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by teachpdx
Tue May 22, 2018 4:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I declined Oxaliplatin
Replies: 8
Views: 2004

I declined Oxaliplatin

HI Folks, I was reading a post on length of neuropathy after being on Oxaliplatin. I had two thoughts: One - I feel bad for those with the long term side effects. Two - I'm happy I declined taking it. I had a difficult time with Xeloda and HFS. After my surgery and during "mop up" time I h...
by teachpdx
Wed May 09, 2018 9:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ten years and I missed it!
Replies: 17
Views: 5579

Re: Ten years and I missed it!

I'm so happy for you! I just passed my 6 year mark and I look forward to missing one. Good to hear from survivors.
by teachpdx
Thu Apr 12, 2018 11:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SO FRUSTRATED! - I hate these 'mega' medical groups
Replies: 12
Views: 2161

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

I've come to the conclusion it's up to us to take care of ourselves. If we don't advocate for ourselves we are at their mercy and many times not a good outcome. It sucks, but basically "buyer beware".
by teachpdx
Fri Mar 23, 2018 8:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Julie Yip Williams passed away last Monday, Mar 19th, 2018
Replies: 19
Views: 10619

Re: Julie Yip Williams passed away last Monday, Mar 19th, 2018

So sad to hear of her passing but not unexpected. I also followed her blog and felt inspired by her and felt she had a great gift.

RIP warrior.
by teachpdx
Fri Mar 02, 2018 9:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: GABAPENTIN
Replies: 6
Views: 1734

Re: GABAPENTIN

When I took it it made my neuropathy worse so I went off it. I am apt to have the weird side effects. My neuropathy was from HFS.
by teachpdx
Tue Feb 27, 2018 9:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to you do to keep up your strength?
Replies: 11
Views: 2149

Re: What to you do to keep up your strength?

CR you are such a poet - love reading your posts. When it comes to energy, I have found that what I think is NECESSARY has changed dramatically the last five years. I literally recycled a pot I cooked rice in to cook soup in this evening! You might find this funny or gross, butt I've never done that...
by teachpdx
Tue Feb 27, 2018 9:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to Board - Xeloda and Side Effects
Replies: 21
Views: 5582

Re: New to Board - Xeloda and Side Effects

I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep. Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble pr...
by teachpdx
Wed Jan 31, 2018 9:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good news...and I'm at my lowest
Replies: 18
Views: 3608

Re: Good news...and I'm at my lowest

Hey Sealdog, I pretty much went through same treatment as you, plus I'm Lynch, and I had such a bad reaction to post Xeloda (only 1-1/2 cycle instead of 6) that I quit early. Onc said people with Lynch less apt to have metastases but more apt to new primary. Also said post efficacy was only 10% &...
by teachpdx
Tue Jan 23, 2018 3:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What's In a Name
Replies: 11
Views: 2445

Re: What's In a Name

I'm five years out and I've just become comfortable saying I'm a cancer survivor. Usually comes up in relation to something else and it's usually an explainer.

Technically if you're here you're a survivor. Best of luck on your journey & your new you. Kristi
by teachpdx
Mon Jan 22, 2018 4:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Female Pains AFTER radiation, No Doc will Listen...
Replies: 53
Views: 16360

Re: Female Pains AFTER radiation, No Doc will Listen...

I also have an urgent bladder these days. I wear a pad when I'm working (as substitute teacher) because I usually pee a bit AFTER I've already peed, especially when sitting down afterwards. Try to make sure I get it all but sometimes I forget and sometimes... I also can get an urgent need to pee and...
by teachpdx
Wed Jan 17, 2018 6:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Low Anterior Resection Syndrome: Do you have it?
Replies: 79
Views: 42191

Re: Low Anterior Resection Syndrome: Do you have it?

Her exam was through my vagina. I had damage to my vagina during my LAR. My surgeon accidentally punched a hole in it while scraping my rectum off of it. So I have issues in both openings. I'm so sorry - that really sucks. I feel like recovery from rectal cancer does not receive near as much attent...
by teachpdx
Wed Jan 17, 2018 6:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Female Pains AFTER radiation, No Doc will Listen...
Replies: 53
Views: 16360

Re: Female Pains AFTER radiation, No Doc will Listen...

I was not given any advice on putting anything on afterwards. Plenty of notes in waiting room for breast cancer radiation patients. The problem with salves is they say you should be salve free when receiving radiation. Try getting that stuff off - especially on delicate tissues. A bit of a catch-22....
by teachpdx
Tue Jan 16, 2018 9:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Low Anterior Resection Syndrome: Do you have it?
Replies: 79
Views: 42191

Re: Low Anterior Resection Syndrome: Do you have it?

Anne, has your PT suggested going through your vagina to get to pelvic floor muscles? I actually delayed my reversal for the pelvic floor PT because it was so effective. Also I don't think any type of PT can go through the anus - the tissue is too compromised. Any exam etc causes me to bleed. Too mu...
by teachpdx
Tue Jan 16, 2018 9:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Phantom rectum pain
Replies: 4
Views: 1664

Re: Phantom rectum pain

Hi Karen, I've pretty much have come to the conclusion that it's the levator ani muscle - smallish muscle that slings around the rectum. Without the rectum for support and having a rather wide pelvic opening (gave vaginal birth to 12lb child) I think it's too much for this muscle and there's a thres...

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