Profile

Loz

Regular user
Male 31 y.o.
ABOUT ME

20/03/2019 -
Diagnosed following ongoing symptoms. A number of doctors initially diagnosed IBS and then Crohn’s - finally had small bowel MRI (clear) and colonoscopy and diagnosed with Stage 3 tumour.

22/03/2019 -
CT and MRI - showed no spread.

4/04/2019 -
Given plan of action, surgery with ileostomy then await histology results re chemo.

17/04/2019 -
Successful op and Sally the Stoma created. In hospital for about a week.

30/04/2019 -
Histology results, chemo required as lymph nodes involved. EMVI negative.

02/05/2019 -
First meeting with oncologist. 3 months Folfox, potentially with radiotherapy to follow to reduce chance of local recurrence.

20/05/2019 -
Port fitted and round 1

09/08/2019 -
6 rounds done. Side affects all manageable, mainly affected by fatigue and require injections for white blood cells taking a big hit. Round 4 reduced dosage to try help white blood cells recover. 1 trip to A&E for chest pains, checked heart and lungs and no reason found? Suspected stress.

Bowel specialist from Royal Marsden has looked at my results from surgery and does want me to have radio after chemo as well to help lower risk of local reoccurrence. Having 3/4 week break after chemo to recover.

02/09/2019 -
End of chemo CT. Some abdominal pain which onc wants to check out. Awaiting results.

27/09/2019 -
Now competed 3 weeks out of 5 radio. Going ok, not many side affects apart from a bit of nausea. CT from beginning of month flagged ‘something on the liver’ cue panic. One PET/CT and MRI later, confirmed nothing there 🤷🏼‍♂️.

11/10/2019 -
Finish 25 days of radio with cap. Treatment complete! ✔️ Sore feet but otherwise side am effects ok.

6/12/2019 -
6 weeks post treatment scans and meeting with Onc. Had MRI and CT and onc happy with both - all bloods ok. Next meeting in 3 months, March 2020.

12/02/2020 -
My surgeon surprises a stoma reversal appointment with 5 days notice! Op goes well, now learning how to retrain my bowel. 👎🏼

23/03/2020 -
Bowels post reversal still very up and down. A lot of urgent runs to the toilet. 3 month bloods checked and all ok. 1 year since diagnosis.

21/07/2020 -
Bowels much better and can just about choose when to poop! 6 month CT scan done since end of treatment, scan and bloods clear. 👍🏼

10/2020 -
Bloods checked and all ok. 18 months since diagnosis, 1 year since end of treatment.

01/2021 -
Next CT scan and bloods booked in. Scan came back all fine - bloods so good. CEA has taken a sharp rise. Oh fuck.

02/2021 -
It took another 3 scans to find the pesky cells. Pet and ct all ok. MRI found cancer in my spine, top and bottom. Booked in for 5 days of radio. Initially created a lot more pain, but settled after a few weeks and pain ceased in neck.

03/2021 -
CEA didn’t seem to respond to the radio, even though pain declined - so trying some chemo. Folfiri + cetux + zometa for bone strength. 6 initial cycles planned then see what’s next.

06/2021 -
Move hospitals to Marsden Sutton to be closer to home. Scans planned for first week of July then re reassess plan.

07/2021 -
Scans showed further mets in spine, so Folfiri treatment stopped. Plans to try 2 cycles of Lonsurf to see if that has any success. As cancer is currently only visible in bone, I’m not currently suitable for any clinical trials. Biopsy being retested in case anything does come up.

09/2021 -
New tumour found in the base of my skull. It’s quite large and probably been growing alongside the spine mets all along, just not found. 5 sessions of radiotherapy to try and stabilise it. Radiotherapy has caused some weird nerve changes, but hoping it buys some time!

12/2021 -
Results from gene tests show my tumour has a high amount of KRAS gene, but not mutation. This is why they think cetux didn’t work. Still ploughing on with Lonsurf - nothing new to report for now.