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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: 3053

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: 3053

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: 3053

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: 3053

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...
by crikklekay
Sat Mar 05, 2022 7:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long Term Avastin Use?
Replies: 15
Views: 3053

Long Term Avastin Use?

Long time no type! 2021 beat out the previous worse year of my life (2018), and I had no mental/emotional energy for the board. Quick update: John was supposed to complete his 12 cycles of Folfiri/Avastin this week, took extra time off work and everything, but his CEA hit 5.5 and his Oncologist is c...
by crikklekay
Sat Mar 05, 2022 6:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Worried about cea
Replies: 3
Views: 2784

Re: Worried about cea

The main issue with CEA is if it keeps going up. CEA can increase because of many reasons, so if it pops up a bit then goes back down it isn’t much of a worry. But if it keeps going up, then your doctor will want to hunt for what is making it go up. Good luck! I know CEA is scary, John’s just hit 5....
by crikklekay
Mon Oct 11, 2021 7:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cancer Journey Update
Replies: 4
Views: 2241

Re: Cancer Journey Update

I don’t know, I haven’t heard of that before. I’ll ask at his next appointment, thank you!!
by crikklekay
Mon Oct 11, 2021 6:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cancer Journey Update
Replies: 4
Views: 2241

Cancer Journey Update

This year has been so incredibly hard for many reasons, and I can’t believe it’s already October. I’ve popped in several times all year with John’s CEA troubles so I thought I’d post an update. Recap: John’s routine blood work came back with elevated CEA so he was given all the basic scans/tests/etc...
by crikklekay
Wed Jul 21, 2021 9:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on Metastatic Treatment
Replies: 3
Views: 911

Re: Question on Metastatic Treatment

Catstaff - John's main oncology team says that's the standard procedure, that you don't treat unless you know what you're treating. The nurse even said there is a very slight chance this is nothing and the issue is elsewhere. The other team is at a university and were more interested in what clinica...
by crikklekay
Mon Jul 19, 2021 10:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on Metastatic Treatment
Replies: 3
Views: 911

Question on Metastatic Treatment

Here’s a quick rundown: My husband was just about 3 years into remission when his CEA started trending up in February. He has had so many tests and scans since then, and it looks like he has a spot of something high up on his liver. We ended up having to go out of town to find a liver surgical oncol...
by crikklekay
Sat Jul 10, 2021 10:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recent HAI Pump?
Replies: 12
Views: 2312

Re: Recent HAI Pump?

Thank you for your story! We’re still flailing around, the local liver surgical oncologist (the one who poo-pooed the HAI pump) more or less refused to do anything so we had to go to another cancer center out of town. While they are more than willing to accept John as a patient, they’re currently ar...
by crikklekay
Sat Jun 12, 2021 11:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recent HAI Pump?
Replies: 12
Views: 2312

Re: Recent HAI Pump?

Oh I had no idea they stopped production! That’s distressing, I’ve read of so many people here benefiting from it. Hopefully someone will come up with a similar technology, it seems like directing chemo straight at the problem would be better than running it through the whole body and hoping it stic...
by crikklekay
Fri Jun 11, 2021 11:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Signatera Test Came out positive
Replies: 16
Views: 3376

Re: Signatera Test Came out positive

Oh, this is wildly different from my country. I guess having to compete with a free social security drives the costs down in Spain. I just got the bill for the MRI, it was $8,146.68 without insurance and $100 with my insurance. I also got the bill for his PET scan, which was denied and over $10,000...
by crikklekay
Thu Jun 10, 2021 10:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New here
Replies: 7
Views: 1695

Re: New here

Hello, fellow Virginian! I'm unfortunately in the Richmond area so I can't share any recommendations, but I completely understand struggling with anxiety. It looks likely that my DH has a liver reoccurrence, though we don't have a biopsy to confirm yet. I've had bad test/scanxiety ever since he went...

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