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by Rock_Robster
Wed Mar 27, 2024 11:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 9
Views: 789

Re: VAXINIA (CF33 + hNIS) clinical trial

mobrouser wrote:What is a SPECT scan? Different than a PET scan?

Yes similar concept but a bit different in practice - I understand they’re using it to track the movement of the virus via a radiotracer:

https://my.clevelandclinic.org/health/d ... spect-scan
by Rock_Robster
Tue Mar 26, 2024 9:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 9
Views: 789

Re: VAXINIA (CF33 + hNIS) clinical trial

Just a very short update - had the 2nd dosing today, along with a lot more bloods, swabs etc plus a SPECT scan (which was new to me). The intratumoural delivery into the liver has been fine so far, but I have to say the flu-like side effects have been real! A decent fever on most days, serious fatig...
by Rock_Robster
Sat Mar 23, 2024 11:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung met
Replies: 17
Views: 556

Re: Lung met

roadrunner wrote:This sounds like a malignant pleural effusion.

If so if can be drained for her comfort (thoracentesis), sometimes along with a procedure to reduce the risk of it recurring (pleurodesis).
by Rock_Robster
Sat Mar 23, 2024 3:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung nodules and genetic testing
Replies: 10
Views: 297

Re: Lung nodules and genetic testing

...I just recently been diagnosed after my colonscopy.... I had a CT scan of my chest, pelvis and abdomen and on the CT scan they said they couldn't see any spread. ... It was never mentioned that it was on my original scan, maybe it was and the surgeon just didn't mention it? Also on my first scan...
by Rock_Robster
Fri Mar 22, 2024 8:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 9
Views: 789

Re: VAXINIA (CF33 + hNIS) clinical trial

Thanks all! First intratumoural dosing done and went fine - I feel a bit like you do after a vaccination (which makes perfect sense). Just quite tired really - I can nap most days :) . The sedation probably affected more than anything else. Also the liver biopsies are by far the most unpleasant part...
by Rock_Robster
Fri Mar 22, 2024 12:43 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung nodules and genetic testing
Replies: 10
Views: 297

Re: Lung nodules and genetic testing

You’re right that lung lesions at that size are unlikely to be PET-avid, typically need at least 5 or even 10mm for lung things to show on PET. I don’t love waiting a year for imaging - I find that a little strange. Perhaps see if you can get them to agree for another check in 3 months - if everythi...
by Rock_Robster
Sun Mar 17, 2024 9:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 9
Views: 789

Re: VAXINIA (CF33 + hNIS) clinical trial

Markdale wrote:Hope the trial works out rob. The lead investigator in Australia is the surgeon who operated on me, he has a great reputation.

Thanks Markdale, that’s great! Is that Gavin Wright? If so I met him once and he seems like a great guy.
by Rock_Robster
Sat Mar 16, 2024 2:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: VAXINIA (CF33 + hNIS) clinical trial
Replies: 9
Views: 789

VAXINIA (CF33 + hNIS) clinical trial

Hi all. So for those who follow these things - next week (19th) I will be starting the VAXINIA (CF33 + hNIS) clinical trial at St Vincent’s Hospital in Melbourne, Australia. This is a phase 1 trial of an oncolytic virus manufactured by Imugene and developed by Prof. Yuman Fong at City of Hope, who m...
by Rock_Robster
Sat Mar 02, 2024 10:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neulasta bone pain
Replies: 3
Views: 351

Re: Neulasta bone pain

I’m not sure if there’s much science behind it, but I find combining the Claritin with naproxen (eg Aleve) seems to work better than other anti-inflammatories. Other than that - heat, eg hot packs / wheat bags, warm baths, etc. all seem to help in the short term at least.
by Rock_Robster
Sat Mar 02, 2024 11:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Multiple clinical trial applications
Replies: 0
Views: 346

Multiple clinical trial applications

Hi all, for those who’ve gone down the clinical trial route, I’m interested in how you found best to juggle the dilemma of multiple applications. Specifically: 1. Do you tell the trial coordinator(s) that you’re also screening for other trials? Or, 2. Do you only apply for one trial at a time / sequ...
by Rock_Robster
Wed Feb 14, 2024 9:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 4185

Re: New guy with old questions.

This was the main source I was looking at when convincing my surgeon to complete a lymphadenectomy of the celiac nodes. Encouraging results but only a quite small cohort unfortunately. https://www.sciencedirect.com/science/article/pii/S1015958415001244 This is also a good piece I referenced which co...
by Rock_Robster
Mon Feb 12, 2024 12:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 4185

Re: New guy with old questions.

I guess everyone has to make their own decision here based on risk and benefit, but I’m inclined to agree with RP that a 2-3 month chemo break before surgery is more risk than I’d probably be prepared to take on. A month is quite normal, and I’d probably be ok with stretching it a couple of weeks fu...
by Rock_Robster
Sat Feb 10, 2024 8:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please critique my protocol
Replies: 7
Views: 793

Re: Please critique my protocol

Well it’s quite personal as you need to make your own decision based on the benefits vs risks, and what you’re prepared to commit to both in terms of pill burden and financially (some of those are not particularly cheap, especially the compounded meds). But I’d say they’re all worth looking at. For ...
by Rock_Robster
Fri Feb 09, 2024 6:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please critique my protocol
Replies: 7
Views: 793

Re: Please critique my protocol

All looks very reasonable to me. You might be interested in some of the studies around fasting, which suggested that ~13 hours was the point at which they saw potential impacts on cancer outcomes (studied in breast cancer). I don’t know if moving more toward a 16/8 is practical for you? Have you gi...
by Rock_Robster
Thu Feb 08, 2024 11:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please critique my protocol
Replies: 7
Views: 793

Re: Please critique my protocol

All looks very reasonable to me. You might be interested in some of the studies around fasting, which suggested that ~13 hours was the point at which they saw potential impacts on cancer outcomes (studied in breast cancer). I don’t know if moving more toward a 16/8 is practical for you? Have you giv...

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