I guess it's time for an update on Andy's cancer treatment. It's 6 months since he was first diagnosed with stage 4, metasticised colorectal cancer. On diagnosis he was found to have a large tumour in his bowel which has burst out of the wall and three very large tumours on his liver. He started on a very brutal chemo regimen of 3 different chemo drugs plus a monoclonal antibody and after 8 rounds scans showed the tumours had shrunk back by nearly 50%.
This was great news, but like everything in our lives it seems, it's never straightforward. Here's Andy's facebook post explaining what's happening:-
Met with the Liver surgeon to discuss the scans and the options going forward.
On the plus side the extra Chemo has gained a little more shrinkage, but the complication is that because the tumours are on different parts of liver and in awkward positions close to the hepatic blood vessels it can't be resectioned at this time. What I thought might be straightforward debulking means we have quite different options going forward starting with 4 more rounds of Chemo, deep joy!
What's good is that afterward there are 3 different options for surgery, radiotherapy and chemo, each in different combinations and timescales with exciting things like 'Cyberknife' and 'SIRT' (radioactive microbeads). It's good because a couple a years ago this wasn't available and I'd be going home with a palliative plan and a bottle of Heroin. All explained by my new fabulous Greek surgeon, a combination of Russell Crowe rugged appeal, George Clooney suave and a fondness for English vernacular as shown when explaining the high risk with Liver surgery with a 20% mortality rate by saying 'it's a good chance it will go tits up' all in a delightful Athenian accent. Oh and he's very good at his job. We liked him straightaway.
So back to Captain Chemo starting next week for another 2 months and then scans and plans. It is really hard work doing it and losing feeling in my hands and feet are irritations along with not being able to taste red wine, dammit. Not good for my liver anyway so hey ho. So much time to do things but too tired to take advantage but to be fair there has been loads to enjoy too.
What is also good is that out of it I've really gotten really clear about how I've made this work, having a positive and realistic outlook with the ability to see different perspectives and that I've achieved what I set out to do to stage one with my wonderful coach before treatment started. It is living my beliefs, my values and using the innate things inside that all of us have the capability of doing and applying it.
It's 5 months since diagnosis and the majority of that spent feeling fatigued and sick, but without Steph this positive state and confidence would not have happened, as much as I can look after myself mentally, she has been the driver of everything to enable me to do this and to brilliantly deal with our already 'complicated' life. I am beyond grateful for that and to you my friends who have been there with me in so many ways, including the lunches!
So happy days as I have choices and that's what it's all about, being able to choose to live the way you want and to drive forward whatever you think is in your way.
Onwards and upwards
The oncologist decided to tweak the chemo regimen to try and get some additional tumour shrinkage so Andy was moved to the Folfiri regimen (5FU plus irinotecan) , dropping Oxalyplatin which had been causing a lot of symptoms with peripheral neuropathy and changing the monoclonal antibody from Avastin to Cetuximab (he tested the gene mutation on Andy's tumours and because he has what is known as a wild type Kras mutation this drug will target the tumour and hopefully achieve even greater results - isn't science great?!).
So last week, Andy had round 9 of chemo - different set of side effects to get used to, less chemo fog, increased stomach cramps and the added indignity of the onset of teenage acne. He has been assured that the spots are a good sign, they have scientific evidence to show that in the case of cetuximab, skin reactions are a good indicator that the drug is doing what it is meant to, so a small price to pay I guess.
Andy, being a man who likes a statistic has been totting up some figures for his cancer journey to date:
9 rounds of chemo
Involving a total of 27 days tied to an infusion pump
160 days since diagnosis
104 days feeling unwell pre chemo and during cycles and 4 days emergency stay in hospital.
And 56 great days in between.
So now we are focused on getting through 3 more rounds of chemo then more scans with the resulting scanxiety that comes with waiting to see if the extra 4 rounds of chemo has done it's job. We will know by the end of May whether it's straight into liver surgery or some very specialised radiotherapy treatment. The aim at all times it to get to the point where the liver tumours are resectable and then to remove the primary tumour.
Everyone involved in Andy's care is very aware of a crucial date. Our trip to Glastonbury. This is an immoveable feast! As long term blog readers know this is my favourite place in the world and the place I go to in order to recharge my batteries and take some time out. A couple of years ago I persuaded Andy to come along too and despite his reservations, he was hooked.
This year there is a huge bonus, not only do we benefit from being able to use the disabled campsite facilities, but the headliner on the Friday is Andy's all time favourite band, Foo Fighters.
So now my mission is to try and get to Dave Grohl (lead singer of the Foo Fighters incase you didn't know and all round rock good and good guy) to arrange a meet and great for Andy at Glastonbury. In the absence of Make a Wish for old guys, I'm putting out a plea to anyone who knows how to get in touch with Dave Grohl - can you tell him about Andy please, yes he's got incurable cancer and he's an overall amazing guy, super dad and all that stuff, but he would want Dave to know about the night he went along to a secret gig in in London over twenty years ago to see a band that he listened to on late night sessions on Radio 1 while he was working away from home and that was it,he's been a Foo Fighters fan ever since.
So Dave, could you make Andy's year please - can you say hello when we get to Glastonbury this year? He'll be the guy with a lot less hair than he used to have and some dodgy post-chemo side effects, hopefully looking at two big surgeries when he gets back home but in the meantime having the time of his life down on Worthy Farm.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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