Any Stage IV currently in NEDville? Please share any advice or tips? P

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NedPlease
Posts: 535
Joined: Fri Mar 23, 2012 3:56 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby NedPlease » Thu Mar 01, 2018 11:28 am

Ehut,
I really like your story:)
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
Today- NED

Joannerogers
Posts: 259
Joined: Tue Jun 16, 2015 4:50 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Joannerogers » Thu Mar 01, 2018 8:11 pm

I was diagnosed stage IV 3 years sgo, Mets to liver. Had the chemo with good response, several surgeries..the last one a year ago, and so far I'm NED! I have a scan scheduled in April...not planning on any surprises.

Good luck to you!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:06 pm

it is not easy to resume normal diet and lifestyle knowing that they may have been partially responsible for the disease in first place


Yep, i was being told may be my love for barbecue pork is the cause to CRC... :cry: Every time I smell it I'm like...darn.....I WANT IT!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:10 pm

I’m still here living a life without thinking about cancer every waking minute. And that took years. Read my signature for treatment details.
I live in healthy moderation but always did really. Nothing extreme- an aspirin and Vit D most days, exercise most days, and occasional alcohol and red meat.

Nedsville is possible.


Aspirin and Vit D + vitamin is what most people do. I will do that and celebrate citizenship at NEDsville many years to come!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:17 pm

While my recurrrnce was a terrible setback and absolutely devastating, my oncologist was blown away that it remained stable over nearly two years and only began to grow when I took a “supplement vacation”. He has encouraged me to keep my integrative protocols and lifestyle changes up.


This is interesting. Many Onc in my country don't believe in supplements. It's sort of good to have but won't kill you if you don't take them kind of thing. I was a bit reluctant to take supplements for a week or two, because there are so many tablets to swallow. I'm standing at around 10 tablets/ day.... :oops: :oops: :oops: :oops:
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:23 pm

It does seem like EVERYONE wants to give you "helpful" advise. Or they read somewhere of some miracle cute, etc. But, I feel at least they are trying to help me, instead if avoiding the "C" subject. You have to decide what is right for you, know your body and what diet it is capable of handling, etc. If I tried to follow a raw veggie diet or something similar, I would loose more weight! Maybe "white" bread is bad for me, but you know what? It does not give me instant diarrhea. And things change over time, so you can make adjustments as you go.


EXACTLY the point in your message! I would prefer "helpful" advice regarding diets over avoiding the "C" subject or seeing the "sorry eyes" when talking about it :?
- and EVEN WORSE, when you say Staaagggeeeee fffouuurrr, they almost look like they are planning to go to your funeral services.

I had vegan ice-cream for the first time in a year 2 weeks ago, and it made me SOOOO happy, I mean so happy I was smiling to myself and dancing around in my apartment :P I figured if I don't overdo it, having a small cup of vegan ice-cream made with coconut sugar can't hurt :oops: May be give me all the good chemistry in my body to fight Ca! :)
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:29 pm

This past November my CEA was 4.3 and 5.8. I was very sick at the time with a 10 week old sinus infection. I did some research and saw that hypothyroid is a common cause of elevated CEA's and if untreated long enough, the CEA can be well over 100. I asked to be checked because of other symptoms of hypothyroid and my numbers came back double the high norm for hypothyroid. I've been on thyroid meds (3 adjustments now) since November and will have my CEA and scans in the end of March/ beginning of April.


Yes I remember your story, I think you started a thread? or posted your experience back then? I remember reading it and was hoping the elevated CEA is definitely NOT a recurrence!!! I was so anxious waiting for your result to come back though I'd never written any responses :) I write down the journeys of everybody now in NEDville and I look at it from time to time to encourage myself. Thank you for sharing your story!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

lovelife789
Posts: 112
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Thu Mar 01, 2018 9:51 pm

I took several supplements after chemo ended: modified citrus pectin, coriolus versicolor PSK, Cimetidine, and Aspirin.


Ehut,

This is a rare combination! I have heard of Citrus Pectin, PSK and Aspirin. Can you share what are the exact benefits of Cimetidine? My Onc don't believe in supplements, so I have no source to get to know more except those "content farm" online....
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

Mattie
Posts: 54
Joined: Fri Mar 07, 2014 1:06 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Mattie » Thu Mar 01, 2018 11:27 pm

Hi There.

I don't really have any tips. I have had recurrences but have been able to beat them back down each time. My signature has my history. It doesn't really get easier, although I try to convince myself otherwise. Each time I have a recurrence I think it's the beginning of the end....but then it's not. I am doing avastin only right now. I'm NED.
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, sticking with Xeloda/Avastin
8/17 still NED Dropping xeloda. Avastin only.
2/18 still NED sticking with Avastin only

mom_2_3
Posts: 359
Joined: Sat Nov 29, 2008 8:09 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby mom_2_3 » Fri Mar 02, 2018 12:24 am

I was reading through your posts and thought how funny it was that we sounded so similar. If I didn't know better I almost would have thought you were me and I was you! Like you I also write (wrote) down stories of people I came across that had long-term survival. At the beginning I would pull out that book frequently and read the names again and again. I also had a severe reaction to Oxi on my 7th treatment, actually going into cardiac arrest and spending a few mights in the cardiac unit of Columbia Presbyterian for observation.

Last week on 2/20 I celebrated my 9th year in remission. It was kind of interesting as I didn't even think of it in the morning and it wasn't until noon that a friend of mine texted to mention my surgical anniversary.

In the beginning I was gung-ho no sugar, juicing like crazy and exercise like a mad woman. Today I consume sugar in moderation, still juice but not as frequently and still exercise. My oncologist told me that if there was one thing I could do to avoid recurrence it was to exercise and so I took her at her word. I have two more scans and I'm guessing that my oncologist will cut me loose. I get bloodwork and CT every June/July.

I also had (actually still have, just inactive and waiting to get it removed) and HAI pump and I imagine it's one of the things most relevant to my remission outside of two remarkable surgeons (colon and liver). Email me any questions.

All the best!
Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
7.34 years NED as of 06/2016. Next scan June 2017.

ilovemyfrenchie
Posts: 14
Joined: Fri Nov 03, 2017 9:20 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby ilovemyfrenchie » Fri Mar 02, 2018 11:56 am

Joannerogers wrote:I was diagnosed stage IV 3 years sgo, Mets to liver. Had the chemo with good response, several surgeries..the last one a year ago, and so far I'm NED! I have a scan scheduled in April...not planning on any surprises.

Good luck to you!


Hello Joannerogers!

Well wishes to you! Were you originally told you were inoperable? Just curious when that point is with the liver shrinkage they inform you it is resectable. Thanks!
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/17 started Folfiri with Avastin (CEA 171)
8/18 CT = liver Mets continue to shrink (CEA 4)

“Chemo for life” hoping for surgery soon

Ehut
Posts: 184
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Ehut » Fri Mar 02, 2018 9:58 pm

lovelife789 wrote:
I took several supplements after chemo ended: modified citrus pectin, coriolus versicolor PSK, Cimetidine, and Aspirin.


Ehut,

This is a rare combination! I have heard of Citrus Pectin, PSK and Aspirin. Can you share what are the exact benefits of Cimetidine? My Onc don't believe in supplements, so I have no source to get to know more except those "content farm" online....


Cimetidine is normally administered before and after surgery to prevent loose cancer cells from escaping the surgical site and causing metastasis elsewhere. There have been some studies showing at least anecdotal evidence that it helps prevent cancer cells from "sticking" to blood vessel walls and setting up shop. I didn't discover it until after my surgery, but I felt there may be some benefit even down the road. Don't know if it helped, but I'm very happy with where I'm at so I wouldn't change a thing.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

mariane
Posts: 623
Joined: Sun Sep 13, 2015 6:16 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby mariane » Fri Mar 02, 2018 10:39 pm

I take Cimetidine as well. However my oncologist is skeptical about it.
Aspirin is anti platelet agent. Be careful if your numbers are low.
Aspirin and curcumin elevate LDH level. They mess up with monitoring recurrence a bit.
My oncologist is strongly against curcumin after and with HAIP.
I take probiotics daily.
I walked myself through chemo walking 6 miles every day even with 5FU. I exercise and garden a lot.
I so miss Brown Bagger, our gardener... Spring makes me miss him more.
I do not keep strict vegan diet however I eat less meat. Honestly I hardly ate meat before cancer... and ate lots of fruits and vegetables before and now. I have always cooked from scratch. I keep cooking :) because I like it.
I also try to challenge my brain and keep myself busy. I think I experience a slight short memory loss. However I manage it and try to exercise my brain.
Life is good.
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby JDinNC » Sat Mar 03, 2018 1:00 am

I’m a survivor of stage 4 colon that spread to my lung. July will be my 5 year mark...I never had a recurrence. I take supplements off and on...Cell Stop, mushrooms, vit D, turmeric are a few. I started taking Cimetidine yesterday after learning my melanoma has returned....my other stage 4 cancer... i’ll Be having surgery next week, and hope to prevent any more spreading. Oncologist don’t usually suggest supplements..so you need to be proactive.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

mpbser
Posts: 459
Joined: Wed Apr 19, 2017 11:52 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby mpbser » Sat Mar 03, 2018 1:32 pm

My husband has a Stage IV diagnosis and now after two colon surgeries, two months (4 rounds) CAPEOX, and liver surgery, he is considered NED.

He takes turmeric extract, Omega 3s, vitamin D, modified citrus pectin, echinacea, graviola, olive leaf extract, decaffeinated green tea extract, and other supplements. Also takes cimetidine.

He walks a bit every week but hasn't since the fall due to weather and surgery, but the plan is to get back on track as soon as the temperatures go up.

He is in great spirits and believes he has "beat cancer." His positive attitude probably helps a whole lot.

Lots of luck!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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