Surgery Monday 7th 2019 Salvage Resection Surgery

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Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Fri Oct 04, 2019 11:31 pm

Well my insurance finally approved the procedure for Cleveland Clinic Ohio. The surgery is a resection of the left seminal vesicle where the lesion has recurred. SUV uptake at 9.1 with this week pet scan, so definitely malignancy.

I also asked for Colostomy bag back, looking forward to take control of my life back. There was an indication of a possible metastatic recurrence on liver, 10mm, SUVmax 5.5, not sure yet if it is really anything, but we will deal with that after surgery. Possibly an MRI to review liver spot more clearly. If anything possible ablation, but that's just my thoughts, definitely some more rounds of chemo most likely :( but hopefully almost done with this whole journey.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

Punky44
Posts: 383
Joined: Mon Oct 01, 2018 4:29 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Punky44 » Sat Oct 05, 2019 1:13 am

I’m glad you have a plan in place and that insurance finally got their act together. Onward!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
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
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

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

DarknessEmbraced
Posts: 3369
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby DarknessEmbraced » Sat Oct 05, 2019 9:33 am

I'm glad you have a plan and I hope your surgery 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

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby NHMike » Sat Oct 05, 2019 4:36 pm

Good to see a route to get rid of these things. I completely understand going to the colostomy.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Sun Oct 20, 2019 9:01 am

Hello Folks,

It's been almost 2 weeks since surgery. Everything went excellent per the doctor. I woke up with catheter and stents in my penis (UGH!!) a mushroom plug in my butt, and they stabbed me on the side for a drain. So the first day I was attached to everything. The next day I walked a little with all these things plugged into me, fun stuff. I was discharged 6 days later. Things overall has been good and pain has been controlled greatly. Everytime I feel some pain I take a ibuprofen 800mg, which helps, I also have a slight annoying cough that comes around this time, so I take delsym which works well. I have been getting up almost every hour to pee, so thats been frustrating, last night was the first time I didn't get up as much. Colostomy is no problem, easy to change bag, easy to manage although its not super active like the Ileostomy, which I am not use to so I kind of get worried its not working LOL....Althought its been two weeks only, I don't think everything is 100% just yet.

The pathology came back 0/7 LN all negative. The Left Seminal Vesicle came back adenocarcinoma, so they got that out and cleaned the left pelvic sidewall. Meeting with Onc on Wednesday see what if anything should we do.

Before my surgery we decided to excite our life some more with a new pup. A Siberian Husky. We always wanted one, although Florida is a bit hot, he is doing great and we keep him cool. I wanted to share my channel with you guys on Youtube, if that's ok.

https://www.youtube.com/channel/UCjza2k ... subscriber

The two girls in the videos are my daughters and my wife recording. I might be in the first video.

I would love for you guys to subscribe and support us (not monetarily, just watching the videos)....My wife has got really good at editing them.

Anyways, I am so happy to be able to not worry about running to the bathroom anymore, or unpredictable pooping. Getting staples out tomorrow. As always the anxiety but I have done it before and its not bad, but still anxiety.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

stu
Posts: 1210
Joined: Sat Aug 17, 2013 5:46 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby stu » Sun Oct 20, 2019 9:20 am

I had a peek , you have a beautiful family there . Such joy going on . I think it’s a great time to add a new member to the family !

So pleased you are safely through your surgery . Sounds as though your doing well all things considered . You have been through a lot there . Let the good times commence for your growing family .

This all makes me very happy ,

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 .

User avatar
Atoq
Posts: 349
Joined: Wed Oct 25, 2017 9:31 am

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Atoq » Mon Oct 21, 2019 10:22 am

Nice to hear that surgery went well and congratulation with the new family member! I really love huskies, I had two of them, the first in 1991 and the second left us in 2015.

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
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, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Mon Oct 21, 2019 3:07 pm

Sitting here waiting to get staples out, even though I have done this before still nervous as hell. Doctor called this morning after tumor board netting an again reiterated how glad I went to CC OH and did the surgery with him with intraoperative radiation. He got everything and the radiation got any thing around the margin.

He said everywhere else looked good. Meeting with Oncologist Wednesday to go over next steps will update.

Thanks for the well wishes
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

AmyG
Posts: 282
Joined: Tue Dec 25, 2018 8:08 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby AmyG » Mon Oct 21, 2019 9:32 pm

Rikimaroo wrote:I woke up with catheter and stents in my penis (UGH!!) a mushroom plug in my butt, and they stabbed me on the side for a drain.



:shock:

I mean, that's better than not waking up at all but damn!! Hope all goes well and your team had a solid plan in place for you.

Also.

Lincoln is a very handsome dog, and your squirrel assassin terrier made me giggle. Hopefully the squirrel didn't suffer, but I was shocked it got caught! Give your wife a high five for her cute edits. If she browses reddit she might enjoy

https://www.reddit.com/r/AnimalTextGifs/
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Fri Nov 01, 2019 9:46 pm

Hello Guys,

Update - So Oncologist wants me to do 5 more rounds of FolFiri to make it a total of 12 from where I left off. He said this was the recommendation from the Tumor Board in CC OH after my procedure. Even though 0/7 lymph nodes were clean and they got all the cancer, I guess its just precautionary. I hope this once and for all seals the deal, I really can't deal with this anymore. It's a real roller coaster.

Also I have been taking ibuprofen 800mg once a day for the past few weeks, since out of surgery to control pain and this week I had major lockup. Gas Pains were intense, i felt like I had a blockage. I walked, dranked, took Laxative (magnesium citrate) and tea and just when I though nothing was going to work, finally after two days of suffering, the stuff started to come out and farting started to happen. I knew I didn't have a blockage because pushing on my abdomen I didn't feel pain, just pain from gas. I was so close to go to the ER. I am glad I didn't, because they would of poked and prodded me and I really didn't want that. No more pain killers for me, I heard tylenol doesn't cause constipation, so I might take that if needed.

Still getting use to the output of the colostomy, it is definitely not as active as the ileostomy which makes me nervous for more gas and constipation. I think I am going to continue my metamucil regime, to see if that helps. Anyone with Colostomy, please send me tips on keeping things flowing nice and smooth.
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

tminor5
Posts: 35
Joined: Wed Jun 13, 2018 11:46 am

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby tminor5 » Sat Nov 02, 2019 3:17 pm

With my husband’s colostomy he had to take stool softener. He took 2 in the morning and 3 at night. His diet would make the output change sometimes. The best advice we got was from a pharmacist at Sam’s club. He said it takes 36 hours for any stool softener adjustments to be noticed. He said never adjust up or down by more then 1 pill and always wait the 36 hours to make any other adjustments.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Sun Nov 03, 2019 10:35 am

Thanks for the input. I am going to hold off on stool softener for now. It is outputting and I think at a normal range. I guess my main issue now is that the stuff just doesn't fall down into the bag which is super annoying, I use lubricant deodarant, and it doesn't work LOL... I just lift the bag where the stoma is and shake to get it to fall down, but super annoying. Any one find away around this pancaking, At least it doesn't seep out the sides which is good.
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

tminor5
Posts: 35
Joined: Wed Jun 13, 2018 11:46 am

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby tminor5 » Sun Nov 03, 2019 1:18 pm

My husband didn’t have a choice. He was told to keep his output like a paste. Too runny can cause dehydration and too formed can cause a blockage. So if he started to pancake we would add an extra stool softener for a day or 2 then go back to what usually kept him consistent.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Rikimaroo
Posts: 263
Joined: Tue Dec 20, 2016 8:48 pm

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby Rikimaroo » Thu Nov 07, 2019 10:34 am

Started FolFiri yesterday. Of course when I got home later in the evening threw up. It is always guaranteed I am going to throw up, at least twice. The 2nd time is always worse, because its harder to breathe cause its more liquid. Nothing I have tried will stop the vomiting from happening. I will take Zofran and they give me premeds, neither works. I hate going through this the chemo is the hardest, but 1 down, 4 to go :(
RC T3N1M0 12/16
MSS - NRAS Mutation
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 highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

PaulSmarinecorps
Posts: 3
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

Re: Surgery Monday 7th 2019 Salvage Resection Surgery

Postby PaulSmarinecorps » Thu Nov 07, 2019 3:09 pm

Keep it up man I’m in the same boat kinda with the chemo. I did 6 cycles of FOLFOX then a break and surgeries and now just starting the second cycle of chemo to make it a complete 12, and I feel the same way always sick and so fatigued. I feel like it’s worse this go round actually


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