Welcome long-term survivors!

New Flower

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

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

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

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

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

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

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

johnnybegood said:

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

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

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?)

Unknown

KathiM said:

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?)

This comment has been removed by the Moderator

greta

definition of long-term survivor
I haven't found one, single definition of a long-term cancer survivor. The most predominant one seems to be 5-years of cancer-free survival. There are also various proposed definitions for certain specific cancers that range from 3 to 5 years of cancer-free survival. However, most discussions of long-term survivorship that I reviewed don't define who a long-term survivor is in terms of either years since diagnosis or disease status (remission or not).

The long-term effects board was created as a place for members to discuss long-term effects of cancer or its treatment. This could be effects other than physical, but was created at the request of members who wanted to talk about physical effects.

The long-term survivors board was created for those who self-define as a long-term survivor to talk about whatever their long-term survivorship issues might be.

Would it be helpful to have two boards for long-term survivors--one for those in remission and one for those who aren't? Or is the preference to leave this board as is?

Regards,
Greta
Your CSN staff

KathiM

greta said:

definition of long-term survivor
I haven't found one, single definition of a long-term cancer survivor. The most predominant one seems to be 5-years of cancer-free survival. There are also various proposed definitions for certain specific cancers that range from 3 to 5 years of cancer-free survival. However, most discussions of long-term survivorship that I reviewed don't define who a long-term survivor is in terms of either years since diagnosis or disease status (remission or not).

The long-term effects board was created as a place for members to discuss long-term effects of cancer or its treatment. This could be effects other than physical, but was created at the request of members who wanted to talk about physical effects.

The long-term survivors board was created for those who self-define as a long-term survivor to talk about whatever their long-term survivorship issues might be.

Would it be helpful to have two boards for long-term survivors--one for those in remission and one for those who aren't? Or is the preference to leave this board as is?

Regards,
Greta
Your CSN staff

My vote is only one...
And not get too technical as to what 'qualifies' you to post here....anyone out of the throws of first-line treatment issues, which I can't answer anyway, I think is ok...IMHO...

I have many dear friends that are technically still 'in treatment' because of drugs to keep reoccurance at bay...heck, me taking Tamoxifen for my breast cancer could get me into this group, too...

I would hate to have to go multiple places to see all of my friends...I am already actively posting on the colorectal cancer, and the breast cancer boards...one more (long term survivors) is ok...two...well, I have too much chemo brain left over to remember that many!!

Thanks, again, Greta, for all of your kind work on this!

Hugs, Kathi

johnnybegood

KathiM said:

My vote is only one...
And not get too technical as to what 'qualifies' you to post here....anyone out of the throws of first-line treatment issues, which I can't answer anyway, I think is ok...IMHO...

I have many dear friends that are technically still 'in treatment' because of drugs to keep reoccurance at bay...heck, me taking Tamoxifen for my breast cancer could get me into this group, too...

I would hate to have to go multiple places to see all of my friends...I am already actively posting on the colorectal cancer, and the breast cancer boards...one more (long term survivors) is ok...two...well, I have too much chemo brain left over to remember that many!!

Thanks, again, Greta, for all of your kind work on this!

Hugs, Kathi

my home board
will always be colorectal but on the advise of my surgen in janurary2010 he suggested i take a break from all cancer talk for a while.i did as he said and have missed my semi colons very much,still lurking every once in a while only to be in tears afterwords because of our loses or so many new people with the beast.kathim said there was a new board for me to try.as so many others i am effected by the long term effects of radiation and chemo which by the way i was never told about from any doctor.i am hoping this new board will give me some insight on how others deal with these issues physically and mentally.i dont consider myself long term yet but would like to hear how to cope so i can be a long term survivor....Godbless....johnnybegood

Marcia527

greta said:

definition of long-term survivor
I haven't found one, single definition of a long-term cancer survivor. The most predominant one seems to be 5-years of cancer-free survival. There are also various proposed definitions for certain specific cancers that range from 3 to 5 years of cancer-free survival. However, most discussions of long-term survivorship that I reviewed don't define who a long-term survivor is in terms of either years since diagnosis or disease status (remission or not).

The long-term effects board was created as a place for members to discuss long-term effects of cancer or its treatment. This could be effects other than physical, but was created at the request of members who wanted to talk about physical effects.

The long-term survivors board was created for those who self-define as a long-term survivor to talk about whatever their long-term survivorship issues might be.

Would it be helpful to have two boards for long-term survivors--one for those in remission and one for those who aren't? Or is the preference to leave this board as is?

Regards,
Greta
Your CSN staff

IMO
I think the board is fine like it is. Thanks Greta.

PhillieG

greta said:

definition of long-term survivor
I haven't found one, single definition of a long-term cancer survivor. The most predominant one seems to be 5-years of cancer-free survival. There are also various proposed definitions for certain specific cancers that range from 3 to 5 years of cancer-free survival. However, most discussions of long-term survivorship that I reviewed don't define who a long-term survivor is in terms of either years since diagnosis or disease status (remission or not).

The long-term effects board was created as a place for members to discuss long-term effects of cancer or its treatment. This could be effects other than physical, but was created at the request of members who wanted to talk about physical effects.

The long-term survivors board was created for those who self-define as a long-term survivor to talk about whatever their long-term survivorship issues might be.

Would it be helpful to have two boards for long-term survivors--one for those in remission and one for those who aren't? Or is the preference to leave this board as is?

Regards,
Greta
Your CSN staff

You say toe-mah-toe, I say toe-may-toe

I think it should have a light-blue background with a red border. Just leave it as is. I think it's a good idea to have it but people are not going to agree on what "long-term" means as opposed to "short-term". I would imagine we all know what the difference between long and short is but people are going to do whatever they want anyway. It comes out every week in the forums we already have. People who have been at this for a long time will have their discussions and others can join in and share or whatever. Over time I think it will find it's purpose and audience and this will be a moot point. It IS important that it's light blue though... :-)

KathiM

PhillieG said:

You say toe-mah-toe, I say toe-may-toe

I think it should have a light-blue background with a red border. Just leave it as is. I think it's a good idea to have it but people are not going to agree on what "long-term" means as opposed to "short-term". I would imagine we all know what the difference between long and short is but people are going to do whatever they want anyway. It comes out every week in the forums we already have. People who have been at this for a long time will have their discussions and others can join in and share or whatever. Over time I think it will find it's purpose and audience and this will be a moot point. It IS important that it's light blue though... :-)

Nah,
Light ROYAL blue is better....ROFL!

Trust you, dearheart, to put a smile on my face...

Hugs, Kathi

KathiM

johnnybegood said:

my home board
will always be colorectal but on the advise of my surgen in janurary2010 he suggested i take a break from all cancer talk for a while.i did as he said and have missed my semi colons very much,still lurking every once in a while only to be in tears afterwords because of our loses or so many new people with the beast.kathim said there was a new board for me to try.as so many others i am effected by the long term effects of radiation and chemo which by the way i was never told about from any doctor.i am hoping this new board will give me some insight on how others deal with these issues physically and mentally.i dont consider myself long term yet but would like to hear how to cope so i can be a long term survivor....Godbless....johnnybegood

I agree....
I have already learned something from my great guru, Ron, about frozen shoulder...

I just thought I was getting old...and that's not bad, either!

Hugs, Kathi

Unknown

This comment has been removed by the Moderator

2bhealed

Thank You!
Greta!

This board is a relief and a respite for me. It's been too hard to post much on our CRC board for me personally due to losing too many friends on there to cope with at times. But I still want to pal around with my buds on here so it's wonderful to see my semis chiming in here.

Just wanted to add my $.02.

For anyone else out there I'm a Stage III colon cancer survivor who has been cancer free for 9 years post surgery (8/01) having done only alternatives (juicing, TCM, acupuncture, etc) to heal my cancer.

This board was one of my life savers at the time and the place I found friendships that have lasted (with those who are still alive) all these years. You know who you are! ;-) The ones who have gone on before us will remain in my heart forever.

peace, emily