Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Welcome long-term survivors!

greta
greta Member Posts: 237
edited March 2014 in Long-Term Survivors #1
Some of you who have been living with cancer for a number of years (in or out of treatment) have asked for a board dedicated to the discussion of long-term survivorship issues. I hope it is helpful.
Best to all,
Greta
(Your CSN staff)
«13

Comments

  • scouty
    scouty Member Posts: 1,965
    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.
  • PamPam2
    PamPam2 Member Posts: 370
    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
    John23 Member Posts: 2,122
    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
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Thanks
    I know 2 years isn't a very long time, but hope I can join in!

    I've been NED since my surgery 22 months ago. :-)
  • KathiM
    KathiM Member Posts: 8,028
    Thanks, all...
    Scouty, Suzann, Greta for your work on this!

    I wonder if there is a way to alert other cancers' boards as to this new one...

    maybe a system-wide post on all boards, or maybe even a 'real' e-mail for those who no longer actively post on a board, from CSN staff?

    With all the cross-cancer use of certain chemicals, what holds for one cancer (neuropathy, for example) can hold for many....

    Hugs, Kathi
  • PhillieG
    PhillieG Member Posts: 4,866
    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
  • jams67
    jams67 Member Posts: 925
    Long term
    We love our new board! Just a click away from the other one. I noticed at CP8 that the newbies were more comfortable with eachother. They felt they knew eachother better because they were posting on a daily basis. I think this will be a great idea!
    Jo Ann
  • scouty
    scouty Member Posts: 1,965
    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
    Sundanceh Member Posts: 4,392
    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
  • PhillieG
    PhillieG Member Posts: 4,866
    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.
  • John23
    John23 Member Posts: 2,122
    scouty said:

    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.

    Hmmmm..


    Instead of having to explain it daily, it probably would be a good
    idea to simply call this forum: "The Five-plus club"; it would've
    removed all doubt.

    Too late to change?




    (I'll go back to my cave now)

    John
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    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
  • PhillieG
    PhillieG Member Posts: 4,866
    Great Idea
    What a great idea to have a forum like this for us. We do have different issues than those who are not that far removed from their diagnosis. I think we all can figure out what a "Long Term" cancer patient is. If you can't, then you may have had too much chemo and that would be instant membership.

    There are many forums on this site, it's really great. There is (at least) one forum that fits each member's needs.
    Thanks again!
    -phil
  • carkris
    carkris Member Posts: 4,553

    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?)
  • RE
    RE Member Posts: 4,591
    Thank You!
    Greta thank you so much this is a great new board, I will surely be visiting from time to time.

    RE
  • RE
    RE Member Posts: 4,591
    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
  • carkris
    carkris Member Posts: 4,553
    RE said:

    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

    thats what I am hoping too
    thats what I am hoping too RE (for both of us)
  • Marcia527
    Marcia527 Member Posts: 2,729
    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
    ron50 Member Posts: 1,723
    Marcia527 said:

    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!

    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.
  • KathiM
    KathiM Member Posts: 8,028
    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
  • New Flower
    New Flower Member Posts: 4,294
    carkris said:

    thats what I am hoping too
    thats what I am hoping too RE (for both of us)

    Who is qualified to be called long- term survivor?
    Hello everyone,
    I am glad that we are having this new subdivision/threadIt is so nice to see many long-term survivors. I have a question: How do you define a long-term survivorship? Maybe if you overcome your prognosis?
    As one stupid resident told me:"For your initial diagnosis you have been doing very well"
    Can I consider myself a long-term survivor? I was diagnosed about 2&1/2 years ago in May 2008 with stage IIIC breast cancer.
    Best of luck to everyone,
    Nw Flowers
  • ron50
    ron50 Member Posts: 1,723
    KathiM said:

    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

    G'day Kathi
    Shoulders are a bit different to most joints ,they consist of a web of tendons and sinews that hold the shoulder joint into the socket. The tendons and sinews become sticky and inhibit the rotation of the shoulder. I can't raise my arms above shoulder level,I can't reach behind my back and if you try either you are rewarded with severe pain. Apparently they will get better in time of their own accord but it can take from 18 mos to 3 years plus. There are 3 stages freezing (painful)frozen (Not so painful)and healing ,not painful but restrictive. They wanted to do a saline distension on my left shoulder . They pump saline and cortisone into the joint to blow appart all the adhesions. I chose not to as it does not come with guarantees. Certainly a lot of auto immune problems seem to follow chemo. I have osteo,inflammatory and psoriatic arthritis. I was injecting methotrexate every saturday (not nice it feels just like 5Fu). I started suffering severe vertigo attacks bad enough to put me in hospital and always on a Sunday,so I stopped the meth. Now I am having to sit down regularly when I shop. They think that the neuropathy is also an auto immune result of the arthritis. The kidneys are either caused by fleet preps or arthritis.
    But life goes on and we all have our burdens to bear . (((((((kathi))))))))ron.
  • KathiM
    KathiM Member Posts: 8,028
    ron50 said:

    G'day Kathi
    Shoulders are a bit different to most joints ,they consist of a web of tendons and sinews that hold the shoulder joint into the socket. The tendons and sinews become sticky and inhibit the rotation of the shoulder. I can't raise my arms above shoulder level,I can't reach behind my back and if you try either you are rewarded with severe pain. Apparently they will get better in time of their own accord but it can take from 18 mos to 3 years plus. There are 3 stages freezing (painful)frozen (Not so painful)and healing ,not painful but restrictive. They wanted to do a saline distension on my left shoulder . They pump saline and cortisone into the joint to blow appart all the adhesions. I chose not to as it does not come with guarantees. Certainly a lot of auto immune problems seem to follow chemo. I have osteo,inflammatory and psoriatic arthritis. I was injecting methotrexate every saturday (not nice it feels just like 5Fu). I started suffering severe vertigo attacks bad enough to put me in hospital and always on a Sunday,so I stopped the meth. Now I am having to sit down regularly when I shop. They think that the neuropathy is also an auto immune result of the arthritis. The kidneys are either caused by fleet preps or arthritis.
    But life goes on and we all have our burdens to bear . (((((((kathi))))))))ron.

    Thanks for the info!!!
    ...you described my shoulder pain to the T!

    Darn beast....thought I was thru with it...sigh...

    I figured it was more the osteoporosis from the chemo, that continues to plague me....my last DEXA has me at -2.7T...sigh...the bones of a 90 year old woman. I'm a bit anxious now, my 87-year-old mother is starting 'compression fractures' in her spine. VERY painful, and, according to her doc, not much to do for it....BUT (It's all about ME of course) I realized that with my osteo in 'full bloom', I could start having the same.....It's tough, this living thing!!!

    BIG hugs, as always, dearheart!

    Kathi
  • ron50
    ron50 Member Posts: 1,723
    KathiM said:

    Thanks for the info!!!
    ...you described my shoulder pain to the T!

    Darn beast....thought I was thru with it...sigh...

    I figured it was more the osteoporosis from the chemo, that continues to plague me....my last DEXA has me at -2.7T...sigh...the bones of a 90 year old woman. I'm a bit anxious now, my 87-year-old mother is starting 'compression fractures' in her spine. VERY painful, and, according to her doc, not much to do for it....BUT (It's all about ME of course) I realized that with my osteo in 'full bloom', I could start having the same.....It's tough, this living thing!!!

    BIG hugs, as always, dearheart!

    Kathi

    Arthritis
    G'day again Kathi,
    Under no circumstances let them prescribe Prednisone or any related steroid for your arthritis or shoulders. It is the WORST medication that I know of for stripping calcium from your bones. I was on a high dose for my kidneys for nearly 18 mos and I was orderred to take two calcium supplements three times a day and there was some conjecture as to whether that would help. Cheers Ron.
  • RGW
    RGW Member Posts: 60
    ron50 said:

    Arthritis
    G'day again Kathi,
    Under no circumstances let them prescribe Prednisone or any related steroid for your arthritis or shoulders. It is the WORST medication that I know of for stripping calcium from your bones. I was on a high dose for my kidneys for nearly 18 mos and I was orderred to take two calcium supplements three times a day and there was some conjecture as to whether that would help. Cheers Ron.

    Can someone tell me
    what is the "CRC Board?"
  • abrub
    abrub Member Posts: 2,173 **
    RGW said:

    Can someone tell me
    what is the "CRC Board?"

    CRC = ColoRectal Cancer
    I'm also trying to decide if I fit into Long Term survivor at 3 1/2 years post dx (3 years NED). Tho I'm glad my experiences can be helpful to the newer members of our "family", I often want to escape the discussions of the nitty-gritty.

    Based on out-living prognosis, one dr (whom I fired) "gave" me 2 years, tho possibly as long as 3-5. I currently feel fine, except for residual neuropathy plus pain from adhesions.

    I do appreciate having another place to go.

    Alice

    Appendix Cancer, dx 4/07
  • johnnybegood
    johnnybegood Member Posts: 1,117
    thank you CSN staff
    i am a 2 yr survivor dx with crc in sept 2008.this web site was great for me during my radiation,surgery.and 10 rounds of chemo.BUT it seems after chemo things for me went down hill physically due to the lasting side effects and mentally having a hard time coping with where am i supposed to go from here.as a fellow crc member put it well"Life after cancer,now what" im going to give this new board a try as i have not posted since janurary 2010.it will be good to see some old friends and hopefully make some new ones...Godbless...johnnybegood
  • cathyp
    cathyp Member Posts: 373

    thank you CSN staff
    i am a 2 yr survivor dx with crc in sept 2008.this web site was great for me during my radiation,surgery.and 10 rounds of chemo.BUT it seems after chemo things for me went down hill physically due to the lasting side effects and mentally having a hard time coping with where am i supposed to go from here.as a fellow crc member put it well"Life after cancer,now what" im going to give this new board a try as i have not posted since janurary 2010.it will be good to see some old friends and hopefully make some new ones...Godbless...johnnybegood

    What do you all see as the
    What do you all see as the purpose of this board vs the "long term effects board"? Is that board for the physical aspect and this board for the mental? Just wondering!!
    Cathy
    21 years, Recurring Hodgkins Lymphoma
    3 years, Invasive Ductal Carcinoma
  • ron50
    ron50 Member Posts: 1,723
    cathyp said:

    What do you all see as the
    What do you all see as the purpose of this board vs the "long term effects board"? Is that board for the physical aspect and this board for the mental? Just wondering!!
    Cathy
    21 years, Recurring Hodgkins Lymphoma
    3 years, Invasive Ductal Carcinoma

    Hi Cathy
    Part of it is that a lot of us don't have any pertinent input to the original board we were on. I was on a regime of chemo that is no longer used so it is not much use telling some one in todays treatment what I did. Having said that it is really good for someone in treatment now to be able to go to a board and check out what can be achieved with a bit of luck. I guess some of the long term survivors don't have ongoing issues (hard to imagine)so it gives them somewhere to go without seeming to gloat(a term i have heard used against a long term survivor)about their survival. Cheers Ron.
  • KathiM
    KathiM Member Posts: 8,028
    ron50 said:

    Hi Cathy
    Part of it is that a lot of us don't have any pertinent input to the original board we were on. I was on a regime of chemo that is no longer used so it is not much use telling some one in todays treatment what I did. Having said that it is really good for someone in treatment now to be able to go to a board and check out what can be achieved with a bit of luck. I guess some of the long term survivors don't have ongoing issues (hard to imagine)so it gives them somewhere to go without seeming to gloat(a term i have heard used against a long term survivor)about their survival. Cheers Ron.

    VERY well put, Ron!!!!
    It's hard to be proud of our accomplishment, when others are not quite so lucky. Even when we all fought hard, while in the treatment cycle....

    Harder still to whine about normal, everyday stuff on an active treatment board when there are others who are facing eternity....

    IMHO,
    Kathi

    6 years (November - YEA!) stage III rectal (squamous cell carcinoma)
    5 years (August - YEA!) stage II breast (invasive ductal adenocarcinoma)
    no reoccurance, to date (someone have some wood for me to knock on?)