Update from Rikimaroo

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Rikimaroo
Posts: 153
Joined: Tue Dec 20, 2016 8:48 pm

Update from Rikimaroo

Postby Rikimaroo » Mon Sep 17, 2018 4:59 pm

I have not been on for a little. I finished 6 rounds of FOLFOX on 8/15/2018. My neuropathy still there and its annoying but tolerable. I did a pet scan and a mri on Friday the 7th and got result last Wednesday. Dr. said PET SCAN looks good, nothing. MRI came back with 1.1 cm soft tissue implant in the right deep pelvis, consistent with recurrent/metastatic disease. He said since the PET scan didn't light up it probably isn't anything but he still wants me to do a biopsy. Dr. said that he thinks it Scar Tissue but is not 100% sure. They had a meeting (tumor board) and discussed it and said the next step would to do a biopsy to make sure its not recurrent cancer in the rectum.

As you all know my CRM was positive and I did Chemo hoping it would eliminate any chance of recurrence. I am not sure what this is but I am a little stressed, when I try to keep jovial and positive. Anyone else been in this predicament? Let me know your outcome/stories. One thing is if it comes back positive for cancer, I will need to undergo another resection which will possibly lead to a permanent ileostomy. I had Ileostomy reversal scheduled for October 17th but now if this is a recurrence I will not be able to do it.

I am praying and hoping its nothing. Please pray for me as well and let me know what you guys have experienced, I know everyone's different.

This is the MRI:

TUMOR
* There are new postsurgical changes of proctectomy with coloanal
anastomosis. No distal colonic wall thickening or abnormal enhancement.
* 1.1 x 0.9 cm enhancing soft tissue nodule in the right deep pelvis
(series 18 image 47; series 10 image 19) with mild focal FDG uptake on
PET performed earlier today.

Now I am wondering if this is the rectum or somewhere else. I am going to message my Doctor, I thought it was a possible recurrence in rectum but this might not be, not 100% sure now. ugh1!
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Update from Rikimaroo

Postby Cmac1275 » Mon Sep 17, 2018 5:44 pm

Praying for good results, Rikimaroo.

I just had a biopsy on my left liver performed today. I am 2.5 months out from liver resection and MRI / PET scan show new spots on my liver. Pretty frustrating considering chemo worked well and allowed for resection in the first place. I thought I was on my way to possible NED once we were done with the second resection. But, now we wait and see if this is truly new metastatic tissue or something else.

Regardless, stay positive. I know it’s hard when there’s uncertainty and we don’t have absolute answers. But focus on the fact that the PET scan didn’t light up with metabolic activity. It really could be a false positive of some sort.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

mozart13
Posts: 140
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Update from Rikimaroo

Postby mozart13 » Mon Sep 17, 2018 6:13 pm

Hopefully is just dead /scar tissue as per PET scan, but one could never be for sure.
Last year I was talking to my onco about lymph nodes, she mentioned that very often after chemo nodes shrink, but remain visible, and don’t create problem as they are no longer source of cancer, basically dead.

My prayers and best wishes man.

Good luck!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Lee
Posts: 5741
Joined: Sun Apr 16, 2006 4:09 pm

Re: Update from Rikimaroo

Postby Lee » Mon Sep 17, 2018 7:26 pm

I too will be praying for you. This was a few years back, butt I was told PET scan was the gold standard for possible cancer activity.

All the best,

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!

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

Re: Update from Rikimaroo

Postby AppleTree » Mon Sep 17, 2018 11:33 pm

I had a questionable CAT in July. DR ordered a PET in July...it did not light up! Interestingly enough, the PET shows where I get my monthly Sandostatin shot. Then the DR ordered another PET in October...just to be sure. AND said for me to keep my port for a year. Talk about worrisome actions. October can't get here fast enough. I think it is totally normal to worry about these scans. I get it, I really do. Is it good, questionable, not so Good? Well, at least they keep scanning regularly. Breathe deeply and try to relax. My body does not handle stress well. I am often accused of not doing stressful jobs. Yup. Trying to stay healthy!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Rikimaroo
Posts: 153
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Tue Sep 18, 2018 10:39 am

Thanks for the replies everyone. It helps alot. I spoke to my Onc this morning and he said it is something in the rectum so that cleared things up about it being somewhere else int he pelvic region.

I really hope its nothing, but the Onc did say the pet didn't light up but it wasn't far from the numbers of being concerning. FDG uptake or something like that wasn't enough to make the pet show anything but it was mild fdg update.

Either way I am ready for whatever, just sucks. If it comes back positive I will have to do an APR which means permanent bag. I am OK with this, a bit annoyed but it is what it is.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2

DarknessEmbraced
Posts: 3186
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Update from Rikimaroo

Postby DarknessEmbraced » Tue Sep 18, 2018 11:43 am

I hope everything turns out well for all three of you!*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

Rikimaroo
Posts: 153
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Tue Sep 18, 2018 1:57 pm

It so crazy every time you speak to your doctor you have several questions then when he hangs up and you think about it more you think of more questions.
Now thinking about this the MRI I did in March 2018 was what they used to compare to the MRI I did in September 2018 which showed the soft tissue increase. My thing is I had surgery after this March 2018 MRI, LAR/Liver Resection and wondering if that left scar tissue.

I am hoping that's what it is, but would that have gone away or reduce since april to now? Just reaching and wondering if this is a local recurrence or nothing at all.

Waiting to schedule my biopsy have not heard back from them yet.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2

Rikimaroo
Posts: 153
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Mon Sep 24, 2018 9:08 am

CT Guided Biospy scheduled for tomorrow. I am so nervous but I am ok. If the results come back to where it is cancer and I need an APR then I can live with a permanent bag. Will they transfer the ileostomy to a colostomy? I was wondering if that would stay, because why ignore the entire colon...

I really hope its nothing but scar tissue or something from the surgical site.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2

User avatar
Atoq
Posts: 325
Joined: Wed Oct 25, 2017 9:31 am

Re: Update from Rikimaroo

Postby Atoq » Mon Sep 24, 2018 10:08 am

Good luck for tomorrow! I had a colostomy and the ileostomy on the same site, so it is possible.

Hope it is not cancer.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
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
19.11.18 clear coloscopy

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Update from Rikimaroo

Postby Cmac1275 » Mon Sep 24, 2018 6:21 pm

Checking in and sending positive vibes, prayers your way. Hope the news is good.

For what it’s worth, I had CT guided biopsy last week. I don’t know how different yours will be since it’s a different part of the body. But, I can tell you the procedure was virtually painless and quick. Didn’t really have much soreness afterwards either.

Good luck and let us know how it went.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Rikimaroo
Posts: 153
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Tue Oct 16, 2018 2:13 pm

Biopsy went well not painful at all. Came back negative for cancer :o

Getting ileostomy reverse tomorrow. Looking forward to it but very nervous.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2

Punky44
Posts: 129
Joined: Mon Oct 01, 2018 4:29 pm

Re: Update from Rikimaroo

Postby Punky44 » Tue Oct 16, 2018 2:53 pm

Great news! Good luck with tomorrow’s procedure!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Update from Rikimaroo

Postby prs » Wed Oct 17, 2018 9:53 pm

Hope all is well and wishing you a speedy recovery!
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

User avatar
Atoq
Posts: 325
Joined: Wed Oct 25, 2017 9:31 am

Re: Update from Rikimaroo

Postby Atoq » Thu Oct 18, 2018 4:03 am

Good luck! Nice to get it done.

Best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
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
19.11.18 clear coloscopy


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