Profile

DFTP

Regular user
Female 39 y.o.
ABOUT ME

SHORT VERSION

Husband - 38 years old at diagnosis
Stage IIIB - pT4a N1c V1 Pn0 R0 M0. Adenocarcinoma (3.5cm) of Splenic Flexure (?).
Preoperative CEA 12
Extended Right Hemicolectomy
5 weeks postoperative CEA 3
Baseline CT clear (2 weeks prior to chemo)
CHEMO - 8 Cycles of CAPOX (see long version below)
CEA rose throughout chemo from 3,4,5,7.
CEA result 2 months post chemo - 4
FBC shows significant drop in serum ferritin - CT and Colonoscopy brought forward

LONG VERSION

September 2020 - My 38 year old ("fit as a fiddle") husband was diagnosed with IBS after significant change in bowel habits and associated pain. Bloods and Calprotectin levels were all normal.

Feb 2021 - symptoms persisting with a new symptom of bleeding, albeit brief. GP didn't do bloods (?!) but did do another stool sample. We were never contacted with the results which I later discovered showed elevated Calprotectin levels. I also learned from his medical history that it was flagged as a 2ww referral but again, no one ever saw this through and we were never contacted. Private consultant also dismissed anything being amiss bar a haemorrhoid - told my husband he looked fit and healthy and sent him on his way....no bloods taken either - this could have been a real game changer in hindsight.

July 2021 - By now was suffering with severe restless leg syndrome at night and running times well down. Very tired and breathless. GP finally re-ran the bloods which showed HB of 90 and Serum Ferritin of just 5!! Urgent referral for Colonoscopy on 20th July (the time from the results of the blood test to the colonoscopy was 5 days (including a weekend) which was excellent).
Bulky tumour found in the Hepatic Flexure and cancer confirmed. CT scan done on 26th July and luckily all results ready for MDT the following day on the 27th. Called on the same day to confirm CT shows no spread to lung or liver but disagreed with the colonoscopy location and changed to tumour in the transverse colon. Met with surgeon on 4th August (his 39th birthday!) and extended right hemicolectomy with curative intent scheduled for early September - an earlier slot was available but low HB and iron meant he was not cleared for surgery. 2x Iron infusions so far to try and bring levels back up. Iron infusions brought his serum ferritin from 5 up to 292 and HB from 90 to 119...surgery is a go go!

September 6th 2021 - extended right hemicolectomy with both keyhole and open surgery. Discharged after just 3 nights. Good recovery so far but has knocked him for 6. Diet improving and starting to gradually integrate some much missed fibre back in two weeks post op. We await the histology.

September 21st 2021 - histology is in. Bulky tumour that had gone through the bowel wall. Interestingly, out of the 47 lymph nodes taken, all were clear. Clear margins too (40mm). Moderately differentiated adenocarcinoma. EMVI+. pT4a N1c V1 Pn0 R0 M0. Chemo is a definite due to high risk features such as EMVI, plus there were tumour deposits found lurking (hence the N1c in the staging). Final stage is IIIB. Appointment with oncologist 5th October. Hope to have more news on genetic testing then too.

October 5th 2021 - Oncologist confirmed 6 months of CAPOX. Unlikely to by Lynch but full genetic testing will be done. His notes say tumour of the Splenic Flexure - so now we are on the third location?! Will seek clarification on this as so far it's been moved from Hepatic Flexure, to Transverse Colon, to Splenic Flexure! Oncologist also ordered another baseline CT scan for which we await the results.
FBC all now showing to be normal and CEA down from 12 (prior to op) to 3 (5 weeks post op)

October 25th 2021 - pre chemo baseline CT clear bar some abnormal tissue showing around join which is suspected to be typical of post surgical settling. First infusion....

CHEMO
Cycle 1 - 100% oxy and 4000mg daily capecitabine started. Sore arm and first bite but otherwise a very smooth first cycle.
Cycle 2 -100% Oxy and 4000mg daily capecitabine. CEA 4. Neuropathy far more noticeable and sensitivity to cold increased. Fatigue also more intense. Ambulance called for severe pain in chest/stomach, vomiting, shaking, sweating etc. On arrival paramedics were tossing up between heart attack or sepsis. Thankfully neither once looked over in A&E. Onc suspects severe spasms across digestive tract and omeprazole increased. No further hiccups. Pushing on with 100% dose for cycle 3.
Cycle 3 - 100% Oxy and 4000mg daily capecitabine. PICC line fitted. Fatigue, PN, first bite, hand foot syndrome all much more intense. Another hospitalisation due to stomach issues - now thought to be two case of semi obstructed bowel due to post surgical adhesions. back to low residue diet to manage.
Cycle 4 - 100% Oxy and 4000mg daily capecitabine. CEA 5. All symptoms ramping up. Hands and feet very sore and blistered. Pronounced PN in face. Heavy fatigue.
Cycle 5 - 100% Oxy and 4000mg daily capecitabine. Same as cycle 4.
Cycle 6 - 100% Oxy and 4000mg daily capecitabine. CEA 7. Borderline pass for pre-cycle Platelet reading. Very difficult cycle. Yellow eyes and skin, confined mainly to bed, increased nausea, constant PN, 15 nosebleeds a day etc. On reflection - he shouldn't have been allowed to do this cycle at full dose. End of cycle bloods showed platelets that had tanked (57). Neutrophils also very low as well as HB. Failed bloods two weeks in a row so had a three week break. Platelets finally crept up to 76 allowing cycle 7 to proceed. Dose reduction finally offered.
Cycle 7 - 80% Oxy and 3000mg capecitabine (25% dose reduction). Far more manageable. Been able to use the exercise bike and work. Less napping, less nausea, less PN. Keeping fingers crossed that we can get through to the last cycle. Will be interesting to see what his next CEA is as it has steadily crept up from 3 to 7 since chemo started although no one seems to have mentioned anything about it?! Find that odd and concerning.
Cycle 8 - 80% Oxy and 3000mg capecitabine. Scraped through on platelets again. Found this cycle harder than the last. Hand foot syndrome very severe. CEA not taken so still in the dark about this rise.

Recovery from chemo has been slow but we're getting there. Hand foot syndrome has persisted.
May 17th 2022 - call with surgical team. They hadn't spotted the CEA rise either!! When I brought it up she rather hastily arranged a follow up CEA test. My husband has been stating to feel tired in his legs again so asked if we could tag on a FBC - not sure why we're the one having to think of all this!
June 7th 2022 - Blood results. CEA is back down to 4 (had risen to 7 back in Feb) so that is a relief. However, his serum ferritin is now at 20 (hb at 126 - although it was around this mark throughout chemo - not sure serum ferritin was tested). At diagnosis it was 5 and then increased to 292 following two iron infusions just before surgery. As a result of this drop, they have brought forward his CT and colonoscopy (was meant to be in September this year). Now feeling very nervous indeed.