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by JaninOz
Thu Apr 28, 2016 1:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: For Stage III's: NED for how long now?
Replies: 837
Views: 405768

Re: For Stage III's: NED for how long now?

Colonoscopy one teensie polyp. Scan clear. CEA down again to 0.04. I am claiming two years NED now and many many more to come.
by JaninOz
Fri Mar 04, 2016 5:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oncology and hiding info
Replies: 27
Views: 5793

Re: Oncology and hiding info

HI Calla I had 5FU only but via IV weekly. I'd had a bad reaction to it with a 24 hour bottle but by IV it was fine. My tumour had been reduced to overgrowth of scar tissue by radiation and post op pathology showed no signs of tumour cells. My oncologist said for the few % extra that oxy gave, somet...
by JaninOz
Thu Feb 18, 2016 2:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Signs you are dying.
Replies: 18
Views: 5594

Re: Signs you are dying.

Thank you. I have often wondered how Cherie was doing and if she ever made it to Australia.
by JaninOz
Wed Feb 10, 2016 4:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Original Dx T3n1b RC, complete pathological response, which adjuvant chemo to do?
Replies: 13
Views: 2188

Re: Original Dx T3n1b RC, complete pathological response, which adjuvant chemo to do?

I was T2N1 with rectal cancer. Did the chemoradiation before surgery - 5 weeks radiation. Started with 24/7 5Fu but after bad reaction just had 2 x 3 days of IV 5Fu after that. Post surgery pathology showed only overgrowth of scar tissue, not quite complete response but close to it. No tumour cells ...
by JaninOz
Fri Nov 27, 2015 1:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: chest pain from chemo?
Replies: 6
Views: 1403

Re: chest pain from chemo?

Definitely. I had chest pains from 5FU when I had it as 24/7 infusion with radiation. I had vasospasms - a known side effect. A night in the cardiac ward and many tests, my heart is fine. However, I had to have my adjuvant chemo as a weekly bolus and take Verapamil to stop the spasms; no more 24 hou...
by JaninOz
Wed Oct 28, 2015 7:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Minimally invasive surgical approaches inferior to open resection for rectal cancer
Replies: 4
Views: 967

Re: Minimally invasive surgical approaches inferior to open resection for rectal cancer

I am part of the ALaCarte trial. The surgery in this trial was performed by top notch surgeons very experienced in laproscopic resections. I got the öpen"card. I don't have a vertical incision, however. I have a 14cm bikini line cut. It was possibly assisted laparoscopic surgery - I have a bell...
by JaninOz
Wed Sep 23, 2015 7:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU reactions?
Replies: 13
Views: 2566

Re: 5FU reactions?

When having neo adjuvant chemoradiation, I was having 5FU 24/7 via a pump bottle. After a week of shoulder pains, I developed pain in the middle of my chest with associated nausea and clamminess. ECG was going off the chart and then it all suddenly stopped. ER docs clamped off the bottle and I had n...
by JaninOz
Fri Jul 24, 2015 7:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU Cardiotoxicity -- Alternatives???
Replies: 4
Views: 1194

Re: 5FU Cardiotoxicity -- Alternatives???

I was on 24/7 5FU with radiation. During the first week, I developed aches and pains across my shoulders that finally settled, one night, right in the middle of my breastbone, with nausea and clamminess. Rush into the ED. Many tests later - I had no heart problems; it was a reaction to the 5FU calle...
by JaninOz
Thu Jul 23, 2015 1:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU and radiation
Replies: 10
Views: 1170

Re: 5FU and radiation

I had radiation and 5Fu via a PICC line (your other post). I had an unusual reaction to the 24/7 5FU (vasospasms) so my bottle was taken away after a week. However, they gave me 2 lots of 3 day 5FU through the PICC over the next 4 weeks. At first I had no other problems. They tend to build up as tim...
by JaninOz
Thu Jul 09, 2015 2:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mis diagnosis?
Replies: 26
Views: 3658

Re: Mis diagnosis?

What Jaynee said. I was diagnosed as 3A by CT scan and MRI. No perforation either but one lymph suspicious (T2N1M0). I also had chemoradiation prior to surgery. I had another CT immediately prior to surgery and they knew that I had responded well - the tumour had shrunk considerably. Pathology showe...
by JaninOz
Wed Jun 24, 2015 3:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any CRC book authors here?
Replies: 3
Views: 1103

Re: Any CRC book authors here?

There is a lovely Aussie lady who is about to have a book published, Breakfast, School Run, Chemo. Her journey with Stage 4 bowel cancer.

http://fivefairiesandafella.com/2015/06 ... omment-668

Her blog
by JaninOz
Thu Jun 04, 2015 3:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ileostomy fatigue
Replies: 10
Views: 2514

Re: ileostomy fatigue

Hi I recently had my ileo reversed. I never realised how much it drained me until that was done. The energy difference was almost immediate. I think I was probably slightly dehyrdated the whole time I had it. You need to drink lots of fluids and also keep up the electrolytes. I found that if I had a...
by JaninOz
Sat May 23, 2015 7:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversal Surgery Next Tuesday - update
Replies: 21
Views: 2817

Re: Reversal Surgery Next Tuesday - update

I am 5 weeks post reversal. Despite all the horror stories I had read, the journey hasn't been too bad. I have straight through connection. Spent two days in hospital and was allowed home due to 'rumblings'. First night home I slept well, after having to get up every night for 9 months to empty ileo...
by JaninOz
Sat May 23, 2015 7:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5 FU
Replies: 5
Views: 904

Re: 5 FU

I did 5Fu without a port too. 13 (supposed to be 16) push weekly via catheter. It didn't hurt. I did develop a slight phobia about needles by the end, but that's just me.
by JaninOz
Sun Mar 22, 2015 9:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hypokinesis / cardio myopathy after first cycle of FOLFOX :(
Replies: 3
Views: 1270

Re: Hypokinesis / cardio myopathy after first cycle of FOLFO

I got chest pains (started with shoulder pain) from 24/7 infused 5FU. I had numerous tests on my heart which is apparently fine. The pains were caused by vasospasms - where the arteries are contracting all the time. It is a known, but not common, side effect of 5FU. I was put into the cardiac ward a...

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