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by betsydoglover
Sat Jan 12, 2019 12:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV 31 Year Old Male currently Fighting
Replies: 5
Views: 845

Re: Stage IV 31 Year Old Male currently Fighting

I am so sorry that you have to be here, but it a great support board and also a wealth of information. I also was diagnosed Stage 4 - sigmoid tumor and liver met. You can see my treatments below. My CEA, by the way has never been higher than 0.9 so clearly it is not a marker for me and it sounds lik...
by betsydoglover
Sat Jan 05, 2019 3:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage II but puzzle with the chemo.. : (
Replies: 42
Views: 3478

Re: Stage II but puzzle with the chemo.. : (

My take on this is colored by the fact that I was initially diagnosed Stage 4, so the decision to do chemo was obvious. However, ask yourself how you would feel if you recurred as a Stage 4 and hadn't done everything you could have to possibly prevent a recurrence. Not to scare you, but we have all ...
by betsydoglover
Wed Jan 02, 2019 10:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To test or not to test?
Replies: 3
Views: 346

Re: To test or not to test?

When I was on chemo, I had blood work every session - which included CEA. My CEA has never been greater than 0.9 and yet still we test every 6 months, and I am 13+ years out from diagnosis and 9+ years out from being NED the second time. One important thing about CEA is that the trend really matters...
by betsydoglover
Wed Dec 12, 2018 5:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 7
Views: 1269

Re: CEA Levels

I understand your concern, but my oncologist told me that when CEA is within normal range, they are taught to not be concerned at all, even if it has gone up. So, things are most likely fine, and as you say if your onc was concerned, he wouldn't have just mailed you the results.

Take care,
by betsydoglover
Fri Dec 07, 2018 5:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lymphedema
Replies: 8
Views: 602

Re: Lymphedema

I know nothing about lymphedema, but I do know that I was in PT for knee replacement, they had brochures lying around for lymphedema PT - geared toward mastectomy patients, but I suspect PT might help with any kind.

Wishing you the best.
by betsydoglover
Tue Nov 20, 2018 3:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Job Hunting After Treatment?
Replies: 3
Views: 351

Re: Job Hunting After Treatment?

At least where I worked, the applicant was always seen first by HR, and HR discussed benefits with them and gave them a pkg of detailed info. Hopefully that is the case many places. I do think (fair or not), that if he were to try to schedule an interview by phone / email and say that he first neede...
by betsydoglover
Tue Nov 20, 2018 2:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Choosing between Georgetown, John Hopkins, or George Washington
Replies: 6
Views: 416

Re: Choosing between Georgetown, John Hopkins, or George Washington

While I have not seen him, John Marshall at GW has a great reputation as a GI oncologist. My onc is a huge fan and would have referred me to him immediately if it seemed necessary - no matter what you decide, I think you should consult with him.
by betsydoglover
Sun Nov 18, 2018 7:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to support my husband??
Replies: 8
Views: 618

Re: How to support my husband??

I am sorry for your situation - the early part of diagnosis is very difficult. Many have given good advice to you. I know you want to support your husband and make things easier. But I think the best thing you can do is just be there - it is even more difficult to get your head around this diagnosis...
by betsydoglover
Sat Nov 17, 2018 12:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 - liver mets disappeared
Replies: 16
Views: 1370

Re: Stage 4 - liver mets disappeared

Your case sounds a lot like mine - solitary liver met that was gone from CT, PET and MRI after 6 treatments of Xeloda/oxaliplatin/Avastin - that was back in 2005 and I am still here. While I did have 1 lung recurrence, my liver has been clear since then. My oncologist did not think I should I should...
by betsydoglover
Wed Nov 07, 2018 10:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS G12V and Avastin
Replies: 9
Views: 637

Re: KRAS G12V and Avastin

Don't be too discouraged. I Have the same KRAS mutation. I have had lots of Avastin. And, as you can see from my signature, I have done really well. Both my onc and I agree that Avastin most likely had a significant (positive) impact on the course of my disease. Best wishes.
by betsydoglover
Wed Oct 31, 2018 4:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What do you call this FOLFOX side effect?
Replies: 2
Views: 368

Re: What do you call this FOLFOX side effect?

This is probably not it, but might be worth thinking of. When I was on Xelox, it was sometimes hard to open my eyes in the AM - didn't last for long. I never felt it exactly as you describe, but there were times when I felt my eyes very temporarily hard to move. Not exactly the same thing. My onc at...
by betsydoglover
Sat Oct 20, 2018 3:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Confused Stage2 or Stage3
Replies: 16
Views: 1221

Re: Confused Stage2 or Stage3

It is frustrating not to know the stage. Sorry for that stress. But, I (although not being a medical person) strongly suggest that you have it treated as Stage 3. Sadly I have seen Stage 2 folks who did not do chemo and ended as Stage 3 and then even Stage 4. Since your data is sort of murky, it see...
by betsydoglover
Thu Oct 18, 2018 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CBC Levels
Replies: 6
Views: 663

Re: CBC Levels

Sorry you have to worry about this. I don't have data on those specific numbers, but I think any primary care physician would refer even slightly abnormal blood results to your onc. You have a good general who is keeping on top of this. Good luck.
by betsydoglover
Wed Oct 10, 2018 2:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 to NED- Please tell us
Replies: 46
Views: 5161

Re: Stage 4 to NED- Please tell us

See my signature also.

There is hope for Stage 4 folks.
by betsydoglover
Sat Oct 06, 2018 4:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about necessity of CEA labwork
Replies: 31
Views: 2725

Re: Question about necessity of CEA labwork

CEA is a cheap test - your doc/onc should be doing regular CBC/CMP, so no problem doing CEA also with the same sample. It's just another data point. Stage 4 and my first and all but one CEA has been less than 0.5 - once it was 0.9 - clearly it is not a good marker for me - and yet we test it every 3...

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