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What happens after they say remission?

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

What exactly is that?.... remission? same as NED? NEAD?? and even though there is no evidence of cancer on your PET anymore does that mean its gone??? It was always my understanding that this stage IV is not "curable".... only "treatable" So once it's all gone thru chemo treatments..... do I just sit and wait cause it's gonna come back...it's just a matter of when and where? Also, is this why they say surgery is the best CURE.... but couldn't it grow back even after surgery? I have gone from CEA of 75 to 8.4 last week. I have gone from 4 tumors in liver to none and 15 in lungs to 5..... but is it all just a revolving door and will I be starting all over again???? It just seems like we rob peter to pay paul...and it never ends. Its been a VERY bad week. Sorry to be negative. I am a day away from going to hospital for so dehydrated. Coming out both ends non stop. Gonna get a butt shot tomorrow to see if it stops it.... if not....hospital..... oh well,,it could be worse....at least I am still kickin

Jennie

kmygil
Posts: 881
Joined: Feb 2007

Hey Jennie. You're not being negative, just human. Big breaths. I have found that different doctors use different terminology at different times. It's hard to keep up with. NED just means there is no evidence of disease, meaning nothing diseaselike can be spotted AT THIS TIME. Remission is exactly that--a withdrawal of the disease AT THIS TIME. Cure is a word that most doctors don't sling around very easily, rightfully so. The way I look at it is how my onc recommended. I appear healthy RIGHT NOW, I feel healthy RIGHT NOW, nothing untoward is noticeable using CT scans, blood tests and gross clinical examination RIGHT NOW. So I'M FINE! Until anything changes, that's how I look at it. I don't consider myself "cured"--just blessed to be feeling fine and kickin'. Besides, cancer or no cancer, none of us is guaranteed tomorrow. Hang in there and kick the blues in the rear. I'm happy you're here RIGHT NOW!

Kirsten

eric38's picture
eric38
Posts: 588
Joined: May 2009

All we can do in our situation is take it step by step or we will go crazy. I think n.e.d. and remission are the same thing. N.E.D. is just the new term for remission. There is always the possibility of cure and nobody knows until they get there. The best thing is to be grateful for where we are at the moment. You have come a long way in a short time. Way further than you even expected. You thought you weren`t going to live another year and now look at you. As Kristen said we are not guaranteed tomorrow but we can make the most out of today. Your cancer could be growing and not responding to chemo, but it`s not and you are doing well. It`s discouraging to have the digestive issues but you are not that far out from surgery and you are still healing. It takes time. It will probably pass. This disease sort of forces us to live in the moment. I know that is hard for someone who tends to worry about the future. The doctors don`t consider stage 4 curable but people that are stage 4 have beat this and there are future options to come. As my proctologist told me when he first diagnosed me, the chances for cure are never 0. The cold hard truth is we will always have this in the back of our minds and the only way you will ever know if you cured is when you have been n.e.d. for ten years with no recurrence. You can drive yourself crazy or enjoy the small victories along the way and be grateful for them. There are many people that never reach ned but live for years. I read about a man that had this disease for 20 years and we have more options available and more to come. I ran across an older woman when I was in the hospital for my 1st surgery that said her husband had stage 4 colon cancer for 14 years. It`s difficult to think about having this disease for many years but its better than the alternative. If you worried every day for 14 years that would make your time very long. There is always the chance that we could get to ned and stay there. It`s natural to have discouragements along the way but you and I are not going anywhere any time soon. We are survivors and part of what makes us survivors is our positive attitude. You are a survivor and you will survive. You will surprise your doctors and your loved ones. Just look forward to the day when you go back to your doctor and show him how wrong he was. Show them what a walking miracle looks like and use it to help others.

Eric

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Hi Jennie,

I think we all go thru this wrestling match with ourselves. I try to be positive but I get scared, yep scared. No matter how hard I try not to think about it right before another 3 month CT scan and CEA labs etc. I start getting anxious (for lack of a better word). I have a appt for my results on Sept 14th. I know that the results of those tests can change my life in a minute. Is there anything I can do about it. No. We are all human and no matter how much we know that there is nothing we can do about it, we still want to retain some control. I have great faith yet I waiver. I have a wonderful husband, kids, grandbabies and I want to be around for a long time. My doctor never has used the Ned phrase. They just say I am stable since my treatments. I'll have to clarify that on Monday.

Please don't beat yourself up regarding your feelings. They are real and we just have to work thru them. This is a great place to do just that. Although we all travel this journey in different ways we do have a common thread among us. I pray that you will find peace and comfort here. It's good that you are being honest with your feelings. This battle definetly changes us. I am thankful for every day I have and will continue to fight even when I don't think I have any fight left in me. You are strong and just having a bad time right now. This to shall pass.

I'll be praying for you,

Debbie (gramma)

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

It's just great reading all your replies. Makes me feel good everytime I do. Scary out there, but one day at a time, yepperie!

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Try not to get caught up in all the terminology,you are doing very well.I'm sorry to hear about your dehydration,I hope you get better,and don't have to go to the hospital.The best thing to do is to just try and live your life as normal as you can,and don't let the cancer slow you down.Just keep on kickin!!!.I will pray for you.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

As always.... you guys made me feel better.. I am extremely glad I have today. I have a childhood girlfriend who has been suffering with lung cancer.... they just called hospice to her home. I think that just got me thinking about the "what if's". I really wish that once a year we could have a reunion of sorts and get to meet each other. That would be a fun week-end!!! Peace

Jennie

eric38's picture
eric38
Posts: 588
Joined: May 2009

Remember - Cancer that originates in the lungs is alot harder to manage than colon cancer. No matter where it has spread it is still colon cancer. One of the things on our side is that colon cancer is one of the most researched cancers so it can be managed alot better than many other cancers, and there is still more improvements on the way. None of it is fun and I am sorry about your friend. No wonder you were feeling worried and uncertain.

Eric

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Let's call the whole thing off.
I'm sorry you are going through a rough time Jennie. I saw in your later post that things are a bit better although I'm sorry that your friend is not doing well. Personally, I try not to get into the whole name game. I could say currently there is no evidence I will be in a car accident on the way home. Who knows, maybe I will be, maybe I won't be. I just will try to have a nice drive home. I will say that the notion that stage IV CC is not beatable is simply not true.

When it comes down to it life is terminal so if you are feeling good, enjoy it. If you're not, try to do things that will get you better.

I hope you're feeling better today.
-phil

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I love the analogies!

This week at our Spanish and American Sign Language classes for Home School, a mother said 'Colon cancer is ALWAYS fatal!' I could have punched her lights out! She said that in front of our Nick. On another website, a doofus said 'NO cancer is curable'. Same day!

Then you see uplifting things like the lady who was Stage IV and has been disease free for almost 60 years! Don't tell me..... ACK

Phil, our 38 year old son reminded me a few months ago that life is terminal. He also mentioned car accidents and put this all in perspective.

I love the attitude of our SURVIVORS! You guys ROCK!

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I really appreciate your kind words. Some people are so ignorant when it comes to cancer and they also lack tact when it comes to what comes out of their mouths. that was one heck of a dumb thing to say period, but especially in front of Nick.

I was very happy to hear that your port came out and that your chemo is over. You went though a lot Diane and came through with flying colors. I know you had some help from above too, it's great!

Just so you know, it was raining on my way home from work yesterday but I kept thinking of what I said about the car accident. Man, was I nervous on THAT ride but happily it was uneventful and I could see some of the leaves already turning. Summer is at it's end. Time to continue the cycle of life, death, rebirth.
-p

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi phil and Eric,you guys are the most intelligent and sapiential people that I have ever met.I have to announce here loudly that from now on you guys are my idols!

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I think you may need to widen your "friends base" but thank you for your kind words ;-)
Believe me, I have my moments of fear and confused with the cancer and I don't always follow my own advice. I try to but it's often easier to look at someone else's situation and give advice than to look at one's self and do the same.
(I had to look up sapiential - Glad I did. Thank you again)

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Thanks so much for the question-I struggle with it too–and for all the answers–reminds me to enjoy what I have which definitely is this precious life. I have used the birth has a poor prognosis to put in all in perspective for me, and for others.

all the best, Leslie

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Jennie, I just read your post. It sounds like good news to me. Going from 4 tumors to none in the liver and 15 to 5 in your lungs. Sorry you are having such a rough time.
Reading the answers you have got from Eric and Phil and everyone has helped me.
Hope things are better for you today.
I would love to hear that info on John so look at the good. You are a great person, Jennie. I just wanted to let you know that I am thinking about you. You keep on keeping on.
Paula

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