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kawa909

Regular user
Male
ABOUT ME

41, male
Stage 3, BRAF V600E mutation, TP53 mutation, serrated polyposis

April - July 2020: long-time runner used to doing a lot of miles but it suddenly started to become a lot harder, started getting short of breath at pace that would normally be very comfortable and sleeping much more.

July 2020 - blood tests confirmed severe anaemia (serum ferritin 5, Hb 7.9) and stools test showed traces of blood (not visible to naked eye).

Aug 2020 - gastroscopy and colonoscopy to try and find source of bleeding: none found but colonoscopy could not be carried out properly and could not reach right colon as bowel prep solution didn’t work effectively. CT scan thorax abdomen pelvis with contrast showed nothing untoward.

Sep 2020 - after a couple of iron infusions my Hb had risen to 10 and I had another colonoscopy since the source of bleeding had still not been found. This time bowel prep was adequate and they were able to reach right colon where a tumour was found which I was told was highly likely to be cancerous. Some polyps in transverse colon and left colon also identified but could not be removed during the colonoscopy due to risk of seeding from tumour cells. CT scan a few days later and the biopsy results confirmed colon cancer (adenocarcinoma) in the right (ascending) colon.

Oct 2020 - right sided hemicolectomy via keyhole surgery to remove tumour. Spent 6-7 days in hospital post op with recovery/discharge delayed by severe nausea in first few days and then lack of bowel movement. (The polyp in the transverse colon was included in the resection field as very close to right colon; the polyps in the left colon - one of which has low grade dysplasia - will be removed via a polypectomy in due course.)

Nov 2020 - recovery going well with lots of walking and exercise bike, and now started running again. All foods seem to be fine and bowel operating normally. Histology results now in confirming Stage 3 (IIIB) cancer T3/4 N1b L1 V1 Pn0 M0 R0......2 of 28 lymph nodes positive and venous invasion so EMVI +ve. Grading - poorly differentiated cells. Tumour was 65mm and removed with clear resection margins (R0).

Dec 2020 - bloods and DPD enzyme fine so started 3 months CAPOX chemotherapy treatment on the 9th.

Genetic testing being done given my relatively young age and multiple polyps. Separately have found out following tumour tissue testing that I have the BRAF gene V600E mutation (c.1799T>A p.(Val600Glu)) and am wild type for KRAS. Note the BRAF mutation is an acquired mutation not genetically inherited so not tested for in the genetic testing panel of genes (results take several months so not expecting until April / May 2021).

CAPOX Cycle 1: (Dec 2020)
- pre cycle CEA 1.9
- vomiting on evening of infusion (from the oxaliplatin) followed by nausea for next couple of days so was told to miss a day of cap tablets until vomiting had stopped
- a little tingling in face when outside plus eyes ‘gluing shut’ temporarily, first bite / lock jaw which improved gradually....all gone by end of week 1
- taste buds not too bad but less keen on sweet stuff and chocolate especially took a while to like again
- no tiredness or fatigue, felt completely normal other than the above and no side effects at all from the cap tablets (think stomach pain in recovery week was unrelated to chemo)
- hit my target of 300 miles running total for cycle 1 (pretty much my usual pre cancer mileage of just over 100 miles per week)....felt very good and getting fitter week by week after October’s op

CAPOX Cycle 2: (Dec 2020/Jan 2021)
- pre cycle CEA 3.2
- no vomiting from the oxaliplatin this time and only v v mild nausea on day 1...seems like the addition of Alprepitant (Emend) to the anti sickness drugs (taken together with Ondansetron) did the trick.
- oxaliplatin-related neuropathy / cold sensitivity significantly worse this cycle. Tingling in hands and toes inside at room temperature (nothing in feet in cycle 1 and only minor in fingers when outside). More tingling in face when outside plus eyes ‘gluing shut’ temporarily, first bite / lock jaw again. Doing some tasks indoors could feel tingling eg typing, scrolling on phone, chopping veg, tying laces etc though still doable but some persisted through most of the cycle.
- taste buds noticeably worse than cycle 1 as sweet stuff could not enjoy at all till about day 10 at earliest....finding savoury stuff like omelettes, chips, pizza, bread and butter, Thai stir fries, curries were particular favourites in week 1.
- this time two side effects from the cap tablets, hand and foot syndrome but just on feet involving a few blisters on toes and redness / itch on soles of feet. Had been using E45 lotion but GP prescribed me flexitol 25% urea cream which improved the redness in very short order and kept things under control. Hence only minor inconvenience and nothing bad enough to stop me running as no real pain from it. Also around day 13-14 got slight mouth sore and couple of ulcers but nothing too bad.....awaiting feedback from oncology if there is particular mouthwash to be prescribed.
- no tiredness or fatigue, felt completely normal other than the above
- hit my target of 300 miles running total for cycle 2 (pretty much my usual pre cancer mileage of just over 100 miles per week)....felt very good again....did have to wrap my hands in plastic bags with 2 pairs of socks on top to keep the heat in (better than gloves as lose heat through fingers otherwise) whilst out running given worse neuropathy and colder than cycle 1.

CAPOX cycle 3 (Jan/Feb 2021):
- pre cycle CEA not taken this time
- doseage of oxaliplatin cut by 25% due to significantly worse neuropathy in cycle 2 and persistence of some of these symptoms beyond day 14 (hence cut in line with drug guidance)
- doseage of capecitabine also cut 25% as even though I didn’t find hand and foot syndrome much of an issue in cycle 2 the oncology doctor examined my feet in the video call and said that the blistering on toes makes it grade 3 hence doseage cut required in line with guidance. If things don’t materially worsen this cycle I will ask about doing an extra cycle of just the tablets after my four CAPOX cycles are done.
- no nausea from infusion, arm where had cannula much more painful as lots of tingling at room temperature all up the arm but gradually improved and went away after few days. Tingling in hands again at room temp so pretty much in line with cycle 2 - so think the cumulative effect of treatment has broadly offset the dose reduction - but seemed to dissipate quicker than cycle 2 rather than persist through cycle which was good.
- only started tablets on evening of day 3 as doctor wanted few extra recovery days due to the blisters and hence will had a few less recovery days at end of this cycle.
- no foot and hand syndrome or mouth ulcer symptoms this time
- again no tiredness / fatigue and running the usual 100 miles per week, feeling very fit
- had covid vaccine in recovery week

CAPOX cycle 4 (Feb 2021):
- pre cycle CEA 3.5
- doseage of oxaliplatin and capecitabine same as cycle 3
- again no nausea from infusion, tingling in hands again at room temp so pretty much in line with cycles 2 and 3.
- no tiredness / fatigue and did the usual 100 mpw of running and feeling great, fitness coming back all the time though do have a bit of muscle mass I need to replenish due to the lost weight post surgery and during chemo.
- no foot and hand syndrome or mouth ulcer symptoms this time
END OF CHEMO (oncologist and I agreed insufficient evidence to warrant an extra capecitabine-only cycle)

Feb 2021 - had CT scan during final CAPOX cycle given some evidence BRAF mutation makes you more resistant to standard chemotherapy hence oncologist wanted to schedule it earlier than normal rather than waiting till post treatment.
- scan results clear so NED
- but CEA rose again to 4.6 at end Feb so oncologist has brought forward next scan to June rather than Sep incase this is the first indication of a recurrence

March 2021 - results of genetic testing for inherited conditions showed no mutations but number (8) and type of my polyps indicates likely to have serrated polyposis (genetics behind this condition not well understood so no specific gene test for it but have been invited to join CORGI 2 research study looking into this further).

April 2021 - clean colonoscopy and no polyps to remove as all had seemingly been wiped out by chemo.

June 2021 - CEA down to 2.6 but CT scan shows thickening near anastomosis site in right iliac fossa region ..... but subsequent PET scan clear. Next bloods and CT in four months.

November 2021 - CT scan NED, CEA 1.8