please help

[rcap]

my husban was dx on jan 13 stage 4 cc with meets to lymph nodes. no organs involved yet. I am so scare I have been reading a lot and I understand this situacion is very grave . pleaaaase any hope

[Bev G]

Hello, rcap,and a very warm welcome to you from one of the MANY stage IVs around here who are alive, pretty well, and still kickin' it. There is a thread on the board for partners of stage IV patients, there is another (I'm pretty sure) regarding how long we stage IVs have been around, but I can't remember what it's called at the moment. Tell us a little more about what's going on and we can overwhelm you with help and advice (you might be sorry you asked! LOL).

Don't panic! B-R-E-A-T-H-E! (a lot!!) We'll be here for you! You're part of this wonderful family now and we'll be here for you.No matter what happens, it will be less scary as you go along.I promise.

Welcome to a wild ride, but one you CAN deal with, and there is hope, lots of it!

(((rcap)))

Bev

[scattered edge]

Welcome rcap. I had mets to my lymph nodes last summer. No other organ involvement. I am on Avastin and 5-FU, it is doable. I am learning to take the good days with the not so good days, treasure and cherish my dear friends and family and do the things I want to do - I use to think that was being selfish..not so anymore

My best to you,
Rosie

[Kathryn in MN]

I'm stage IV with never any organ involvement. We are an odd bunch - not many of us that have never had any organ involvement and are stage IV. I've had lots and lots of distant (not local) lymph nodes with cancer. I beat them down with chemo, and one time with radiation. I beat them down until I can't handle more chemo, and then I take a break. They pop back up and I beat them down again. I've now had progression to bones too, but I beat that down with radiation and RFA. Not a lot is known about mCRC with only node involvement - we are an experiment for our doctors. But as you can see from my signature, I'm coming up on 4 years since dx - living with this as a chronic disease. It is not an immediate death sentence, but I've found in cases where we don't present as text book, we really have to be advocates for ourselves. Very important.

[livingbyfaith]

My husband stage 3 in 07, stage IV in 2011, as they said treated like a chronic disease. We have many more good than bad days. I am thankful to have him. You just keep living day to day praying or a cure. Look for positive stories and dwell on them, great positive books. God bless

[Guinevere]

Welcome to the club no one wants to join!

I'm just past my second year since diagnosis of Stage 4. Am I on chemo? Yep! I did get to take a 3 month break earlier this year. When I was diagnosed, the only stage 4 cc cancer patients I knew of were my grandmother and sister-in-law and they died with 3 months of diagnosis. One in 1983 and one in 2000. So, you can see the advancements that have been made in treating colon cancer in the past 11 to 13 years! It's a scary thing. There are scary decisions to be made - that have to be made by both the patient and the primary caregiver. It's hard - really hard but there's hope. There's some time. It's not like it used to be with a lot of patients. There are even a few here that are 10 years out from diagnosis and longer than that! You take it day by day and the days when that's harder, hour by hour or minute by minute. You do the next right thing. You live in segments - much more than you did before in "real" life. You will never get back that life. Hard to say. Hard to read but this changes a person. It changes the patient because of the pain, scars, anxiety, the search for peace and coming face to face with your mortality. It changes the caregiver because they have to become everything in the home - sometimes, for a short time - sometimes but a very long time. Can't be helped. But, in these changes, if you will let it, most of the changes can and will make you a stronger person than you ever thought was possible. Just because you kept walking forward and doing what needs to be done.
Y'all are in my prayers. Prayers for wisdom, strength, comfort and mercy, prayers for peace and kindness - for yourselves and others. There are threads here for caregivers and they're wonderful from that I've read. Please don't hesitate to ask questions. That's what we're all here for - to help each other deal with something so vast that we can't wrap around our heads around all the possibilities.

God bless ~
Guinevere

[rcap]

thank you so much to all of you for all your kind words. I needed that. some days are easier than others some times I just cry and I feel that I can't take it anymore. I am so happy I found you.




husband dx jan 13 adenocarcinoma
feb surgery stage 3c 15/17 positive ln
march 13 pet scan stage 4 distant ln

My God is in control

[SkiFletch]

Welcome rcap, hope we can offer some help for you. You mention your husband has 4 distant lymph nodes. Where might they be located and what treatments is he undergoing for them?

[rcap]

hi my husband's current treatment is folfox and avastin, his nodes are one on the right side of his neck 4.6cm two of them in the abdoment aerea 3.6cmm and one in the pelvis aerea .this situacion is so stressful and the anxiety is terrible i am so glad we found you.my husband had a ct scan tody we are waiting for the results in a couple of days we are scare. thank you so much for all of your comments it has been very helpful knowing that a lot of you have very importan information.



husband 59 y/o
dx jan 13 adenocarcinoma
stage 3c 15 of 17 infected LN
MARCH 13 PET SCAN
STAGE IV distant Ln

[O Stoma Mia]

Hi R Cap - Until today, we haven't heard from you in over 2 months. I see that you just posted a message, on a different thread, with new information stating that your Stage IV husband is 'NED for now'. I have 5 questions

1. Is your husband all finished with FOLFOX/Avastin now (12 cycles)??
2. Did he have a recent post-chemo PET scan that showed NED status?
3. What are the plans now for the future? Will he continue with more chemo now?
4. Is this a correct summary of your situation now?
   

   Caregiver to DH Fred 59 yrs
   DX CRC Jan 2013
   Surgery Feb 2013 - 15/17 regional LNs positive
   Initially Stage IIIc
   PET scan Mar 2013 - distant LNs (throat,abdomen,pelvis)
   Re-staged: Stage IV mCRC, no major organs involved
   FOLFOX/Avastin, 12 cycles
   PET scan ?? ?? ??
   NED for now
   

   
   
5. Finally, if English is your second language, then what is your native language?

If you provide updated information, people might be able to provide you with more help now.

Thanks, and God bless you.

[rcap]

HI O Stoma Mia

Actually yes my husband just finished 12 treatments of fofox/avastin on SEP 17. His last pet scan was on
SEP 10 and it was clear it showed no evidence of diseased, his actual cea is 1.8. i am happy that he responded well to the treatment but at the same time y have to be realistic and i know that a reocurrence
will happen that there is not cure for stage 4 that can only be treated as a chronic disease.my native language
is spanish ..

rcap caregiver dh fred 59 yo
dx cc jan 13
15/17 ln
initially st 3c
pet scan march/13 showed distant LN
no organs involved
stage 4
12 treatments of folfox/avastin completed
pet scan sep 10 cea 1.8
NED for now

I BELIEVE IN THE POWER OF PRAYER

[rcap]

HI O Stoma Mia

Actually yes my husband just finished 12 treatments of fofox/avastin on SEP 17. His last pet scan was on
SEP 10 and it was clear it showed no evidence of disease, his actual cea is 1.8. i am happy that he responded well to the treatment but at the same time y have to be realistic and i know that a reocurrence
will happen that there is not cure for stage 4 that can only be treated as a chronic disease.my native language is spanish
..

rcap caregiver dh fred 59 yo
dx cc jan 13
15/17 ln
initially st 3c
pet scan march/13 showed distant LN
no organs involved
stage 4
12 treatments of folfox/avastin completed
pet scan sep 10 cea 1.8
NED for now

I BELIEVE IN THE POWER OF PRAYER