10 years since diagnosed

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radnyc
Posts: 436
Joined: Tue Apr 06, 2010 6:32 pm

10 years since diagnosed

Postby radnyc » Tue Jan 28, 2020 9:13 am

It was 10 years ago today when I found out I had cancer after a colonoscopy. What a trip, don’t wish it on anyone. But, things have turned out ok. A combination of good medical care, self care and luck got me to today. Being on the board helped me out a lot, grateful. Best to all in the middle of it right now, stay hopeful and positive, I know that helped me.

Peace
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
CRguy
Posts: 10207
Joined: Sun Feb 10, 2008 6:00 pm

Re: 10 years since diagnosed

Postby CRguy » Tue Jan 28, 2020 1:53 pm

Thanks for sharing your positive message.

Many happy returns moving forward.

Mega Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Vana3
Posts: 39
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: 10 years since diagnosed

Postby Vana3 » Wed Jan 29, 2020 12:13 am

Love hearing stories like yours, thank you for sharing the hope!!!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver
9/19 start Folfox with Avastin continued thru March 2020
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20

WarriorSpouse
Posts: 218
Joined: Tue Aug 16, 2016 9:02 pm

Re: 10 years since diagnosed

Postby WarriorSpouse » Wed Jan 29, 2020 1:53 am

Excellent News! Thank You for sharing.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: 10 years since diagnosed

Postby Ron50 » Wed Jan 29, 2020 6:42 pm

Congratulations on the ten years. Best wishes for a long and cancer free life. Ron. (stage 3c into 6 nodes , just finished year 22 still ca free)
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Punky44
Posts: 441
Joined: Mon Oct 01, 2018 4:29 pm

Re: 10 years since diagnosed

Postby Punky44 » Thu Jan 30, 2020 12:37 am

Thank you for sharing! Love hearing these positive stories!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

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

mymom
Posts: 1279
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: 10 years since diagnosed

Postby mymom » Fri Jan 31, 2020 9:27 am

Wonderful!
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

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juliej
Posts: 3108
Joined: Thu Aug 05, 2010 12:59 pm

Re: 10 years since diagnosed

Postby juliej » Fri Jan 31, 2020 4:58 pm

First of all, congratulations!!! I think you can safely say that cancer is in your rearview mirror!

Second, thank you for your many contributions to this site. Your insightfulness, advice, and support has been invaluable to many, me included!

Third, my biggest wish for you is a long and healthy life! We know better than anyone how to celebrate life's joys. I still remember celebrating my first " “Hey, I went a whole day without thinking about cancer” day! :D :D :D

I am 6 years and 2 months since my last surgery so I'm getting close to that "rearview mirror" view!

All best to you!
Juliej
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

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horizon
Posts: 1542
Joined: Tue Apr 12, 2011 10:10 pm

Re: 10 years since diagnosed

Postby horizon » Sat Feb 01, 2020 10:57 am

Congrats on a huge milestone!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

DarknessEmbraced
Posts: 3472
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 10 years since diagnosed

Postby DarknessEmbraced » Sat Feb 01, 2020 11:19 am

Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: 10 years since diagnosed

Postby I_will_fight » Tue Jul 14, 2020 2:05 am

radnyc wrote:It was 10 years ago today when I found out I had cancer after a colonoscopy. What a trip, don’t wish it on anyone. But, things have turned out ok. A combination of good medical care, self care and luck got me to today. Being on the board helped me out a lot, grateful. Best to all in the middle of it right now, stay hopeful and positive, I know that helped me.

Peace


Peace, Radnyc... very glad for you (and as someone who just started this journey, I am frankly jealous of the result you got.)

Can you please tell me or else point me to the threads where you perhaps describe it what you did in terms of self care?

I am just back at home after surgery, I will be starting the second part of this fight soon and I want to hear from the experts like yourself.

Thanks a lot,

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

radnyc
Posts: 436
Joined: Tue Apr 06, 2010 6:32 pm

Re: 10 years since diagnosed

Postby radnyc » Tue Jul 14, 2020 1:22 pm

Hi JC, pretty much this was my approach:

In my research there are only three things readily available that have shown to be effective in keeping from recurring. VITAMIN D, ASPIRIN and PHYSICAL EXERCISE. This can be checked by doing a PUBMED or google scholar database search.

Vitamin D blood levels have to be optimal, around 5000/iu at least daily. And make sure is D3 not D2 which is quite ineffective for us. This is what most people get prescribed by doctors, D2, it’s so weak that the dosages are like 50000! Ridiculous! Make sure it’s D3!

Aspirin either a daily low dose one or a regular enteric every three days.

Exercise, you don’t have to be an Olympic athlete, but try to get off your arse at least a couple hours daily!

I throw in milk thistle and corioulos mushroom capsules as there is some evidence for them. The main issue is making sure the product quality, where’s it from, who makes it!

Peace
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

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: 10 years since diagnosed

Postby benben » Tue Jul 14, 2020 1:35 pm

Awesome!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: 10 years since diagnosed

Postby I_will_fight » Wed Jul 15, 2020 4:59 pm

radnyc wrote:Hi JC, pretty much this was my approach:

In my research there are only three things readily available that have shown to be effective in keeping from recurring. VITAMIN D, ASPIRIN and PHYSICAL EXERCISE. This can be checked by doing a PUBMED or google scholar database search.

Vitamin D blood levels have to be optimal, around 5000/iu at least daily. And make sure is D3 not D2 which is quite ineffective for us. This is what most people get prescribed by doctors, D2, it’s so weak that the dosages are like 50000! Ridiculous! Make sure it’s D3!

Aspirin either a daily low dose one or a regular enteric every three days.

Exercise, you don’t have to be an Olympic athlete, but try to get off your arse at least a couple hours daily!

I throw in milk thistle and corioulos mushroom capsules as there is some evidence for them. The main issue is making sure the product quality, where’s it from, who makes it!

Peace


Thank you Radnyc

I am already on D3 supplements, 10.000 ui per day, since I had D3 deficit to start with. I might lower this to 5000 in a few weeks.

Did you not add Vitamin K to the D3 supplementation? I am reading too much D3 without adding K can remove too much calcium from your bones and into your blood vessels (I am not saying this is true, just that I've read it)

I will consider low dose aspirin, but then again, I have a mild tinnitus, and it worries me that it might get worse with aspirin, I will read more about it and decide.

Exercise - I am having long walks for now, I am too weak after surgery to do any exercising, but will look into gradually increasing it, May I ask what is what you did? Cardio? High intensity? Lifting?

BR

JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present

hart2hart
Posts: 795
Joined: Wed Nov 23, 2011 10:46 pm

Re: 10 years since diagnosed

Postby hart2hart » Sat Jul 18, 2020 2:53 pm

Yay to Ray! Thanks for all you did for us!
Pete had his HAI out this year, beginning of the year.
2011 looked very bleak.....but we found this group, Dr Kemeny, Dr D’Angelica and asked ALOT of questions! Here’s to you Ray and all who are still in the fight. Don’t ever give up!!


Julie and Pete
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020


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