NEW-Need some positivity here.

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DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Aug 10, 2018 11:09 am

teacher,

when you are feeling your lowest, look up 'bomberbob' and his posts...poignant to say the least.

as for me, today i almost drowned on a dive, almost. i would like to say God gave me a metaphor on my cancer and survivorship.

so today, i was diving the Manassir wreck in Muscat, Oman. 100ft down, low visibility, and i was caught near the captain's quaters inside the ship. think of yourself at the base of the Statue of Liberty looking up, that's how far I was down.

For a moment, I had a rush of claustrophobia hit me and I almost panicked...but i quickly regained my composure and forced myself to breath deep, close my eyes, and figure out the problem.

needless to say, i didn't drown. however, i did burn up half of my air tank in 5 mins, which should have otherwise kept me down for 60 mins.

i just had a glass of wine and smoked a cigar in celebration of life, of myself. what i learned is life is what we have no matter what and it will surely end one day, but we need to always fight for what we have...

keep fighting, teacher...never quit or give up on yourself...no matter what!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Aug 12, 2018 4:18 am

Thank you DonutHead,
This has been the hardest weekend. No answer until tomorrow. It’s eating me up. How the hell does this happen so fast? Anyway, I’m so happy that you are okay - what a terrifying experience. Yes appreciate every day. Cancer does that. But it is so unfair that others don’t have to live this way. In fear. That’s what I feel like though- like I’m drowning. Trying to keep a happy face for my kids. I didn’t tell them anything this time. I will definitely google that person you suggested. I could use the motivation. Why does none of this make sense? How can there be no signs? Why bother with all that bloodwork and testing then? Dr said that stage 4 cc in liver was curable. I think it means I’m a ticking time bomb. So this is my life forever until it takes me? Chemo and surgeries? I’m so done with this. I will keep you posted.
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

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Aug 13, 2018 9:52 am

Stage 4 - that’s all folks. I’m sick. 1cm spot needs to come out. She thinks it’s only that. I asked if I’m dead and buried and she said no no. But I’m so scared now. Thank you all for your advice and well wishes.
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

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Mon Aug 13, 2018 1:12 pm

I am so sorry. I know this is devastating news. But I do know that many here have had liver mets removed and have been NED for a long time. Prayers.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Mon Aug 13, 2018 3:32 pm

i am devestated though not hopeless. that's certainly not all there is to your fight, don't go throwing in the towel now! you beat it before and will do it again, this time for good. i will be here for through it all, just like we communicated the first time and brought each other through. as winston churchill once said in his island nation's plight alone against the nazis...never, Never, NEVER surrender!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: NEW-Need some positivity here.

Postby ValZen » Tue Aug 14, 2018 4:58 pm

Throughout my own treatment journey, I was surprised at how many people had stories of friends and family members who had colorectal cancer and also had a lung or liver met and went on to full recovery. I've read quite a few stories on here as well...people finishing up treatment and having to going back to have a met taken care of, then going on their way, NED thereafter. I was reading through your posts and you have such a great support network here. I admire your honesty, strength and determination. You're in my prayers for peace right now. It's so hard getting news like you did, but as I was told once on here...you have every reason to be hopeful for a full recovery!

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Aug 14, 2018 8:30 pm

teacher,

new day! hope you are past the initial shock and allowed yourself to move forward. so, what's the plan? i have been reading up and agree with every recent post, especially the last one by ValZen regarding your outlook. here we are, all survivors. your journey is far from done!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Tue Aug 14, 2018 11:43 pm

teacher2017 wrote:Stage 4 - that’s all folks. I’m sick. 1cm spot needs to come out. She thinks it’s only that. I asked if I’m dead and buried and she said no no. But I’m so scared now. Thank you all for your advice and well wishes.


I just want to add my well wishes and tell you that there is SO much success with liver treatment especially when there is a single spot and it's quite small.

Please don't go to the dark side, you are going to get treated and monitored and make it through all of this. I know it's emotionally chaotic right now but everyone here is going to support you and help you deal with navigating your feelings. The doctors do their job and we do ours offering our care and support and friendship.

I have more liver mets than I care to count and am consulting with Stanford now to get serious with them since chemo stopped working. I have read a lot of information that they gave me and Youtubes that I was required to view before my appointment and I can't even begin to tell you how much hope it has given me.

I know that like for all of us, your dark cloud never goes away but it can fade into the background as time passes and NED years add up. I am wishing you strength and sending you my most positive thoughts for success and a big hug too!

Take care,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Aug 15, 2018 6:11 am

Thank you all! I think I’ve accepted it. Ok now what? That’s my attitude. I feel very inconvenienced here. IT MESSES WITH WORK and with MY FAMILY. I feel physically fine- I have a heel spur And some excema that’s bothering me only. Go figure! I meet with a surgeon on Friday. I will keep u all posted. But if it’s only one, and we all know that these scans are BS, that we are going for cure. I’m not playing- as if I was not serious before. I want some serious drugs-chemo, whatever. Maybe a clinical trial? Who knows. If it’s offered I’m taking it!

I have been reading like crazy. I heard of someone who actually had surgery and it was a dead tumor from Chemo and incapsulated by calcium. I wish that were me. But I wonder if this was there at initial dx. I never had an MRI. But if it grew after chemo or during chemo, I don’t know if it actually worked and kept it small??? No idea. Any insight is helpful here.
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

Beckster
Posts: 283
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Wed Aug 15, 2018 8:19 am

teacher2017 wrote:Stage 4 - that’s all folks. I’m sick. 1cm spot needs to come out. She thinks it’s only that. I asked if I’m dead and buried and she said no no. But I’m so scared now. Thank you all for your advice and well wishes.



I am so sorry to hear this happened.....you might want to look into proton therapy for liver mets. No chemo and minimal side effects. I know University of Penn has one but if I am not mistaken, you are near Sloan Kettering. I would look into every alternative. I know someone that just had it done 3 months ago at Penn.

https://www.oncolink.org/conferences/co ... ver-tumors
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Wed Aug 15, 2018 11:45 am

I am sorry to read that, I hope it can be operated and forgotten. It is really annoying to not be finished yet, but it doesn’t need to be a long delay to NEDville.

A big hug

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Wed Aug 15, 2018 2:42 pm

I'm so sorry to read about your liver met. This is a set back, butt you can get to NEDville again. When I was diagnosed many years ago, I too worried about mets. I would come to understand for many people it did happen. Butt the good news, they had the surgery to remove it and they were NED from that time on. It's almost like it was there all along, just to small to be seen. So again, think of this as a set back only.

Know in your heart, you will beat this.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Aug 17, 2018 11:05 am

Thank you all.

Met with the surgeon. He said I had two options- 1. Laparoscopically 2. Open surgery and put in a HAI pump.

Any opinions?
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

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Aug 25, 2018 1:11 pm

We are all here to help! You have friends you have never known and I am one of them!

I suggest lap, less invasive, quicker recovery. You need that to stay focused, healthy, and not succumb to some complication going the more invasive route.

As for the pump, I suggest going easy on the liver...3 years is a long committment and hard on the body....i think you only have the one met and that if there were more, they would have materialized. Now, i am no doctor, but it takes time for these things to grow and form, and if that is all you had, i think deal with it and it alone for now.

You put yourself through the whole regimen of chemo the first go around....doctor’s will always give you the worse case scenrio as the best news. It’s better than just sayin, “well, i just don’t know.” No doctor wants to say that to a patient and they know you don’t want to hear it, so bad news is good news.

all my best to you and your family. my family is praying for you and your’s! Keep fighting and keep your spirits up!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Aug 28, 2018 4:49 pm

DonutHead wrote:We are all here to help! You have friends you have never known and I am one of them!

I suggest lap, less invasive, quicker recovery. You need that to stay focused, healthy, and not succumb to some complication going the more invasive route.

As for the pump, I suggest going easy on the liver...3 years is a long committment and hard on the body....i think you only have the one met and that if there were more, they would have materialized. Now, i am no doctor, but it takes time for these things to grow and form, and if that is all you had, i think deal with it and it alone for now.

You put yourself through the whole regimen of chemo the first go around....doctor’s will always give you the worse case scenrio as the best news. It’s better than just sayin, “well, i just don’t know.” No doctor wants to say that to a patient and they know you don’t want to hear it, so bad news is good news.

all my best to you and your family. my family is praying for you and your’s! Keep fighting and keep your spirits up!


Thanks you- I agree with you too. I will let you know wha to learn at the presurgery meeting. I will also email you. Thanks again! For your kind words and especially your friendship. I’ve decided to invite you to my 80th birthday party and all the rest of you on this thread. Bring wine and wear an outrageous hat.
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


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