My gorgeous supportive Husband 45 had been treated by gp for haemarroids for several months with bleeding.
We Pushed for urgent referral having lied and said he had lost weight (we read the NICE guideline for the trigger symptoms to get seen by a specialist. Colonoscopy end of nov 2018 & told bowel cancer immediately at that point. Following week diagnosed dec 2018 stage 4 (3cm rectosigmoid with large multiple inoperable liver mets). Prognosis at best 13 months. KRAS mutation.
Started folfiri boxing day 2018 after porta cath inserted with a plan to re scan in 3 months.
Husband had been well up to the chemo aside from occasional pain and bleeding so starting chemo has made everything feel so real. Im 41 and With 2 very young children it's been hard but they have kept us going and close friends, family and work colleagues all know what's going on and have been amazing.
We have decided not to let the cancer dictate our happiness and we try to be as normal as we can. Everyday we try and laugh about something.
We are very much hoping we are in the respond statistics for the chemo.
CEA pre chemo was 576 after 6 months of folfiri every 3 weeks in July it's now 3. CT scan shows 15-20 large liver mets have now shrunk to a few tiny mets. Whilst we carry on with the chemo we are having an MRI liver to see if ablation may be a consideration.
2nd July 2019....feeling fortunate and like we could have options and hope.
August- 4 remaining liver mets are less than 1cm each but in 4 segments of liver so remain inoperable at this stage. Continue folfiri chemo as been working so well
Oct 2019- staging scan shows liver mets still shrinking and for the first time the bowel disease is also getting smaller. Continue another 3 months folfiri. CEA hovers around 1 or 2.
2020 - now 3 small sub centimetre liver Mets and bowel tumour barely visible on scan
Feb 2020- exploring liver surgery but liver team say due to Mets position surgery is still not an option. Can consider ablation and ultra sound requested. Still some hope for us.
March- ultra sound scheduled for 30th and called today (27th) due to covid 19 measures it's has been cancelled. Totally gutted and hope that his chemo schedule isn't affected . Worrying times.
Cycle 28 completed and CEA remains 2.
5th May, consultant called to rebook the ultra sound as she was keen (as were we). Booked for the next day.
6/5/20:Ultra sound to consider ablation to liver- consultant can see no Mets. Liver appears clear on a macroscopic level.
CT (7/5/20 ) awaiting results. Could mean bowel surgery possible meaning a possible curative intent!
A week after the "all clear liver" the CT showed an area of concern in the liver so back to the liver MDT for a combined look at all the imaging
Delays getting discussed on the liver MDT who eventually decide another MRI liver is needed.
We had a call from the oncology consultant. The latest MRI liver shows Mets are still there and have grown a little. Liver MDT outcome unclear as to whether there is a option for ablation or not. The top liver guy is on holiday and she will speak to him next week and call us after. First time in a very long while my husband and I have cried together. Feels like such a huge backstep and feel the chemo had peaked and no longer working. Using all my resources to make a plan for a second opinion if ablation is not feasible.
5/7/20 turns out the 2 liver mets are now 10. Ablation not an option (which we obviously accept with this new info) but liver MDT tomorrow who are considering portal vein embolisation. Obviously not a certain but ah least the question is being asked and for that we are grateful. Face to face with oncologist booked for the 12th aug to discuss everything.
17/8/20 met with liver surgeon who offered to cut out all the lesions he could identified on the live MRI with some ablation also to the liver. He was very clear that it was not clear if this would be in my husbands best interest in view of the small Mets that he wouldn't be able to identify and ultimately they would grow. We have been placed on a waiting list to have within next 4 weeks.
18/8/20 need to have a PET before the op. This has made us anxious as yes it will give detail to the surgeon but it may highlight other areas of disease and mean that the surgery is no longer an option. We are anxious.
7/9/20 PET just shows the 5 known liver mets and the known bowel tumour. Nothing elsewhere. Huge relief. Plan: resection for 3 mets and ablation to the other 2. Were offered bowel op at the same time but all including surgeon felt would increase risk of liver infection and sepsis and liver abscess after so will have a 2 stage process. That's fine by us. Feeling more hopeful. Good trust in surgeon.
2/10/2020 liver resection and ablation. Was expecting 3 mets to cut out and 2 to ablate but disease has progressed and 6 were cut and 9 ablated. It's going to be a long recovery.
6 week on (mid Nov) super recover and colonoscopy shows original primary remains small with evidence of scarring from the chemo). MDT next week for a primary resection plan!
20 Nov 2020. Almost 2 years post diagnosis accepted for a bowel resection today. Surgeon want to make sure liver is ready so a few bloods and pre op assessment etc then should have a date fairly soon. Disappointing news that the lung has likely 5mm met having grown from 2mm earlier this year. Not sure of the plan for that yet. Bowel first
Bowel resection 3rd Dec 2020
3/12/20 bowel resection without Stoma. Discharged day 6. Now to work out what to do with the lung met!
Admitted 23-27 Dec with prostatitis
Met oncologist 6/1/21 likely 2 lung mets both same lung and lower lobe so if CT confirms would be open to RFA. Relieved
MRI Jan 2021- liver mets
CT jan- lung mets
No operable option.
Palliative folfox now as Folfiri stopped working July 2020. Totally gutted. Due to start march 2021 and exploring avastin.
3/3/21 first Folfox CEA 361. Very little side effects.
16/3/21 cycle 2 CEA 197
April/may 2021 lots of delays due to dental extraction
Nov 2021 peripheral neuropathy means oxilaplatin stopped. Plan to continue 5FU until Jan 2022 dictates new path. Option for lonsurf or clinic trail at that point.
Xmas 2021- headaches and dizziness with a&e admission revealing 4x3cm cerebellum met. Onc gave us weeks or less a bled, unless neuro surgeon willing to take a chance on us. Lead surgeon says yes as long as husband has the fight in him. Stayed admitted with surgery on 22nd Dec and discharged Xmas day to be with us in the evening. Miraculous and we feel so lucky.
On the cards now ?? SABR to mop up if histology advises. Then look at lonsurf or trial as long as no brain mets.
Jan 28th 2022 SABR not needed as margins clear. Looks like lonsurf trial is on the table but not till mid Feb 2022.
3 years on and a lot has happened but the respect and love I have for my husband is something else. He could have given up a long time ago but he continues the fight to keep us together as a family. We got this!
March 11th 2022 brain met came back and there's more. CT tomorrow to confirm I guess advanced disease elsewhere. Things moving fast now in a bad way. Trial will b off the table now and prognosis v poor. Not sure my husband will want to go through any treatment to prolong. Sad day
Ct/mri- a bit of progression everywhere but now in the right hip (awaiting radio) and brain met is back and more.
5/4/22: Birmingham SABR team today have said yes to treatment. Cant believe it
Meantime admitted with bowel issues/severe constipation and not absorbing analgesia. Spct involved so we do have support.
11/4/22- 3 treatments to the large brain met and its 6 friends!
14/4/22 radiotherapy to the right hip and L4 spine.
Admitted to hopsice for ongoing symptom management. Pain has been so bad, better control now we are here. Extreme lethargy worst part for husband. Keep reminding him, things will get better and this is the radiotherapy not the tumour burdon.
Symptom management achieved of back and hip pain but the liver has gone desperately wrong. End of life care now. We knew this day would come. We are ok, of course sad but holding strong to make these final days count as best as we can.
Rip dear husband 28-4-2022