CSN Login
Members Online: 5

You are here

New to the group

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

 

Hello Friends

I am new to the board. I was pleased after reading the thread. It’s not the usual Debbie Downers and Whiners. I was diagnosed in 09/2014 and had surgery in 12/2014. The surgery removed the bottom 16” and Woke up with a colostomy bag. It was not for me and I had reversal in May 2015. I’ve accepted the constant need for Depends and with meds have developed some what of a routine. The 15 lymph nodes removed were all negative. Yet 9 months later a ctscan showed I had 6 mets in my lungs. 2 were 2cm x 3cm. I survived 12 rounds of the works. Avistantin, Oxyplatin and 5 FU. I lost 28 lbs in the process. Follow up scan showed 3 very small nodules remaining. After 8 months of a break, scan showed 6 nodule. Again, two were in the 2 x 3cm size. I have taken Irit (sp?) and  Xelota For 18 weeks. The treatments just tore my inners up and today my onco told me I was getting a 6 week break. Other then the need for the Depends I have no cough, shortness of breath, pain or anything. I have survived 3 1/2 years of this fight. Today, the onoc told me when I come back he would start me on a drug called Lonsurf. I went back to work. When I got to a computer I looked up info on the drug. I was shocked to read it could extend life for 7.1 months. My Dad passed in ‘11. He was a 16 year survivor of colon cancer. He had met show up after 8 yearsyears and they removed a lobe. And, it returned in another 8 years. He got pneumonia during treatments and we lost him. My question is. With no symptoms why am I such a shot time? What do I have to look forward to that’s going to take me? My anxiety level is about a 10. And, all the wind have left my sales. Sorry for the spelling errors.

 

God Bless you All

DMac

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

I welcome you again, Dmac.

First off, don't worry about spelling. 99% of us have chemo brain or neuropathy, and happily blame any and all typos on that. 

Again, I tell you, don't pay too much attention to the stats.  My friends dad was told 17 months. He was doing well, responded well to chemo and radiation, then, at 17 months my friend went to visit, and found him sitting in his chair. "what's wrong?" she asked" 'They told me 17 months'. He was literally waiting to die. Poor chap! To be so believing of the Doctors. He lived another six months, and may have lived more, had he got up out of his chair and LIVED. 

So, there's my two pennies worth. 

You are allowed to be despondent though. Just for a while. But you have to 'get over it' or it will bring you down. 

I'm not saying 'all is well', you have a fight ahead, but you're no stranger to that. 

Others will be along soon with their answers. As for me, I say move forward believing that you are the one who will do well. You will beat the odds. Many here are beating the odds, join us. 

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome to the forum. Rule number one- do not Google about it and get a bunch of depressing facts and stats that are not your situation. I'm not familiar with the chemo they're switching you to but any chemo should be able to deal with the mets. And if it doesn't there are other chemos to try. I'm on Vectibix for my lung mets and it works very well for me. They did a test on my tumour and found that it's vulnerable to it and it really does work well for me. I will never have my cancer gone and be NED, or so they say, but my lung mets will be kept under control by probably two chemo rounds per year at six treatments per round. According to my onc I have about 9 years left. She siad it'll be like someone with any sort of chronic condition. You can't sure it but you can live with it.

I wonder if Lonsurf is one of the unpleasant chemos. If you had Folfox then you've had the worst, in my opinion. 

Jan

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

You've been through so much! You certainly look strong and youthful enough to keep fighting this monster. Also, we're all unique and no one can truly tell us 'how long we have left.'  I'm only 10 months into this nightmare. People like you give me so much hope and inspiration. 

I say choose your treatments and keep living. Please share your progress with us. We'll be praying for you. - -Beth

p.s.   I kind of dig my colostomy. It's so much easier than the hell I experienced with my rectal tumor before surgery. But glad you were able to reverse, wow!

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

The picture is a before shot. It reminds me what I’m working to get back to.

Dennis

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Welcome to the group.  Glad that you find us refreshing and not dismal.  We are a group that helps people at all levels and will try and help you get through this.  Like others have said - DO NOT TRUST THE INTERNET.  The internet is filled with misinformation and more importantly outdated info.  In this time period that you have been dealing with this have you ever considered getting a second opinion?  I'm also on a very strict routine with bathroom issues and depends.  Sometimes the reversal works and sometimes you just have problems.  Glad that you are still able to work.  Think about a second opinion.  Also, your doctor can give you something for anxiety - accept it if you are willing because it can help with the constant worry.  Praying that all works out for you.

Kim

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Thank you all for making me feel welcome. I looked up the drug Lonsurf. It’s a last chance drug. Trials showed it extend life in 64% by 7.1 months. What??? And Why??? That’s why I asked what I have to look forward to. I’m now 61 and besides side effects I feel fine. I still work and walk daily. I am also going to “Cyber Knife“ in 3 weeks to see if I’m a candidat. Immune Therapy is what waiting to arrive.

Back to bed. The Sun will Shine tomorrow.

God Bless, Dennis 

 

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

i am not a cancer survivor my husband has the cancer. I only know about Lonsurf from what I read on here, it’s tough to handle. I see you said you might be a candidate for cyber knife, that would be excellent! Cutting things out is the best way to go if it’s possible.  I would say don’t google but I would be a hypocrite. Good luck I really hope you are able to get surgery!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  You never know what is around the corner mate. I have never stopped working since my cancer  diagnosis and I have tried to fit in as much of what i like to do as well. I was stage 3c into six nodes. In January I got my 20 years up still cancer free but certainly not free of the long term effects of cancer. Just remember despite everything that happens to us quite a few of us just survive it's human nature.Good luck with the lonsurf, Ron.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

A therapy called ADAPT (daily capecitabine[5FU chemo] + Celebrex/celecoxib) was used to salvage mCRC patients whose FOLFOX/FOLFIRI treatments had failed them.  A lot of patients  added  many  years.   

We use oral 5FU chemo + celecoxib + powerful supplements on stage IVb colon cancer to re-sensitize the cancer cells to 5FU and to remove/reduce most side effects, partly targeted with an expanded blood test series of common labs.   Generics and cash prices  are actually cheaper than insurance premiums or deductibles or max copays, much less than all of them combined, for chemo without Avastin, Erbitux etc.  I shopped around for supplies and blood tests. 

Others have bought time even starting late and doing less but to me, cumulative dosage of mild generics and correct, high potency supplements,  and earliest continuity are key to time and quality of life. 

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

I just wanted Thank All for making me feel welcomed. And, the speed of answers to questions. Since joining I already feel better mentally.

God Bless You All

Dennis

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

So glad that you feel better coming here.  This board has a lot of knowledge and a lot of caring people.  Keep coming here to get support, answers and understanding. 

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I agree about the cyber knife. The best and most effective way to get rid of cancer is surgery so removing it in anyway has to be a good thing. Good luck!

Jan

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I looked up info on cetuximab (Erbitux) when  my oncologist suggested it.  The  median progression free survival time was 4.4 months, median overall survival was 10 months. I began treatment with it, combined with irinotecan in April 2016.  So far  no new mets, and I'm still here, feeling  pretty good overall.

Grace/lizard44

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Welcome DMAC! It is good and useful to have a place to talk it out, and this is that place. It only took me six years to figure that truth and join in, so you're way ahead of the curve. Stay away from odds, tables, and ballpark estimates from doctors, hearing stats or guesses never helps anyone cope with the path they are walking. Just take one foot in front of the other, one day at a time, but do dig for treatments and answers, people here are beating the "odds" all the time, just keep reading on........................Dave

Subscribe to Comments for "New to the group "