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

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lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:19 am

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.


You are very brave. I hope this is the last milestone you hit before getting to forever NED!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:21 am

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.


Do you have the quarterly scan now or 1/2 year or not yet? :?: I am very unsure about when do they switch you from quarterly to twice a year....
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:23 am

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.


THANK YOU for sharing!!!

Did you Onc say anything about it? I just knewwww for sure my Onc is not going to be supportive. Even on baby Aspirin he was not particularly happy about it....so I'm making my own "supplement cocktail" :P
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:32 am

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.


Thanks for the reminder, my platelets are fine now that I have completed the FOLFOX regime. wow 6 miles is a lot and you do with when you were doing 5FU! You have all my respect! I know a couple of people keep exercising when they are doing chemo, I really admire them. I couldn't do it mostly because I was experiencing fatigue a lot.

I am also going through or trying to deal with survivor's guilt now for I know a few folks with CRC are probably not gonna make it... How do you guys cope with it? :?: :(
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:33 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.



Thank you!! I'm so sorry to know your melanoma has returned. You are in my prayers! Fight hard against this monster!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 12:35 am

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.


mpbser,

I have been reading your posts since your very first. I'm very happy for your husband and his current status!!!! We will all stay in NEDville for a long time I pray!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

User avatar
LeonW
Posts: 343
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

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

Postby LeonW » Mon Mar 05, 2018 7:06 am

re Scan schedule, lovelife789 wrote: . . am very unsure about when do they switch you from quarterly to twice a year

I did the quarterly ones for a year (4x in 2014). Been on half-yearly ones since (6x in 2015-2016-2017) with the next one set for May and probably one in Nov 2018 (5 yr after surgery). Thereafter annual ???
Dec 2012 - Colon Cancer MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen 2/26 nodes (IVa T3N1bM1a) MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) pCR- cancer gone
2014/15 - recovery/benign polyp
Apr 2016 - new town, new life
clean CTs and (1.3-1.4) CEAs: 4x2014, 7x2015-2018; 2 benign polyps June 2018
June 12, 2018: 5-yr survivor

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 05, 2018 8:46 am

I did the quarterly ones for a year (4x in 2014). Been on half-yearly ones since (6x in 2015-2016-2017) with the next one set for May and probably one in Nov 2018 (5 yr after surgery).


I heard people do quarterly scans in the first two years, so I guess there are exceptions.... My doctor only asked me to do MRIs twice and CT scans twice in the first 2 years to lower radiation for my body. I wonder if there's anybody only doing quarterly scans for one year? :lol:
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

User avatar
Robino1
Posts: 454
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Mon Mar 05, 2018 8:53 am

Exercising actually helps combat fatigue. I pushed myself in the beginning to just get up and walk! After a couple of rounds of chemo, I don't get that fatigue like in the beginning. I need to get back into that walking routine as I've gotten lazy the last couple of months.

Time to dust off the bike too!!! ;)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

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

Postby Brearmstrong » Mon Mar 05, 2018 7:45 pm

Anyone in long term NED with Kras mutation? Feeling a little hopeless as I never get any good news. I know it means poor outcomes but hoping some survivor stories?
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. June 18 start xeloda 3000mg/day

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 » Tue Mar 06, 2018 7:30 pm

Yes at first I was told that. Dr. put me on folfox with avastin (11 infusions) and I responded amazingly! The tumors shrank so much that my liver surgeon only had to take 20% of my liver. My colorectal surgeon said that if the gi doc hadn't marked the mass in my colon he wouldn't have seen it!

I wish you all the best!
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

mpbser
Posts: 393
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Mar 08, 2018 5:46 pm

"I am also going through or trying to deal with survivor's guilt now for I know a few folks with CRC are probably not gonna make it... How do you guys cope with it?"

This is a really tough one. My husband and I have three people in our lives who have cancer: two with stage IV colon cancer and one with stage IV prostate cancer. One of those with CC was told he had no chance of survival but actually was able to get his liver to be resectable. He had his surgery lately and achieved negative margins. At this stage, he is NED - a 180 degree turn in a very short period of time. He is someone my husband can relate to (to a certain extent of course) and who can relate to my husband. Now that he's doing well, my husband feels comfortable sharing his success story with him.

The one with prostate cancer went through a "nothing left we can do, start making arrangements" situation to a new treatment protocol at MSK after which he thought he was NED. However, he's now been avoiding my husband and seems to be very depressed, as if he has received bad news about recurrence. My husband is now tiptoeing around him, not knowing what he should say, if anything at all.

The third is a friend of my aunt's who has been battling CC with metastasis to the liver (same as husband) for close to five years. She has been on the above-described rollercoasters herself a number of times. I actually just got a text today from my aunt that she has been in the hospital the past two days and not doing well. Yesterday, the doctors gave chemo directly into the tumor on her liver (not sure of the exact procedure) and she had a bad reaction which kept her in the hospital overnight. Earlier today, they did some radiofrequency ablation into the tumor. Her blood pressure has been skyrocketing. I spoke with my aunt right after I read these recent posts in this thread, before writing this. My aunt conveyed that her friend expressed her happiness for my husband's NED-ville. It was extremely awkward responding.

I just realized I am not providing any advice or tips. I'm sorry I don't have any. I wish I did!
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

mymom
Posts: 1246
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

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

Postby mymom » Mon Mar 12, 2018 3:51 pm

Hi- My mom is a patient at MSKCC Dr. Kemeny. She has the HAI pump.

Diagnosed may 2011
She has had two liver resections and a liver ablation since diagnosis, chemo after each
Several reoccurrances and several NED remissions
Currently, in her longest remission....23 months
Always contained in liver. Never more then one or two spots at a time.

think positive
Lisa
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 12, 2018 10:38 pm

I just realized I am not providing any advice or tips. I'm sorry I don't have any. I wish I did!


:D :D :D No worries, I understand. Sharing, which is what you did, can be therapeutic too! Bravo to your husband btw!
:wink: :wink:
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Mon Mar 12, 2018 10:47 pm

Diagnosed may 2011
She has had two liver resections and a liver ablation since diagnosis, chemo after each
Several reoccurrances and several NED remissions
Currently, in her longest remission....23 months
Always contained in liver. Never more then one or two spots at a time.


Thanks for your reply! I supposed....from reading what your wrote, a liver can be resected many times I supposed? I wonder if there's a ceiling on the number of liver resection :shock: :shock: :? :? :? . I had two resections already because the tumors were too big to be ablated....

Wow so that put together 7 years with on and off remission huh....that's quite impressive. I don't know if it's just me or other people share my thoughts too that I can do many rounds of surgeries...chemo is just very hard to take... how was it with your mother with rounds of chemo at different times? :?:
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI


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