The Colon Club

I’m sorry to hear of your struggles with the system - I was diagnosed in NL so have had a very small taste of it!

There is a decent argument that PET isn’t very useful for at least 2-3 months after radiotherapy, as there will be a large amount of inflammation and scarring to contend with. CT can still be hard to read (eg ‘dead’ lesions may still show as image artefacts - possibly forever), but would be the usual approach and a skilled radiologist should be able to draw some preliminary conclusions and monitor ongoing interval changes. A ‘blurry’ CT sounds more like bad radiography than anything else to me… however I’m guessing they weren’t rushing to offer to repeat the imaging?

Overall my rad onc said interpreting response to radiotherapy - particularly to non-visceral targets like lymph nodes - can be a bit of an art form which often plays out over multiple scans in the 6+ months post-treatment. My nodes haven’t really shown much pathology on scans since surgery and SABR radiotherapy, though I suspect no-one quite believes they’re entirely disease-free.

Good luck as always.

Rock_Robster wrote:A ‘blurry’ CT sounds more like bad radiography than anything else to me… however I’m guessing they weren’t rushing to offer to repeat the imaging?

Overall my rad onc said interpreting response to radiotherapy - particularly to non-visceral targets like lymph nodes - can be a bit of an art form which often plays out over multiple scans in the 6+ months post-treatment. My nodes haven’t really shown much pathology on scans since surgery and SABR radiotherapy, though I suspect no-one quite believes they’re entirely disease-free

Thanks for your response Rob! It is appreciated as always. The radiologist was referring to the CT images from the radiotherapy so those were “low dose images” used as a guide to target the tumours.

Your answer gave us a lot more comfort because the radiologist was very vague in her answers and were just concerned that we were refused treatment due to cost. The system in NL is pretty much broken because we were told that insurance companies predetermine budgets for every hospital annually and they’ve to work around what’s allocated. It’s not uncommon that patients are provided the bare minimum due to limitations.

Hey everyone,

First of all, Happy New Year! I hope that you had a good break during the holidays with your loved ones

We just got back from the hospital, quick update on my husband:

- He had a PET scan on 7 Nov (after a lot of persuasion). Good & bad news: the radiotherapy worked very well, the infected lymph nodes around his chest were effectively irradiated and gone, however a supraclavicular lymph node was lit, assumption is it's the same infected one as 2019 which chemo suppressed but it's growing again. 0.6cm.

- His CEA has steadily reduced after the radiotherapy: 3.4 (20 Oct), 2.7 (7 Nov), 2.5 (30 Nov).

- Surgery on 13 Dec. Removed 5 lymph nodes. Unfortunately narrow margins, 1 positive and some positive cells found in the tissues in lymph nodes (approx. 1.4cm). His TMB his now HIGH (19 per Mb). So we will be discussing the possibility of immunotherapy. His oncologist mentioned this a few months ago: https://classic.clinicaltrials.gov/ct2/show/NCT05608044. I saw some members here are enrolled in this trial and it's now going into Phase 3. I don't have any details yet, hopefully we'll get better clarity next week.

On a personal level, I am slowly but surely going nuts. We are both currently seeing separate therapists. We did get a good break during the holidays in London (where we used to live), which is great! Really love that city.

I hope maybe immunotherapy will be the solution for my husband's long term survival. If you have any info on other trials, I would be grateful to hear from you.

Thanks so much for listening/reading

Siti

I had distant lymph nodes 4 years ago. Folfoxiri, surgical removal, intense radiation. I had full response to systematic treatment. NED for 3 years and no treatment for 3 years.

Hello members,

I noticed this forum is getting really quiet — is there a new place where people are sharing stories or are people are just staying away to keep sane after the pandemic? For me is certainly the latter, I went on antidepressants last year as it was rough.

We moved continents early January this year to be in the sun as my husband struggles with the windy cold Dutch weather.. also to be close to my family for support.

My last update; my husband had narrow margins.

So he went back on Ox + TS1. Oncologist hope it would work again but it didn’t work after several rounds. He then started Folfiri + panitumumab. It was rough! Classic breakout till the point he didn’t dare step out in public. He lost a lot of weight and was completely miserable by the end of 2024 with back to back chemo for so many months. The 2nd line chemo worked well, so he took a break from December to March, completely off treatment.

In Feb 2025, his CEA began to creep up again. His CT scan show no disease except possibly small progression/swelling of the nodes between the lungs. It was inconclusive but since his CEA was rising, they assumed that there was minor progression, he then started Lonsurf + Avastin in March.

Side effects were severe fatigue and abdomen cramps. He had diarrhoea, nausea and vomiting too the last cycle. His WBC count went down to critically low 0.4, he took 7 days of jab to stimulate the bone marrow to produce more WBC.

Earlier this week he had his scan, his CEA is now down to 2.4 and the swelling between the lungs have shrunk. It worked incredibly well!! He will meet his oncologist next Thursday to discuss next steps.

He would like to have some maintenance treatment but we have no idea what. Do you guys know what would be recommended at this stage?

I’ll keep everyone posted.

I am glad to hear that the Lonsurf + Avastin worked! While there is clinical data suggesting it's effectiveness, it's often hard to find real life examples (on the forum, facebook pages, etc.) of people having success with it.