It's baaaaaaack!

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MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

It's baaaaaaack!

Postby MikeManess » Wed May 23, 2018 8:12 pm

Had a follow-up MRI and CT scan this past Monday. Since I am stage 4, they scan me every six months - my last scan was in November. After a year and a half of being NED, a new tumor has appeared on my liver. It's in the same location as one of my two previous liver tumors was removed. They did a wedge removal, and in one of the places where the liver regrew is where the new growth was found. It's poorly defined in the scans, so they cannot tell the size of it.

So .. it looks like another period of chemo and surgery is coming up. I'm to meet with my surgical oncologist within the next two weeks, and meet with my medical oncologist after that. By then, they'll have a beter plan of attack.

Just gotta hang in here for a few more years until newer treatments come up. Hope like heck that we can eventually knock this sucker out for good. And hoping that I haven't become resistant to chemo!
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: It's baaaaaaack!

Postby stu » Thu May 24, 2018 1:50 am

Hi Sorry to hear you have more to deal with . It certainly can take a few steps to NED in a stage 4 situation . But just to encourage you , once the micro disease had “ shown its face” and was dealt with , my mum has scanned clear for seven years in her liver . 73% of her liver was removed at one point . Chemo kept working for her .
All the very best and hang on in there , quite a lot of people have experienced a few years of treatment then it settles .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: It's baaaaaaack!

Postby mpbser » Thu May 24, 2018 5:29 am

I just read this post after writing about good news my husband got after a scan he had on Tuesday. This scares me to read because I can't imagine him going through more chemo and another surgery. You sound like you are taking the news very well. I had also written about the power of positivity - which you have. That's great and really does help. Hang in there!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It's baaaaaaack!

Postby DarknessEmbraced » Thu May 24, 2018 6:49 am

I'm sorry your cancer came back and hope your chemo goes well!*hugs*
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! :)

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: It's baaaaaaack!

Postby orlar » Thu May 24, 2018 10:05 pm

Disappointing news to say the least. Trying not to be clique, but you've been down this road before and what's involved. Hang tough and I hope whatever treatment plan you decide on kicks the big "C" to the curb for the duration! Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: It's baaaaaaack!

Postby mymom » Fri Jun 01, 2018 8:03 am

Hang in there. My mom has had several relapses but is currently in her longest remission about 2 years, 7 months. She had several rounds of chemo. Never became resistent.
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
6/22- small spot liver again, ablation oct 2023

User avatar
MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: It's baaaaaaack!

Postby MikeManess » Fri Jun 01, 2018 5:38 pm

I met with my surgeon today. There are two ways to go with this .. chemo, surgery, then more chemo. Or surgery up front, and chemo. He prefers the chemo, <month break> surgery <continue break for recovery>, resume chemo route. The Tumor Board will meet next Wednesday and come to a decision. Whichever way they decide, they're jumping all over this. The tumor in the liver has already grown to 1.5 inches (3.3cm) since my last scan on November - it's growing and growing fast. The surgery this time will not be robotic, but open .. taking about 1/3rd of my liver. ICU, longer hospital stay, longer recovery time. That's okay, I can deal with that (don't want to, but no real choice).

Biggest concern is if I should take disability retirement or continue working. I'm 62 and had planned on waiting for full retirement, but that's 4 years away (66 for my age). My employer is great and will keep me on the payroll while recovering from surgery, but really - do any of us want to work until we die? To retire, I'll have to downsize home so I can have a mortgage-free house with sales proceeds (and maybe a bit from 401K). Not sure what I want to do, yet, but this cancer return is having me considering getting my affairs in order just in case. Ever since my initial diagnosis I believed that I would be okay. Today, I'm not so certain that it's all sunshine and daffodils.

The meeting with the surgeon is making me consider options ... not only for me, but for my wife as well. What's best for her if I should assume room temperature? Big questions to consider.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: It's baaaaaaack!

Postby mpbser » Mon Jun 04, 2018 4:02 am

Good luck making those big decisions!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: It's baaaaaaack!

Postby aja1121 » Mon Jun 04, 2018 10:55 am

This has nothing to do with colon cancer, but I encourage you to take early retirement if it's an option for you. My dad was unsure if he should stop working at 62 or keep at it for a few more years in order to receive more Social Security. He decided to go for it and retired shortly after his 62nd birthday last May. He was happier and more relaxed than I'd ever seen him, and his health was good, so we were all anticipating that he'd enjoy many years as a retiree. In September, he died suddenly. While I'm grateful his last few months were so wonderful, it makes me sad that he worked so incredibly hard all his life only to have the "fun part" taken away from him so soon. I miss him like crazy. I guess my point is, time is precious. If you can comfortably retire now, I hope you'll strongly consider it.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

User avatar
MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: It's baaaaaaack!

Postby MikeManess » Thu Jun 07, 2018 6:13 pm

My oncological surgeon's office called me today. They're going to do 4-6 rounds of chemo, then surgery, then more chemo after that. For my last liver met, they did it via robotic surgery and I was home in 2 days. This time, they'll take about 1/3rd of my liver. He said he will actually remove my liver and ultrasound the heck out of it. If he finds anything, they'll deal with it then. I'll spend 2 days or so in ICU, 5-7 more days in the hospital (probably drugged all to heck) and then be discharged. Recovery time will be much longer than last time.

Hate like heck to be having surgery and chemo again, but hate even more the alternative. So I've gotta go through with it - no choice. Going from NED to having a 3.3cm liver tumor in 12 months is quite a shock. I've been here, done that, bought the t-shirt and already wore it out, so I know what to expect. Just trying to hang on until more and better treatments come out.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: It's baaaaaaack!

Postby henry123 » Thu Jun 07, 2018 9:00 pm

Mike,
I would advise being on rolls till you are out of woods with at least current episode.
Wait till your recovery from surgeries and chemos to make your decision.
You have backing of a good employer. Keep that.
Best of luck and stay strong.
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
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: It's baaaaaaack!

Postby Basil » Fri Jun 08, 2018 7:02 pm

MikeManess wrote:My oncological surgeon's office called me today. They're going to do 4-6 rounds of chemo, then surgery, then more chemo after that. For my last liver met, they did it via robotic surgery and I was home in 2 days. This time, they'll take about 1/3rd of my liver. He said he will actually remove my liver and ultrasound the heck out of it. If he finds anything, they'll deal with it then. I'll spend 2 days or so in ICU, 5-7 more days in the hospital (probably drugged all to heck) and then be discharged. Recovery time will be much longer than last time.

Hate like heck to be having surgery and chemo again, but hate even more the alternative. So I've gotta go through with it - no choice. Going from NED to having a 3.3cm liver tumor in 12 months is quite a shock. I've been here, done that, bought the t-shirt and already wore it out, so I know what to expect. Just trying to hang on until more and better treatments come out.


Sucks to have to go through. I admire your attitude, though. My path has been relatively easy but I’ve had the same outlook. Whatever it is, “don’t want to do it but will. No other choice.” Soldier on.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: It's baaaaaaack!

Postby SpringerSpanielMommy » Fri Jun 08, 2018 7:16 pm

I’m so sorry it is back and you will be going through more treatments. It sounds like you have a really good team of doctors and what a comfort to have an employer that will work with you. I’ll be praying for you.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: It's baaaaaaack!

Postby lovelife789 » Tue Jun 12, 2018 8:12 am

MikeManess wrote:My oncological surgeon's office called me today. They're going to do 4-6 rounds of chemo, then surgery, then more chemo after that. For my last liver met, they did it via robotic surgery and I was home in 2 days. This time, they'll take about 1/3rd of my liver. He said he will actually remove my liver and ultrasound the heck out of it. If he finds anything, they'll deal with it then. I'll spend 2 days or so in ICU, 5-7 more days in the hospital (probably drugged all to heck) and then be discharged. Recovery time will be much longer than last time.

Hate like heck to be having surgery and chemo again, but hate even more the alternative. So I've gotta go through with it - no choice. Going from NED to having a 3.3cm liver tumor in 12 months is quite a shock. I've been here, done that, bought the t-shirt and already wore it out, so I know what to expect. Just trying to hang on until more and better treatments come out.


I'm so sorry it has come back... I pray for your speedy recovery. I have undergone two open surgeries, both for removing a significant part of the liver, one out of the two I also had my gall bladder and part of colon removed. The recovery was rather smooth, I'm sure it will be for you. After surgery they gave me a pain killer pump, so i could manage suitable dosage. I only used 2-3 pumps for each surgery, so don't worry, it will be fine!!! Force be with you!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot


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