Stage 4 Survivors - Can you update us on your progress

[some]

I read all of these posts with glee and wanted to "like" each one of them, but we are not on Facebook here lol.

Thank you so much for sharing your journeys with us. I love the positive news. I don't think it gives false hope or is gloating. It is wonderful news.

I pray for the same positive outcome for everyone.

Best,

Serena

[Bev G]

Hello,

Diagnosed 12/09 (a month after Fletch). Had rectosigmoid tumor (very big) and huge single liver met (posterior caudate lobe, 6x5x4 cm) plus 2/22 nodes +.
Had colon resection a week later, 3 rounds of FOLFIRI, liver resection in 4/10, seven months to heal from resection, 7 rounds of 5FU "mop-up" (many, many months late). Hospitalized 17 times in 2010, and in Intensive Care 3-4 times 2009-2010. I have had 13-14 PET/CTs, all negative since liver resection. Now 40 months after diagnosis and NED since liver resection, no recurrences. Looking for wood to knock on.

Wishing every one with stage IV had/has the nearly unbelievable good fortune I've had so far.

Bev

PS Forgot to mention I've had type 1 diabetes for just shy of 50 years, since age 11, thus the long, long healing from liver resection.

[Kathryn in MN]

You can see the short version in my signature. I was misdiagnosed for 2 years, so I know I've been living with this for 6 years now. I don't know at what point I became stage IV - I may not have been a IV when I first started having severe symptoms 6 years ago, but I may have. I have an unusual case with no organ involvement - just multiple distant lymph node mets the first few years, then progression to bone mets as well last year. My way of dealing with it has been to hit it hard, then take a break. When it starts to progress too much, I hit it hard again. I've been on a break, but am starting to deal with more pain each day and am pretty certain I have more bone tumors (and very likely more lymph node tumors, but they don't cause me pain). I'll scan in 2 weeks and make the plan of action for the next attack!

My situation is rare, so there is little data, but what is out there says that I should have been dead 2 years ago. I know my chance of cure is very remote (only if something new is discovered for treatment), but at this point I may be able to keep beating it back down for years, or maybe only months - anything can happen. I've mostly made peace with that. I've been blessed to stick around from my children being 14, 16, 19 and 22 at dx, to now being 18, 20, 23 and 26. The oldest had graduated from college, but since my dx I've been to graduation from high school for #3, and graduation from college for #2. I've been able to stick around to watch my children grow into awesome responsible adults. My youngest graduates from high school in 2 months. That was my first big goal that I really wanted to live for. My 3rd graduates from college in one year, so that is what I will start focusing on now.

[hopkins regular]

Perhaps you should ask for stage 4 endurance. Diagnosed with brain mets, colon tumor, lung and liver mets 11/08. Brain, then colon surgery. 12 rounds of Folfox, 3 years of Folfiri, now on Xeloda. Regular CAT scans to track the beast, latest this a.m. Regular MRIs to catch, then treat brain mets, 2 Gamma Knife, 4 cyberknife treatments. Regular MRI next week. As of yesterday, only lung things that grow, shrink, appear and disappear. Never NED.
Look fine (so people say) and continue to work. A regular schedule with naps keeps me going.
Stage 4 is a battle with occasional lulls, but the war was lost the day we were born.

[kiwiinoz]

[quote="Mitu"]Hi,

Some survivors move on and stop posting. I rarely post after getting my head chewed off in a PM for "gloating" after posting a positive scan result (I was happy, yet humble and grateful -- NOT intentionally gloating and yes, my skin is too thin) and a few other things led me to become wary of writing publicly. I really admire and appreciate the folks who perservere here, continuously posting support and info for others despite going through some very difficult treatments. Guess I should try getting off my butt and start again.

It is sad that you don't post what I consider to be a hope filled storey due to someone getting their nickers in a twist over a post on a public forum. You provide hope which is what a lot on this site still need. If they could not accept the intent of your message they could have just held their to tongue.

Please keep posting Mitu, your history can inspire others which is what this site is about. I am inspired by your storey, as I am inspired by other stage IVers that have turned it into a long term "chronic disease. I hated that term a few months ago but not I think call it what you may, if CRC comes back I need to be able to do that too

Thanks for your post

[Annb]

I think positive stories are helpful, so here's mine.

Diagnosed with breast cancer (stage 0) in spring of 2006 and had 8 surgeries with 2 kinds of reconstruction. Huge trauma.

6 weeks after I finished all the breast cancer reconstruction (DONE!) I was diagnosed with colon cancer (spring of 2008) that had spread to an ovary. There was a question about whether it was stage IIB or IV, but my oncologist seems to always consider me as IV. I had surgery and then FOLFOX for 6 months. After that, the requisite scans, scans, scans...

At one point, my onc said "how great! You can take a BREAK from treatment." !!! He was telling me it was GOING it come back by saying that. YIKESSS!!! HOWEVER, it has now been 5 years since diagnosis, and still NED.

Just to be sure I can never really relax, though, there is always something.... My last scan, last spring, they noticed a VERY small something in my pancreas that has been there for 3 years but has grown verrrryyyyy slowly. Had an endoscopy last summer and it was inconclusive. Now my onc wants an MRI in the summer to monitor it. If I can get past that, maybe I will really be past it...maybe...

I will say that the last year has been MUCH less anxiety producing that the previous 6. I was able to focus on living instead of the possibility of dying. I know we're always supposed to do that, but that has been easier said than done. I still have less energy than I want, but most days are happy, productive and hopeful.

[cherryames]

I was diagnosed in July 2006 and I'm still here, happy, healthy, and a grandma now. I had stage IV with mets to the liver. After one surgery in my local hospital I was referred to Sloan. After four months of chemo, I had surgery at Sloan and a gifted surgeon resected my liver. At that point I was NED. After a few complications and five more months of chemo I was good to go. I've had good scans ever since. Believe me, I know how lucky and blessed I am every day of my life. Please know that there is hope out there - I am living proof. No one knows what the future brings, but for now I'm NED and trying to live a productive and healthy life.

[jdepp]

My story is in my signature, too. When I was first diagnosed in 2008, I was very happy to see some people posting with stage 4 -- no matter what their condition at the time.

At dx I was pretty sure I didn't have more than a year or two, but in August it will be five. I consider myself living in penalty time.

[workingmom]

Am still around and fighting 7 years after diagnosis. Was diagnosed April 2006 age 43 stage IV mets to ovaries. Surgery, chemo, recurrance 2008, mets to peritoneum. Since 2008 I have had a surgery a year including two HIPECS, hernia repair, cytoreduction, splenectomy, adrenalectomy, more rounds of chemo than I would like to count etc. Seems I have had mets to every organ, brain excluded (so far). Am currently battling lung mets. I was given 3 months back in 2008 and am still around, working full-time, making the most of my time with my two teenage children and husband, and researching the latest treatments for CRC. I believe knowledge is power and you have to be your own best advocate for various treatments. I would never wish this disease on anyone. That being said, stage IV is not necessarily an immediate death sentence. New studies and treatments abound. I hope to live long enough to find the cure or at least long term remission. In the meantime, live life the best we can.....

[scottyg]

I have been NED since July 2012. Lingering side effects are minimal. Some tingling in the toes and finger tips. The diarrhea is under control if I eat right. I am scheduled for a CT scan the end of April. Of coarse my mind is starting to tell me that any new ache has got to the cancer returning. I am starting to laugh at my self when I get like that though. As I get farther and farther from active treatment I find I am slowly moving forward with my life. It aint easy but nothing worth having ever is.

[taexali]

Male, age 66

DX Stage 4 rectal & lung on 7/2007.

LAR, lobectomy, radiation & chemo..

Currently NED

[BrownBagger]

So many inspiring stories of all kinds. Thanks, everyone.

[missjv]

im still here diagnosed april 2006 stage IV i have had 3 liver mets, 5 lung, 1 adrenal met and 1 lymphnode met. liver resection, lung resection, rfa, radiation, and of course chemo. ned 3 years. then recurrance. now again ned for 1 year as of last scan and off chemo. had scare back in november with lung thingy which turned out to be nothing. feel great.

missjv

[stevieb]

Thank you all for your posts! Inspiration to us all fighting!

[livingbyfaith]

'Some survivors move on and stop posting. I rarely post after getting my head chewed off in a PM for "gloating" after posting a positive scan result (I was happy, yet humble and grateful -- " I personally thank every one of you that puts a positive story up, I search and long for those and they give us hope and faith. Please all of you post every positive story you can, and God bless you for doing it. Janet