Diane Marie

Regular user
Female 53 y.o.

Diagnosed S4 CRC Nov 2016 (age 47) after colonoscopy/CT/MRI/PETCT. LAR temp loop illeostomy and lung resection. One lung nodule left to watch n wait. 6 months adjuvant folfox no change to lung met. Bad side effects and PN delayed several treatments and stopped after 8 cycles. Stoma reversal oct 2017. Scan Jan 2018 lung met increased in size and two other nodules. Radiotherapy on largest met made it smaller but still there deemed unsuccessful. Scan June '18 all lung mets increased in size and nodules in liver. Told incurable and inoperable. Prognosis 1 year if no treatment or treatment doesn't work and up to 3 years if treatment works. Test for KRAS shows wildcard.
Silver lining can have Panitunimab with folfiri. Treatment started 17 July '18 one year to the day that folfox stopped!
Scan 17/9. Results today 24/9/18 mets in liver not showing at all. Mets in lungs still there but smaller. Not NED but I'll take that yay!. To continue with 3 months treatment and scans as long as it's working and I have good quality of life.
21/1/19 latest scan results show no new nasties and no increase is size of lung mets so classed as stable and chemo doing it's job.
08/04/19 latest scan result shows nothing new and again classed as stable. Long may it continue, fingers crossed.
12/8/19 latest scan results not reported but onc confident no new nasties from looking at it. So classed as stable and continuing with current chemo and panitumumab. Hopefully this won't change once he gets report.
16/9/19 saw onc today is still does not see anything on scan but my reports states lung mets have grown but still small and some bits in my liver but he can't see them. To continue with current regime and scan in 3 months. Doesn't know if chemo becoming ineffective or slow growing cancer but wants to continue. So not as good news as I'd hoped but as he said cup half full and not as bad as it could've been.
23/12/19 results of scan from Dec 5th. Stable nothing new and nothing showing in liver yay
20/7/20 after scan in March 20 which showed increase in lung mets size and new liver Met folfiri stopped and rechallenging with folfox. After 5 sessions latest scan results today shows stable lung mets and decrease in size of liver Met. Onc said it was a good scan so I'll take that. 4 more sessions then scan and possible break due to neuropathy, which I have had since first folfox 2017. Hopefully scan will show further stability or reduction fingers crossed.
1/11/20 it's 4 years today since my diagnosis. Had scan 17/9 and results 26/9. Liver tumour not visible, lung tumour small but still there and no new nasties anywhere else. So onc said really good scan better than stable. Yay. Have been taking turmeric, green tea extract and berberine in lieu of COC meds as I couldn't 'join' COC due to high liver ALT. Onc wanted me to have a break from chemo (Folfox) for 3 months then scan again but I'm too scared to do this so missing one treatment to give my liver chance to recover and my neuropathy to ease off a bit. Really glad with scan and to have made it to 4 years, hopefully will have many more years and good scans and my liver recovers enough for COC to take me on to add another weapon to my arsenal.
29/4/21 two more scans down. Both showing stability. I'll take that
30/7/21 latest scan results slight growth on 2 lung mets nothing anywhere else. Onc treating as stable and continue with current treatment.
20/8/21 I've been accepted onto the Care Oncology Clinic regime and have been taking the meds since 14/8. Hopefully it's another weapon for me. I am currently on chemo (Folfox) break so I can have a PET scan with the view to lung surgery on my two mets. Hopefully COC will keep things at bay until chemo starts again after scan and I can have surgery in the near future- fingers crossed.
29/9/21 results of PetCt show lung mets not really grown, but 3cm met in liver and poss smaller bits too ( not sure about this so getting scan report to confirm) no mets anywhere else. Onc says liver met was probs on previous ct scan but didn't show up as much. So have been told no surgery and back on chemo started again this week. Bit disappointed but not totally unexpected. Onc seems to think I'm one if those people who get progression when not on chemo so need to continue with it as long as it works and I tolerate it with odd small breaks here and there. Prognosis is I get as long as the chemo works but don't know what that is. So in the same position I was before the scan but feel like I'm worse off. Pondering asking for second opinion idk.
1/11/21 today it is 5 years since my stage 4 diagnosis. I have asked for a second opinion which my onc has sent to the Christie but I haven't heard anything yet. So on chemo and COC and hopefully this will keep things at bay. Scan due in December.
Scan result - compared to previous CT - showed liver and lung increase but compared to most recent PET only lung showed increase. So as there is some progression I've been taken off Folfox and will go onto Lonsurf soon. Currently having a break from chemo whilst waiting for news from Christie re trial which should be another few weeks, delay due to Christmas. So two options trial or lonsurf. I know lonsurf is the last chemo to try and it usually doesn't shrink tumours but keeps them stable for 3-6 months. So fingers crossed I'm eligible for trial and it works for me.
June 22
Not eligible for trial at christie. Lonsurf hasn't worked have progression in lungs and liver told to stop it. No further chemo treatments available. Prognosis 6-12 months. Have been referred back to christie for other trials and to Newcastle to see if there is anything available for me. Fingers crossed otherwise this is me.