Month: March 2016

It’s a tough job 007

It’s a tough job 007

Couldn’t resist blogging from the front of my Emirates plane tonight.   Wifi mid air, how inspired.   I’m in the final 2 hours of my 26 hour journey home and, even in the most amazing first class in the sky, it’s still hard going.  I’ve also realised tonight, with horror, that this is not a monthly trip for me – I will have to be back on the plane to the UK, in order to make my first monthly follow up appointment in 3 weeks and 2 days.  That’s flying every 3 weeks for the next 7 months in order to stay on the trial.   I know I campaigned to get onto a trial on the other side of the world but the implication of this ongoing commute for my family, bank balance and my sanity is only just beginning to dawn on me.  But enough of being a whingeing pomme, as fellow Aussies would say.  Let me give you a glimpse into my journey.

I was collected from my friend’s house by Qantas in a bullet proof BMW M7 sport and, whisked to Heathrow, well whisked is not exactly the right phrase given we were stuck in Easter weekend traffic for 3 hours, but at least I was stuck in style.  My driver told me how he takes the likes of Angelina Jolie and Brad Pitt and they have a fleet of bullet proof cars for transferring high security clients – not sure how I got one but was nice to feel well taken care of especially as  I was feeling pretty rough.

Cycle 6 had not gone well the day before.  I had another allergic reaction to the obinutuzimab and, no matter how hard we tried using steroids and anti-histimenes we could’t get more than 6mls an hour into me without me getting the itching sensation.  More worryingly when the rate was increased to 25mls an hour my reaction was becoming anaphylactic so we had to stop. It meant I only got 25mls of the 1,000mls of cycle 6 into me.  Was disappointing but it was the right call to stop and as you can see in this picture with my friend Camilla I look tired but pretty relieved that it was all over.

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After 6 months of combination therapy this was my final day in hospital.   Now I just take my 4 venetoclax daily and hope to get into complete remission and to a level of no detectable disease.  It was such a relief for it all to be over and I book ended it with a photo of myself with my new trials nurse Berta, matched with one with Sam taken on the first day of treatment – what special people in my life.

 

I woke up the next morning at 6, my throat and chest still sore from the obinutuzimab reaction. I’m amazed I got any sleep at all given I’d had 80mgs of Dex you can see how wide eyed and scary I look in the photo above.  I was quite groggy and made myself breakfast and put my box of venetoclax on the table ready to take after it (I forgot my trusty pill boxes this trip).  Somehow I managed to get distracted (could blame anything from copious amounts of drugs to jet lag) but I ended up taking my dose twice.  At first I couldn’t work out if I had but when I looked in the container I could see there weren’t enough tablets so panicking I quickly rang Barts as 800mgs of venetoclax is quite a jump from my usual 400.  I was told to drink lots of water, take a piriton and come in if I started getting any major symptoms.   This was all around 8am.  By 2pm I was bright red.  Kept in touch with the hospital and the advise remained the same.  Of all the days to do this it had to be when I was desperate to be on that flight to get home for Easter.

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The venetoclax would have had its peak effect around the time I first started becoming flushed so I was given permission to board the flight but had to alert the Qantas staff to keep an eye on me.  I kept drinking water and taking piriton and paracetamol and had to forsake the champagne.  Barts told me to skip the next day’s dose which meant I wouldn’t be taking anything while I was flying.   There are clinical trials for Lymphoma patients on 800mgs so I wasn’t too concerned, particularly given I have very little detectable cancer left so TLS is no longer an issue, it just wasn’t the time to have this additional worry.

The difference in the ticket price was definitely warranted on this journey particularly given it’s Easter school holidays and even business class is packed with beautiful snotty nosed faces.  I cannot afford to pick up bugs on this journey as that Spanish flu virus showed my immune system is not strong enough to shake them off and I don’t want to be permanently sick.

A friend of mine said I’ve just got to consider this period in my life my job – it’s my job to get well, to be there to be a mother to my children and, if my job means a massive ongoing commute to the other side of the world, then I just have to join the ranks of the Deutsche bank executive in the seat behind me.

So here I am a couple of hours out from home, tired but pleased this week is over.  I’ve just had my on board shower – check out the bathroom – it even has underfloor heating!  How am I ever going to turn right on a plane again?

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And for the makers of venetoclax, Abbvie, here’s a little picture of their life saving drugs travelling in style with my apologies to the trial sponsors Genentech for the overdose and my body deciding it had had quite enough of cycle 6.  Landing in Melbourne now and I’ll get home in time to get on with my other job of making my children pancakes for their breakfast.  Happy Easter everyone.

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The yellow brick road

It’s so good to be home, I almost need to shout it from the rooftops – it’s just so good to be home.   I was very emotional when I landed in Melbourne two weeks ago.

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As my plane soared above the city, I felt a lump in my throat and tears ran down my cheeks (too much crying lately) as I remembered that when I left I didn’t know if I’d ever get back here.   It’s been an incredible journey and I still can’t believe how far I’ve come.   I was given a very warm welcome home and, after only a day, it felt like I’d never been away.

This time last year I was preparing for transplant, I hadn’t been to America since 9/11, I hadn’t met Professor Gribben and I had no idea I would be living in London only a few months later and returning to my old job as a journalist at the BBC.  It still blows my mind, totally crazy.  But I repeat – it’s good to be home, as surreal as all this is.

Last week I got to see Professor Ritchie for the first time in 8 months.  He is very happy with my progress and thinks the key will be my bone marrow biopsy which I’m having in a couple of weeks time.  I get the results of that on the 6th April.  He still thinks the London trial is the best option for me and reiterated that I will only be able to keep taking my wonder drug venetoclax if I stay on this, even if it means monthly commutes to the UK from Melbourne for the next 8 months.  Ironically of the fewer than 200 patients on the drug worldwide, 80 of them are on it in earlier clinical trials at the Royal Melbourne and Peter Macallum Hospitals, and they have more experience of treating patients with it than anywhere else in the world.   We’re trying to come up with a plan to reduce the number of monthly flights but ultimately, whatever happens, I have to stay on the trial and I’ll do whatever it takes to stay on the drug which has given me my life back.

I decided to kickstart my journey back to normality with a return to work the day after I arrived home.  I’d been very fortunate to be offered a new job while being treated in London so went into my new office in Collins Street in Melbourne, suited and booted and more excited than I could imagine by the thrill of the daily commute on the train.  I definitely had a cheshire cat appearance as I looked at my fellow commuters.  How funny to appreciate the overcrowded train as it chugged into the city.    I had also been dreaming of doing the school run for months and I couldn’t have been happier standing in the rain, greeting the children with hugs and saying goodbye to them the following morning putting kisses in their pockets for later.  Once again I feel so lucky to be here…it’s the small things which I’m loving the most.

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I’m finishing this post off from Canary Wharf in London, I got totally distracted by work and spending as much time with the children as possible that I neglected to actually put this up.  I was a little anxious saying goodbye to everyone again, but it was an awful lot easier that the August departure…I still think kissing the children goodbye and getting into that taxi to the airport is one of the hardest things I’ve ever had to do.

I arrived yesterday and I’m having that “where on earth am I?” jet lag feeling.  Tomorrow I have a blood test and Wednesday is my last cycle of obinutuzimab.     I’m dreading it.  Last month during cycle 5 I had an allergic reaction to that drug and it was a very long, uncomfortable day.  Itching started on my palms and feet and then spread throughout my whole body.  It’s not one of the reported side effects of this new CD20 monoclonal antibody and it upset me to develop such a reaction so late in the game.  I was given extra piriton to help ease the symptoms and the infusion was slowed and stopped several times but it didn’t get rid of it altogether and I’m worried Wednesday’s reaction will be even more severe.  Professor Ritchie said to make sure I’m given steroids this time.

I’m also worried because a number of phase 3 trials of another drug I had looked at closed this week because of adverse effects including patient deaths in the treatment naive cohort and it’s such a set back for the Gilead drug idelalisib.    Phase 3 is a whole more advanced and a lot safer than phase 1 so it’s just reminder me that, while I’ve had a smooth run so far, it’s not something I can take for granted.   It appears most of the patients had infection related deaths and I’m grateful for my twice daily anti-virals and the antibiotics which I still seem to respond to when I need them.  I had to have a 3rd course of amoxycillin this week to make sure I was well enough for the weekend’s flight – that flu virus from Spain was a corker (and I even had the flu shot before starting the trial).

So, to quote the former ITN newsreader Reginal Bosanquet, “Let’s get through Wednesday”.   I’ve treated myself to a first class flight on Emirates on Thursday so, if I’m well enough, I’ll be heading straight home that night to ensure I’m back with the children for Easter.  This one is a real whirlwind trip with the promise of chocolate at the end of it.