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by betsydoglover
Wed Mar 14, 2018 11:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 16
Views: 1297

Re: KRAS Mutation- any one long term NED?

I'm KRAS mutant and have been in remission since 2009. See my signature - it is possible.
by betsydoglover
Wed Mar 14, 2018 11:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why no statistics on stage two and Xeloda
Replies: 12
Views: 809

Re: Why no statistics on stage two and Xeloda

I started out as Stage 4, so my situation is different. However, after being NED for 3 years, I had a lung recurrence - surgically removed. My oncologist gave me an option of Xeloda/Avastin or nothing, although she recommended the chemo. I decided that I couldn't live with myself if I recurred and h...
by betsydoglover
Tue Mar 13, 2018 4:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible for long term remission with only chemo?
Replies: 31
Views: 2162

Re: Possible for long term remission with only chemo?

I am sorry for your situation. I am honestly not sure if chemo only can cure peritoneal mets. See my signature, Chemo alone eliminated my liver met - 12+ years. I had a lung recurrence in 11/08 and for that I did have VATS in 2009, plus Xeloda / Avastin. I have at this point been almost 9 years NED ...
by betsydoglover
Thu Mar 08, 2018 2:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 1 colon Cancer, CEA levels, CT scans
Replies: 13
Views: 850

Re: Stage 1 colon Cancer, CEA levels, CT scans

Your CEA's are all very low within the low range of normal. Numbers like that fluctuate and what appear to be possibly significant percentage changes are in fact nothing to worry about. In fact, oncologists are trained to not worry about CEA fluctuations within the normal range. You could probably h...
by betsydoglover
Thu Mar 08, 2018 2:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Severe bone pain in lower leg
Replies: 6
Views: 677

Re: Severe bone pain in lower leg

Agree with everyone else. However, you might want to consult with a general orthopedic surgeon - they know (obviously) lots more about bones than an onc or primary care doc.
by betsydoglover
Wed Mar 07, 2018 11:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Monitoring Stage IV
Replies: 6
Views: 621

Re: Monitoring Stage IV

Personally, I would like (and have) a much more proactive follow up plan. I don't want to scare you, but HIPEC is often not successful in the long term. I really question your oncologist's recommendation. A year between scans is pretty long for someone who is in the early stages of being Stage 4. Ta...
by betsydoglover
Thu Mar 01, 2018 1:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: GABAPENTIN
Replies: 6
Views: 542

Re: GABAPENTIN

My oncologist prescribed it for me just 1/day to help with sleep - it sure helped with sleep - the next AM I was a zombie - felt like I was walking 5 feet above the ground. It's normally a tid drug - can't imagine how that would feel. So, not everyone can take it. (Of course I can't tolerate Benadry...
by betsydoglover
Sat Feb 24, 2018 2:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia while taking xeloda and avastin
Replies: 6
Views: 355

Re: Anemia while taking xeloda and avastin

You are doing right getting your onc to run tests. I've been on Xeloda twice and on Avastin for 2 years, but never had altered red blood counts. But that's just me, I'm sure your doc can get to the bottom of this - many chemos can reduce RBC counts in some people,

Take care,
by betsydoglover
Sat Feb 24, 2018 2:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Should I ask for a colonoscopy?? Help meeee
Replies: 16
Views: 798

Re: Should I ask for a colonoscopy?? Help meeee

I'm sorry about your problems. I suffered from panic attacks several years ago that took the form of health anxiety - one minute I was having a heart attack, another I had an "awareness" of my armpit" - it must have been a tumor. There were other things too. I finally saw a psycho-pha...
by betsydoglover
Sun Feb 18, 2018 1:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Health Insurance Help
Replies: 13
Views: 801

Re: Health Insurance Help

Here's a crazy idea. I don't know how your husband's company works, but in many/most(?) companies, 24 hours per week qualifies you for benefits, including insurance - even 30 hrs/week is probably doable. FMLA is unpaid, anyway. So perhaps if he went officially part time for a while, then he could re...
by betsydoglover
Thu Jan 11, 2018 5:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice for first appointment with oncologist after diagnosis
Replies: 6
Views: 473

Re: Advice for first appointment with oncologist after diagnosis

Sorry to hear this...... Did either your GI doc or surgeon order a CT scan of chest/abdomen/pelvis? If not (do not want to scare you), then it is not completely to rule out possible metastatic disease. Ask your oncologist if he/she agrees with the staging or thinks further tests should be done. (Bef...
by betsydoglover
Tue Jan 09, 2018 7:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Questions about blood on tissue......
Replies: 2
Views: 312

Re: Questions about blood on tissue......

I get how worried you are, but with a clean scope, it is almost impossible that anything super serious is wrong (ie - cancer). That said, make an appt with your Gi doc and let him know your symptoms. If nothing else it will make you feel better if a qualified doc tells you that you are OK - which ag...
by betsydoglover
Fri Jan 05, 2018 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st CT since diagnosis - question
Replies: 14
Views: 1025

Re: 1st CT since diagnosis - question

Rachel2017 - Check out Dr. Cheryl Aylesworth in Silver Spring. She is my oncologist and is wonderful. Head of clinical trials at Holy Cross, very well connected at NIH/NCI. I could not imagine a better oncologist. Not sure where in DC you are, but it is at least worth talking with her. Take care,
by betsydoglover
Wed Jan 03, 2018 2:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone doing xelox and xeloda. Please help
Replies: 26
Views: 1367

Re: Anyone doing xelox and xeloda. Please help

You may need a stronger anti-nausea med, but when I was on Xeloda/oxaliplatin, I found it REALLY helped to be VERY proactive with the compazine. If I took it before things got bad on a fairly regular basis, it worked and I mostly had no nausea (did still have that slightly irritated GI tract that Xe...
by betsydoglover
Tue Nov 14, 2017 5:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long to followup Stage 4 ?
Replies: 10
Views: 1064

Re: How long to followup Stage 4 ?

Thanks All - As Julie said, we are in uncharted territory - my onc would be the first to say that. I guess I will keep getting blood work (CEA, however, has never been a marker - highest ever was 0.9 - normally <0.5. And, even with my liver met, liver function was normal.) Maybe one more scan - I'll...

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