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by disco nap
Tue Jul 22, 2014 5:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 28 years old and taking it one day at a time.
Replies: 17
Views: 2181

Re: 28 years old and taking it one day at a time.

Thanks for all the kind words. I do have a question though....on my ct scan it said that my lung base images are clear. The liver gallbladder/bile ducts, pancreas, spleen, adrenals, kidneys, and bones all appear normal. Can I assume then that if this is cancer.....it hasn't moved to those spots at ...
by disco nap
Sun Jul 20, 2014 9:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone else with VitaminB deficiency?
Replies: 8
Views: 1162

Re: Anyone else with VitaminB deficiency?

There is a connection between B12 and those who have had part of their colon removed - since that's where B12 is absorbed.

I supplement on B12 and all B vitamins or I feel very fatigued if I don't.
by disco nap
Wed Jul 16, 2014 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: True or False - Information from oncologist
Replies: 50
Views: 6032

Re: True or False - Information from oncologist

Generally speaking, I think what your oncologist has said is true, but side effects of the chemo do vary person to person. A lot of people do very well on folfox, but some do have more than their fair share of side effects.
by disco nap
Wed Jul 16, 2014 5:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cecum Removal Questions
Replies: 11
Views: 21579

Re: Cecum Removal Questions

Mine was removed and my side effects are: none.

I had an open hemicolectomy, it took about 5 weeks to get bak to work and a usual routine, it took a few more months to feel back to normal.
by disco nap
Tue Jul 15, 2014 5:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: allergic reaction to chemotherapy
Replies: 6
Views: 1417

Re: allergic reaction to chemotherapy

I had an allergic reaction to oxaliplatin on my 5th or 6th cycle. I broke out in hives and my face swelled up - right in the infusion chair. All they did was slow the infusion time and hit me with benadryl before all of my following cycles. Which was good because I slept through everything. I still ...
by disco nap
Mon Jul 14, 2014 8:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 3c, T4b, can anyone identify?
Replies: 5
Views: 1529

Re: Stage 3c, T4b, can anyone identify?

T4b = tumour directly invades or adheres to a nearby organ or structure. I am pretty sure I was a T4b - my tumour was 7cm and was slipping around a blood vessel. And I had 11 lymph nodes positive. I am having a little liver thingy looked at right now but, if that turns out to be a benign thing as it...
by disco nap
Sat Jul 05, 2014 7:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Standard of care after treatment/NED - Stage III or others?
Replies: 16
Views: 2076

Re: Standard of care after treatment/NED - Stage III or othe

Hi all: Just wondering what your onc has you do after you are NED. When we started this journey, the onc said DH would have scans every 6 months. After treatment (which was almost a year later), it's now scan and colonoscopy once a year. CEA test every 3 months. What have you been told to do? For m...
by disco nap
Wed Jun 25, 2014 7:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRspeak contest
Replies: 36
Views: 3807

Re: CRspeak contest

This is funny! I saw Michaelbass do a post on my thread and I looked at the user Id expecting to see CRGuy. When I saw the Michaelbass user Id my first thought was CR Guy was deleted and reinvented his account under a new user id! But then CRGuy also posted on my thread.

So that was weird.
by disco nap
Wed Jun 25, 2014 6:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clean scan. Oh wait...just kidding!
Replies: 30
Views: 4781

Re: Clean scan. Oh wait...just kidding!

Thank you all for validating my outrage! Bev, I agree with you that many radiologists go to great lengths to cover themselves and if they see anything - anything at all - they will refer for followup and sometimes it's overkill. Last time I had the liver thing they said "ultrasound in 3 months ...
by disco nap
Tue Jun 24, 2014 8:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When facing death do extramarital affairs come to mind?
Replies: 28
Views: 4142

Re: When facing death do extramarital affairs come to mind?

This is a tough one! I am trying to think what I would do in your shoes. I would start to prioritize myself: take care of me, my future, my health, my happiness so I ensured that i thrived going forward. I would still be a caregiver but I think my level of engagement would decline quite a bit and I'...
by disco nap
Tue Jun 24, 2014 7:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clean scan. Oh wait...just kidding!
Replies: 30
Views: 4781

Clean scan. Oh wait...just kidding!

I had my 4 year scan on April 25. I have been NED since July 6, 2010. The doc called a few days later and left a voicemail saying all is well. I had a follow up appointment with another doctor (my main one was on vacation) on May 13 who confirmed those results, answered questions about them, and set...
by disco nap
Sun May 25, 2014 2:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lynch syndrome/genetic testing Q
Replies: 6
Views: 1238

Re: Lynch syndrome/genetic testing Q

I'm surprised to hear they test all tumours for Lynch, but yes, that is absolutely the most definitive way to test for Lynch.
by disco nap
Tue Apr 29, 2014 6:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New here... Husband is 29 with stage IIIc and I'm pregnant.
Replies: 18
Views: 4460

Re: New here... Husband is 29 with stage IIIc and I'm pregna

Hello, I had a similar diagnosis to your husband but I had 11/18 lymph nodes positive. The rest of your tale is very similar to mine including tumour size and location. Mine had reached out for my appendix and had almost fused to a major blood vessel. My doctor phoned today and my 4 year scan is cle...
by disco nap
Wed Apr 23, 2014 5:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver nodule - could it be?
Replies: 7
Views: 1421

Re: Liver nodule - could it be?

I have a "thing" on my liver about 1.5 cm. Sure, that will cause a panic for anybody. My doctors and the radiologist knew immediately it was "nothing" even though they didn't actually know what it was. I think they can identify cancer but if it's something benign it may not be as...
by disco nap
Wed Apr 23, 2014 5:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Metallic taste while on FOLFOX
Replies: 9
Views: 1733

Re: Metallic taste while on FOLFOX

I am surprised nobody has mentioned the tried and true: pickle juice!

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