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by Michmash77
Tue Jan 24, 2023 8:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver mets are back; what’s next….
Replies: 17
Views: 747

Re: Liver mets are back; what’s next….

Hi, I’m in Sydney and although I don’t have tumours in my liver (yet!) I have seen an excellent surgeon for second opinions as he is an expert in RFA but is primarily a liver and peritoneal surgeon. He does HIPEC as well I’m pretty sure. He is known for being aggressive and a lot of other doctors ro...
by Michmash77
Wed Feb 02, 2022 6:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm back.
Replies: 6
Views: 1482

Re: I'm back.

Hi Beansy1. You and I have a very similar history – I was 42 at diagnosis of rectal cancer followed by ULAR, had similar treatment by the looks of it but my serrated polyposis syndrome was found at the time of my diagnosis. They only found four sessile serrated polyps plus the cancer but my surgeon ...
by Michmash77
Mon Oct 25, 2021 12:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Hi Michmash, I agree fully with the suggestion above - I understand from your earlier posts you’re based in Australia, so just let me know if you’d like any suggestions for second opinions. Thanks so much! I am based in Australia, in Sydney. I've got the ball rolling on some second opinions already...
by Michmash77
Thu Oct 21, 2021 5:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Good luck with your meeting with the oncologist today. Let us know what you find out. Thank you! It was not particularly fruitful, it was very frustrating actually. I didn't get to see my actual oncologist. I've seen him a total of twice in the past seven months of this lot of chemo. I had one of t...
by Michmash77
Sun Oct 17, 2021 7:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Hooandtrue93 wrote:is using ctdna to track an option?


I didn't know too much about this so I did some reading and I guess it could be a possibility. It seems like it's still pretty new in Australia, so I will ask my onc about it on Wednesday. Thanks for the suggestion!
by Michmash77
Sun Oct 17, 2021 7:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Some additional thoughts ... 1. Have you ever had a PET/CT scan? If so, what were the uptake values (SUV) for the lung nodules? 2. You have had several CT scans. What kind of scans were they? with contrast or without? full body (neck to pelvis) or not? 3. How many slices does your hospital scanner ...
by Michmash77
Sun Oct 17, 2021 7:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Also, don't know if you are taking any supplements or not but some supplements synergize 5FU such as melatonin so some research suggest. Thanks, I did do some research on melatonin, very interesting! Fortunately I was already taking melatonin for my sleep issues which I'm glad of now! The only othe...
by Michmash77
Sun Oct 17, 2021 6:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

I think different oncologists have different approaches. My husband's is very much of the "let's only do chemo when we know what we're attacking" kind of school; even though my husband isn't NED (stable lytic L4 met), he's been off chemo for close to two years now. Also - pay really close...
by Michmash77
Fri Oct 15, 2021 10:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

... Any thoughts would be appreciated! Thanks, Michelle. Hello Michelle - Welcome to the forum, and I'm sorry to hear that you are having such a hard time. I have a few thoughts about your situation, but since I have not had any direct experience with Stage IV matters, my comments below are based o...
by Michmash77
Fri Oct 15, 2021 1:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

The last time I got to NED, my NW oncologist wanted me to do four more cycles; my MSK oncologist wanted eight. I got to seven before my levels dropped too low to continue, and I’ve been off for about two months and will scan next month. I had to be pretty direct about not wanting to remain on treat...
by Michmash77
Fri Oct 15, 2021 1:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

I thought DPD deficeint meant 5fu toxity is high. Maybe that is why you are having bad effects? Yeah that's correct. The first chemo last year they avoided it and put me on a horrible drug Raltitrexed. I think this is not FDA approved in the US, and for good reason! It was horrific. I actually tole...
by Michmash77
Fri Oct 15, 2021 1:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

How is your Folfiri dosed with the DPD deficiency? They started me at 50% which is apparently quite a high starting dose with DPD. When I tolerated that ok for two rounds they upped it to 75%. I've been on 75% since and they were supposed to drop it for maintenance chemo but for some reason haven't...
by Michmash77
Thu Oct 14, 2021 8:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU maintenance chemo even though NED - thoughts/opinions appreciated
Replies: 29
Views: 7530

5FU maintenance chemo even though NED - thoughts/opinions appreciated

Hi everyone, long-time lurker, first time poster. I’ve gotten so much good advice and helpful info from everyone here just from reading the posts but wanted to get some specific advice/opinions please. My signature will hopefully cover the basics, but I was diagnosed last year with rectal cancer sta...

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