Surgery or no?

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beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surgery or no?

Postby beach sunrise » Thu Oct 01, 2020 10:25 pm

Great point, Siti! Team Rachel would be a good idea probably. I wouldn't have had such a smooth/ less life stress recovery without the people around me willing to help out (mainly the never ending laundry and grocery shopping :)
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Sun Oct 04, 2020 11:55 am

There are many team Rachel supporters :) I've been getting lots of help up to this point. My favorite is getting help with changing sheets as changing the duvet is one of my least favorite chores. My parents retired last year and are in Florida and won't be here until Thanksgiving. However my brother lives in the city and I have many friends who will check in on me throughout the recovery.

Last Friday, I completed the presurgical testing. It consisted of an EKG, labs, speaking with the anesthesia NP, etc. In addition the regular labs, they measured clotting factors and some other things but long story short, I'm cleared for surgery. My CEA dropped two points also. Since April, my CEA has been rising. It's leveled off in the last three months but still high and this is the first time it's been lower by more than one point. Oncologist says it should drop after surgery. Even though my scans have been stable, I can't help but wonder if they're just missing something. Last thing I need to do is see the stoma nurse which I will do tomorrow to get marked but otherwise, I just have to wait for surgery day and take care of myself until then.

If this is of any encouragement at all, my husband’s lymph nodes were noticeably smaller post surgery. He did a CT scan 5 weeks after his surgery and right before chemo.


This is definitely encouraging! I have enlarged nodes that have been stable so I just figured they've reached the limit of how much they can shrink. I wonder why, if he didn't have chemo between the surgery and the post surgery scan, the nodes shrank? Regardless, hope I'll have the same result.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Siti
Posts: 180
Joined: Thu Aug 01, 2019 10:58 am

Re: Surgery or no?

Postby Siti » Thu Oct 08, 2020 3:07 pm

Happy to read your positive post, Rachel. You’re so lucky to get help with the sheets! I’ve watched so many YouTube videos on how to get it right but I always end up fighting with the duvet regardless. LOL!

And to your question — yes, his oncologist personally compared the scan together with the radiologist and it was noted in his report as smaller but still present. We chose not to see the report until my husband finished 2 cycles because either way, the outcome would mean chemo so we preferred to not know until his next scan :)

Keep us posted on your recovery :)
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Mon Nov 16, 2020 9:36 am

Good news/bad news update. So the good is I had my surgery and the primary tumor was removed. There were too many lymph nodes involved and surgeon thought it was too risky to go for them all based on location so he only took out those that were accessible and may give me issues in the future. I recovered well and by week 3, I felt on the up and up. The bad news is that I had a follow up scan last week and it it's back in the liver. And a mix of stable/progression in the lungs and lymph nodes. Liver is the biggest concern. Oncologist said they're small (about 1 cm), but still. We talked three options: 1) continue with Folifiri which was keeping me stable up to surgery, I had 2 stable scans going into surgery, 2) Folfoxiri, the kitchen sink as she described, or 3) start looking at clinical trials. I would've had to wait a week or two or more for info on the trials and I had a huge sense of urgency to get back on something so we agreed on Folfoxiri. I disconnected yesterday. It was by far the worst in terms of fatigue. I was in bed all weekend, I couldn't even sit up. Additionally, I'm having intense lower back pain which may or may not be related. The plan is to do 5-6 infusions and have a scan in Jan/Feb. I'm obviously disappointed and scared. What do you guys think? Did the doc and I miss anything?
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

prayingforccr
Posts: 54
Joined: Sun Jun 28, 2020 4:44 pm

Re: Surgery or no?

Postby prayingforccr » Mon Nov 16, 2020 12:58 pm

rachelfromnyc wrote:Looking for thoughts on my current situation. To recap, my long term treatment plan is to do chemotherapy for life and that’s all I’ve had since diagnosis. I still have the primary tumor, lymph nodes and lung nodules. My scan from June showed everything stable except some lymph nodes. My latest scan from a week ago is stable. However I had abdominal cramping from the previous day on the morning of the scan so the scan picked up the issue. It was a stasis of contents of the bowel starting in the ascending colon up to the tumor in the transverse colon. Report said "incompetent ileocecal valve". The tumor did not grow so my oncologist thinks it shifted somehow and contributed to the partial blockage. It eventually resolved and I’m able to go to the bathroom normally. She wants to continue on with chemotherapy.

But then over the weekend, it happened again. Cramps Monday night but resolved by morning. I saw my second oncologist who thinks I should have a surgery at this point to avoid future issues but with the understanding that it won’t be curative. Better to have a planned surgery than an emergency intervention when I’m feeling really bad and it may not be the best time to have surgery. For example, next treatment is tomorrow which means I’ve been off Avastin for two weeks now and everything else is stable according to the scans.

So I went back to my primary oncologist who scheduled a surgical consult for me next week. In the meantime, I’m trying to decide if I really want this surgery/how much to advocate for it. Will it improve my condition and outlook? I’m doing ok with chemo in that I’ve gotten a handle on the side effects, except fatigue, and it’s keeping things stable. Any ideas here? Or even just questions to ask the surgeon next week to help in the decision making would be helpful.


Begin Joe Tippens protocol immediately.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery or no?

Postby Lee » Mon Nov 16, 2020 3:33 pm

I am so sorry regarding your liver spread. Not sure where you are at, butt if you can get to Sloan Kittering Memorial hospital in NYC. They have had a lot of success with a HAI pump in getting rid of liver tumors. They have also worked with patients that had both liver & lung mets.

I would also check out getting the tumors checked for mutations. Maybe there is something out there besides chemo for addressing the tumors, immune therapies, Ketruda, etc.

Good luck,

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 - 16 years and counting!

Siti
Posts: 180
Joined: Thu Aug 01, 2019 10:58 am

Re: Surgery or no?

Postby Siti » Mon Nov 16, 2020 5:45 pm

I’m so sorry to hear the news about your liver spread. Did they do a biopsy on the primary tumour? Apparently with a bigger specimen they’re able to find as Lee said other mutations if any. I think you’re on the right track in terms of going ahead with a few infusions of the strongest chemo and perhaps look for trials in tandem?
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Tue Nov 17, 2020 9:27 pm

Thanks everyone for your responses and encouragement. I've heard about the Joe Tippens protocol and will put it on the list to research more in depth. In the meantime, I'm already at Sloan Kettering but I'm finding I learn more from this board and its members. For example, I had to ask for my surgical pathology report. After it was released, I had to make another appointment for someone to explain it to me (next week). I also had my first infusion of folfoxiri on last Friday. Rough. I didn't have any nausea or vomitting or anything but the fatigue was extreme. I couldn't even sit up, I was asleep in bed all weekend. After disconnecting, I took a quick shower and had to lay down for a couple of hours just from the exertion. Unreal.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surgery or no?

Postby beach sunrise » Wed Nov 18, 2020 12:27 am

Hi Rachel, it is so good to have you update us.
Fatigue stinks but you got this!!!! You are one strong determined lady for sure!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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