Tumor gone, cea level of 1

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Tumor gone, cea level of 1

Postby Eleda » Tue Jan 23, 2018 7:49 pm

Great news Caat
I'm sure, u will make the best decision for urself I'm the end,,,
I've fingers crossed I'll actually b faced with ur choice in a few weeks
For me it would b a non runner to not do the chemo afterwards, but then again I'm not willing to accept a colostomy, so everyone has different prioritys

I'm hoping for a trial after. My oncologist said he has nothing this side of surgery but come back after and he has loads,,,,
My nerves will b shot wondering when it will come back so I'm up for close monitoring IE. TRIALS
GOOD LUCK WITH UR DECISION
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Tue Jan 23, 2018 10:12 pm

Reading the preop stuff from hospital. Setting up alarms in my phone.
The ostomy nurse said they would set me up with some supplies, mentioned getting samples from vendors. Any suggestions of who to register with?
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Some ostomy equipment suppliers

Postby O Stoma Mia » Wed Jan 24, 2018 2:52 pm

Caat55 wrote:.. Any suggestions of who to register with?

Some ostomy equipment suppliers
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46515&p=341459#p341459
.

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: Tumor gone, cea level of 1

Postby O Stoma Mia » Sat Jan 27, 2018 10:49 am

Caat55 wrote:...surgery next week...

Good luck on your surgery next Wednesday. Will this surgery be done under the LifeSeal clinical trial arrangement that you mentioned earlier? If so, have they gone through the Informed Consent procedure with you already? Did they then give you a copy of the form that you had to sign?

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Tumor gone, cea level of 1

Postby mozart13 » Sat Jan 27, 2018 11:42 am

That is excellent news, tumor is gone. You are on your way to be cured .
Chemo I would do, won't be easy, try to start asap after the surgery, results are better if chemo is started right after the surgery.
2 weeks after my chemo/rad, they had hard time finding the spot, if it wasn't for tatoo/ink mark, would have been difficult to find it. Just had scope 2 weeks ago, they woke me up at the end, looks like brand new inside. Thickening of the wall is normal after radiation.
Down the road things will change how they treat rectal cancer, just as it changed how anal cancer was treated.
There is big trial, started back in 2013, will have result's at the end of this year. Patient's receive chemo/rad followed by 8 rounds of folfox, than are evaluated, surgery or W&W approach.
We know from small study where patient's are given 6 rounds of folfox after chemo/rad, pCR (pathological complete response was 38%), now is about 18% after initial chemo/rad.
You can find more info on this forum, here is the link:
viewtopic.php?f=1&t=53498&start=165
Surgery is still considered as King!

Good luck to you!
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 the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Sat Jan 27, 2018 2:42 pm

Thanks Mozart!
Scheduled for surgery Wednesday. Starting colon prep Monday as I didn't get great clearance with colonoscopy in August, want. It clean this time. Using Suprep rather than Golytely this time. We were directed to do it at 4 and 8 but that's impossible as we have to drive closer to hospital, they have me scheduled to check in at 5:15 am,. Anyone have any idea of how quickly this stuff works. I am using recommendations you all made the Mike from New Hampshire to pack my bag. I received letter from insurance saying they approved 3 day stay but I was told to plan on 5 days. How quickly did folks get released? Should I arrange day care for my pup, 1 year old border collie mix, for a few days extra after coming home?
Questions, questions?
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Tumor gone, cea level of 1

Postby Robino1 » Sat Jan 27, 2018 4:23 pm

I just had a colonoscopy Tuesday and did the Suprep. It pretty much started working right away. The output was almost done after 2.5 - 3 hours. Which gave me about an hour before doing the second bottle. I was diligent in only having clear liquids before starting the prep. After the second bottle, I managed to go to sleep after about 2 hours ...

Once it is ALL liquid output, don't wipe. Just pat dry.

Suprep was sooo much more pleasant than that gallon jug of ugh. Follow the directions. That first 16 ounces with the solution is kinda icky but the 2 - 16oz of water is a breeze.

As an aside, my colonoscopy was clean. No polyps or anything. A hemorrhoid but I knew that would be there. ;)


Now I can concentrate on kicking this cancer in my belly!!!! :twisted:
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Tumor gone, cea level of 1

Postby heiders33 » Sat Jan 27, 2018 4:34 pm

I was in the hospital for five days for my LAR surgery. Surgery on Monday, out of the hospital on Friday. They were talking about keeping me until Saturday, but my surgeon came in on Thursday night and said I could start eating solids, which got me out the next day. Remember to advocate for yourself and walk, walk, walk as much as you can. When you come home, you will still be tired and you shouldn't do any strenuous activity for six weeks or so after surgery. Not sure how high-maintenance your puppy is, but if it doesn't cause you a lot of strain or fatigue I'd say you don't need to have extra daycare. I have a cat and he kept me company a lot while I was lying around recovering.

I did the Suprep as well, which works much better than other preps I've taken. It works pretty quickly and I was able to get a good night's sleep.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Sat Jan 27, 2018 5:06 pm

Now I can concentrate on kicking this cancer in my belly!!!! :twisted:[/quote]
You have beaten so much, stay focused, treat yourself. This is my Mardi Grad weekend. I will remember advice about blotting as things pretty quickly get sore again down there. I have a bidet at home which it a godsend

S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Sat Jan 27, 2018 5:10 pm

Thanks for info. My husband has promised to kick me out of bed at hospital. Puppers thinks if you aren't moving you are fair game for toys. We have a great 2 .5 mile hike up my hill I hope to get back to quickly. Can see all the way to mountains near Yosemite and Myt. Diablo. Nature is healing and it never rains in California just like song says.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Tumor gone, cea level of 1

Postby Robino1 » Sun Jan 28, 2018 9:34 am

Walking will be slow. Just take it very slow but be determined. ;)

You got this!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Sun Jan 28, 2018 1:25 pm

:) Getting last minute stuff today. Long walk. Nerves. I got this but still.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Tumor gone, cea level of 1

Postby O Stoma Mia » Sun Jan 28, 2018 2:29 pm

Best wishes for a successful surgery and quick recovery. While you are still in the hospital and in recovery mode you might spend some time reviewing the standard format for a pathology report, since the next big decision point will be to review your post-surgery pathology report and to figure out what to do with respect to chemo, given your path report findings

Here is a link to some information on pathology reporting formats.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50471&p=388132#p388132

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tumor gone, cea level of 1

Postby Caat55 » Sun Jan 28, 2018 2:37 pm

Thank yo O S Mio. I will do that. It took Stanford just hours to get blood work online. MRIover a week. The next steps aren't decided until the 15th, so I have time.
Packing sweatpants to get outside even for a bit. You can work in a hospital every day and never get how it feels to be a patient. I will use this to be a better therapist.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20


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