosed 5/05 and even back in 10/07 when I went to a CCA meeting in Baltimore, I joined the "survivor's" breakout group, cuz that's how I felt.

See signature below. I just had a negative PET scan on Monday - was actually reluctant to share on the CRC board - hard to share really good news with folks who are really in trouble.

Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Currently on Avastin only

ok I am 16 years out from my
ok I am 16 years out from my first Breast cancer but only 1 year out from my second????????????? (really 3rd but who is counting?)

Suvivorship
I have been surviving cancer since Oct 19 1997, a date that is bored into my mind. I was cancer free until Feb 14, 2007 (yes Valentines day) when it returned for a curtain call. I have now been cancer free for three years...YEAH! I have survived bc three times, I'm hoping third times the charm or perhaps three strikes and cancer's out!

(¯`•.•´¯) (¯`•.•´¯)
*`•.¸(¯`•.•´¯)¸.•´ ♥
☆ º ♥ `•.¸.•´ ♥ º ☆.¸¸.•´¯`♥RE

Introduction
I was diagnosed Aug. 2003 with stage 3a breast cancer.

Kathi posted on breast cancer board about this new site and I came down to check it out. The way I worded that sounds like I took an elevator. But I went to Senior survivors by mistake first. I get lost a lot!

Hi everyone!

ron50 said:

Hi all
Thanks for the new board Greta. I was dx in 1998 with stage 111c colon cancer(6 nodes) I have been ca free ever since, as a matter of fact I have just had a scope and have been put out to three yearlies. I fully agree with Scouty. I have been out of treatment for so long that nothing I went thru is of much value to present day sufferers. Having said that more than a few people have said to me ,whatever treatment you had,I want it. My agreeement with scouty is about how we long tirmers have a whole different range of problems confronting us. Since ca I have had pancreatitis,lost my gall-bladder,suffered several bouts of kidney stones,developed moderate to severe neuropathy of the lower legs and left hand,developed three different lots of arthritis,dx with FSGS (scarring of the kidney filters),developed two frozen shoulders ,vertigo attacks(possibly menieres disease), and perhaps worst of all my wife and I separated. So now and for the last three years I live alone and have to deal with all of my ailments alone as well as keeping on working to support myself.
One of my favourite sayings is "surviving survival ain't easy" . Many is the time that I have thought of opting out but I have managed to keep going. I don't get treatment for depression . I most certainly need it,I just don't want it. In the meantime I get by with a little help from my friends on these boards, Ron.

Ron!
What, may I ask, is a frozen shoulder? BOTH my shoulders have pain when I lift them above my head, and my right one (the non 'special' arm from breast cancer) VERY painfully 'pops out' if I so much as twist the wrong way....is this frozen shoulder?

BIG hugs to you, one of my heros. You know we are always here....whatever you need!

hugs, Kathi