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Recent Stage IV Diagnosis

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

My sister, age 39 with three small children, was recently diagnosed with Stage IV colon cancer. She had NO symptoms, and ended up in the ER after severe stomach pains. Emergency surgery revealed the cancer, mets to the liver and peritoneum. She has done 5 months of aggressive chemo; CEA levels went down, but still hovering at just under 100. She is hoping to have her liver resectioned. We would love to hear from some Stage IV survivors that have a similar experience. Research online is not that encouraging. She is being treated at a NCI cancer center, which after reading the posts, we are thankful for. Thank you.

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

Hello, I am 41 with two children 13 and 10, Dx. in May 09 stage IV with liver mets and in stomach and 9 lymphnodes. I have completed 4 Chemo treatments of Folfox with Avastan.My CEA was 15 when I started and after my waiting 6 wks. after my colon resection my CEA went to 89.5. After two treatments my CEA level went to 21.9. I am new to this as well and very scared but praying that my scans will look good in between my 5 and 6 treatment.Tell your sister to come on here and talk with all of us. It has helped me. God Bless Patti

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

I forgot to add that my liver can't be resected at this time, have to wait but Onc. is wanting them to melt away and avoid surgery....Not sure if that is possible but all things are possible with the Lord. So, I wait...Has your sister had a scan? what was her CEA levels when she starte and how many treatments has she had? Patti

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

I read your story and it is so similar to my sister's. She was diagnosed in March of 09. She too, had a tremendous pain in her abdomen. She went to the ER and after many tests, was diagnosed. She had a tumor that grew outside of her colon, but penetrated the colon and was causing the pain and blockage. She had surgery the next day and had her colon resected and her ovaries removed. She has had 4 months of chemo, continuous, with the same 48 hours drip Her levels when she started were close to 500, and they are now just under 100. They have been at that marker for the past month. I believe in faith, hope and a positive attitude are key, and she has all of those things. I appreciate you sharing your story and will ask her to join this board. I am so inspired by the survivor stories. I will keep you and your family in my prayers. marie

amcp
Posts: 251
Joined: Jan 2009

CLICK ON MY NAME amcp IN THE BLUE BOX AND YOU CAN READ MY HUSBAND'S BATTLE WITH THIS MONSTER. HE JUST HAD LIVER RESECTION DONE ON APRIL 30 OF THIS YEAR AND IS DOING GOOD. AT LAST SCAN THERE WAS NO EVIDENCE OF DISEASE BUT CEA WAS STILL 39.6 BUT DOCTOR WAS PLEASED WHEN SHE LOOKED AND SAW THAT IT WAS 221.6 FOUR WEEKS BEFORE. KEEP POSITIVE...THERE ARE SO MANY GREAT AND HOPEFUL STORIES HEAR. PEOPLE ON THIS SITE ARE AMAZING. THEY HELPED ME GET THROUGH SOME ROUGH TIMES AND STILL DO. GOOD LUCK AND I WILL KEEP YOUR SISTER AND YOU IN MY PRAYERS.
HUGS
ANNA

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

It is amazing and inspiring to read your husbands journey. It is comforting to share with others that have been through this. I will ask her to join this board. Thank you for replying.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Marie

Click on my name and you will see my story and its unique joourney...I'm under way in my 6th year, so the fight has been a long one...but I'm still here to tell about it. I'm at the CROSSROADS in my journey right now and am trying to nail down which path I will take after we take some more scans and compare those with the previous and decide if its going to be another surgery...mets to the pleura of my right lung. The last 2 months trying to get this all sorted out has taken awhile, but hopefully in another 3 weeks or so, the verdict will be in.

I'm living proof that you can live with Cancer for a number of years, and I've got no plans on checking out yet.

Take care and please keep us all posted...we can all do it together. So great that you found the site - it will be a lifeline during your darkest and brightest hours!

-Craig

eric38's picture
eric38
Posts: 588
Joined: May 2009

I`ve only been at this game for a little over 4 months. I`m stage 4 with 3 - 4 mets to liver and active lymphs throughout my abdominal and pelvic region. The Doc believes that I am responding well to treatment and may even already be in remission. I won`t know for sure for another week or so but even if I am not in remission he believes I will show significant improvement. I`m telling you this so you will know that it is possible to come a long way in a short period of time when it comes to treatment for this type of cancer. It`s also possible to beat this or live with it for many years. There are people on here that will amaze you with their testimonies. No matter how bad you have it there is always someone who had it worse and beat it.

Eric

p.s.

Pay attention to the people that have been at this for a while. They know what they are talking about.

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

Eric,

Your news of your great progress in beating this is great! I am glad the chemo is working. Thanks for the words of HOPE.

Marie

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

Eric,

Your news of your great progress in beating this is great! I am glad the chemo is working. Thanks for the words of HOPE.

Marie

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

Eric, that is fantastic! Your case seems very similar to my mom's, so I am VERY glad to hear you have responded so well to the chemo. Hoping & praying for a FULL remission for ya, buddy!

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

Craig,

Your story and strength are inspiring. I will keep you in my prayers.

Thank you for responding.

Marie

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

Hello!

I can totally relate to your sister's diagnosis. I was 33, and my kids were 2, 4,& 7 when I was diagnosed almost 8 yrs ago (Oct, 2001). I have been clear ever since my surgery in Jan 2002. Mine was also liver mets with lymph node involvement. Take each day as it comes! Some days will be "conquer the world" days, while others are totally "pajamas" days...both are acceptable. I had 5 FU, Leucovorin, and camposar. I still have my port...aka, my security blanket. I had an ileostomy which was reversed after 9 months. Let me know if I can help. Sometimes it helps to hear from us on this board who really mean it when we say, "I understand."

Hugs,
Stacy

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

Stacy-

Thank you! I love hearing your story and I am sorry you are battling this disease. I have told my sister to join this board and let her know about you and your courage and strength!

Many hugs and prayers your way.

Marie

eric38's picture
eric38
Posts: 588
Joined: May 2009

Kfen - Thanks for being my cheering section. I will let you know how my scan turns out. If it turns out to be as positive as the doctor suspects maybe it will make you feel better about your mother`s situation.

Stacy - Thanks for the post. You are an inspiration.

Eric

Devasted
Posts: 186
Joined: Jun 2009

Stacy,

It's always so encouraging to hear these stories vs. reviewing the stats on the internet.
Did you have a liver resection? My husband was dx in May 09- stage 4 rectal cancer.
They did a PET scan and only liver mets showed up and oncol. seemed to think that
was good...liver specialist thought 5 mets were too spread out and it was "advanced"
stage.... He just completed 6 weeks of xeloda and radiation and did great, minim. side effects. Next is CT scan and ultrasound. Then maybe folox / avastin for 3 months and surgery?
His CEA was 10 at the initial dr. visit.

Any thoughts? Thanks for your encouraging post! It gives me hope.
We have one son, he's tweleve.....

mom_2_3
Posts: 965
Joined: Nov 2008

When I was diagnosed I had 5 bilobar mets that were spread apart. 3 were in the left lobe, one in the right and one between the left and right lobes. First oncologist said inoperable. Second oncologist said "close" to resection. 5 chemo treatments and then had liver resection, entire left lobe removed and 2 wedge resections for the right one and middle one. Liver re-generated in about 6-8 weeks and currently NED (although still doing adjuvant chemo).

Devasted
Posts: 186
Joined: Jun 2009

It is so helpful to know there is hope...Thanks so much!

What type of chemo treatments did you have before resection?
What type of chemo are you doing now?

mom_2_3
Posts: 965
Joined: Nov 2008

I had 4 treatments (2 rounds) of FOLFOX before the CT scan. Since surgery I had 2 more FOLFOX treatments and the remainder have been 5FU alone. I have 5 more 5FU treatments. I also get FUDR in my HAI pump.

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

I have mets on all lobes of liver. Oncologist says no way can I be resected, I'd have no liver left. Is it possible that they can get more shrunk so I can have resection?

My orignal CEA was 1400 and I'm down to 7.5 after 9 cycles.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

When I was first diagnosed, I had tumors in all parts of my liver & I was also told I was not a candidate for a liver resection. After 6 months of Folfox/Avastin treatment and then another 6 weeks of radiation on my original rectal tumor (which completely disappeared, by the way!), I became a liver surgery candidate. I went from the 12 or more tumors they could see in my liver on the PET scan down to "just" 3 that were still visible on my CT, but not my PET. It was then that I became a surgical candidate. I had my liver resection in May 2007. The surgeon thought he was removing 3 tumors (or possibly dead tissue- didn't know at that point), but he discovered an additional 3 liver tumors during the surgery, which had never been detected on any scan for some reason. When all 6 were biopsied after surgery, they were still all positive for cancer- glad I got them out of there!

Now, I just had a scan a couple of weeks ago that showed some activity on the PET scan in one small area along "the resection margin" in my liver again and also somewhat more extensively in my lungs again.So, I did just have to start up chemo again- Folfiri with Avastin this time. Honestly, I wondered if the liver resection would "stay" because I knew I formerly had liver tumors in the part of my liver that remained after surgery. I wondered if tiny microscopic seeds left there (which don't show up on scans) would ever start growing back again. But, even so, I believe I'm definitely better off now than if I had just left those liver tumors alone.

Anyhow, I just wanted to let you know that sometimes when a doctor says you can't have liver surgery, that it still does sometime happen if you respond well to the chemo. Sometimes just getting a different liver specialist's opinion is good- what one says can't be done, another might be willing to do.

Blessings to you,
Lisa

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

so much for your detailed information and blessings... Back at ya..we must keep fighting!
As I get my 2nd and 3rd opinions(gosh it takes a while to get in) I hope to hear other options that MAY be in my future if tumors keep shrinking.

Take care

Peggy

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

Initially my sister was told she only had 2 months to live. That was the stupidity of the doctor in the er, someone who clearly did not have experience with the disease. That was in March of 09. One doctor also told her there was nothing he could do for her, and this was at UCLA! Now, we are with a fantastic team at Stanford with a liver surgeon who thinks he can resect. She did complete 4 months of chemo. That helped shrink some of the tumors, enough to operate. I liked one survivor on here, Amy, who said, she found an oncologist that said I cannot predict outcomes. Everyone reacts differently and I will treat you as aggressively as you can and want to be treated.
So-do not give up! There are so many options that I know your husband can and will beat this. It sounds like he is responding well. My sister has three children: 8, 6 and 4. I will keep you and your family in my prayers. PM if I can be of any assistance. I have found comfort in this board and the kindness of strangers here.

slamb58's picture
slamb58
Posts: 32
Joined: Jul 2008

Sfmarie,
I was diagnosed June 2008 with stage IV cc. I had 3 mets to the liver. I had my liver resection in Oct of 2008. Was wondering who your sister's surgeon is. I am also at Stanford and my liver surgeon is Waldo Concepcion (I think that is how it's spelled), and he was great. I had two mets resected and the third one they did a RFA. Almost a year later and I'm doing great. I still work full-time, travel and am enjoying life. I will keep your sister in my prayers.

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

No, it is not Waldo. I cannot remember his name. I would love to hear from you regarding your experience. She is also seeing Dr. Fisher. I will send you a PM.
Marie

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

My husbands oncologist is also Dr. Fisher. His surgeon is Dr. David Gregg. It's so helpful when dealing with cancer that we are fortunate to be able to go to Stanford for our care. We live in the central valley and if I had not been so aggressive in having my husband transfered, I would have lost him in Nov. 07.

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

Trish,

I love hearing great stories, especially since your husband is also being treated by the same doctors. How is he doing? How was the surgery? Can you give me any advice? Surgery is scheduled for August 26th.

Marie

slamb58's picture
slamb58
Posts: 32
Joined: Jul 2008

Marie,
Please feel free to email me, slamb58@sbcglobal.net, and I would be glad to share my experience. I have heard great things about Dr. Fisher. I wish the best for your sister's surgery, and if there is anything I can do, please let me know. I don't live far from the hospital so when she is up to it, I would love the oppportunity to come by and meet and visit with her.

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

I have had my liver resected. They didn't know I was stage 4 until I was on the operating table. What was to be a 4 hr surgery (max) was 10 hrs. I like to consider myself an over-achiever! lol They took my gallbladder to get a better shot @ the liver.

Anything I can do, just let me know. I don't know how I ended up "cured" as my doctor said, but whatever I can do to pull someone along, I'm there!

Hugs,
Stacy

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

We are also new to this. My husband was DX in Oct. of last year and has mets to the liver and lungs and a small spot on one of his adrenal glands. He is on treatment #11. This site has been such a help to us. We have found so many people that are living with this. So much information that has helped us. Read people's post's and their stories and I am sure you will feel better. We have learned so much about different treatments and gained many friends. Good luck to your sis.Paula G.

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

How is your husband doing? Patti

teresa7374
Posts: 9
Joined: Aug 2009

could you please give me some info. i am a 43 yr old female diagnosed with stage iv colon cancer with mets to liver and lungs. should i have surgery on the primary tumor first and then start chemo. or should i do chemo first and then surgery. i have had different opinions from doctors.

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

I am stage 4 and still surviving, on Oct. 12th it will be 4 years since my diagnosis. I am enjoying all that I can right now and still in treatment. I am not cured and I don't plan on being cured unless a miracle happens but I am alive and that's what counts. In Oct. I'll pray for another year..I take it one step at a time. i will keep your sister in my thoughts and prayers, Hugs, Audrey.

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

Hi, Also New June 13, 2009 Dx, I had three rounds Chemo and they hope to do Surgury in Sept, I have one spot on my liver and for the most part I am doing really well I will Have some more CT scans after my 4 chemo and i hope to see alot of shrinkage, I have really good days when this whole mess does not bother me and then some days i am really down, My advice is alway question what the docs say and ask for a second opinion if you get any bad news, i have three Docs, one oncologist and two surg, and a whole surgery team ( advisory bourd at Emory in Atlanta to rely on, )

This is my second cancer the first i was free from for 10 years, this is a new cancer and my family history is riddled with all sorts of cancers, I just have to believe i will beat this one to,

Hugs and Prayers
Winney

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