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by mpbser
Sun Dec 01, 2019 5:34 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 10 Years and Counting
Replies: 30
Views: 1843

Re: 10 Years and Counting

I love seeing this. Thank you so much for sharing!
by mpbser
Mon Nov 04, 2019 5:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What, besides, tumor burden causes elevated CEA?
Replies: 7
Views: 466

Re: What, besides, tumor burden causes elevated CEA?

My husband's CEA was recently 2.9 which was a jump from 2.2 three months ago. We were concerned until we read that hyperglycemia positively correlates with CEA. When my husband gets extremely stressed, e.g. morning of surgery, recent scanxiety on day of scan review during a time of enormous work str...
by mpbser
Mon Nov 04, 2019 5:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SCAN QUESTIONS
Replies: 9
Views: 552

Re: SCAN QUESTIONS

I vacillate between wanting to have an explanation for these statements in question and just letting it be. As some people here already know, I have reviewed images myself from the CDs in the past. My husband always gets liver MRIs (at least since 2017 when his Mass General oncologist dropped the ba...
by mpbser
Sun Nov 03, 2019 12:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SCAN QUESTIONS
Replies: 9
Views: 552

Re: SCAN QUESTIONS

Wish we could do this. However, we have to travel and get the scans within 18 hours of the oncologist consult the following day. The reports never get released until at least 48 hours after the scan and that's when they are on weekdays. Because we come from out of town and my husband's schedule is s...
by mpbser
Sun Nov 03, 2019 12:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SCAN QUESTIONS
Replies: 9
Views: 552

Re: SCAN QUESTIONS

Someone responded elsewhere that this could be a good layperson's interpretation: 1) There is a section of the sigmoid colon that is now visible without distention (enlargement). There is no mass in this section. 2) There is a feature in the caudate resected zone that appears to be on the surface bu...
by mpbser
Sun Nov 03, 2019 10:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SCAN QUESTIONS
Replies: 9
Views: 552

SCAN QUESTIONS

I really don't like how we get these reports AFTER our oncologist appointment to review the results. I always have questions like this that I cannot possibly ask at the appointment. What do you guys think these passages from the CT report mean? 1) Focal nondistended region of the sigmoid colon is ne...
by mpbser
Sun Oct 20, 2019 3:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 70
Views: 10642

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

"Unfortunately, the initial results from people I’m following are not encouraging. Most people have progression, some have stability. But that’s what we would expect from Regorafenib monotherapy." Can you clarify? Are you saying that the results of most people you are following who are tak...
by mpbser
Fri Oct 11, 2019 1:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 287
Views: 42926

Re: My CRC with liver mets journey

Best of luck next week. Keep us posted!
by mpbser
Thu Oct 10, 2019 4:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Fewer mutations in liver met - a good sign?
Replies: 2
Views: 507

Re: Fewer mutations in liver met - a good sign?

Thanks, gravelguy. Actually, he is NED. Has been since March surgery (liver #2). I really hope that the one pesky met that popped up after his first liver surgery (Jan 2018 surgery, found met Dec 2018) was just a micromet that was missed. His Mass General docs did not have him do mop-up chemo which ...
by mpbser
Wed Oct 09, 2019 6:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Fewer mutations in liver met - a good sign?
Replies: 2
Views: 507

Fewer mutations in liver met - a good sign?

My husband and I went to Weill-Cornell last week and went over the genomic testing (“Oncomine”) results from the metastasis that was removed in March. I found it very interesting that the “met” that was tested had only two (tp53 and apc) of the three mutations that the primary tumor (tp53, apc, and ...
by mpbser
Wed Oct 09, 2019 6:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1207

Re: How long does MSK take to get approval to install HAI pump?

I don't think that any paperwork requirement makes a dent in the time it takes to schedule an implantation surgery at MSK. My husband decided that he wanted to go ahead with the pump on or around February 2nd and he was offered a surgery date of February 14th. Maybe "paperwork" was started...
by mpbser
Wed Oct 09, 2019 6:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1207

Re: How long does MSK take to get approval to install HAI pump?

"I'm told that the combination of Medtronic pump and Codman catheter is off-label and therefore needs FDA approval." Yes, the combination of Medtronic pump and Codman catheter is off-label and is in the process of investigation (trial) at NIH and MSK. That does not mean that doctors cannot...
by mpbser
Wed Oct 09, 2019 6:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: EXaCT1 Testing?
Replies: 3
Views: 486

Re: EXaCT1 Testing?

I like how Whole Exome Sequencing finds mutations that less comprehensive tests miss. If, for example, EXaCT-1 shows my husband's liver met (I assume Weill-Cornell is testing the met to the liver because I made the slide request to MSK) shares a mutation associated with breast cancer, he might benef...
by mpbser
Fri Oct 04, 2019 10:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: EXaCT1 Testing?
Replies: 3
Views: 486

EXaCT1 Testing?

Is anyone familiar with EXaCT1 testing or other Whole Exome Sequencing? Did you have it done? What did it tell you that you already didn't know about your cancer? How did it help guide you through treatment options? Here is what is on Weill-Cornell's website about it: Whole Exome Sequencing by Next ...

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