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by betsydoglover
Fri May 25, 2018 12:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling really sad and in need of support
Replies: 10
Views: 276

Re: Feeling really sad and in need of support

Sorry for your side effects. You should ask your doctor to consider Xeloda (capecitibine) tablets as an alternative to the pump ( different people experience and many find Xeloda easier (if only because you don't have to bother with pump)). Surprised you don't have Avastin your mix - common for Stag...
by betsydoglover
Thu May 24, 2018 12:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please! Read me...
Replies: 10
Views: 485

Re: Please! Read me...

I know how hard that is to hear - but try to put it in the back of your mind. When I was diagnosed Stage 4 liver mets in 2005, the official position of ASCO (Am. Soc. of Clinical Oncs) was that all Stage 4 treatment was palliative. It hit me like a ton of bricks when I saw that. But then I ignored i...
by betsydoglover
Sun May 20, 2018 12:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda, Avastin, post nasal drip and a cough
Replies: 5
Views: 208

Re: Xeloda, Avastin, post nasal drip and a cough

Avastin is known to cause nasal congestion, somewhat bloody nose, and post nasal drip. I stopped Avastin in April 2011 after 2 years, BUT I still have the mucous in the AM. My oncologist sent me to an allergist - total workup - no allergies. Don't want to scare you, but it may be something to live w...
by betsydoglover
Tue Apr 24, 2018 5:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update CEA & CT Scan Results - Advice/Feedback Needed
Replies: 6
Views: 993

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

We aren't docs, so can't answer most of your questions. A 3cm nodule is not small, but it's not considered big also. CEA has never been an indicator for me, but for those for whom it is, it is the trend that mostly matters. So, the fact that yours is going up is worth checking out. A CT can sometime...
by betsydoglover
Sat Apr 21, 2018 3:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL trial at NIH going for initial testing
Replies: 8
Views: 1147

Re: TIL trial at NIH going for initial testing

Hi - I know nothing about this trial. But I was evaluated for a clinical trial there in 2006. The place is amazing. Everyone is SO nice - starting with the front desk. It's the Ritz of medical facilities! No discussion of $$ (refreshing in the medical context!). It seems all about you (because of co...
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: 21
Views: 2762

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: 1187

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: 3146

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: 1299

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: 923

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: 877

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: 763

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 UPDATE Elevated CA125
Replies: 11
Views: 770

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: 1285

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: 1163

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...

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