Stage 4 to NED- Please tell us

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deebashari
Posts: 16
Joined: Wed Feb 07, 2018 2:51 am

Re: Stage 4 to NED- Please tell us

Postby deebashari » Mon Oct 29, 2018 9:33 pm

Hello there! So good to hear your doing well. Just curious were you MSS? I thought Keytruda isn’t provided for anyone non MSI high? Also, I’m dealing with my moms case. My mom has intermidiate tumor burden is that the he same as moderate? I’d love your input. Sending you warm wishes.


Jack&KatiesMommy wrote:I have been at this for over seven year. I was a BAD stage IV (my CEA was over 2,600 when diagnosed in 2011) and my liver was FULL of cancer in every lobe and there were suspicious nodules in my lungs. My children were 4 and 8...and I was the only working parent...who also supported my Mom. I got lots and lots of opinions...and saw many doctors. Dr. Kemeny at MSKCC saved my life with an HAI pump to my liver. I had lots and lots of chemo during the whole process and 11 RFA's to lung mets as well as a liver resection and resection of one lobe of my left lung. I have most recently been treated by another doctor (you have to find the right treatments and doctors for yourself...be your own advocate) and I am receiving Keytruda (immunotherapy off-label.) As of today, my CEA is 1.0 and I am NED. There is hope. There is hope!
Cynthia

mymom
Posts: 1269
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Stage 4 to NED- Please tell us

Postby mymom » Mon Oct 29, 2018 9:42 pm

Hello. My mom was diagnosed at Stage 4 with a liver met in May 2011. After a liver resection and chemo she was NED for almost a year. It returned. Another liver resection and more chemo. Several more bouts of NED and it returning to the liver, more chemo, an ablation in October 2015. Guess what? Today she had another clean scan. She has been NED for three years. October 21 was exactly three years NED because her ablation was October 21 2015. My mom at 72 has more energy than me some days. Thinking of you.

Oh and my
Mom was diagnosed may 2012 with stage 1 breast. Still clean with that as well. Seperate cancer.
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-current NED

Gloriamazz
Posts: 60
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Stage 4 to NED- Please tell us

Postby Gloriamazz » Sat May 04, 2019 10:24 pm

I understand. I have same news as you do. In August had a LAR and Barbie butt. Encouraged to go this route with no hope of reconnect didn’t need Chemo or radiation.

Feb 6 had a post surgery at scan every organ was fine no mention of any new lesions or recurrences.

Never got rid of the pain it was uncomfortable then last week went to the store and came home very pale and tired and hurt more than usual along with a pinchy feeling. Had CT now there is talk of a tumor that was compared with the tumor of February that there was no mention. Apparently it was too small for radiologist to mention on paper until now

Now to my shock I have a 1.8 x 1.8 hyper dense leis ion on my pelvis. I thought I wasdoing fine. Wednesday I go for Biopsy a total shock. Prayers and hugs to you I feel very upset with this too.
Last edited by Gloriamazz on Wed May 29, 2019 12:28 pm, edited 1 time in total.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

Punky44
Posts: 322
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 4 to NED- Please tell us

Postby Punky44 » Sun May 05, 2019 4:42 pm

Spazzyjanet, how are you doing? I think we literally joined here the same week in October.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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henry123
Posts: 188
Joined: Sun Oct 08, 2017 3:25 am

Re: Stage 4 to NED- Please tell us

Postby henry123 » Tue May 07, 2019 5:12 pm

I was put on palliative care in January 2017 and was told by my oncologist that 90% I have 3 -6 months.
I asked about 10% . What do they do different.
He said stop joking, we don't know about that but some survive for whatever reason.
I was worried sick about my kids, wife , old parents .
Many a time things work out.
Just pray, grin and keep kicking . Accept that whatever happens is for best.
Best wishes.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

User avatar
henry123
Posts: 188
Joined: Sun Oct 08, 2017 3:25 am

Re: Stage 4 to NED- Please tell us

Postby henry123 » Tue May 07, 2019 5:15 pm

mymom wrote:Hello. My mom was diagnosed at Stage 4 with a liver met in May 2011. After a liver resection and chemo she was NED for almost a year. It returned. Another liver resection and more chemo. Several more bouts of NED and it returning to the liver, more chemo, an ablation in October 2015. Guess what? Today she had another clean scan. She has been NED for three years. October 21 was exactly three years NED because her ablation was October 21 2015. My mom at 72 has more energy than me some days. Thinking of you.

Oh and my
Mom was diagnosed may 2012 with stage 1 breast. Still clean with that as well. Seperate cancer.


Hi,
Have you got genetic testing done for your Mom.
If I understand correctly, that's three times she had cancer .
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

teacher2017
Posts: 241
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 4 to NED- Please tell us

Postby teacher2017 » Fri May 10, 2019 7:06 pm

Ok I never thought I’d post a post of hope but...I was blind sighted when stage 3 turned to stage 4 after 12 rounds of folfox at the first three month scan. A two cent met was found on m liver. Last Sept 2018 I had a lapro live resection and have been NED since. Next scan in June. Praying too. But I feel okay and am working full time. I have my crappy days but I think focusing on living and being a mom is more important than letting this disease take over my world. I read a lot. There are many cases of people who survive 10-15 years or longer out there with little hope. Why can’t that be us???? Hang in there. Never give up. Ever.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

mymom
Posts: 1269
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Stage 4 to NED- Please tell us

Postby mymom » Mon May 13, 2019 7:02 pm

Hi Henry- just twice. Colon and breast. She had another clean scan today.
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-current NED

teacher2017
Posts: 241
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 4 to NED- Please tell us

Postby teacher2017 » Tue May 14, 2019 7:00 pm

This is wonderful news! I’ve been following this post. Just when I think life is doom and gloom, I read good news. Thank you for the update.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

ranger
Posts: 339
Joined: Sat Nov 14, 2009 2:02 pm
Facebook Username: cancerIsSOfunny
Contact:

Re: Stage 4 to NED- Please tell us

Postby ranger » Tue May 14, 2019 11:57 pm

Coming up on 10 years NED here.
Chemo at Georgetown Lombardi. Liver resection at John's Hopkins. Adjuvant chemo, and done. No major setbacks during my year of treatment. Nutritionist helped me keep from fading away, tai chi instructor provided restorative Sundays. My kids were brave, and seemed to believe my assurances that I had a good chance of surviving. Sometimes I cried and often I laughed. I think I spent a lot of time in bed or on the couch. Atavan helped with anxiety but it's addictive, so maybe meditation or mushrooms are actually safer.
To this day, my oncologist agrees that we don't know why I got cancer and can't tell for sure why I regained my health.
But I'm still here! Cancer can't kill everybody, so try as hard as you can to win one for the team like I did.
yours,
Amy
@cancerIsSoFunny
colon resection 3/09
liver resection and takedown 8/09
11 rounds of folfax, avastin. plus AM655 or placebo, completed jan 2010
hernia repair 3/11
http://cancerissofunny.blogspot.com/
https://m.facebook.com/Cancer-is-SO-fun ... 100303900/
@cancerissofunny
age 68, never thought I'd make it. happy.
NED a long time.
Essential Thrombocytosis, monitoring
still here.


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