Any Stage IV long term survivors here?

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wolverine
Posts: 2
Joined: Wed Apr 20, 2016 11:04 am

Any Stage IV long term survivors here?

Postby wolverine » Fri Apr 22, 2016 11:17 am

Looking for hope and information. My best friend was diagnosed with rectal cancer last May, had surgery, and they discovered it was also in several lymph nodes. She had complications recovering from surgery, so she got a late start to chemo, and just last month after finishing chemo her scan showed mets to the lungs and spine. She's 38. Doing more chemo. Has anyone else here been through this with success? The statistics are horrifying to me.

crazylife
Posts: 230
Joined: Wed Dec 30, 2015 11:29 am

Re: Any Stage IV long term survivors here?

Postby crazylife » Fri Apr 22, 2016 1:53 pm

I've read quite a few stories on here. I've also read a few stories online of people who have been cured. I know of someone who lived 11 years with it. Also, from what I understand the statistics are outdated. Stay positive for your friends' sake!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)

Swimmer22
Posts: 49
Joined: Mon Oct 24, 2011 7:25 am

Re: Any Stage IV long term survivors here?

Postby Swimmer22 » Fri Apr 22, 2016 2:20 pm

Here I am.... diagnosed December 2010 Stage IV rectal cancer with lung nodules. Chemo (Folfox) - Lung Surgery - Chemo/Radiation - LAR with ileostomy - ileostomy reversal. All clear since surgery-- finished 12 Folfiri treatments four years ago this month. We are out here!
12/10 - Rectal Cancer Stage IV
1/11 - Lung Met- VATS
3/11 - Folflox begin 6 tx.
7/11- 28 tx. chemoradiation
9/11 - LAR Surgery (Complete response to Chemo)
10/11- 12tx. of Folfiri Mop-up
7/12 - Ostomy reversed
NED since 9/1/11
3/13 -Port Removed

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Re: Any Stage IV long term survivors here?

Postby missjv » Fri Apr 22, 2016 2:25 pm

ten years since stage 4 diagnosis still kicking!!

missjv

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Any Stage IV long term survivors here?

Postby NateA » Sun Apr 24, 2016 11:15 am

Not sure of the long term definition, butt last July I was told 100 lesions to the liver...clean PET in march! Kick ass day by day, the days rack up!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

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betsydoglover
Posts: 879
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Any Stage IV long term survivors here?

Postby betsydoglover » Sun Apr 24, 2016 12:02 pm

Diagnosed Stage 4 almost 11 years ago. Six years since lung surgery. Five years off Avastin. See signature for details. There is definitely hope.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Any Stage IV long term survivors here?

Postby ronswife » Mon Apr 25, 2016 12:38 am

Hello All,

I just registered on this forum tonight, Sunday night, 4/24/16. My husband was diagnosed 3/15/16 with stage 4 colon cancer that spread to his liver. Both the top and bottom of the liver is covered in many small spots. My husband Ron declined a biopsy to verify this was cancer.

I have read the statistics on long term survival for those who are stage 4 and I am TERRIFIED!!

Also, my hubby is a long term diabetic (type 2) and for the last month or so, has been suffering greatly with diabetic nerve pain. They put him on 900 mg of gabapentin and now his left leg is swollen and his left foot is so swollen he can't get his shoes on!

And if ALL of this wasn't BAD enough, his last CT scan showed blood clots in one of his lungs. The onc put him on Lovenox for an indefinite period of time. This is a real hardship for us financially, as it costs $330 per month for the daily injections!

I am here to learn all I CAN about the BEST possible treatments for Ron, and find out about any financial assistance programs as well.

I read online over the past weekend that there is a new treatment for cancer that has spread to the liver, where you implant a pump that takes the chemo thru the hepatic artery. Has anyone ever heard of this? I want to know about clinical trials as well!

I am also very interested in any alternative medicine treatments for his neuropathy.

I am VERY glad I found this forum using a Dogpile search!

:cry: :?:
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Any Stage IV long term survivors here?

Postby ronswife » Mon Apr 25, 2016 12:47 am

These stories really give me HOPE, which I very badly need! I went on cancer.gov and was told the chances of someone with stage 4 colon cancer surviving 5 years was only 11 to 13%!!

Can those who posted in this thread tell me which chemo they received and what side effects they had?

My hubby Ron starts his chemo on Thursday, 4/28. His onc already told him he will have to wear a pouch for 2 days. Is this normal for CC?

Also how many of you have had severe diarrhea? The doc told Ron he may be subjected to that. What about premeds for the chemo? Can this be prevented?

I thank you SO much for answering my many questions!!

:cry: :?:

OrchardWriting
Posts: 53
Joined: Wed Nov 18, 2015 9:10 am

Re: Any Stage IV long term survivors here?

Postby OrchardWriting » Mon Apr 25, 2016 7:23 am

Stage iv two and a half years ago with a 5 cm tumor in my liver after rectal cancer. Still sweating it, but knock on wood so far so good.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.

OrchardWriting
Posts: 53
Joined: Wed Nov 18, 2015 9:10 am

Re: Any Stage IV long term survivors here?

Postby OrchardWriting » Mon Apr 25, 2016 9:08 am

As to chemo questions:

Chemo affects everyone differently and there are a range of side effects he can experience. Some people have very little problems while others get very sick. I was among the very sick.

As to premeds, you have to be careful you don't take something that lessens the effectiveness of the chemo. Check with your oncologist before you do anything. I found that the meds they gave me to help with the chemo side effects were worse than the chemo at first so I stopped taking them. I smoked very small amounts of pot, which helped immensely with nausea the general flu-like feeling I had. It also gave me an appetite. I also took Adavan, which helped with nausea and anxiety. And I drank a mix of tonic water and grapefruit juice, which for some reason tasted good and helped me feel better too.

The best advice is to ask what others have done and be willing to try different things to find what works for you.

And as he experiences side effects--the chemo gets worse as you go along--post questions here and other places. For example, he will probably have neuropathy and so you will want to know how to manage that.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Any Stage IV long term survivors here?

Postby Nik Colon » Mon Apr 25, 2016 5:18 pm

ronswife wrote:These stories really give me HOPE, which I very badly need! I went on cancer.gov and was told the chances of someone with stage 4 colon cancer surviving 5 years was only 11 to 13%!!

Can those who posted in this thread tell me which chemo they received and what side effects they had?

My hubby Ron starts his chemo on Thursday, 4/28. His onc already told him he will have to wear a pouch for 2 days. Is this normal for CC?

Also how many of you have had severe diarrhea? The doc told Ron he may be subjected to that. What about premeds for the chemo? Can this be prevented?

I thank you SO much for answering my many questions!!

:cry: :?:

I have a link in my sig about my treatments. The first are with folfox, later folfiri. The pouch I assume you mean the 5fu pump you go home with. Don't think statistics, they keep improving and are individual. The liver, I assume you mean HAI pump which others here have had also. Do you have insurance? Hopefully other diabetics and people with similar issues can answer more of your questions. You can start a new thread to ask and hopefully get more answers. Best wishes
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Any Stage IV long term survivors here?

Postby ronswife » Tue Apr 26, 2016 1:04 pm

Thank you SO much Nik Colon!

I will ask Ron's onc Thursday about the HAI pump. I didn't know what it was called. I am GLAD people on this forum have gotten good results with it including you.

I will also post a new thread asking for more info regarding the diabetic neuropathy!

:D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Any Stage IV long term survivors here?

Postby Nik Colon » Tue Apr 26, 2016 4:40 pm

ronswife wrote:Thank you SO much Nik Colon!

I will ask Ron's onc Thursday about the HAI pump. I didn't know what it was called. I am GLAD people on this forum have gotten good results with it including you.

I will also post a new thread asking for more info regarding the diabetic neuropathy!

:D

Your welcome :) I didn't have the HAI pump, but did have liver resection. Others here have had it tho. Hopefully they will reply, or you can ask about it when you post a new thread. Just seen you did :) Again, best wishes
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

CrossfitChick1980
Posts: 32
Joined: Wed Nov 25, 2015 9:40 pm

Re: Any Stage IV long term survivors here?

Postby CrossfitChick1980 » Tue Apr 26, 2016 9:45 pm

Hello! My husband has Stage IV colon cancer. He was diagnosed in 2014 and recently passed his two year cancerversary. He is currently on Avastin only and we have an appointment to reassess for surgery if necessary. It has been a loooonnnggg two years but he is still here. Many blessings to you and your family.
Caregiver to DH dx with Adenocarcinoma of Small Intestine April 2014.
March 2014- Small Bowel Resection
May 2014-October 2014: Folfox- 12 cycles
April 2015- Liver mets
June 2015- Xeloda/Oxalyplatin
September 2015- Suspicious abdominal lymph nodes
October 2015- Folfiri/Avastin
December 2015- Liver Mets, lymph nodes shrinking.
April 2016- Liver mets gone! lymph nodes stable
June 2016- Avastin and Xeloda
June 2016- MSS, KRAS :(

Mom to 4 lovely girls and 1 stubborn husband :)

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horizon
Posts: 1426
Joined: Tue Apr 12, 2011 10:10 pm

Re: Any Stage IV long term survivors here?

Postby horizon » Wed Apr 27, 2016 9:14 am

wolverine wrote:Looking for hope and information. My best friend was diagnosed with rectal cancer last May, had surgery, and they discovered it was also in several lymph nodes. She had complications recovering from surgery, so she got a late start to chemo, and just last month after finishing chemo her scan showed mets to the lungs and spine. She's 38. Doing more chemo. Has anyone else here been through this with success? The statistics are horrifying to me.


This is the first thing that comes to my mind:

viewtopic.php?f=1&t=53052&p=418755#p418755
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?


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