Please pass your positivity/wisdom today

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Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please pass your positivity/wisdom today

Postby Gravelyguy » Tue Jul 24, 2018 7:28 pm

Good news. Why the change?

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Please pass your positivity/wisdom today

Postby mhf1986 » Tue Jul 24, 2018 7:52 pm

Vectibix (aka p-mab per the oncologist and nurse) ROCKS! Really doing a number on DH's liver mets.

DH has the face rash (his nose looks like he's been in a fight with all the scabs) and chest/back rash. Nurse called it stable looking but we didn't get a grade. We were told heavy duty lotion (he's using Eucerin), a prescription gel, antibiotics, sunblock, and a hat when he's outside. I've read Benadryl helps with itching so I need to ask about that next time. Any trick that helps.

Doctor added irinitican at 66% dose and DH's neutrophils took a dive to 1 which we've seen before with FOLFOX. So no irinitican today, just p-mab. Suspect it will be alternating like that.

Onward...
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Sat Aug 04, 2018 1:12 pm

We still don't know why they took DH off, they didn't grade his rash but decided it was bad enough to take a break.

When they tried to put it back in a month later he had a bad reaction and they weren't sure if it was the oxiplatin or vectibix. I think the problem was he hadn't had the vectibix in a month and they tried getting it in, in 30 min since the first dose was an hour but forgetting he didn't have it in a month I think it shocked his system because he's been on oxiplatin from the beginning with no problems.

New scans August 14th praying for miracles every day and every night.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please pass your positivity/wisdom today

Postby Gravelyguy » Sun Aug 05, 2018 9:10 pm

Praying for you guys as well!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Fri Aug 10, 2018 6:45 am

So they stopped his vectibix again. One of his liver numbers was up slightly. And we found out his CEA wss still so high they couldn't get an accurate measurement but the nurse took us not to be discouraged because they way his liver numbers have dropped something is happening.

Any one have that? The high CEA when did it start going down? He said he feels better on chemo than not. He's had since liver pain and breathing pain. His tongue has been so sore he got "magic" mouthwash no mouth sores just his tongue.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI


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