Hey all, my first post but I’ve read the forum for a while and have found it informative and supportive. I’ll try and keep this short. (I’ll use American date formats to try an avoid confusion).
My wife was diagnosed 6th Jan 2021 with Stage IV CRC. Initial diagnosis was from a colonoscopy (due to bleeding) with a follow-up PET/CT showing multiple liver mets, single lung met, and a single peritoneal met.
We live in Perth, Western Australia and it’s been a very long 25 months;
01/21 54yo F DX Stg IV – MMR Proficient, KRAS G12S NRAS/BRAF/EGFR wild type
(mets; 5 liver, 1 lung, 1 peritoneal)
02/21 high anterior resection, liver resection, peritoneal resection, port implanted
06/21 chemo stopped (8 rounds, 7 with oxi) – liver resection – 1 met non-resectable (section 4A)
08/21 FOLFOX – not oxi
08/21 SIRT left side liver
10/21 chemo stopped (14 rounds total)
12/21 Thyroid cancer confirmed (second primary – papillary with hurthle cell involvement) – thyroidectomy)
03/22 PE (bilateral subsegmental) – Clexane prescribed
05/22 SBRT lung met – 4 treatments
06/22 Krukenberg tumours discovered (bilateral oophorectomy, hemoperitonea during surgery requiring blood transfusion)
10/22 Microwave RF ablation on liver met (post RFA PET/CT showed residual disease)
01/23 Microwave RF ablation on liver met (cancelled in theatre due to more liver mets discovered on live CT)
And this is where we are now; the cancelled liver ablation was 01/18/23. She hasn’t been on chemo now for 14-months and she is relatively healthy and active.
She had a PET-CT on the 12/18/22 and using ‘weasis’ I can compare this CT to the CT during the cancelled ablation. Within 4 weeks, 5 new liver mets have shown up with one measuring 18.5mm they are all on one side of the liver.
We haven’t heard anything yet from our specialists (which is concerning); I’m thinking there’s a disagreement (which is good) and it’ll be discussed during the MDT meeting on Tuesday.
My first instinct is to push for surgery (we understand chemo will be restarted; most likely with an EGFR inhibitor like cetuximab; her liver has regrown from the previous resections and from what I understand they can remove the entire left side. If her current surgeon isn’t willing to perform the surgery (he is awesome and we trust him, has previously said that it would be “tricky”) we will ask if he knows someone who will.
Apart from that; I do like the HAIP therapy at Sloan Kettering, we’re not wealthy but we could find the funds to get to NY and pay for the treatment. My concern here is time; if these mets have all popped up within 4-weeks; something needs to be done quickly.
Some notes (mostly for Australian readers):
- Chemo@home is awesome, reduces stress and risk of infection.
- If you don’t have private health, get it after being diagnosed (they can’t refuse or charge more because you have cancer) – you may not be able to use it for 12 months, but when things get tricky it’s golden. One hospital she stayed in was AUD24K per night.
- SKG has a cancer care card, if you have one they’ll bulk-bill your MRI’s (PET/CT’s are always covered by medicare but you only get one free liver MRI per year)
- Hollywood private hospital now has an emergency entrance; if you have the right card the ambo’s will take you straight there.
01/21 DW 54F mCRC IV – MSS KRAS G12S NRAS/BRAF/EGFR wild
mets;5 liver,1 lung,1 peritoneal
02/21 high anterior+liver+peritoneal resect+port
06/21 chemo pause (8 rnds, 7 +oxi) liver resect - 1 non-resect 4A
08/21 FOLFOX -oxi
10/21 chemo pause - 14 rnds
12/21 Thyroid cancer - second pri – thyroidectomy
03/22 PE (bilateral subsegmental) – Clexane
05/22 SBRT lung met x 4
06/22 Krukenberg tumours - removed, hemoperitoneum+transfusion
10/22 RFA liver
01/23 RFA liver - canned, liver mets