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stage 4 roll call

serrana
Posts: 163
Joined: Apr 2009

Hey all you Stage Four Folks........
lets hear who you are, how long you have been since dx and your "secrets for survival", oops, we aren't "surviving" we're "thriving"...right!!!!
I will be at "three years" of "thrival" in January ( after being told I was totally cancer free 2 years ago....not) and love to hear the words of fellow travelers
Serrana in San Diego

taraHK
Posts: 1961
Joined: Aug 2003

In December, I will be seven years since diagnosis! I was diagnosed with Stage III rectal cancer. I've had three recurrences in my lung -- each time a solitary met, treated with surgery and follow-up chemo. One scare this summer which turned out to be a false alarm. I'm currently NED (so, I'm a Stage IIIB?!) and not having any chemo --just regular scans, etc. My secrets for "thrival"? Keep putting one foot in front of the other. Stay up to date with medical developments. Keep a sense of humor. Exercise. Say yes to all invitations that sound appealing (especially those that involve travel!) and then cancel later if necessary. My next goal is May 2010 -- going a full 2 years with no recurrence would be a first for me! Also, when I was diagnosed, my kids were 10 and 12. One of my goals was to see them both into college. In May 2010 my youngest child will finish high school. Yea!!!

Tara

serrana
Posts: 163
Joined: Apr 2009

Congrats Tara, sounds like you'll make the high school graduations!!! What chemo did you have after your lung mets?
Serrana

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hey All!!

Dx in April 2009 with baseball size tumor in large intestine. It had traveled outside colon wall... missed all nodes but attached to back of stomach wall.The surgeon did remove it all...even after scraping for an hour on my back to get stomach attachment. Wow...did that get sore!! By that time it had got in my blood stream so it didn't really matter. I had to wait 7 weeks after surgery before I could start chemo. They put me on the Folfiri cocktail. It then went to my liver and lungs. I was told I was stage IV and terminal. I told them NOT to give me a time line. Only the man upstairs knows that. It got to a point where I had 4 tumors in liver... and 1 of those were large and pressing against a vessel. I had 15 spread all across my lungs. I went to MD Anderson for 2nd opinion. It was the same. By that time I was coughing and never could get a good breath. My husband and I sat in a Target parking lot one day and just cried our hearts out. I didn't want to die... he didn't want me to die. I wanted to see my daughter graduate from nursing school and one day get married and have babies. My other 2 kids are just beginning their adult lives. I have too much to live for. Oh God.... it was so sad. I have never felt such dispair. I have never been much of a religious person but at that moment I decided I needed a miracle. There is only one man in charge of miracles. I reached out to God for help. Did it help???? You tell me. My CEA was 75 right after surgery. It is now 8.4. The tumors in my liver..ALL GONE. The tumors in my lungs... only 5 left and they have shrank 50-60%. I still have hair... even after dying it. Did I get a miracle?????? I feel I did and continue to stay strong in spirit and prayer. I sometimes get down thinking about the "what if's". Then I come here.... to my second family.... and you all set me straight. This would not be bearable without you all. I love you all.... I truly do.

Jennie

serrana
Posts: 163
Joined: Apr 2009

Yes I believe as you do that it is all in the hands of God that we shouldn't listen to the doomsaying "terminal" junk. Read Healing Words by Larry Dossey for amazing miraculous cures of colon cancer folks.
We do our part by eating correctly, exercising and doing what the docs recommend but ultimately it is out of our hands.
Serrana

Muzzy's picture
Muzzy
Posts: 178
Joined: Sep 2009

Yes i would love to know.
I'm a stage 4 thriving coming up to my 1 year mark in November.
This site is great for support and i would like to thank all of you for it, but sometime it scare the heck out of me.
So far other then some nerupathy i've had little problems. I thank God everyday!
Reading what some of you have gone thru, sometimes makes me feel like when is the other shoe going to drop.
Tonight is one of those nights when I'm feeling a little scared about my future and hearing from you long term guy would help a million.

jeff in Sterlng hghts Mi.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Oct 3rd, I'll be an 8 yr survivor of stage 4. I was diagnosed @ age 33. Mine was liver mets. I am not on any chemo, treatments, or anything anymore. Last chemo was July 2002. I do still have my port, even though my doctor called me the "C" word! (CURED! lol)It is my security blanket, and will someday get it taken out. I had 5 FU, leucovorin, and camposar.

Keep the hope!!!!!!

Happy Thursday!

Stacy

bdee
Posts: 305
Joined: Feb 2009

I was diagnosed with Stage IV colon cancer in January 2009 after being told I had Pseudomyxoma peritonei.
Pseudomyxoma peritonei is an uncommon tumor known for its production of mucus in the abdominal cavity. If left untreated, mucin will eventually build up to the point where it compresses vital structures: the colon, the liver, kidneys, and pancreas.
Unlike most cancers, this disease rarely spreads through the lymphatic system or through the bloodstream. Therefore it is characterized by mucin and scattered cancer cells in the abdominal cavity but not with liver or other sites of metastasis.This disease is most commonly associated with cancer of the appendix; mucinous tumors of the ovary have also been implicated.
This condition is so rare that it has only been found in one other person in Arkansas. I have seven tumors spread throughout my abdominal cavity and four of them keep growing and three seem to be shrinking. I probably won't have any tumors in my organs just around or under them. The biggest one I have is 6 cm x 1.7 cm and it located right behind the spleen.
Chemotherapy has included Oxaliplatin, 5FU, Leucovorin and Avastin. The Oxaliplatin almost killed me, so it was stopped in May and now I am only on 5FU, Leucovorin and Avastin. As my doctor tells me, this is not a curative dose, just a maintenance dose.
I don't think I'm thriving at all. Researchers don't do much for this kind of cancer because it is so rare, so I just take it one day at a time and hope to live until my 19 month old granddaughter starts kindergarten.

Debbie

lizbiz's picture
lizbiz
Posts: 121
Joined: Aug 2008

Hi all,

I was diagnosed in May of 2008 with stage 3 cc (four months after marrying my first love). After a gruelling 12 rounds of FOLFOX, we found out that not only did it spread to my liver, but I also had 2 abdominal mets and 1 in the pre-sacral space. The tumors grew after 10 rounds of FOLFIRI+Avastin, and now I'm on a clinical trial.

I don't think I'm thriving, in fact, I've given up hope. I'm 33 years old, a newlywed, was just getting on with my career and starting to think about having a family...but I'm dying. I wish I could be upbeat about it and say, "yeah, there's always hope"...I just don't feel that way anymore.

Sorry for the sour grapes, this is just my own experience.

Elizabeth

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Dx june 2009 and currently my path is Chemo, liver surgery, chemo and radiation, and rectal surgery when it has shrunk) and then i am sure more chemo, Docs, they love chemo.

But i am sure, hopeful that one day it will all be a distant memory. I am 44 and not done with life yet.

LizBiz, Go ahead run sreaming naked in the streets if you have to but don't give up hope.

I had cancer at age 34 and i was DOA when i found out. Two collasped lungs and lymph nodes full of cancer. I was caught just in time. I had two small kids and had just started life.

But i am here. I like to say life has been all peaches and cream, But as you can see i am here with a whole new cancer and yes blessed is me it is stage 4 again and i could die ( been there done that).

Oh by the way i think i am going to making bumper stickers that has a yellow ribbon and a circle with a line threw it like the save the Ta Ta bumper sticker instead mine will read for men
Save the *** hole, and Women Save the Boot-TAY

Taking orders now!!!

Hugs
Winney

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Stage 4 DX November 2008. Surgery to remove tumor in ascending colon, 7 out of 14 lymph nodes positive, spread to liver, two mets, then found another while doing liver resection in April of 2009. Finished 12 rounds of chemo, I have my scan scheduled for next week. I have been feeling some pain in my upper right side of my body, hope it's get gas but I will find out next week.

I have worked full time, making up time and commuting 2 hours a day, trying to keep my job. I think it helps getting up each day and going to work. I find that I am not the same person I was back in October of 2008. I don't find myself singing to the radio anymore and I think I am a bit more serious. I was alway laughting and the life of the party, but I am trying to come back. I have 4 daughters and 11 grand kids and would just love to hug them all for many years to come.

I hope to beat this and pray to God each day that he see the good that I am doing while I am here and still have a lot to offer. Giving up is too easy!

Raquel

menright's picture
menright
Posts: 258
Joined: Oct 2008

This is not a club I intended to join. I was dx'd in October of 2008. My battle is highlighted by:

Pre surgery chemo - 6weeks
Pre-surgery radiation - 6-weeks
Surgery - April 15th 2009
Post surgery chemo - still going expect to be done in October.

1 year is fast approaching. If all goes well, I will have a liver resection and be done. This will likely be after a 3-month break from chemo to see what the liver does on its own.

I can't wait to be done. A cure still seems possible.

Regards,

Mike

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I was DX stage 3 May 08, and then stage 4 June 08 after one liver met was found on a PET/CT. I was resectable for the liver at diagnosis. I had 6 weeks radiation/chemo with Oxali, and was hospitalized 1/2 way through with an opportunistic colon infection. Both the LAR and liver resection were done last fall in 1/2 the time the surgeons expected– 2 and 2 and 1/2 hrs. Then my brother-in-law died unexpectedly mid-October 08 in between my two surgeries. I started FOLFOX chemo the very end of Dec 08 and went until May 09. I have been NED since surgery and after one PET/CT scan, though they are watching a 1 cm spot on my liver that is believed to be where the surgical clamps were placed during the liver resection (entire right lobe and gallbladder). My CEA hovers around 1.5. I still have residual neuropathy in the soles of my feet and tips of fingers; it's been changing just a bit for the better just recently. My bowels have a mind of their own, but mostly I have control, though I am very aware of the nearest bathroom, and carry wipes and a change of underwear in my purse.

Certainly it's wonderful to be finished with the year's worth of treatments. A year ago Sept 10, I had my first cancer surgery to remove the rectal tumor. Two Sundays ago my husband and I rode our horses up into the Wind River Mountains nearby. Just a 10 mile ride up to about 9000'. The aspens were just starting to turn, and there was just the faint sense of chill in the air up high. Gathering thunderclouds followed us back down, and just as we loaded up to go home, the first drops fell, dotting the dusty earth. One of my surgeons after my second surgery, the liver resection, in late October 08 said that, yes, perhaps I would be able to ride my horse at the end of next summer. How grateful I am.

Yes, there's gratefulness, and there is also the experience of having a life-threatening disease, experiencing life-threatening treatment for over a year, and now, though disease-free, still at high risk of recurrence for the next two years. It just takes one slightly weird CT scan or blood test and who, me, see raindrops in the dusty earth?

Having a serious illness can seem like our body has betrayed us. What has been fascinating to me through all this is that, when I was most sick from treatments, and unable to do much more than just be alive, there was no sense of betrayal, no planning, no judgement, and no fear. However the instant I felt even the slightest bit better, then, the thoughts such as "when will this end?" "I feel horrible!" "how will I ever get through this?" etc etc would move in and clutter up the space.

I must admit at times, especially knowing other's experiences of the living and dying, that I feel guilty that so far I am doing OK. I know this is foolish and smacks of survivor guilt, yet it is there. I remember that there is no bar of suffering we have to leap over to be OK, to have suffered enough. I was DX with stage 4 rectal cancer, and yes, that other shoe could drop at any time. I appreciate the patience and equanimity I have experienced living this past year, and sometimes I am just plain scared as I look down the path.

Leslie

Mary5777
Posts: 19
Joined: Dec 2008

Hi, I was diagnosed after my colonscopy in Nov, 2006.( I had a routine one in 2003, which was normal) No symptoms, just routine. Iwas shocked when told i had transverse tumor of colon. Had colon resection Dec 12, 2006. Node positive 12/23 nodes? Stage 3. Did chemo Folfox. Clear. 2008 CAT scan showed ovarian cyst. Not. colon cancer in ovary. Had surgery. Had PET scan post op. Showed liver mass? Went to Pittsburgh, had liver resection by Dr Geller.(awesome dr.) Found out i had some minute peritoneal cells, removed 98%. Liver resection turned out to be benign. That was in 2008. Started Folfiri, in May after liver surgery. Have been on chemo mostly since then. Long story. But i am here. And so proud and thankful to be here. I danced at my daughters wedding. And laugh a lot. Do i have down days? Absolutely. Have lots of side effects. But i will not give up. i still get scared pre PET scan...Next week. But my girlfried, a breast cancer survivor, said you can't change your PET scan , go by how you feel. So thanks for everyone's intput. So, life is good.
i told my husband the other night , he should take my photo,(just kidding) no hair,just pink baseball hat, acne form rash on my face(thanks to Erbitux) covered in moisterizer, big socks on my neuropathy feet covering my moisterizer for cracked feet.
Mary
Still hope to be called NED some day.

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

I was diagnosed with Stage IV colon cancer in February, 2008, with inoperable mets to my liver. The local surgeon that I consulted referred me to Sloan-Kettering. I had a colon resection and HAI pump implanted less than 2 weeks after diagnosis. Before I began chemo 3 weeks after surgery, my CEA was almost 7,000 and I had shaking chills because me liver was struggling to help me maintain body temperature. I had a terrific response to chemo - HAI pump and IROX - and was able to have liver resection in October, 2008. Unfortunately, lung mets were found at the CT scan 4 weeks after liver resection. Xeloda for 4 months kept the lung mets in check but a small tumor developed in the caudate lobe of my liver, which was not touched in my liver resection. Four months of HAI chemo and Irinotecan caused the liver tumor to disappear from the CT scan but I now have too many tiny lung mets to be resected. They are too scattered, too deep and too centrally located. My liver enzymes have also finally shot up, so now I am doing only Xeloda. I am hoping for some progress after the Xeloda builds up some steam so that I can have either surgery or RFA on the lung mets.

I feel pretty good except that the Xeloda gives me much more fatigue. Neither the oxaliplatin nor the irinotecan bothered me very much.

I am wishing, and searching, for some new intensive treatment for lung mets comparable to the HAI pump for the liver.

I have gotten through this so far by exercising, keeping myself constructively busy with projects around the home that I have ignored for 15+ years, and by remembering how much my daughters need me to carry on, or at least show them how to persevere in the face of adversity.

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

I was diagnosed in Jan of this 2009 year, with Stage 4CC and a tumor in my liver. I was very scared, and shocked, as I had NO SYMPTOMS whatsoever, I felt fine, no bleeding, no pains, nothing, just a "hardness" in my abdominal area that was alitte uncomfortable when I bent, and it turned out to be tumor, I was devastated, I had 4 kids with me that needed calming down, and a wonderful doctor in that room that told me it was treatable these days, and alot of people have been living for a long time with cancer now. He was the one who referred me to my onc now, and she's been really supportive.

I've had a colon perforation which led me to having an emergency surgery and a colostomy, which led me to a few courses on what to do with that thing, and I now have it down pat, he is my friend now that I just had to get used too :)

After a couple bouts of small bowel painful obstructions, one that needed surgery, and one that didn't, I hope I have a couple months of nothing now, its been one heck of a year, and it can only get better I hope!

I get my strength from my friends and especially friends, heck, I talk to most people here then my offline friends, seems a few of my friends who I thought were my friends,don't seem to come and see me or call me as much anymore, they must think I'm going to die in front of them or something. Oh well, guess they were never real friends to begin with.

Well, hope everyone has a wonderful day

HUGGSSSS!
~Donna

serrana
Posts: 163
Joined: Apr 2009

Leslie I really enjoyed your thoughtful and honest post; it is lovely to hear your thoughts
and I hope you will post on these things often. Thriver-ship is really a privilege considering the alternatives. We need to stick together on this path.
Serrana

coxjames52's picture
coxjames52
Posts: 5
Joined: Sep 2009

Diagnosed April '08. Told I was only to survive until Christmas. Guess what? Still here..
3 surgeries, 12 months chemo. Next CT is in 2 weeks. Wish me luck.
jc

serrana
Posts: 163
Joined: Apr 2009

More and more I am reading that folks are given doom, gloom and time lines.........what a tragedy that docs even go there. Do they think they are God? Oh, I forgot M.D. means "Minor Diety". LOL

SSmith25
Posts: 11
Joined: Aug 2006

Diagnosed in May 2005, routine colonoscopy, no real symptoms. Resected colon and liver. 10 months FOLFOX with HAI pump. Still NED! Feeling great, lots of energy, lots of life. I've told my story here before, so won't repeat, but just wanted to join the roll call.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you all for sharing your stories. I need all the hope I can get. My sister was dx in 03/09, 39 years old, mets to liver and peritoneum. Emergency surgery to remove tumor and resect colon. Four months of Erbitux, hoped to have liver resected, but chemo holiday led to uptake in mets and now in lymph nodes. Currently on 2nd treatment of Avastin and 5FU, doctors are saying must do this chemo round before considering any other treatment options. The stats for this type of mcrc are grim and protocol is dictating that other procedures are not going to have much benefit. Advice, encouragement and similar stories would be wonderful! This has been one hard journey.

serrana
Posts: 163
Joined: Apr 2009

Pleeze.......don't listen to stats! They are outdated and are for horse races. They are for groups not individuals.
I wonder if a second opinion would be the way to go; there are MANY options of chemo out there. Hopefully you are at an NCI Cancer Center.....if not contact Heinz Josef Lenz MD at USC Norris for a consult; he is the best IMO
Serrana

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Stage 4 here in Vancouver BC.

Dx Aug '04 - Colon Rx, Liver Rx, Folfox, Folfir
Liver Met Recurrence Dec '06 - RFA, Xeloda, Irinotecan, Avastin
Local Recurrence Sept '09 - Rectum/Sacrum treatment pending.

I discovered this site during the time of my first recurrence. This community has been a lifesaver!

Visit me at "A Cancer Journal" http://rob-pollock.blogspot.com/ for thoughts along the way.

Be Well... Rob; in Vancouver

"We shall draw from the heart of suffering itself the means of inspiration and survival."
Winston Churchill

crazylady
Posts: 544
Joined: Jun 2004

I was dx in March, 2004, stage 2 at the time. Now stage 4 with mets in both lungs. I have had surgery on each lung and the cancer came back though I have been NED at times. Currently considered inoperable and on xeloda and avastin which has kept things stable since Jan. of this year. I have 7 children and since my diagnosis have enjoyed 3 weddings, the births of 2 grandchildren, 2 college graduations and 2 high school graduations. I'm looking forward to my youngest graduating high school in 2010 and plan to be around for a long time to come.

Jamie

serrana
Posts: 163
Joined: Apr 2009

Thrivers........We are a special group with determination and guts I am sorry that we don't have a seperate chatroom because of our uniqueness........how about continuing this thread as time goes by?
Serrana

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kuastoi
Posts: 63
Joined: Apr 2009

Dx 6 March 09, stage IV with mets to lymph nodes in the neck, chest, abdomen. Round 12 of chemo this coming Monday, CEA coming down towards normal range, midway scans stable to improved....

Eating, juicing, exercising, meditating, visualizing....just not willing to give this thing any power over me. Feel good save for a bit of neuropathy, but now switched to Folfiri with good tolerance.

Searching for NED, anyone know where he is?

Good thread, let's keep it going.

Thanks for all the long termer's postings,it keeps hope alive.

Tom

GetBusyLivin's picture
GetBusyLivin
Posts: 25
Joined: Aug 2009

Six months since my 46-yr old hubby's Stage IV dx with mets to liver and lymph nodes. He's just finishing up cycle 8 of Avastin/Oxali/Xeloda. The last PET scan showed good reduction and his follow-up PET will be the first week of October. Also searching for NED! Thankful for all the hope this board provides, since our pragmatic doc doesn't do much of that...

mom_2_3
Posts: 964
Joined: Nov 2008

Cancer was discovered quite accidentally in November 2008(but quite luckily) during a scheduled c-section of our third child. My daughter is my true angel.

I had 5 FOLFOX treatments and then went in for a colon and liver resection (5 bilobar mets) in February 2009. Additionally I had an HAI pump implanted. Since then I have had about 6 months of chemo and will continue the adjuvant chemo until November 2 which is my scheduled last chemo treatment. My daughter was born November 4 so it will be almost exactly one year since my diagnosis to when I stop (hopefully for good) my treatments. I have been NED on each CT scan (4 since surgery) and have another scan in November. My oncologist said that 14 months is the median time to recurrence so making it to next April with no recurrence is my first goal.

I have a checklist of things I do each day to support my recovery. I exercise (heartrate at an aerobic level), juice, get out in the sun for 15 minutes each day and try and avoid sugar as much as I can. Additionally I take Vitamin D with calcium. Once chemo ends I will also take mushrooms, curcumin and aspirin. Above all I pray and I am thankful for the blessings of my family and friends.

Amy

DennisR
Posts: 148
Joined: Sep 2009

Hey Serrana,

I was diagnosed in 2000 with Stage 4 NHL in my descending colon and which had perforated the colon and involved the surrounding tissues and muscle and had completely disolved my appendix. Wound up having emergency re-section surgery during which they removed the entire descending colon, 28 inches of my large intestine, and some involved lymph nodes.
After 8 sessions of R-CHOP Chemo, and 5 years of great recovery, I was considered Cured.
Three years later in May, 2008 I had a recurrance of NHL, the same cancer type, but they consider it a recurrance instead of the same cancer. Go figure.
I had 8 more sessions of some other strong Chemo cocktails designed to shrink the new stage 2 tumor. I could name the various Chemos used but, the 24/7 drip Chemo treatment itself had no name and was somewhat experimental performed only by an Oncologist in Denver, Colo. at the VA Hospital. It worked it's magic in 2 treatments, the other 5 were for insurance. I was then sent to the Seattle VA for a Bone Marrow/Stem cell Transplant, which I completed in late March, 2009. Whew!
Recurring cancers are problematic because they tend to continue to recur with less and less time between recurrances and the Chemos become less effective each time, hence the BMT, which they likened to Burning the Field, getting rid of the weeds, and then replanting the grass. Their anology, not mine. (I call it Pure Torture)
I haven't had any detectable cancer since July, 2008, they just assumed, based on experience, it was still slurking somewhere in my Bone Marrow, waiting for the right opportunity to come out. Scary stuff.
DennisR

changing2
Posts: 118
Joined: Jul 2008

Hi! Diagnosed July 2006. Did all the chemo regimes. Not a canidate for trials etc. Mets to lung and liver. Stopped tx in Jan.....and I'm still enjoying life:)I'm so blessed! Manny

serrana
Posts: 163
Joined: Apr 2009

What an amazing bunch of thrivers you ( we) all are. Wow. Keep posting stories.
Serrana

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi,
dx stage 3 11/07 resection12/07, chemo folfoxw/ erbitux(trial) from 1/08-7/08.
Cat scan 7/09 show mets to lungs. Just got out of hospital removed one nodule
dx met colon cancer. I am thankful to listen to all of your stories, it gives us hope
and we all could use that! I have three children, all girls and I want to see them
off to college. I'm looking at folfiri with avastin next. Thank you all for posting your
story and giving us someone to look up to!
Donna

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