3 Year NED - Stage 4

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radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

3 Year NED - Stage 4

Postby radnyc » Wed Sep 18, 2013 1:02 pm

I've been lurking here since April '10, at first looking for success stories. Along the way there were a handful of long term remissions or cures, but lots more bad news than good, makes it hard to come back. I know that the good news always gave me hope, so I'm hoping my story gives someone hope as well.
Persistent constipation over a few years finally lead to bloody stool and diagnoses. Surgery and chemotherapy. Lots of anxiety and discomfort. As of Friday 9/13, 3 years NED. I feel good and looking forward to many more healthy days. Good doctors and good treatments, faith, exercise, diet, all of these things have contributed to my success so far.
I also tried acupuncture and meditation during chemo, and I believe they really helped in making it a bit easier. Chemo is something I would not like to do again, ever.

Supplements I'm taking, and have taken since beginning of journey:

Vitamin D3 5000/mg
Milk Thistle
PSK Mushroom Science
Aspirin, regular dose every other day

I consulted with Integrative Doc at MSKCC, and she said it would be fine to do this. I think it's helped me, even if it just adds a small percentage to the survival numbers, I'll take that.

I wish everybody the best and strength to keep on living. This is not easy for any of us. Please feel free to PM me if you have any questions.

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: 3 Year NED - Stage 4

Postby mom_2_3 » Wed Sep 18, 2013 1:29 pm

Al,

I am so happy to read your news! How exciting! Three years is a huge milestone. I am also an HAI "kid." Dr. K has many patients on this board, many of whom have been NED for a significant period of time.

May you continue in NED forever,
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
10 years NED.

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: 3 Year NED - Stage 4

Postby radnyc » Wed Sep 18, 2013 1:40 pm

Amy, you were one of my stories of hope, I always wanted follow in your footsteps in the treatment. Although, I'm not one of Dr. K's patients, the Onc I see at MSKCC follows her protocol to the letter. He even consulted with her on a couple of occasions to make sure my liver markers were ok. My next big step is getting the pump removed, in two years.

A
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 3 Year NED - Stage 4

Postby juliej » Wed Sep 18, 2013 1:54 pm

Congratulations, Al! We all need to hear good news so thanks for brightening our day. :D I'm an HAI pump girl too. I'm 1 year, 7 months NED. Wishing you many happy NED years and years to come!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

anitaw
Posts: 35
Joined: Wed Jan 16, 2013 9:06 pm

Re: 3 Year NED - Stage 4

Postby anitaw » Wed Sep 18, 2013 4:31 pm

Congratulations to all of you. Thank you for taking the time to post. I just had the pump implanted in June at MSKCC and I'm hoping that I too can get to resection. Each one of your stories gives me inspiration. When I feel down, I think of all the people on this board who were stage IV and are now NED. It helps me to boost myself up and keep pushing forward. I wish you all the best and thank you again for posting.
DX 2/12 Stage IV CC, mets to liver
3/12 - 12/12 Folfox + Avastin
2/13 - 5/13 Folfuri + Vectibix
HAI Pump - 6/13
2 stg liver res - 11/13 & 4/14
Clear scans: 5/14, 8/14, 9/14
1/15 new met in liver, ablated 6/15
11/15 - new met in liver, surgery 1/16, start Folfuri again
2/16 Scan: NED! Every day is a gift. 6/16 new mets, 2 lymph nodes
3/18 Lymph nodes resection, NED, Folfox again

User avatar
horizon
Posts: 1608
Joined: Tue Apr 12, 2011 10:10 pm

Re: 3 Year NED - Stage 4

Postby horizon » Sun Sep 22, 2013 8:17 pm

That's great. Here's to 4 years.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: 3 Year NED - Stage 4

Postby Bev G » Mon Sep 23, 2013 8:33 pm

Hello Al,

Thank you for sharing your wonderful and excellent news with all of us. You're right...stage IV is no picnic. Your story gives hope to many and sure made me smile. I wish you NEDness forever.

Hugs to you, and a high five as well!

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Julie YW
Posts: 170
Joined: Tue Aug 27, 2013 2:25 am
Facebook Username: Julie.yip-williams

Re: 3 Year NED - Stage 4

Postby Julie YW » Mon Sep 23, 2013 9:18 pm

I love to hear good news! So happy for you and I hope for your continued NED status.

Julie
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/


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