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Stage IV updates JUNE 2012

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

Just starting a NEW thread for this. I understand the pain some of us "old-timers" feel when reading a thread started in 2007, which includes friends we have lost. Reality is that more people die from stage IV than are cured. But the hopeful part is that many of us do live a long time with this as a chronic disease, even if we aren't cured, and some people are cured. We can be realistic, yet still have hope! They are not mutually exclusive.

Post your stories here.

I was misdiagnosed for 2 years - I already had a huge obstructing tumor in 2007, but was not diagnosed until 2009. I do not know what point I became stage IV, but it was before August 2009. I'm still here and doing well. I even got a nice long treatment break after being told 2 years ago I'd be on "chemo for life." At that point in time, due to the location of my tumors there was no other option (I did get a second opinion from the Duke tumor board). So far I've had FOLFOX, FOLFIRI + Avastin, 5FU + Avastin (progressed), and Irinotecan + Avastin (stable). After 36 tx of chemo I just couldn't tolerate chemo anymore and presssed for something different, as my situation had changed. While my first choices weren't possible, I was a candidate for daily radiation, and after 2 months of it, for 4 stubborn distant lymph node tumors(finishing December 2011), I have not had anything large enough to be seen on scans! So I have opted for no treatments, although my CEA has been slightly elevated. Many people in my situation would stay on maintenance chemo, but I just really don't do well with chemo at all, and my oncologist agrees with my personal choice. I'm taking another month break and will re-assess the beginning of August. I haven't had a scan since March and am trying to push it out further (due to an excess of scans assessing my cancer progression and diagnosing blood clots and other issues). If my CEA rises more, I'll scan in August. If it drops, I'll wait. Once I have a combo of a CEA climbing 2 times in a row, with a scan showing something large enough to treat, I'll do something.

TheDirtyColon's picture
TheDirtyColon
Posts: 13
Joined: Jun 2012

Hi Kathryn,

I have to say I was lucky enough to be diagnosed with stage 4 colon/liver cancer about 18 months ago, given a two year sentence. My CEA was around 110 when we stared this fun little jaunt, but now it is down around 6 for my last test. Was on Oxipalatin, a horrible drug, and daily xeloda and cetuximab. I received Cetux every Tuesday, actually going in to the hospital in about an hour to get more, with a dose of Oxi every other two weeks. The first scans of my liver looked like a chess board, it was a mess. But since the treatments 85 percent of the spots are gone, and there were like 20 of them, and the big ones look like pencil erasers. Thank God for that. The outlook is good with them talking about resection now.

Take care, keep your chin up!
John

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Diagnosed in April, 2007. I've been NED now since my multiple surgeries and chemos in 2007. Doing great.

One consultant "gave me" 2 years, but thought he might be able to "get me" 5 because of the unusual presentation. I'm now 5+, and very healthy. Glad I changed drs!

Alice

smokeyjoe
Posts: 1428
Joined: Feb 2011

I'm stage 1V, diagnosed Nov/Dec 2010...been off chemo. for almost 10 months now ....scans coming up next month (YIKES) getting very nervous about these ones.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Dx'd November 2011.
first doctors told me to "get my s#%t in order".
Fired that group and moved onto a cancer center with a positive attitude and willingness to fight like hell.

I'm not finished here yet and want to live life, as long as possible.

surgery December 2011 to add The Bag.

Chemo began Jan 3, 2012.
24 treatments so far of Folfox 6, (Oxiliplatin, Leucavorin and other stuff) plus Erbitux.

began with nearly 30 mets to the liver, now they say there is about 5.
yet, still a battle.

I had non-hodkinds lymphoma in 1989-90 and was radiated to eliminate that cancer.
they say now, that the tumor in my transverse colon was caused by the radiation of 23 years ago... and spread directly to the liver without hitting the lymph nodes.

one more week of chemo (July 3rd) and then CT scan and a take down surgery of the bag is set for sometime in late July 2012

have learned more about cancer than i ever wanted to know in my life.

Hope to hear and learn of more people who have made it past the magical 5 year timeline.
scary stuff!

have experienced extremely bad Rash from Erbitux, skin and toe nail and finger nail problems, cracked skin on the fingers, neuopathy in the hands, feet & mouth.

constant runny nose and eyes plus weight loss and change of hair color.... not a big deal, but all part of the battle.

one of the BEST side effects... the love and support of all my family and friends.

http://www.caringbridge.org/visit/joemetzger

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