Sorry to be here but may I join you?

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Joined: Thu Aug 12, 2010 7:10 pm
Facebook Username: Lenarnc
Location: Kentucky

Re: Sorry to be here but may I join you?

Postby Lena » Mon Sep 03, 2012 2:21 pm

Sounds like you are doing the same thing I did. The only difference was, due to surgery complications, an ileostomy could not be done (which was fine with me). The surgeon did an Proctocolectomy with Ileo anal pouch anastomoses. This was done in two phases, which made for a 21 day hospital stay.

You can get in touch with me anytime.
Dx rectal cancer July 30, 2009
Power port placement Aug. 3, 2009
Chemotherapy/Radiation therapy stated August 3, 2009
Chemo/radiation completed October 4th 2009
Proctocolectomy with Ileoanal jpouch November 3, 2009
NED 2014
Stage 2

Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Sorry to be here but may I join you?

Postby Surroundedbylove » Mon Sep 03, 2012 2:38 pm

Standard protocol for adjuvant chemo in stage 3 is either FOLFOX (one of the various types - FOLFOX4, FOLFOX6, modified FOLFOX6, FOLFOX7) or XELOX (Xeloda and oxaliplatin). When oxaliplatin is contraindicated in a patient (e.g. diabetic) the onc may recommend 5FU/Leucovorin (leucovorin is not a chemo but it makes the 5FU work) or Xeloda only; or the onc may recommend irinotecan in lieu of oxaliplatin.

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

Posts: 427
Joined: Sun Sep 02, 2012 3:47 pm

Re: Sorry to be here but may I join you?

Postby jean60 » Mon Sep 03, 2012 8:48 pm

You folks are incredible. All the welcomes, encouragement and information are really making me feel so much less alone this day.
@surrounded by love, thanks for mentioning diabetes. I have type II diabetes but my docs seem to just dismiss it because I do not take meds for it. I just control it through diet, something that has been increasingly difficult to do. I have got to make sure this is addressed when we get to that point and I am really glad you brought it up.
@Lena, Thank you! I think I have to get a certain number of posts in before I can pm someone and I understand and appreciate the care that is taken here.
@Staci'sTeam and all of you. You are certainly paying it forward and it really doesn't get much better than that.
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Sorry to be here but may I join you?

Postby jeanette57 » Tue Sep 04, 2012 4:11 am

Sorry for your journey, mine was in the anus and had a perment ostomy. i am use to the bag now but after 55 days of wound care, getting ready for Xeloda. I can't wait for the barbie butt to heal down to half inch. Then I am allowed out of house and can live again. My issues were diabetic in nature so I am not normal there with wound healing. However, my ostomy has many positive sides. George (my ostomy) is a great cause of laughter because he is a noise old fart :lol: :lol: :lol: gone to anus/rectal support groups, ostomy support group and I am the only one with a barbie butt. hate the feeliing being alone with issue of the butt. Even the doc don't know how to help the false to bathroom thinking you have GI blues and then realise you have a bag and there is no anus downthere. I nearly broke my neck in the store getting to the restroom, scared I would sh^t myself, sat and then though....what the hell! Just my mind playing nasty tricks... :cry:
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Sorry to be here but may I join you?

Postby lauragb » Tue Sep 04, 2012 4:05 pm

I am another member of the rectal cancer group. As hard as it is, it sounds like things are going well for you. I finished my adjuvant chemo last May and had my ileostomy reversed May 31 after 7 months. Last year at this time, I had just completed my chemoradiation. It is hard to imagine the steps that have to be take on this road but you do get through it. The folks on here are so helpful. I found the ileostomy while not fun, was not be as bad as I thought it would be and postings on this site sure have helped me through the reversal. Goodluck in your treatment. I look forward to hearing more about your progress.

RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

Peter S

Re: Sorry to be here but may I join you?

Postby Peter S » Sun Sep 09, 2012 12:39 pm

Hi everyone. I'm 59. Noticed blood in stool in late June . . . its now 9 Sept - 3 weeks into a 5-week Cap Chemo/Radiotherapy course.
Getting tired a lot and given up alcohol (because it irritates by bowel - sore from the radio, and iritates my wife who says I should leave the red wine til I'm better!) :D
Its hard to be in this Journey but I have such a heightened regard for Nurses, Helpers, Surgeons and Doctors now - They are all magic! Thank you all very much. A positive attitude helps I've found. Saw my Consultant Surgeon last Friday by accident while having blood tests . . . He said "My, you're looking well!" . . . . I said "Well? . . I've got news for you!" . . . We laughed but I find it helps.
I read everything on the net but one piece of advice I have been given is PAY PARTICULAR ATTENTION TO THE DATE ON POSTS. My Consultant says that progress in pre and post care, and in pre and post treatment and surgery is so rapid now that last year's news is now a new starting point.

My sympathies with everyone who is going through this, but it could be far worse . . . we all have a chance, let's take it!

Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

Re: Sorry to be here but may I join you?

Postby Redtexa5 » Sun Sep 09, 2012 2:27 pm

As a Type 1 diabetic I did bring this up with my Oncologist and no oxaliplatin is not contraindicated for diabetics, I double checked with NIH etc. I had the full 12 rounds of FOLFOX 6 no neuropathy at all. Oxaliplatin can cause diabetic neuropathy in a minority of patients, but the incidence is just as high among non diabetics as diabetics. Keep and eye on your glucose readings, fasting every morning since you are a type 2 and if they start to go up contact your oncologist and PCP they will get it under control. Don't forget stress in general can raise your blood glucose readings and that has nothing to do with oxaliplatin but alot with having cancer.
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
2/17 7 years NED

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