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by kandj
Sat Sep 16, 2023 10:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How are you monitored if CEA was not relevant?
Replies: 14
Views: 1471

Re: How are you monitored if CEA was not relevant?

My husband gets scans every 2 months. PET, CT of chest, abdomen and Pelvis, and a liver MRI. He has for the last 8 years. The PETs have only been added in the last 2 years due to some issues with CT picking it all up with scar tissue.
by kandj
Sat May 28, 2022 9:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Who are the longest stage 4 survivor's on here?
Replies: 136
Views: 73351

Re: Who are the longest stage 4 survivor's on here?

My husband is coming up on 7 years in August. He’s had several recurrences, still on chemo, but still fighting and living. I don’t think he will ever be cured, but we never thought we would be here this late in the game.
by kandj
Sat Sep 18, 2021 4:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: to HAI or not ... anyone regret it ???
Replies: 7
Views: 1858

Re: to HAI or not ... anyone regret it ???

My husband had the HAI (codman version) placed in Dec 2015. Like Cynthia above, DH was told he had extensive liver involvement. MDA wouldn't even consider treating him in hopes of getting a liver surgery (that is how extensive and large they were). We were basically told to go home, do chemo till it...
by kandj
Thu Jul 22, 2021 10:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How much chemo can the body take?
Replies: 2
Views: 1245

How much chemo can the body take?

DH has been battling stage 4 CC for 6 years (in August) and has been on chemo for almost 5 years of the 6. I counted it out the other day and his last round (he does Irinotecan, a 5fu bolus and xeloda right now every 2 weeks) put him at 108 rounds. This has been FOLFOX (17 rounds of this), Folfiri, ...
by kandj
Thu Jul 22, 2021 10:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 29F. Just got a colonoscopy. They found something and I’m scared.
Replies: 51
Views: 7573

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

He is Dr. Garcia Aguilar I don’t know him. I will say, all the staff (from the techs that clean the rooms to the medical department heads) are all top notch. Through the last 6 years my DH has been in a lot of hospitals and medical Offices. MSK blows all of those out of the water. If your surgeon h...
by kandj
Wed Jul 21, 2021 10:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 29F. Just got a colonoscopy. They found something and I’m scared.
Replies: 51
Views: 7573

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

TiredandTroubled wrote:
Jacques wrote:TiredandTroubled -


He is a board certified surgeon at MSK and has great reviews. Now I’m getting concerned? He answered a lot of my questions but I didn’t know he was supposed to give me such detail.



Which doctor is it at MSK? my husband's colon surgeon was Dr. Paty and he is one of the best.
by kandj
Fri Mar 26, 2021 6:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: It's back
Replies: 22
Views: 6751

Re: It's back

Where is this suspicious spot in the liver? You said it isn’t surgical but is it possible to radiate it? DH has had really good results with SBRT at msk. Hopefully it comes back to be nothing. The MRI being questionable is good news in my opinion. Those suckers have been able to see teeny tiny Mets ...
by kandj
Fri Mar 26, 2021 6:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK Liver Surgeon and FOLFIRI question
Replies: 6
Views: 1414

Re: MSK Liver Surgeon and FOLFIRI question

Second question, how long can someone stay on FOLFIRI before the side effects become too much? He's been doing FOLFIRI + avastin for over 9 months now. He's able to continue working (though he generally works from home during the treatment period) and function fairly normally. But lately he seems m...
by kandj
Thu Jan 14, 2021 8:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Covid 19 vaccine
Replies: 104
Views: 42858

Re: Covid 19 vaccine

Dh got the pfizer shot last week. I know everyone has their own opinions (some informed, some not so much) about vaccinations but I am all for them. Our three boys have also or are going to receive the HPV vaccine (youngest will get his in 2 yrs). Anything we can do to keep from infecting others or ...
by kandj
Wed Dec 30, 2020 6:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oxaliplatin Dosage - Call Off
Replies: 24
Views: 5044

Re: Oxaliplatin Dosage - Call Off

My husband is the zebra apparently. He had 11 doses of FOlFOX with he Oxaliplatin before he had neuropathy in his throat that was causing swallowing and choking issues. He went off that, then had a recurrence a year later and got another 6 rounds of FOLFOX before they dropped the Oxailplatin. His on...
by kandj
Wed Dec 30, 2020 5:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: It's come back - :(
Replies: 37
Views: 12072

Re: It's come back - :(

Thanks for all your replies! I really appreciate it. Have today received a new plan of attack - adrenal gland is going to be removed prior to chemo. The endocrinologist now involved said there is a small chance it’s actually a benign growth. She can remove it by keyhole surgery and then we can get ...
by kandj
Tue Dec 22, 2020 1:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Covid 19 vaccine
Replies: 104
Views: 42858

Re: Covid 19 vaccine

I was at MSK today and the nurse told me they haven’t gotten them yet - they will first go to healthcare workers treating Covid patients. Last week, my Northwestern nurses had heard nothing about timing etc. That is so weird. My husband was there the same day as you and he said the MSK vaccine clin...
by kandj
Tue Dec 22, 2020 1:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: It's come back - :(
Replies: 37
Views: 12072

Re: It's come back - :(

I am so sorry you have had to join the shitty Stage 4 group. My DH has also has a met on his adrenal gland. There are a few others here. His has been a pin to deal with. I highly suggest having it taken out surgically if that is an option for you. DH had his treated with ablation, that had to be sto...
by kandj
Sun Sep 27, 2020 11:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Covid delays
Replies: 7
Views: 1671

Re: Covid delays

That is an insane wait time for CTs. Here in Texas we are staying consistent in our current wave (although not as bad) but DH has been able to make all his CT appts no problem. He has had to be tested before the ones in NYC though, makes sense coming from Texas though. I am sorry, this isn't fair to...
by kandj
Sun Sep 27, 2020 11:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 385
Views: 120023

Re: My CRC with liver mets journey

Sent an email to MSK with about four questions and they answered only one of them - confirming when to schedule my scan. Getting frustrated. I don't want my local doctor to be making calls about my treatment by default because I can't get Dr K to address whether I should reinstate irinotecan my nex...

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