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by crikklekay
Wed Feb 12, 2025 10:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf Experiences
Replies: 5
Views: 270

Re: Lonsurf Experiences

I’m sorry it has been a hard few months. I can relate as I’m currently undergoing chemo treatment after another recurrence. In the fall of 2022 shortly after being diagnosed with stage 3 rectal cancer, I started taking Lonsurf as part of a trial. I was told that it was usually given to stage IV col...
by crikklekay
Mon Feb 10, 2025 3:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf Experiences
Replies: 5
Views: 270

Re: Lonsurf Experiences

Hi Crikklekay, Have you tried seeking a second opinion of surgeons specialising in Peritonectomy/HIPEC/Cytoreductive surgery. My late husband had a a total colectomy - his entire colon was removed, along with a whole heap of stuff - under this specialised surgery. General surgeons often don't have ...
by crikklekay
Tue Feb 04, 2025 6:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf Experiences
Replies: 5
Views: 270

Lonsurf Experiences

It has been a very hard few months. Long story short, second reoccurrence of his cancer that is currently inoperable because they would need to remove most/all of his colon to get it and they are worried about further spread than they can currently see. The plan is to do treatment, hope it shrinks t...
by crikklekay
Tue Feb 04, 2025 6:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colectomy recovery expectations
Replies: 5
Views: 342

Re: Colectomy recovery expectations

It has been 6 years since my husband’s colectomy, and his was an emergency surgery due to a obstruction so I don’t think it will be a one to one with your experience. We were in the hospital for a total of two weeks, but they kept him longer because he was popping a mystery fever in the evenings. In...
by crikklekay
Tue Feb 04, 2025 5:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To bidet or not to bidet. That is the question, lol.
Replies: 3
Views: 166

Re: To bidet or not to bidet. That is the question, lol.

We recently got the kind that installs under the toilet seat because my husband couldn’t properly wipe after surgery. If the pressure is the issue it does have an adjustable knob, though we only use it on the lowest setting as any higher and the pressure is intense! We haven’t noticed any issues, bu...
by crikklekay
Tue Dec 17, 2024 7:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gastroparesis?
Replies: 2
Views: 654

Re: Gastroparesis?

I’m just seeing this, I didn’t get an email showing a reply! I had read that somewhere at some point, but I didn’t know it could cause blood loss. He’s having surgery tomorrow so that will hopefully provide some answers. Thank you for the suggestion! :D
by crikklekay
Sat Nov 30, 2024 10:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gastroparesis?
Replies: 2
Views: 654

Gastroparesis?

We’ve had a year. First severe iron deficient anemia out of nowhere, but couldn’t find the cause. We did a pill cam that got stuck and had to be removed with surgery, and that’s when the surgeon found a mesenteric mass stuck to the small intestines causing a narrowing which is why the pill cam got s...
by crikklekay
Sat Nov 30, 2024 9:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Can someone help please.
Replies: 6
Views: 956

Re: Can someone help please.

My husband’s oncologist likes to remind us that he is a person not a number. She stresses to focus on John, and the goal of treatment with curative intent. Your husband is young, and hopefully in good health. He should be able to handle the surgeries and whatever treatment he receives after, unless ...
by crikklekay
Tue Sep 17, 2024 4:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mesentery Met?
Replies: 0
Views: 2463

Mesentery Met?

I'm back after two years, with not great news. My husband had sudden onset severe anemia so we've spent the last few months trying to figure out where the bleed is located. The last test was a pill cam to look at the small intestine and it got stuck. He even landed in the hospital with a bowel obstr...
by crikklekay
Tue Jan 31, 2023 10:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Proteinuria from bevacizumab
Replies: 3
Views: 7274

Re: Proteinuria from bevacizumab

Hello! Sorry to pop in on such an old thread, but I wanted to see how your husband is doing, and how you guys dealt with the proteinuria? We just landed in the same boat, and I'm terrified they will want to stop the Avastin. We're waiting to hear how his oncologist wants to handle it. The Avastin is...
by crikklekay
Fri Mar 25, 2022 10:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long Term Avastin Use?
Replies: 15
Views: 5824

Re: Long Term Avastin Use?

John's MRI came back with a shadow on it, which he said could be something or could be nothing. He suggests continuing his chemo for another two months and then do a new MRI, if that one comes back looking good then switching him to Xeloda/Avastin for a few months since he says those two work well t...
by crikklekay
Sat Mar 12, 2022 10:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long Term Avastin Use?
Replies: 15
Views: 5824

Re: Long Term Avastin Use?

His local oncologist has been managing his health since late 2017 when his primary tumor was discovered. Last year when they found his reoccurrence on his liver, there were no surgeons locally who could handle the operation so he was referred to UVA. He met with both a liver surgeon and oncologist i...
by crikklekay
Thu Mar 10, 2022 9:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long Term Avastin Use?
Replies: 15
Views: 5824

Re: Long Term Avastin Use?

Oh wow, so much information! JJH, to answer your first question on symptom management his oncologist has reduced the amount of Folfiri he was getting to help his hand/foot issues and he uses prescription lotion to help the worst of the peeling. We haven’t been offered a way to mitigate his taste iss...
by crikklekay
Sun Mar 06, 2022 1:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long Term Avastin Use?
Replies: 15
Views: 5824

Re: Long Term Avastin Use?

Are you saying that the oncologist is proposing possibly putting John on long-term Avastin monotherapy , i.e, Avastin, single-agent therapy? Yes! Though I didn't know there was a term for it. If this rise is just a blip, or due to the chemo and not something more sinister, she said his "mainte...

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