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by wwroam
Wed Apr 27, 2016 10:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My NED Days appear over
Replies: 18
Views: 3165

My NED Days appear over

Well it was a good run. Almost 9 years. Yesterday I had a colonoscopy which wasn't very good. Apart from some lymph nodes there are 2 lymphomas in the colon. Not rare but not that common. I can't say that I have ever seen any posts with lymphomas in the colon on the forum. I've scheduled an appointm...
by wwroam
Thu Apr 21, 2016 6:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy next week..canceled previous two
Replies: 39
Views: 5039

Re: Colonoscopy next week..canceled previous two

I have a colonoscopy next Wednesday.
Because I'm diabetic and have impaired kidney function ( Folfox will knock about 20% off kidney function anyway), it's old school Moviprep . It's easier on the kidneys. As long as it is refrigerated I don't have a problem.
by wwroam
Mon Apr 18, 2016 11:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo and other treatments
Replies: 8
Views: 1949

Re: Chemo and other treatments

Hello Suzanne Thanks for all the info. Tomorrow my SO will have completed her 26th cycle of Folfox + Avastin. That makes it 21 cycles of Oxaliplatin and 23 of Avastin. Her oncologist suggested yesterday that there may only be another 2 cycles of Oxi in her . He would then switch over to Irinotecan. ...
by wwroam
Tue Apr 05, 2016 11:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How high can CEA go?
Replies: 8
Views: 1831

Re: How high can CEA go?

I found those high CEA numbers believable. My SO was 18,000 at diagnosis. After 9 rounds it was 2400 when the onc. advised an Oxi break due to neuropathy. After 10 weeks without Oxi it had climbed to 8000. It is now steady at 14000. In that period of rise in CEA there has been no change in tumour si...
by wwroam
Mon Apr 04, 2016 11:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Onc wants to remove oxaliplatin
Replies: 9
Views: 1946

Re: Onc wants to remove oxaliplatin

8 years ago I completed 12 rounds of Oxi. Neuropathy commenced after 10 but I did the next 2 anyway. Neuropathy proceeded to worsen for about 2 months afterwards , after which it slowly tapered off a bit, but it's still there. But then so am I. April 1 2014 my SO commenced Folfox 6 + Avastin. As of ...
by wwroam
Wed Mar 23, 2016 5:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: long term NED stage 3, alternative treatments?
Replies: 6
Views: 1424

Re: long term NED stage 3, alternative treatments?

I made no changes to my diet or lifestyle. However in 2011 I was diagnosed T2 Diabetic. That was my wake-up call. That is when I made significant changes to both. Without sounding smug, I have kept my bg levels at almost non-diabetic levels for 4 years. I've discussed this my onc. and the changes I ...
by wwroam
Wed Feb 24, 2016 6:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching from FOLFOX to FOLFIRI due to neuropathy
Replies: 11
Views: 1746

Re: Switching from FOLFOX to FOLFIRI due to neuropathy

I would seriously question abandoning Oxaliplatin. If you already have neuropathy it is unlikely to improve much. If the experience of my SO is anything to go by, the neuropathy may plateau. She has now had 18 rounds of Oxi.She had bad reactions after the 14th and 15th rounds but the last 3 rounds h...
by wwroam
Mon Feb 22, 2016 10:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Impaired fasting glucose and recurrence
Replies: 13
Views: 1249

Re: Impaired fasting glucose and recurrence

Beware of the units. US and the Continent use mg/dL , UK and Aus use mmo/L. the threshold for T2 diabetes is fbg 126/7. respectively. In terms of risk for recurrence the jury is out though current thinking is that the glucose by itself may not be as important as the free insulin that is generated by...
by wwroam
Tue Jan 26, 2016 6:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Delayed Side effects of Oxali?
Replies: 5
Views: 1127

Re: Delayed Side effects of Oxali?

Four rounds of Oxi isn't really a lot but we all have different responses. My SO has now completed 15 rounds of Oxi. She had Oxi for 9 cycles ( when PN kicked in, but which hasn't really worsened), had a break for 5 cycles and until this week another 6 cycles. The Oxi was very effective. The last 2 ...
by wwroam
Tue Jan 12, 2016 2:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Maximum number of Oxaliplatin Cycles
Replies: 1
Views: 881

Maximum number of Oxaliplatin Cycles

In 2007 I did the standard 12 cycles of Oxi.I had the usual side effects which longterm are not debilitating. My SO has now done 20 rounds of folfox + Avastin, 15 with Oxi and18 with Avastin ( the Avastin was discontinued after an appendicetomy). After the last two cycles she has suffered chills and...
by wwroam
Sun Nov 08, 2015 11:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: to those who have quit or reduced pre-med steroids
Replies: 9
Views: 1241

Re: to those who have quit or reduced pre-med steroids

After a couple of rounds of chemo I asked for a reduction in dosage of dex. When my SO started chemo she had a pre-med of dex and Emend with Kytril afterwards. Seemed to work OK. After the 6th round some bright spark decided to check her bg levels after dex and saline drip. She read at 16.5. I'm the...
by wwroam
Thu Oct 29, 2015 10:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: For those who also has melanoma
Replies: 2
Views: 544

Re: For those who also has melanoma

Never had a melanoma but I'm an old hand at the dermatologists and plastic surgeon for removal of SCCs, BCCs, IECs and actinic keratosis stretching back 30 years. Resisted Efudix for a long time but finally persuaded to give it a go by my P.S. His advice , which you were never given, was not to do y...
by wwroam
Sun Oct 11, 2015 9:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: how to be "in it together"
Replies: 27
Views: 3552

Re: how to be "in it together"

" in it together" is easier said than done. In 2007 I was a single man and just got on with it. I don't report on this much but my current partner was diagnosed Colon Stage IV with mets to liver , ovaries and breast bone in March I have learnt not to try to micromanage her treatment. There...
by wwroam
Thu Oct 01, 2015 1:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone have weight loss surgery after cancer??
Replies: 30
Views: 3268

Re: Anyone have weight loss surgery after cancer??

The problem is that your metabolism goes into overdrive during chemo and slows down when chemo stops.
Be very careful of your blood glucose levels. You have probably had a fair dose of dexamethasone during chemo and are at high risk of T2 diabetes.
by wwroam
Mon Aug 17, 2015 12:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oxiplatin and 5fu pump..... Last chance.
Replies: 8
Views: 1492

Re: Oxiplatin and 5fu pump..... Last chance.

It was only after the 12th cycle of Oxi that I developed neuropathy simultaneously in hands and feet. My SO developed it in her hands ( but not the feet) after 9 rounds of chemo. The 10th cycle has been 5FU and Avastin only. It does take many cycles for neuropathy to develop and I believe for patien...

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