CSN Login
Members Online: 0

You are here

calling all long term stage IV lurkers

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

I go onto other cancer sites and lurk, this is the only one that I post comments.So, I was wondering if their are any longterm stage IV's or at any stage, who are out there that may be lurking, that would come on and offer support and treatment plan? We have many on here posting and offering amazing help to others. Just wanted to invite you in to this wonderful group of survivors.God Bless, Patti

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Agree Patti, would be nice to hear from the others who are to shy.

Hugsss!
~Donna

zenmonk
Posts: 198
Joined: Nov 2009

you lurker

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

OK,I ADMIT IT, I LURKED A FEW TIMES AND THOUGHT I DIDN'T WANT TO BE WHINING ON SOME WEB SITE OR HAVE SOMEONE WHINING TO ME.
BUT I HAD A DREAM A FEW MONTHS AGO,I WOKE UP AND TRIED TO TALK TO PEOPLE BUT NO ONE COULD SEE ME OR HEAR ME. I SHOUTED IN PEOPLES' FACES AND IT WAS LIKE I WAS NOT THERE AT ALL.I TRIED TO GRAB THEM BUT MY HAND WENT RIGHT THRU THEM.I WOKE UP REALLY DISTURBED AND IT'S BOTHERED ME SOME SINCE.
THEN WHEN I WAS 'LURKING' A FEW DAYS AGO I REALIZED, NO ONE WAS WHINING, THEY WERE JUST HAVING CONVERSATIONS AND EXCHANGING INFORMATION.I CAME ABOARD A COUPLE DAYS AGO AND I'M GLAD I DID. I HAVE A GOOD SUPPORT GROUP OF FRIENDS,WHO ARE VERY EMPATHETIC, BUT NONE HAVE CANCER,SO I WONDER SOMETIMES IF THEY EVEN KNOW WHAT I AM TALKING ABOUT.ANYHOOO,GLAD I'M HERE!
GLAD YOU ARE ALL HERE! :-)

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Welcome Kate! I lurked for a while too, but I'm so glad I joined in! And sometimes I do tend to whine, but always feel better after my cyber friends cheer me up!

-Sheri

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi
I do post once in a while, and answer questions, I'm a bit over 5 years out now, stage 4 cc, tumor grew outside of colon, into overy and positive in lymph nodes. Doing well, have CEA level and colonoscopy coming up soon, keeping an eye on lesion on liver, they think is just hemangenoma (sp?) a cluster of blood vesels. Lump found in breast, mammogram looked good, not appearing to be ca, so everything staying stable! 50 years old and now I'm in college, looking forward to graduating and finding a job, I hope. I only made it through 7 of 12 chemo treatments, had a colostomy for about a year, and had it reversed. So, there is a lot of hope even when stage 4, I don't think a lot of the doctors expected me to go this long without a reoccurance, but I am very glad I have made it this far! Best hopes for all who are fighting their battles, and hope my story gives hope to all.
Pam

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Thanks for posting guys, I knew it was a long shot to get lurkers out of their comfort level. Would still love to hear from you! Patti

ganders2's picture
ganders2
Posts: 13
Joined: May 2008

I too have been lurking on this board since my original dx 5/08. Like many others, the dx was a major shock, especially being Stage IV since I actually had a colonoscopy just 4 years previously and was told that the polyps were benign.
so I had a resection and chemo, Foxfox with Avastin, and finally RFA for the final lesions. The ca came back and I started 5FU, Leucovorin and Avastin in July. So far, so good -my labs are good and the last MRI showed reduction in the lesions.
I can't tell you how helpful it has been to read the posts on this board - there is an awful lot of wisdom, love, and help here.
If anyone has any questions about the treatments I have had, I am more than happy to answer.
Thank you all for being the very bright lights that you are!

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Thank you for coming on and posting. I too am stage IV since May of 09 and this is still new to me. I am so encouraged that you are doing well. I am inoperable right now and they don't even want to do RFA on me now. So, I wait and pray for good results. My cea was elevated at chemo on Wed. I am having it re tested on Monday. God Bless, Patti

mcsauder's picture
mcsauder
Posts: 68
Joined: Nov 2009

Hi everyone
I'm new at this and trying my hardest on write things down
But one thing I would like to say is I like to read donna's postings she is always upbeat and has an positive things to say
PS
Don't look at my spelling and grammar

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Thank you sweetheart, I think a load of people here have helped me come to being positive, and helped me here in dark times, and I hope to be able to do the same, I just like to put a smile on peoples faces :)

And don't worry about the spelling and grammar, heck, I'm sure not good at it either LOL

Hugsss!
~Donna

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

Went from lurker to joiner last month. Hubby Stage IV colon cancer. I didnt' have a lot of questions at first because of all the info already on here, especially about side effects that the doc does not tell you about which avoided a lot of anxiety. During our initial six months of treatment only had to call he onc office one time due to a fever because I was able to read about side effects, in English, on this board. Tina

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

So glad to have you all coming on and posting, my brother is the one who found this site for me. I was welcomed with open arms! I can't tell you how it got me through my dark times. I still get the blues but have come a long way with the support with this site. Thanks again to everyone, I know I keep saying that but I mean it!!1 Patti

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Hi Patti -

I do find this board to be extraordinary! I wish I can meet you all in person- Craig, Buzzard, Donna etc..

I was dx'd 3/2009 Stage 4 with mets to liver. I am not resectable at this time. Just finished 12 rounds of 5-FU,Erbatux,Leaucavorin. Wednesday I will meet with interventioanl radiologist for TheraSpheres treatment. Hoping to further reduce liver tumors so I can get part of the liver resected.

Keep us posted on your treatments, concerns and questions. so many wonderful people will help!

Peggy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Let me know how it goes Peggy with the Theraspheres, I think they may be looking at that down the road for me as well, if chemo stops working, I'd like to hear how that goes~ good luck with the meeting, hope it all goes well!

Hugsss!
~Donna

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hey Peggy, I also met with an Interventional Radiologist, he said to continue chemo and get the most out of it and then do Sir spheres no sure if that is the same thing. Did your chemo stop working or are they just doing this for the liver? Patti

suenj8
Posts: 3
Joined: Nov 2009

I've been looking for a way to try to help other people dealing with cancer. I have now been in complete remission for a year but was diagnose 9/2007 with Stage IV colon cancer with mets to lymph nodes,spine and liver and was considered nonresectable. First chemo was folfox with oxaliplatin, 5fu, avastin. Spot on spine radiated Dec 07. Mixed results after 10 wks of folfox. Onc switched to folfiri Spring 08 and had great results and felt much better - everything shrank some enabling me to have surgery. Surgery at Fox Chase - Philadelphia. Plan was to microwave liver mets while surgeon was removing part of my colon and ovaries. While in there she ultrasounded my liver twice and called in a radiologist to help. She could find nothing wrong with my liver!

Histology from section of colon and area lymph nodes indicated adenocarcinoma in colon and highgrade (poorly differentiated) neuroendocrine carcinoma in lymph nodes. Plan after surgery was another round of chemo. Onc and I chose to use CPT 11 and Cisplatin as I had great results from the CPT 11 and Cisplatin has been proven to work on what I have. Was scared of chemo fog but turns out did not need to be. Completed my 4 rounds November 2008. Pet Dec 2008 and all ct scans since indicate I am in complete remission (and hope it stays that way!)

Hopefully my story will help others. Advice is get tested and know the specific type of cancer you are dealing with - not just what body part is affected. Keep faith you will survive by living each day and showing your love. We are all rooting for you!
Sue

mvancott
Posts: 8
Joined: Nov 2009

Inspirational- my husband was just diagnosed with stage IV colon cancer with no symptoms! A radiologist oncologist said he has 6 months to 2 years and that people do not survive it!!!

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

What a horrible thing to hear, my Dr.said about two years and I fell apart. Where else is your husband have it in the body? How old is he? have they talked about any other treatment besides chemo, assuming he has chemo? Not to be nosey just wanting to know if I can help. I am cc with mets to liver and had it in my peritenum and omentum lymphnodes. Chemo knocked out what was in the b elly but has grown in the live with a few more new spots. So, Dr. changed chemo. Praying for this one to do the trick. God Bless, Patti

mvancott
Posts: 8
Joined: Nov 2009

He is 44 stage 4 colon cancer with mets to liver, lung, and bone(sacrum) He is getting radiation now for the bone tumor and we have an appt with sloan kettering in 2 weeks.

idarochny's picture
idarochny
Posts: 13
Joined: Oct 2009

My name is Ida and I am a lurker. I try to write but don't always feel comfortable. I have stage IV colon cancer and have had a colon resection followed by 15 chemo treatments. My PET scan is Tuesday(12/8). This discussion board has given me great hope! Thank you all.

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

welcome, stay aboard and ask any questions, or offer support.when were you diagnosed? let us know how your scan comes out. I will pray for you. God Bless, Patti

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Welcome to our family, please feel free to post with us, we hope to be of some comfort and hope to all you who are to shy to post, we are still a family for you here, and would love to get to know you all :)

Everyone have an awesome holiday who don't post as well :)

Hugsss!
~Donna

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Edited for the LAG!!!!

willjulia
Posts: 19
Joined: Aug 2009

Hi,
I'm more of a lurker than a poster (wife Stage IV, diagnosed 8/09). I've read a lot of comments from a lot of people. None of what I've read here sounds like whining to me. It sounds like real people going through real life issues and sharing their real thoughts, fears, questions, etc. It's a healthy way to vent, to learn, and to support.

My wife started out on Folfox but it wasn't effective. The tumors (liver and lungs) grew in number and size and spread. She started on Folfiri and yesterday's scan showed that there are no new tumors and the existing tumors have not grown. That's good news and will help us tremendously to enjoy the holiday season and enter the new year with hope. The docs are about to add Avastin.

Peace and love,

Dan

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It's great to meet you! Avastin is a good drug that starves the tumors, it helps with them by not sending any blood supply to the tumors which they feed on. I been on Folfiri with Avastin since February this year, and luckily haven't had any new growths. Soon, the onc will be taking me off the Irinotecan and leaving me on just Avastin and 5fu, she said many patients of hers have been living many years like this, but I don't want to stay on chemo, I'd like to watch for other options myself, and maybe get a second opinion.

We're glad to have you here, and don't ever lose hope, there's alot of chemo cocktails out there, if one doesn't work, they can try another! I wish you both the best!

Hugsss!
~Donna

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Thanks for coming on and posting and welcome, I was on Folfox with response in the omentum and peritenium, lymphnodes..It was shrinking the liver tumors by a little and then it stopped working in the liver, they switched me to Folfiri, or cpt11 it's also called. Anyway just started on Wed. and am praying for good results. I am meeting with an Interventional Radiologist on Tues. to talk about Sir spheres. God Bless, Patti

fringetree
Posts: 66
Joined: Dec 2009

My dad was diagnosed stage IV three months ago. I have been living with my parents (or in hospital rooms!)ever since. He has mets in his liver (unresectable), pancreas, and lung. He was given one half dose and one full dose of 5'FU with oxaliplatin. Then, about three weeks into chemo, we had to take him to the ER one night because he passed out from pain while trying to use the bathroom. He had been bleeding a bit for a while, but after the "episode" it got much worse. A new CT scan revealed that the tumor had grown significantly and his performance status is not good, so his doctor stopped all treatment. My dad seems to be at peace with this, but I am still struggling with this decision. I just can't let go of the idea that there is something more we could try. I started reading the boards after I heard this news, but I lurked for a long time because I didn't want to bring everyone down! Finally, I decided I just needed some support, and I have definitely received that here. Love to all of you!

grammadebbie's picture
grammadebbie
Posts: 445
Joined: Jun 2009

Dear fringetree,

There is no reason for you to go thru this alone. We are all here for the good and bad. This is a family that understands and will always be here for you. I'm so sorry to hear about your Dad. I've not experienced what your dad is going thru so can only lend emotional support to you. There are alot of wonderful people here who can help you with the specifics. I don't understand why all treatment has been stopped. I know that 2nd and 3rd opinions are very important. Also, there is no reason for your dad to be in pain..you sometimes have to be very demanding to get this taken care of. If your doctors won't address it, have a pain specialist come on board. Just wanted to let you know that you are not alone and you can share anything here without fear. Your family is blessed to have you. Big hugs to all. I will be praying for you all.

Blessings,

Debbie (gramma)

fringetree
Posts: 66
Joined: Dec 2009

Gramma Debbie,

You brought tears to my eyes, and I thought I was all dried up for the day! It's a good thing, though :) The doctor's explanation for stopping treatment is that he is too weak to withstand it and that once the cancer has progressed this far, the chemo just doesn't work well anyway. I think I will post a new thread to see what the Stage IV's have to say about that!

One positive thing to report is that other than the "incident", so far my dad is not really in any pain (knock on wood). Every once in a while he gets some cramping, but that's it. He is not taking any painkillers, even though the hospice nurses push it like candy!

I do feel like I have been given the "gift" of cancer sometimes, because taking care of my father has been the greatest privilege of my life and it has brought us closer than ever.

Hopefully one day I will be able to help someone on here the same way you have all helped me already.

Love to all

Subscribe to Comments for "calling all long term stage IV lurkers"