CSN Login
Members Online: 9

Do NED patients tend to leave the forum?

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

For those of you who have been here for a long time, I'm just wondering if people who get well tend to leave the forum?

Also who would be the person who is not around anymore (either passed or got better and left), that left the greatest impression on you?

Laz

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

All leave an impression, all fought valiantly whether they left due to NED, due to death of a particular cared for one, or if they passed.  ALL hold a place in our hearts, and an impression upon us.

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

Hugs, Kathi

angelsbaby's picture
angelsbaby
Posts: 1154
Joined: May 2008

well said

 

michelle

 

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

For many it is not a matter of leaving when NED or the loved one has passed.  Many choose to become lurkers rather than regular posters while they "process" the change.  That said, many of us still in the fight take "holidays" from the board as well.

As Winter Marie said, every person who posts here leaves their mark...becomes memorable...because when they join...they become part of the virtual family (with the exception being the spammers we occasionally get).

While some do truely make a deeper impression with their willingness to share, their attitude, their humor, their resiliance...it is impossible for me to single out just one...and to make a list of some there would be a risk of leaving off someone who brought great meaning to the fight...and that includes our wonderful caregivers who also post.

The only ones we truely lose as posters are those whose voice is silenced forever by this dreaded disease...but they remain in our hearts.

Marie who loves kitties

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

It's been my experience that often people who become NED or Cured do leave the forum. Some lurk but there are some who wish to not be reminded of this chapter of their lives.

With the other question about who left the greatest impression on me, it would have to be Jana Miller.
Yes, we're all wonderful but Jana was exceptional IMO....

Sonia32's picture
Sonia32
Posts: 1062
Joined: Mar 2009

Still here but more of a lurker. I can n teever really leavae as this place and the people have done so much for me. Some of us tend to hang on facebook i have a group there...like a home away from csn or when you might want a break from here. I know we all never forget, as some of our friends are still in battle. And even the class of neds some tend to go back a class if the beast comes back...so it always stays with you one way or another

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I just hear the words NED for the first time last month...I am still here and plan to check in when I can.  I guess for me I come back to check on my friends here...when I was actively fighting this...like when doing chemo, getting scans, etc...I was on here a lot more...looking things up and asking questions.

Now that the kids go back to school on Monday, things are going to be really busy.  I hope to be able to check in at least oncd a week...but I may not post to every post.

alex

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

Unfortunately, many of the people that were on the forum when I joined almost 4 years ago, unfortunately, have lost their battle.  Some who achieved remission tend to put cancer behind them and try to regain some normalcy in their lives.  Although so very many have had lasting impressions on me, four people come to mind, and their deaths were so very hard.

Shayenne (Donna) early 40's, mom to 4, sudden brain met and she was gone.  Now that gal really had a kick ass attitude!

Idlehunters (Jenny) another gal, around 50, again a sudden brain met and she was gone.  She would not hesitate to tell someone to get off their rear and get on with it, dont' let cancer and chemo stop you from anything.

Then there was Lisa42, a gentle soul if there ever was one.  Mid 40's, mom to 3.  Her liver just would not cooperate.  I remember crying when she posted she had been to the doctor, and it would only be a few weeks, and she had to tell her kids.  She was gone before those few weeks went by.

We can't forget Eric42.  Craig and Jenny visited with him when he went on hospice care. 

There are so many others that left a lasting impression but those four come to mind immediately.   

Tina

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

But Kerry S. came to mind when reading the OP.  Attitude, Attitud, Additude.  Mind, Body, and Spirit. I try so hard to keep that mantra in

Robert. 

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

I remember Kerry.  He was something else.  No matter what was going on, when Kerry logged on there was no holding back the tears and laughter.   Everyone was his friend and talk about a guy who would tell it like it was...that was Kerry.

Tina

thingy45's picture
thingy45
Posts: 565
Joined: Apr 2011

I am Ned, but I have not.left, I lurk, because I feel I have not much to give. I decided not to take Chemo or Radiation, my own decision against my onc's advise. I have been lucky so far, still NED. However very nervous, next week Friday a complete bones can planned,due to some pain and problems I have.

Lisba 42 , also Buzzard come to mind,  so many helped me to make decisions . Their faces are forever in my heart.

Cancer sucks, period, no matter what kind of cancer.

love to you all, Marjan 

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

There are so many who were fantastic.  While it is so hard to pick just one - Rob (Rob in Van) was the one who probably had the overall biggest impact on me.  We kept in touch up till the end - long after he stopped participating much here, and I had also.

Some who are NED leave.  Others die.  Others have found options that work better for themselves to give support and/or get support.

traci43's picture
traci43
Posts: 411
Joined: Jul 2007

I've been in this fight for 6 years now, always more of a lurker than a poster.  I tend to be more active when my cancer is active as I try to find out what new things I can do to fight this.  I've learned so much and continue to learn every day.  When I'm clear and off chemo, I tend to be less active, not because I'm trying to forget what's happened, but because I'm out living and enjoying life.

 

I love winter marie's response, everyone has left an impression on me, and I've learned so much from all of you.  It's quite sad when a member or their loved one passes because everyone is fighting so hard.

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Someday I hope to find out and I will let you know

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013
 

...and fighters is essential!

Every time I see a member dropping by and giving us a rundown of what happened to them in the last couple of months or years, gives me incredible hope, strength and encouridgement. This energy, this incredible power of the human spirit is just as important, if not more, than the treatment we receive.

I studied medicine for 5 years, but first time I experience the incredible distruction of a disease on myself and others. We owe it to ourself and to others to throw in all the support, all the tools, all the experience and knowledge to help ourself and others going through this dreadful journey.

I noticed that there are two basic types of personalities on this forum just like in the real world. There are givers and there are takers and there is nothing wrong with that, because we need each other. The givers have the need to give, the takers have the need And they are the best receivers. The givers are here all the time giving updates about their progress, difficulties or stability. They stay on to give support, information, advise and tips. The takers don't say anything most of the time, they deal with their problems alone which I believe is not beneficial for healing. They swing by once in a while, again, saying nothing about what's going on with them, just asking questions.

I would like to encourage both givers and takers to be more active for their own benefits and other's. The NED's need to give us that hope that there is an acceptable result to this disease that we can live with. The takers have to open up for their own sakes, so they don't have to fight alone. I believe those that would bring their own deepest fears to the surface could contribute to this cause very much.

Bless you all,

Laz

 

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

November 2004 dx'ed stage 3 rectal cancer.  Chemo, rads, surgery to remove my rectum followed.  Was told I had about 6 months of living left.

 

January 2005 dx'ed stage 2 breast cancer.  (found during a PET scan for the rectal).  Surgery, chemo, rads followed.

 

NED/last treatment July 3, 2006.

 

I never WAS good at this 'new math'....but the way I calculate it, the 6 months has turned into almost 9 YEARS, and I am still NED on both!!!

 

Hugs (from an oldie that will check in more often now...been busy with a new heart for my beau), Kathi

 

P.S.  I will speak to the oldies not posting often...as we realize our lives DO go on, living life gets in the way!!  THIS is a GREAT thing!!!!!

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

sigh....just not ME....sigh...I shall survive!!!

 

Kathi

Trubrit's picture
Trubrit
Posts: 1275
Joined: Jan 2013

I'll respond. 

I think you are incredibly strong. You have and are fighting battles of breast and rectum, and now you are NED. 

Now you get to impart your wisdom and strength to the battle your beau is going though. 

Blessings to you both. 

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

*smile*.....I love you more than my luggage!!!  Thank you for your warm words!!!!

 

Hugs, Kathi

 

(BTW, he is doing FANTASTICALLY!!!!!!  Week 9, and no sign of rejection!!!!  WHEW! WHAT a different world the heart world is!!!  Very little organized support, and dismal paths for information....BUT, I'm a trooper....I'm sharing what I know as I find it with others that have gotten new hearts, and so new lives, around the time we got 'ours'.....*smile*....)

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

that was very well said i dont know what category you would put me in.i dont consider myself as a taker as you put it even tho i dont say much on here i do get on this board several and i mean several times a day and read to keep up with my cyber family.my reason for not putting alot of info on here about what has happened to me in the past 5 years is because overalll medically i have had bad experiances with all my treatments,from the radiation +xeloda to shrink the original tumor in my rectum in 2008,to the oxy that felt like it almost killed me 10 treatments of that when the onc(who i fired)would not listen to me about my side effects in 2009,to doctors telling me i was cured and in jan,2011 had mets to my liver and one lung,had liver resection done in sept 2011,had rfa done on a spot that came back on my liver in feb2012,had my spleen out in feb 2013 so i could continue trying to save my life with chemo because platelets would not rise,now i have as of feb 2013 38 spots in my lungs and im inoperable.i dont want to scare the newbies on here by telling of my bad experiance and that is why i dont post alot not because i am a TAKER as you put it,i am just one who has a hard time with treatments and dont want to discourage anyone new on here like yourself so i tend to be a little quiet unless someone ruffles my feathers.im sorry to be blunt,im sorry i can be more helpful on here but that is just the way i feel.i think more people tend to post more about thier good responses to thier treatments than the bad times they are having...Godbless...johnnybegood

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

The way I see it is that any experience that teaches us something, broadens our good and bad perspectives is invaluable. When I know what you, Craig, Joe, kennyd went trhrough, even though is frightening, but it's an option, a possibility. But what I get out of it that the human endurance is incredible.

In our society we have an opinion about "takers" as negative. I don't see it that way. Not being able take or receive is a big problem for a lot of people And just as disadvantages for "givers" as the feel of isolation if takers.

So god bless the givers and god bless the takers, because without each other we would be lost. But we both need to do more what we are bad at, right?

Laz

kennyt's picture
kennyt
Posts: 108
Joined: Jun 2013

I'm not sure if "takers" is the best choice of words.

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

In our society "taker" has a negative, selfish sound to it, which I think is wrong. Givers give, but have hard time receiving. Givers need takers who are good at receiving and truly appreciate the gift. There are bad givers too, who have an agenda or strings attached. Bad takers are who just take, not feeling or showing gratitude. 

Givers and takers compliment each other. At the same time I believe givers need to practice receiving and takers need to practice giving.

Laz

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I don't agree with labeling people like that.  It really is not that simple.

I see that you haven't been around here long, so you may not be up on history over the years in this forum.  Not everyone that doesn't participate much here is a taker, rather than a giver...  some have been around a long time and have found that they are able to do more good in other venues.  Some have found they can get better support without so much fighting in other venues.  Some of those "takers" you refer to get what they need without needing to post.  They search and find what they are looking for.  But they may be afraid to post due to some attitudes on this board in the past, and fear of being attacked.  You just can't compartmentalize support systems like that.  Some come back and lurk a bit, but don't post much because they've been involved in too much drama at different points in the past on this board, and just don't want to deal with it - but they still might check in on old friends.

There are many who were very valuable to me and to others several years ago that don't come around much, and I fully understand their choice.  It does not mean they aren't VERY giving.  And it is not my place to judge someone who isn't comfortable posting and/or sharing their story.  They shouldn't be chastised for coming here for information without outwardly participating.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

for your input very well said,i have alot of respect for you with all you have been thru,miss you posting but i know you stay very busy(((hugs)))...Godbless...johnnybegood

danker
Posts: 722
Joined: Apr 2012

Going on three years NED and I still post. We are all different  in how we respond!!!

thingy45's picture
thingy45
Posts: 565
Joined: Apr 2011

Hi LAZ,

I don't consider my self as a taker. I give freely and often of myself, I volunteer for many different charities, including visiting, elderly shut-ins, sick people etc.

Yes, I am a lurker, the reason is that I declined the chemo and radiation, so I have nothing to give as advise there are many better qualified then I am.

I am supportive because I am a firm believer of possitive thinking, saying thank you for all we have and will receive.

So I don't know if I qualify as a "taker" or as a "giver" is there another word for me on this board?

I have been NED since 2011, T3N1M0 stage 3. Left Hemi very high up and down below.

I believe in living life to the fullest each day possible and ,my motto is "one day at a time".

I am nervous for every CTscan, CEA test and now a bonescan, but keep those things to myself, there are people

who are fighting the hard fight, who need our love and attention more then I do.

Hugs to all,

Marjan

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

I myself enjoy every little input, little personal events, trips etc. people did or doing. Imagine if all we talked about was cancer. Then this forum would be a very dark place.

I think if a fighter or a survival has anything to say here is an inspiration to most, because it makes us feel normal. Some people say " I have nothing to say, because other people said it before". Well that's ok. But look at how many good wishes people get when they go on a trip during a chemo break. Or express their desire and hope to see their nephew's graduation. 

It doesn't have to be all cancer. We all love Craig not because he only writes about his struggle, we love him because he tells us a lot of things about his life, aspirations, plans even when he is in very bad shape. Or Joe, who is so vibrant even when he is down. And there are countless people here who will never miss an opportunity to send well wishes to others before scans or tests. Congratulate for good news and comfort after bad news. 

All I'm saying that the more people participate the better and I would love and encourage healed patients to revisit and show us hope, because as I'm finding out, you can be 20 years NED cancer will still never leave your mind.

Laz

Nana b's picture
Nana b
Posts: 2707
Joined: May 2009

I miss a lot if the oldies. I try and post as much as I can.  Help where I can.  Some leave because they didn't like the BS that they git. must say in 2009 and 2010 we had a great group here. It's good now but back then we all helped each other, Buzz would throw the rope to all the newbies.   Pulling them up from their newly diagnosis and depression.   Sad that depression got ahold of him. 

 

2bhealed and Scouty.  naturalist.  Miss them lots.  Hope all is well with them. 

Plus the others already mentioned. Donna left way to soon. Lisa, who I got a chance to meet, too sad. Eric, we all loved Eric. Michelle used to post for her hubby.  Cheryl, she helped many with her knowledge. Many more that left us After thus time, that I didn't get to know that well. 

We have many lurkers. 

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

I have a favourite saying" surviving survival is not easy ". I have always described myself as an accidental tourist of cancer. Why have I survived.? For a start because I knew without any doubt that I would. Probably because I didn't care one way or another if I did or not. Next Jan will be the end of year sixteen. Sometimes I think I have suffered worse than some who passed quickly. That is not self pity it is simply that I would have much rather have an epitaph that read "he died after a short illness than he died after xx years of continuous poor health " .
I have tried all the regimes suggested for healthy after cancer life. For a two year period I was walking around fifty miles a week every week. Tried juicing ,to quote a movie "yeah you can live on it, but it tastes like crap". I don't drink or smoke. I am close to having my virginity re-instated thanks to the effects of cancer, surgery and chemo. I don't take anti-depressants. My system is a wreck. I can't feel either leg below the knees or my left hand. I had nerve conductivity tests . There was no signal in my left leg and minimal in my right. The neurologist told me he did not know what caused it and that he could not help me. My kidneys are an enigma. They work fine at producing urine and ridding my body of toxins. The trouble is they also rid me of up to 4 grams of protein a day. The protein keeps your blood in your veins . when you lose it you suffer oedema. I suffer peripheral and pulmonary oedema. It is not much fun waking in the middle of the night with dreadful nightmares because you cannot absorb enough oxygen. They tried lots of things to help my kidneys . By far the worst was 75mg a day or prednisone for 18 mos. It caused osteoporosis and type two diabetes. It did not help my protein loss . Another specialist tried three blood pressure drugs. My protein did not drop but I nearly did walking around with BP of 65 over 50. After the prednisone I suffered a flare of psoriatic arthritis. My rheumatologist tried me on several drugs. These guys have an arsenal that oncologists would kill for. The only drug that worked and even helped my kidneys was methotrexate, yep ,another chemo drug and potent immune-suppressant. Trouble was every time I tried it my neuropathy flared big time. No more meth said the neurologist. In amongst all of the above I suffered a bout of acute pancreatitis and subsequently lost my gall bladder. During the whole of the 15 + years social security deemed that I was not ill so I have continued to work . At one stage I developed bi-lateral frozen shoulders. No not sick enough for disability, keep working. On the lifestyle side of things , my wife got tired of me being sick all the time so now I live alone and have for several years. Recently I started to have some unusual turns . I would start sweating profusely and feel quite ill. I would have to sit and rest till it passed. I was put in for some heart stress tests. They showed that my heart had developed premature ventricular ectopic beats. No one seemed to worry . Apparently every one can live quite happily with a few hundred ectopic beats a day. They fitted me with a 24 hr holter monitor. I recorded over ten thousand ectopic beats in 24 hrs plus a couple of sessions of tachycardia. I have an appointment to see a cardiac specialist in a few weeks. Because I have been diagnosed with an auto immune disease of unknown type I would never be considered for any sort of transplant. Because of my kidneys the only pain killers I can take are pannadol. I take diurectics every day so that I don't drown from the inside. I have to take stuff called questran lite every day . Since my gall was removed I suffer bile salt mal absorbtion and chronic diahorrea . The questran binds the bile acids and takes them thru.
Like I said Laz surviving survival is not easy. I haven't posted this to scare or upset anyone ,it's just the way it is . Surviving cancer is about more than just beating the disease,,,,Ron.

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

for sure not all stage IV NEDs leave. I would never consider leaving...not because I think I can do "so much good" here but because I cling to the forum...in the times of my deepest darkness I turned here and there was always someone here.  Most of those people have gone....only a very very few left...That in itself is frightening....after so many years why am I still here????? who knows....not me.  So so so many gone before...sending special hug for J be Good....tonight...and Pepe and Phil and Craig and Diz and and and.....back from the northern woods.....mags

 

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

As a related anecdote, I tried to start a support group at my church, as we had quite a few people over the years get cancer (mostly women with breast cancer.)  I didn't really know everyone's stages and when they had it, or if anyone even had it now, but I knew that it was pretty common. So I started approaching folks with my idea, and most had completed their treatment and had left it behind.  As if if they never wanted to deal with it ever again (who does) and they probably burnt their wigs as a closure ritual!  Na na na na, way hey hey, good bye! That sort of attitude.  Most of these people werent stage IVs, I might add. 

When you first posted this topic, I immediately thought of those people at church who were not interested in reliving their cancer trauma.  Period. So maybe some people on our board who do become really NED (IIs and IIIs) are the same... And they just do not want to look back.  Dunno.

I did meet a stage IV ovarian cancer person at church - we bonded over Xeloda. She has a really unusual form of it but is alive and doing well. 

I think if i was ever NED (hah! in my wildest dreams) I would want to move on competely and wouldn't come back here. I'd be tempted, like googling a past relationship, but I would really try to move forward and not. Cancer takes up a pretty big space in my life now, and if I were healed, I would want to fill that space with other things.  But, I'm not NED so can't really say. Sometimes I obscessively check this board more than five times a day - if I'm feeling really anxious I feel connected when I see your posts. Isn't that weird??? 

anyway. I'm glad for the people who do overshare (=)  about their symptoms, treatments, etc because I do think it helps people, us, and lurkers. Are the sharers givers or just extroverts??  I don't know who I'd classify as a taker - definitely the people trying to sell water and supplements ;-)  But some people come here for a short time in a panic (usually caregivers) and want advice or want to vent, and then they are gone.  But somebody usually takes the time to interact with them and give advice.  And that's really kind.

At the end of the day, People get what they need out of this board.   it all works out and that's what matters.

anyway cheers all

Karin

 

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

You are wonderful. Love that you post about the little events of your life and hope that this is all we have to do here one day.

Laz

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

Now we know why you are a 16 year survivor and keep going. Your sense of humor. I have never laughed so much reading so much misery. And forgive me saying this, but I won't lie to you, some of your statements just killed me. My wife just asked me: what are you laughing at so hard? I'm like: the Cancer Survival Network. This is the attitude that's more potent than any medicine. 

Life gave you a lot of crap, but awesome tools to handle it.

God bless you my Friend. You need to be here more. Thank You.

Laz

Trubrit's picture
Trubrit
Posts: 1275
Joined: Jan 2013

You amaze me. You make me put things into perspective. You give me strengh.

I feel guilty that you have to suffer so much, while I sit back and feel grateful that I suffer so little in comparison. 

I am so sorry about your wife. It seems to me that she is missing out on a great relationship with a great man. 

Keep on surviving, Ron. You need you and we need you. 

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

HER loss, Ron!!!

 

Hugs, Kathi

Roddy2
Posts: 21
Joined: Dec 2012

Mate. The heart of CSN is people like you- "Survivors". To have been through as much as you have says so much for your Aussie guts and determination. I feel I am on Easy Street in comparison. Diagnosed with Stage 4 MCRC in June 2012, I suffer very little side effects with just a bit of neuropathy in the feet from the Oxally. It is a hard one for friends and relatives around me to accept I have cancer, as I don't look or feel ill and generally go about a normal life at the moment. I think people generally have this pre-conceived idea that if you have this bloody disease, you have to be on your death bed. Keep trying to prove them wrong. Keep hanging in there Ron. Your determination provides the drive for a lot of others to work through this.

cheers

Roddy

foxy
Posts: 188
Joined: Oct 2005

You have really been through heaps since you were first diagnosed.  I am now heading for my 20th anniversary of stage 4 and my hemicolectomy and wedge resection of liver. We both had the same chemo, and I would hope no one ever has to go through this now. I also have many health problems, but I am Cancer free.Hope things can improve for you.

 

Love Virginia.

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

It always makes my day to see your post. I wish we didn't have the levamisole but you have to wonder if it is one of the reasons we are still around. What amazes me is that with nearly 36 years combined survival between the pair of us nobody has bothered to ask me why I'm still alive,,,Don't know about you. You would think they would be interested in long term survival. Still I get the feeling that most of the medical profession don't want to talk to us or about us.... Big hugs,,,,Ron.

foxy
Posts: 188
Joined: Oct 2005

I think you may have hit the nail on the head about our servival Ron.  I have too have wondered about the dreaded Levamisole, and I have not heard about anyone being prescribed it  since our days. Apart from cattle.  Big hugs to you too Ron.

 

Love Virginia.

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

WHY are they not looking at we 'long term, beat the odds' survivors?  I would thing that by studying us, they could find some clues as to what makes us different, and go with it!

I must confess, I am not as long 'in the game' as you two....but with my 2 cancers both in the lymph system, and no recurrance...you think SOMEONE would be interested....

Besides ME, of course...*grin*.....ALWAYS must, in the end, be about ME!!!

 

Hugs, to you both, you were and are my inspiration!!!

 

Hugs, Kathi

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

I had a maternal grandmother who had a breast off at age 45 , she passed away at age 96. I really wonder if some of us are genetically programmed to survive. Despite our illness and the related stress of our lives, I can only imagine how stressful it is watching some one you love go thru a heart transplant, we continue to survive..It is very hard sometimes tho when we see our friends going thru such hell to just accept that we are surviving when they are not..... There must be an answer somewhere. I see a cardiac specialist in a couple of weeks . I don't think I have a serious heart problem , I think it is all coming from the fact that I am losing nearly 4 grams of protein a day thru my kidneys, and I am not being treated for it. I think it is the oedema and particularly , pulmonary oedema that is stressing my heart... Big Hugs to you and your partner, wishing you both a reprieve from any sort of health problems and some stress free good times...Ron.

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

I think you are on to something about 'genetically engineered to survive'....

As I've shared before, my mom survived both endometrial and breast cancer, me, with my two, rectal and breast, and my full blood sister, anal and breast.....we are also different in that we heal fast, rarely get sick, have an super high pain tollerance, and high cholesterol (but the ratio is fantastic...the 'good' cholesterol is so high!).  As I said....I wish someone would use this for the 'greater good'!!!!!!!

I will keep you in my thoughts and prayers with the cardiac troubles, as well as the protein loss....

The docs have my beau on a huge amount of protein in his diet to support his cardiac functioning....and, of course, low salt and sugar (anti rejection drugs cause insulin dependent diabetes).

His will to live is even stronger than mine, it seems!  At 9 weeks post transplant, he is breaking all the normal recovery times, exercising now 5 times a week, at least an hour each time.  He REALLY wants to get back to our lifestyle...and will do anything the doctors say to get there!  July 2014 is the earliest to return to our Dutch home, since there is MUCH overseeing with the new heart and threat of rejection in the first year....

Hugs, my dear friend!  Kathi

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

The tumors are genetically damaged to survive, spread and thrive to various degrees.  Life Extension historically referred to 3 antibody stains that are molecularly targetable, CA19-9, CSLEX1, and COX2.   CEA appears to be a rough surrogate for CSLEX1, largely unused outside of Japan.   I've noticed that most long term survivors tend to be missing or low on either CEA or CA19-9 for mCRC adenocarcinomas, a minority of the initial stage IV population.   Those missing the COX2 might be about 1/6 of the initial mCRC patients. 

In our case, my wife was "blessed" with all three markers overexpressed in her surgical tissue samples as well as elevated CEA and CA19-9 biomarker levels in the blood.  So we treated those items per the literature.  So far, her tumor residues haven't overcome the mild tx.

 

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

BTW, are you a researcher?  I would LOVE to read up on what is going on on the genetics/immunology side!  Do you have any 'recommended reading'?

 

Thanks, Kathi

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

The Life Extension cancer articles and protocols are the best starting point, with their related references (click near the top) even from 10-15 years ago.    I think "ordinary bad CRC" research (not SRC, mucinous) is being milked and overworked - old technology can do the trick when started before too much desemination occurs.   Our big advantage: early, consistent, persistent application of the cheap stuff.

Yeah, I'm kind of nerdish.

Chelsea71
Posts: 1167
Joined: Sep 2012

Hi Laz,

My husband, Steve, passed away three weeks ago after a long, difficult, action-packed battle with MCRC.  To me he epitomized a true giver.  His attitude was a lot like joemetzger.  Very positive and out-going despite all the discouragement and suffering he had to endure.  He was a true individual who loved life and was eager to give his time and energy to anyone who needed it.  He set a good example for others facing a new cancer diagnosis.  Through his actions he demonstrated that it's possible to live a full and productive life while battling cancer.  He maintained this positive attitude right up until the last day of his life.  On that last day, he made a little speech to all the doctors and nurses who had gathered in his room.  He had made the decision to disconnect the medication and monitors that were keeping him alive.  Everyone was very sad as they congratulated him on putting up such a good fight.  He explained to the group that these past years of living with cancer had not been that hard on him as he had been very busy living his life and going to appointments, treatments and tests.  He said it had all been much harder on his wife and family who were on the sidelines feeling worried and helpless.  He knew that his life would be ending shortly but he realized that other people were sad and he was trying to make us feel better.  He just had such a giving nature.  I miss him so much....

 

It upsets me a great deal that he is gone.  Like so many others that have come through CSN, the world was a better place with him in it.  Such a waste.  I don't understand it.  He should not have died, but he did.  Now it's my job to honor his life by taking this unnecessary tragedy and creating as many positive occurrences as possible.  Craig would call this repurposing.  I have learned a lot in two and a half years and I feel it's my duty to remain part of CSN in hopes of being able to help others through my experiences.  At times I think it would be in my best interests to just never log on again.  It's so heartbreaking to learn about people's set backs.  But I feel it's my duty to pay it forward.  Plus there are just so many people here that I care about. Eventually I plan to find additional ways to give back in Steve's honor.  Some type of volunteer work etc.. Maybe driving people to chemo.

 

What about you, Laz?  I suspect your going to make a full recovery.  Once cancer is in your rearview mirror, do you plan to stay involved?  I hope that you do as you seem to be a great guy with lots to offer to the group.

 

Chelsea

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

I came to this forum shortly after my diagnosis in May. I did not get to know your husband or his struggle. I only know a little bit about him through you.

I cannot imagine how much you miss him. When I found out about my illness for days, before I let my wife know, I had obsessive thoughts about what's gonna happen to her when I get really sick or die. These were the wrong kinds of thoughts, because all of them were proved wrong sofar. Our marriage is stronger than ever and don't have those worries (now that's a partial lie) any more, because through her support she made them go away.

Yes, your husband should not have died so early and the world is less without him. But life doesn't count individuals, only we humans do. There is no answer to why he had to go. This is one of those things that cannot be answered, so it shouldn't be asked. We can ask and state millions of other things about his life that can be answered, appreciated and celebrated. We have to focus on those questions until time eases the pain and the void.

Am I gonna stay on the board? Well I have no choice. This forum gave me so much already and I'm just starting the hard part of my journey with a tough surgery and colostomy in a month. That will certainly keep me here. This forum broadened my new world I belonged to now, that I can't imagine just stepping out of it one day. 

You are doing the right thing by staying here for now and I hope your life takes you to a new direction where you are happy even if it takes you to leave this board. You graduated with the highest honors long lond time ago.

Laz

LivinginNH's picture
LivinginNH
Posts: 1258
Joined: Apr 2010

 

Thanks Chels, I couldn't have explained why I'm still here any better than you just did.

Hugs dear,

Cyn

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI everyone, I am NED 3 yrs now. I was one of the newbies in 2009. There were so many amazing people that I met, as some of you mentioned there are a number from that group that have passed. It breaks my heart when I hear someones battle or a new Diagnosis. So for me, it is not that I am NED why I lurk more than write, but because I still feel like it takes up a huge part in my life and can go through really down times. I will lurk every now and then. I think about all of you all the time. Don't ever think that you are forgotten. Those who have fought and are fighting, those who have lost the battle and those NED, it still remains a battle just in a different way. This group helped me so much, I will forever be grateful.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network