My hubby was diagnosed with cancer in June 2015. His primary cancer was never found but as he had extensive peritoneal spread it was assumed to be bowel cancer! We have been told he is Stage 4 and is inoperable and incurable.
June - Nov 2015
After 12 rounds of Folfox with Avastin (no dose reductions) scans are showing cancer has reduced by 80%.
Dec 2015 - Feb 2016
Capecitabine (orally) with Avastin - had to stop due to awful peeling and cracking hands. Switched to 5FU with Avastin which he seems to be tolerating well.
March 2016 onwards
Clear scans with no visible signs of cancer. Still having chemo for another six months. 5FU and Avastin every two weeks.
Another clear scan. Oncologist concerned it's all "too good to be true" and wants my hubby on maintenance chemo 5FU and Avastin for at least another year!
Clear scan. Oncologist wants hubby to have had two years clear on maintenance before he will think of taking him off this regime. Seems like a very long time but........!
Scans still showing NED. 5FU / Avastin now every three weeks for another 12 rounds. Hoping Mike can then come off chemo and will have to watch and wait.
No evidence of disease
No Evidence of disease
Side effects from 5FU making Mike feel pretty ill every cycle. Oncologist agreed to take Mike off 5FU. Avastin only every two weeks until March 18 when he plans to take Mike off everything and watch and wait!
PET scans looking great. All clear. Mike is now off Avastin too. Watch and wait.
Very pleased to report that Mike is still showing No Evidence of Disease. Feels amazing as he is now off all chemo and targeted therapy - so this is the first clear scan since he has been off all drugs. More scans in three months time so feel quite relieved that he is being monitored so closely.
Reoccurence! They have found Mike's primary cancer......only took four years. He has Appendix cancer. Onto Folfiri and Avastin to control the cancer and then hope to operate in 3-6 months. Mike will have his appendix and part of his bowel removed and then have HIPEC. We hope this will be a curative solution. Scared but excited at the same time.
Scans show shrinkage so back to see Jamie Murphy who has agreed to do an extensive laparoscopy after Mike has finished his chemo and had a six week break. Booked in mid January. In the meantime life is for living so we are off to South Africa as a family to enjoy Christmas and bring in the New Year.
PET CT scan shows that Mike is once again NED. We have been talking to Jamie Murphy about having extensive surgery - he feels that Mike would need a Proctocolectomy with a permanent Ileostomy for success. However, as there are no signs of peri mets, and Mike tolerates chemo pretty well he is going back on to maintenance of 5FU with Avastin as he feels this will suit his lifestyle better for now. With some chemo breaks in between treatments we can still go travelling and enjoy life as much as possible. Surgery always an option later on down the line.
Scans showing No Evidence of Disease. Yay...we are back to where we were 18 months ago! Mike now on 5FU and Avastin every three weeks which gives him a good break in between.
6th JUNE 2020
FIVE YEAR CANCERVERSARY!!!!!! Mike has made it to five years. Time to seriously celebrate and here's to the next five years....
NED. Chemo every four weeks. Doesn't seem so bad!
Small amount of uptake on the PET scan showing an increase of activity around appendix area and deep within the pelvis. Back to FolFiri with Avastin every three weeks. Spoke to Jamie Murphy re operation which would be a total colectomy and unfortunately due to where the tumour is he has said that after the operation alongside a permanent stoma and urostomy Mike would also have issues with mobility in his right leg. He would have to learn to walk again due to the tumour encroaching into his sacrum. Best case scenario he would walk with a stick and worst case he would be in a wheelchair! Hard to think this would be a good option right now but it may become his only option!
Mike is going to have Chemo-radiation for 5.5 weeks which will be a short burst of radiotherapy and capecitabine pills every day. After this treatment they are hoping that the tumour within his pelvic area will shrink enough so he can be operable or continue with chemo. We will just have to wait and see what the results are. Here we go again......
JUNE 2021 - Mike will be having PET scans and another meeting with Jamie Murphy (Colorectal Surgeon) to what the next steps are.
OCTOBER 2021 - Jamie Murphy performed total pelvic exenteration which took 18 hours. Mike now has a permanent bag for his wees and poos!!!! He will have to learn to walk again.
FEBRUARY 2022 - It has been long road for Mike and unfortunately he is still in hospital trying to recover from his operation. He managed to contract Covid whilst in hospital that set him back and bit and also having some big problems with the working of his new ileostomy - it just doesn't work basically. He had to have a second operation to clear an obstruction and now we are waiting for him to heal again and hope that that has done the trick. Four months in hospital........not easy but got to say he is really trying to get back on track and come home.
MAY 2022 - Mike finally came out of hospital mid-March and has now been trying to convalesce at home. Progress has been much slower than anticipated and I feel Mike is suffering with his mental health quite a bit. He is still being fed intravenously every day as struggling to eat and has some issues with his stoma but maybe it's just a matter of time. I am tying to keep myself busy and not feel too guilty about getting on with my life but it's hard. I'm hoping and praying Mike will turn a corner soon and be able to start to live his life a bit more.
In amongst all of this we had a complete lifestyle change. I researched food stuffs and supplements. We have limited our diet so much less dairy, meat, sugar, refined and processed food. I have added in turmeric, vitamins and minerals, lots of leafy greens (in fact anything green) and much more. Have started cooking fresh food every day. Hubby is exercising and we are trying to enjoy life as much as possible. Since his diagnosis we have been to Dubai, Italy, Skiing in France and Thailand. We have even managed to build a house, see two kids off to university and spend quality time with family and friends!!!
I feel that positivity is key and we have a gorgeous family with three amazing young adult children so a lot to live for.
CANCER IS A WORD - NOT A SENTENCE!