Hi there, wishing you all the best with the trial. I’ll keep an eye out for your updates.

I’m stage 4 braf, para-aortic nodes. I had folfoxiri and avastin, then chemo-rad to the node area. All finished Oct 2016 and so far no recurrence...

Keeping everything crossed it stays that way!!

Hi there! I have experience of both pills & pump and I found the pump much easier. I found the capecitabine made my the palms of my hands very sore, and along with the neuropathy from the Oxy it was pretty unpleasant. Plus I think you have to take the pills within a certain time of taking food w...

Pretty much identical scenario to me DE. I was told that as they don't know what they don't know with regards to these genetic mutations, watch this space and developments over the next 5 years may shed light. Just because there's no known genetic explanation currently doesn't mean that there isn't ...

Hi Tim, thanks for posting an update. I'm sorry and disappointed to hear that the recent results aren't as good as hoped. I'm always keeping an eye out for any news of how you're getting on, and wishing you all the very best for a positive meeting next week.

Thanks for your reply Jane. Sorry to hear about your recurrences, though your complete response to chemo-rad first time round must give you good hope for the effectiveness of your current chemo-rad treatment. My chemo-rad was on a nodal area and I'm obviously hoping that it's wiped out whatever was ...

I've recently completed chemo, followed by chemo-rad. I was told there's no known link between chemo-rad response & crc mutations, but I'm curious to hear if any of you out there with kras/braf mutation have had a very good/complete response to chemo-rad (hoping so!)

Thanks!

Hi there Sorry to hear about your PET result. I had a para-aortic node light up on a PET after my resection surgery in Feb 16. I had chemo and then radiotherapy on the area in question. I've had 3 clear PET scans since mid-chemo. Hoping it stays that way. Perhaps chemo & then radio could be an o...

Correct me if I'm wrong, but kras, braf testing doesn't make any difference to adjuvant chemo, you just get folxfox/capox. Which is why it's important for any metastatic disease to be picked up, and then other treatments like avastin, cetuximab can be added, depending on the kras, braf testing. Agai...

It might be a good idea to get a PET scan- I had more distant lymph nodes affected and they were only picked up on PET.

Hi there, I was also T3N2M1 (para-aortic node). The node hadn't shown up on a CT before surgery (in fact nothing has ever shown up on a CT for me) and was removed almost by chance. Post operative PET showed mild uptake on another 9mm PA node and I subsequently had 6 months folfoxiri and avastin, whi...

Personally I'd go for the most aggressive 1st line treatment you can, if there's a chance of a cure on the table (unless there are specific medical reasons not too). I was on folfoxiri + avastin for 12 rounds (minus oxy for the last). It was tough but so far so good (btw mBraf).

Good luck!

I'll be finishing treatment soon, and it's important to me to feel like I'm actively doing something to reduce the risk of recurrence. I've looked at what proper research has shown has a positive impact on recurrence risk: - have at least 4 cups of coffee a day (reduce recurrence by half??) - eat oi...

Hi Swirdfish. I think my affected para aortic node that was removed was 9mm. In your position I might be considering - could the node enlargement be a result of the radio ie inflammation? Are there any other scans you can get that might give a better idea? - can the node be removed during your surge...

Though I do remember the dr saying that PET scans soon after radiotherapy can give false positives, so might not be very reliable/suitable if that's the case (i hadnt had radio at that point)

Different types of scans have different strengths, and PET scans can sometimes pick up stuff that a CT doesn't (and maybe vice versa?). I had a CT that was clear and a PET at the same time that showed some activity in another para aortic node (one node up from the one removed during surgery). I had ...