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by Rock_Robster
Tue Aug 02, 2022 8:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How did you treated those bone/spine mets
Replies: 2
Views: 365

Re: How did you treated those bone/spine mets

I commented on the scan timing on your other post so I won’t repeat myself. However I’ve not heard of using IMRT for bone mets - more commonly I think this would be SABR/SBRT (of which CyberKnife is one brand). Though perhaps given the need to also deliver pelvic radiation this was also a factor. It...
by Rock_Robster
Sat Jul 30, 2022 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Doc hated second opinions & some more questions about treatment
Replies: 3
Views: 495

Re: Doc hated second opinions & some more questions about treatment

Sorry to hear - this has indeed been a tough run. On your question specifically, I had a PET 2 months after radiation and my med onc said it was “just” late enough to be able to draw some meaningful conclusions, but there l was also still quite a lot of ‘noise’ there (ie inflammation, scarring / pos...
by Rock_Robster
Wed Jul 20, 2022 7:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo every 2 weeks vs 3 weeks
Replies: 7
Views: 652

Re: Chemo every 2 weeks vs 3 weeks

It’s a good question and my caveat is that very little in the below is evidence, just opinion: - we know that there is a dose-dependent relationship between chemotherapy and disease response. That is - a therapeutic window (hopefully) where it can kill tumour cells without killing the patient. In ag...
by Rock_Robster
Thu Jul 07, 2022 12:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for the brains trust!
Replies: 9
Views: 1395

Re: Question for the brains trust!

Hi all, thanks very much for the really helpful responses above. Fascinating to see the range of opinions, as always. I met with my (local) oncologist again and we distilled it down to two options: 1. Do nothing and scan again in 2 months, or 2. Start Xeloda+Avastin and scan again in 3 months (ie gi...
by Rock_Robster
Mon Jun 27, 2022 9:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for the brains trust!
Replies: 9
Views: 1395

Question for the brains trust!

Ok brains trust / hive mind, I need your opinions here please. Last scan (PET and CT) was generally good. The liver looks completely fine (a couple of areas of non-specific low-level activity, but almost certainly related to the past PVE and healing from recent SBRT). Nodes - nothing specific. Again...
by Rock_Robster
Sun Jun 26, 2022 1:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Children Monitoring
Replies: 11
Views: 1388

Re: Children Monitoring

I have been wondering about when my kids, who are 18 and 20 y.o., should start having colonoscopies. There was no history of colon cancer in my family, and testing showed it wasn’t genetic. I read in this forum that it would be a good idea for them to get a life insurance prior to getting colonosco...
by Rock_Robster
Wed Jun 22, 2022 3:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Disease increased after radiation?
Replies: 4
Views: 1107

Re: Disease increased after radiation?

Sorry to hear the news. Of course it would have been great to see regression of disease across the board. I have two general thoughts here, not sure if very useful: 1. I had been told that a PET within 2 months of surgery or radiation is not particularly useful, due to the high levels of inflammatio...
by Rock_Robster
Tue Jun 21, 2022 7:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My Current Protocol——-All Thoughts/Criticism Welcomed
Replies: 173
Views: 21900

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Isn’t vitamin E radioprotective? It was one of the few things my rad onc was very clear that I shouldn’t take.

Good luck for the treatment!
by Rock_Robster
Fri Jun 17, 2022 8:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genetic mutations
Replies: 44
Views: 5307

Re: Genetic mutations

For those who have a complete response, I am under the impression it’s only the stage 1 and 2 that can take a wait and watch? Regardless of my response to radiation I’m thinking there will always be a resection, and either a reversal or not, and if reversal all the problems that go along with that....
by Rock_Robster
Fri Jun 17, 2022 4:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genetic mutations
Replies: 44
Views: 5307

Re: Genetic mutations

Great advice from Peregrine. Particularly around prevention. My guidelines for radiation… 1. No dry toilet paper shall touch your rear end from day 1 of radiation until it’s over. Even if it feels ok, one day it won’t and you’ll wish you had delayed that moment. A bidet attachment for the toilet is ...
by Rock_Robster
Tue Jun 14, 2022 9:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My Current Protocol——-All Thoughts/Criticism Welcomed
Replies: 173
Views: 21900

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Maybe there’s a middle ground here. I’ve done a fair bit of chemo and agree it’s no life from now until the end, whenever that is. But in the non-curative setting it also doesn’t necessarily make sense to just throw full-blown chemo at it anyway. Some people with stage IV disease can stay stable on ...
by Rock_Robster
Sat Jun 04, 2022 2:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advice: Margins were not clear
Replies: 21
Views: 3085

Re: Need advice: Margins were not clear

Glad to hear he’s feeling better and in good spirits! Certainly a tough situation. The trouble of course is that a subsequent local rectal recurrence can be potentially very challenging to deal with, so if there’s any way to further reduce the risk of this now then it’s certainly worth considering. ...
by Rock_Robster
Fri Jun 03, 2022 8:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advice: Margins were not clear
Replies: 21
Views: 3085

Re: Need advice: Margins were not clear

Sorry to hear this - not what you were hoping to hear. I agree with roadrunner about a multidisciplinary consult; preferably at a major centre. Where did you get to on radiation? I wonder if some adjuvant radiotherapy may be of benefit - or possibly even SBRT depending on the location. Given it’s cl...
by Rock_Robster
Mon May 30, 2022 10:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Checklists for newly diagnosed Stage IV patients?
Replies: 4
Views: 1341

Re: Checklists for newly diagnosed Stage IV patients?

If a more advanced diagnosis (eg late stage III or stage IV): Full staging including PET-CT. Biomarker/genomics testing, including MSS/MSI and targetable mutations. Baseline bloods including CEA and CA19-9. Comprehensive treatment plan developed by multidisciplinary team (not just first step). Shoul...
by Rock_Robster
Sat May 28, 2022 12:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Who are the longest stage 4 survivor's on here?
Replies: 126
Views: 46420

Re: Who are the longest stage 4 survivor's on here?

I’m a long way off any kind of record, but I’ve been going 3 years and 8 months. Will be 4 years in October. NED for 2 of these (and hopefully again soon…)

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