If at first you don’t succeed trial, trial and trial again

FeaturedIf at first you don’t succeed trial, trial and trial again

About me:

IMG_6485

Diagnosed at 38 a few days before Christmas 2011 with my then 2 year old daughter on my lap, I was told I had Chronic Lymphocytic Leukaemia (CLL), an incurable disease where the average patient with my prognostic markers could expect to live for 5 years.  The average patient, however, was a 70 year old man.  A year later I became so sick I required treatment and had 3 cycles of a chemotherapy known as FCR.    My remission only lasted 6 months and it looked very much as if I was going to have to have an allogeneic transplant using stem cells from a donor to save my life.  This is a difficult treatment and, while, if it works the benefits are long term control of the disease, the risks are high and mortality rates and quality of life issues made this something I wasn’t ready for.   I began a global search for an experimental treatment after realising that my options in Australia were limited.   In November 2015 I began a clinical trial at Barts Hospital in London of two drugs which have not been used in combination before – one of these is ABT-199, now known as Venetoclax, which was ironically invented in my adopted hometown of Melbourne.  I feel very privileged and grateful to be on this trial and this blog is designed to help other patients who may choose this path down the track.   It will be a bit technical for my non amateur haematologist friends but the CLLers it’s aimed at will understand.

Creating meaning

Creating meaning

I read the most beautiful book the other day – “When Breath Becomes Air” by Paul Kalanithi.  I couldn’t recommend it more highly.   Try not to google as I read it suspecting but not knowing how it would end (and on that note if you do buy it skip the foreword for the same reason).   Paul was a neurosurgeon who was diagnosed with lung cancer at 36 just as his career was taking off.   The book is not so much about the cancer struggle itself as a quest to find the meaning of life – we are all dying, just some of us quicker than others, and Paul’s book is all about finding and creating meaning in life no matter how short yours might be and it’s the most beautifully written thing I have ever read…his voice is almost poetic in its honesty.  Do buy it.

images

One of my favourite biographies is “One Crowded Hour” by Tim Bowden which tells the story of acclaimed Australian combat cameraman Neil Davis who began every diary with these words written by Thomas Osbert Mordant during the seven years war of 1756-1763:

Sound, sound the clarion, fill the fife,

Throughout the sensual world proclaim,

One crowded hour of glorious life

Is worth an age without a name. 

I have taken this much loved book with yellowing and dogeared pages all over the world with me since I read it at university.  Aside from the fears for my young children I have never really been scared of death itself, I’ve more feared not embracing life to its fullest.  My BBC management mentor said he was worried I would burn out at a young age adding that no one ever lay on their death bed regretting not spending more time at work.   I strongly believe it’s better to regret the things you do than the things you don’t and I could never be excused of not living as if I might die tomorrow and that was true even pre cancer!    Forgive me for the soapbox adages but life is just too short not to live it and, whatever happens, I know I have.   My good friend Vikki Leffman in London, who was by my bedside on so many occasions (beautiful woman thanks again for that), said at one point it was as if I didn’t seem to believe I could die despite how desperately sick I was.  My faith has sustained me and I do believe that what is meant to be will be, I just tried to cheat my odds a little and buy myself time enough to see my children grow.     Ultimately I was at my sickest with misdiagnosed pneumonia in 2010, a full  year prior to finding out I had CLL (and I was so sick because I probably already had it).   I was lying in bed, unable to lift my head off the pillow, watching my babies playing in the hallway, my daughter crawling and the boys rolling around like tiger cubs and I really thought I was going to die.  A Doctor had been out to see me and had said I had the flu and to pick myself up but I remember very clearly thinking “I’m dying and I’m so sorry that I’m not going to be able to see you all grow up but I am so sick and I just need to go to sleep”.   The sense of calm I had at that point has given me enormous comfort over the years since.  By the time I ended up in hospital I was really sick and I was probably only a few hours from death had I not had medical attention.

As I move on with my life the inconvenience of a three monthly appointment becomes a necessity that I can deal with.   Last week I saw Con Tam at the Peter Mac here in Melbourne.  I hadn’t seen him for 6 months and it constantly amazes me how much changes with the science involved with CLL every time I do catch up with him.   He has always been the most fervent of my doctors in favour of the novel therapies and clinical trails and against transplant and we discussed when I might be able to stop venetoclax now that I have no detectable disease.   He thinks, like my other specialists, that I have to stay on it until there is an option for me here in Australia.   He says, if I do come off the trial, I am almost certain to have at least a 2 year treatment free remission and after that the new CAR-T therapies should be more established and they could be a good option for me if I become resistant to venetoclax (there is no evidence that resistance happens when you reach my stage but there are still very few who have been on this drug for more than 3 years).   My bloods are all still completely normal and I don’t think I will have another bone marrow biopsy until May.

I also spoke recently at Abbvie’s national conference in Sydney and had the privilege of sitting on a panel next to Professor David Vaux AO from the Walter and Eliza Hall Institute here in Melbourne whose work identifying the function of BCL2 in 1988 led to ABT-199 being developed.     I gave him a hug when I met him (note to self I must stop hugging scientists it makes them uncomfortable!).   Venetoclax received TGA approval here in Australia last month and I was exuberant in my levels of excitement while being interviewed by the ABC but unfortunately I still won’t be able to access it here until it is listed on the Pharmaceutical Benefits Scheme.  It’s before the Pharmaceutical Benefits Advisory Committee next week and I’m hopeful that, despite NICE turning it down for the NHS this month, the PBAC will understand how desperately this drug is needed by patients such as me.   The Leukaemia Foundation is on the case…

http://www.leukaemia.org.au/news/breakthrough-drug-approved-in-australia-but-pbs-listing-still-needed

Work wise I’m now working three and a half days at the Institute of Public Affairs – it’s such a dynamic and impressive place to be and I feel I am making a difference to help this very important think tank make its mark.  80 percent of the staff are under 30 and are set to change the world.   I’m buoyed by my days spent with these incredibly intelligent people as they begin their careers, the IPA is certainly an incubator for talent and ideas and I feel very privileged to be there.    They’ve also been so supportive of everything I’ve been through – they even let me have a few words in their last IPA Review which is the oldest Public Affairs journal in Australia.

http://ipa.org.au/publications/2623/how-red-tape-almost-killed-me

My next appointment is in London on the 10th May and then I’m flying to New York for the International World CLL conference – going to do some things with Patient Power and will hopefully get to catch up with Professor Thomas Kipps two years after my trip to San Diego to seek his opinion on what I should be doing next.     I spent my earlier life as a news reporter and producer in commercial radio and then the BBC telling other people’s stories so I still find it strange that I’ve ended up being part of one myself and I do feel I have a duty to share it and offer hope to those going through similar experiences.  In my 43 years surely the past two have been amongst the most extraordinary and I feel so very lucky to be here.

 

5 years on

5 years on

Today is the 5th anniversary of my diagnosis with CLL, a day that some describe as their canciversary, and this is really the point that I couldn’t have expected to still be here, and if it wasn’t for my clinical trial I seriously don’t think I would have been.  On the 20th December 2011 I walked into my haematologists office to be told there was a diagnosis – I had an incurable form of leukaemia and the average patient with my prognostic markers could expect to survive a mere 5 years.  My daughter was only 2, my boys 7 and 5 and that wasn’t long enough.   It was a few days from Christmas and this photo of me at the time was taken on Australia Day the month after.  By then I had started the steep learning curve to discover what was being done to get ahead of this disease and there was much science was working on.

photo-2

So here I find myself apologising for the fact that cancer no longer dominates my life and I haven’t updated this blog for some time.  Having said that I have the best update ever for all those reading this, newly diagnosed or not, because last week, as my miracle drug Venetoclax, received marketing approval in Europe, I was given the results all patients dream of from my last bone marrow biopsy a fortnight ago in London – I am MRD negative which means I have no detectable cancer using the most sensitive testing now available.  It has taken 12 months to get to this point but what a 12 months and I celebrated the news in the American Bar at the Savoy with my elegantly dressed doctor Professor John Gribben and my best friend in London Eddie, who I only met as I waited to get onto this trial and was with me all the way through – he’s another blessing to me.

img_0136

I’m still doing 3 monthly trips to London and am jet lagged as I type this.  The trips from Melbourne were monthly up until September, I’ve now started cycle 13, have no side effects and am back at work full time so, aside from all the travel, my life is completely normal.   Now that I have my own oxygen mask on I’m trying to help others access this drug and have been doing a little media…

ABC Link

The Project

On my September trip to the UK I added on a side trip to speak at the Oslo Cancer Cluster and the coverage made it into one of the Norwegian tabloids there

and last week I went to Abbvie’s Headquarters in a chilly Paris for the morning to meet staff  – many of whom are working on my drug so that was a real privilege tacked onto a second trip to Disneyland Paris with the family who accompanied me on this latest trip.

img_0152

As we toured Notre Dame my 10 year old son, Marlowe, asked me if prayer had ever helped me – I said it had and asked had it helped him.  He said yes Mummy when you were sick in London I prayed at St Paul’s for you to get better and now you are MRD negative.  I was choked that he understood the significance of the result and that he has gained comfort from it.  It’s been a dreadfully long year for the children and he apparently has prayed that the travel will stop now I’m well.   And what happens now I have no detectable disease is the big question.   The consensus is that I need to stay on Venetoclax for the foreseeable future.  I have no side effects and there is just not enough data at this stage to know what will happen if I come off it and how quickly I might relapse, or if I will respond to it again if I am able to restart taking it.  And that’s the biggest fear.  I have gone to extraordinary lengths to access this drug and there is no guarantee if I come off trial that I will be able to access it again.  It still doesn’t have approval in Australia and, more worryingly, Imbruvica – one of the other, more established, novel therapies which has been available on the NHS, has just been rejected by the PBAC here for a third time so we are now years behind Europe and the US in access to these drugs.   To keep taking Venetoclax I have to stay on trial and that means the trips to the UK must continue and so does the financial burden.

It’s all worth it and I can’t complain even for a second, over the past 5 years I’ve learned to turn negatives into positives, to try and keep an even keel with both good and bad news and overall to take personal responsibility for what happens to me, I couldn’t wait for the answer to come to me, I had to go out and find it – I’m very grateful to be here and thanks to those of you who have followed my journey for all your support too.  I will try not to leave it so long to update you in future.   Wishing you a very Merry Christmas and a Happy and Healthy New Year.

A tale of two scans 

I had my monthly pilgrimage to England for cycle 9 this week – my 5th return trip from Melbourne since the end of February. London was sparkling in the sunshine, like a lady in her Sunday best giving a glimpse of the show she’d put on for Her Majesty’s birthday just a couple of days earlier.

It was the first time I had seen Prof Gribben for a couple of months and I realised there isn’t a photo of us together on my blog so we took this for posterity.


John’s tan beats mine (every time). I still can’t believe how far we’ve come since that fateful meeting in San Diego last April and I’ll be forever indebted to him for helping me get on this trial and saving my life.

I was so looking forward to catching up with him because, amongst other things he had my latest CT results to show me. So here they are…this is a dissection looking down my body as if my head has been removed. You can see my spine, breasts and I got my sister Emily to colour in the enlarged lymph nodes in my neck from my trial screening scan last October to make the “spot the difference” exercise easier.

Bear in mind there are more than 600 lymph nodes in the neck and head alone and mine were all infiltrated with proliferating cancer throughout my entire body. The exciting thing is that last month’s scan shows no detectable disease – all the cancer has completely gone (to the level a CT scan can detect) and that is big news for a lumpy jabba the hut wannabe like me as it was the lymphoma which was going to kill me much quicker than my leukaemia. At my worst, pre chemo in 2013 my neck lymph nodes were larger than 5cms and were starting to strangle me. They were also enlarged under my arms below my diaphragm and throughout my abdomen. The fact that Venetoclax has cleaned out the lymph nodes is fantastic news for me and offers hope for other patients, not only those suffering from chronic lymphocytic leukaemia, but also other non hodgkin lymphomas too.

After seeing what my sister had done with my scan I asked her if she could colour code it red to make the cancer look more menacing – she’s a funny girl – this is what she sent back to me…

I’d arrived at Heathrow on Weds at 7am and had rushed straight to the hospital for my blood test. I met up with Berta and she did my bloods and gently broke the news to me that Prof Gribben wanted a bone marrow biopsy performed that day to look for Minimum Residual Disease – this is the test to see if my bone marrow has also been totally cleared out by Venetoclax – remember I have never had no detectable disease there so, if I can get to that stage, I should get a very long remission indeed and can stop worrying about Richters transformations and transplants. It might also allow me to come off the drug down the track and stop this insane travelling. If I don’t get complete clearance then there will be no chance of me getting off it and I’m much more liable to relapse early. Depending on the level of detectable disease if it’s not cleared completely then I may still have to have a stem cell transplant but that does feel like it’s gone on the back burner.

Barts has a policy of no sedation for Bone Marrows – I thought they were joking when they told me that in screening and it was by far the most painful thing I’ve had done in my 5 years of living with this disease so you can imagine how much I was dreading it. It was probably just as well I didn’t know about it in advance for that reason. In Australia sedation is routine but it does take extra resources, and reduces the number of procedures which can be performed in a day, so I do understand why the NHS isn’t quite so kind to us poor blood cancer patients.

There were two Doctors performing this one and I had to ask why there were two as I was worried one of them might have been training! As it was he nailed the local anaesthetic and, other than some minor discomfort and an inordinate amount of time it took to get good samples, 30 minutes later it was all done and I was very happy. It was my 10th and best bone marrow so far.

I caught up with the team at Cancer Research UK who organised the TV ad campaign and told me my ad is now running for an additional 4 weeks throughout June – Natasha’s hug has been getting great feedback and the “right now” campaign has been nominated for an advertising award at Cannes. I hinted if they needed a patient to accompany them to the ceremony I’d be happy to oblige. It was also a privilege to be able to show the hard working media team my scans and share my good news. The difficulty with filming patients on clinical trials is many of them are very ill and sadly not all have survived since the campaign started which is a hard thing for these wonderful women to deal with when they’re working so closely with patients day to day.

Finally celebrated with friends over cocktails at the Waldorf before I returned to Heathrow to fly home. Prof Gribben is going to Skype me with my Bone Marrow results in a couple of weeks and you’ll get them here first.

The end is in sight…on the plane home and thinking how I thought this trial would be an intense 6 months of my life but it will be over a year by the time I’m through the worst of it but I couldn’t be happier.

Venetoclax now has FDA approval which means patients with the 17P deletion (the most dangerous form of CLL) will be able to access it if they need it in a normal clinical environment in the US. I believe prescriptions will cost between $12,000 and $14,000 Aud per month which far exceeds the cost of my monthly trip to London where I get the drug for free as part of my clinical trial. Next week I get to meet its inventors at the Walter and Eliza Hall Institute in Melbourne (along with a camera crew) – I cannot wait!

A little update to this – my bone marrow biopsy results came back in June with my MRD at 0.01 – -almost negative but there were still some detectable cells.   It was a good result for this stage in the trial but I was anxious to get a negative result!

It’s been a while

It’s been a while and I must apologise once again for letting normality get in the way of a good story. Since my last update here I have returned to London for cycle 7. This involved a blood test, ECG and Echo to check the old ticker is still working and the collection of my month’s supply of venetoclax. I did that trip with 50 hours of travelling and 28 hours on the ground and I’m now sitting in the first class lounge at Melbourne Airport about to return for the start of cycle 8. I’m going for a new record of 20 hours in London before I reboard one of Qantas’s ten A380s home to Melbourne. Australia’s flag carrier has been very kind to me once again, and I’m at the front of first class on a points upgrade so travelling in style for the fourth month running which definitely makes it easier. I reach Platinum 1, their highest frequent flyer status after this flight (and it’s only taken me 4 months of flying to get there)…funny that I spent 9 years not leaving Australia and I’m now living this crazy jetset lifestyle.

So what have I been up to over the past 2 months? Well I’ve stepped up the hours I’m working in my new job, moved house, I now have fixed days to pick my children up from school for the first time in their little lives, my Mum has moved in with me (thanks Mum for everything)  and I have definitely started living as if cancer is a distant memory and it really is. Aside from the morning drug call with breakfast, life is completely normal. I’m sitting typing this with a beautiful glass of malbec in front of me and I’ve just had a massage in the spa and feel totally floaty – another glass of red and I won’t need that herbal sleeping tablet the Professor has said I can take to try to alleviate the jetlag. I’ve actually nailed the whole flying thing (touch wood) – last month I arrived back in Melbourne as fresh as a daisy and didn’t have any jetlag whatsoever. The next morning I drove my 9 year old to soccer – the month before I was so delirious I couldn’t drive for 3 days. Maybe it’s because I’m not actually in London long enough to adjust to the timezone there. Whatever it is long may it continue.

This week I have a work conference on Hayman Island in the Whitsundays off the Queensland coast so it’s a very quick turnaround. I arrive lunchtime on Tuesday in London, head straight to Barts for a blood test, ECG and a CT scan, then go off to Covent Garden to have drinks and dinner and drinks with friends then crash the night at one of my besties, Mike’s house. I’ll be collected by Qantas first thing the next day and fly out of Heathrow. I’ll reach Hayman on Friday morning, spend the weekend working before heading back to Melbourne to my babies. I have to say one of my Australian specialists wasn’t too thrilled about the idea of me working but, anyone who knows me well enough knows that it’s better for me to work than to be idle, and I think it’s all helping me to put the health stuff behind me – plus I’m only doing around 20 hours a week so am definitely pacing myself.

There’s been a little publicity this month. The Cancer Research UK ad campaign “Right Now” has been featuring my story in their TV campaign. It made me emotional to watch the filming they did of me again but I have to say, the care with which they have treated me and the children has been astonishing. That was truly one of the scariest days of my life…they filmed the moment with the children just before I took venetoclax for the first time and, even though I’m reassuring them, you can see I’m quietly terrified. They were very careful to make sure we were all happy with the ad and the communication has been fantastic. I’m pleased I agreed to help – they have certainly helped me.

The Leukaemia Foundation in Australia also featured me in their CLL/SLL newsletter – for those interested in the subject this newsletter is an excellent read and well worth signing up for as Nikki Shrimpton does a fantastic job of keeping on top of the latest research and I love her writing.

http://www.leukaemia.org.au/download.cfm?downloadfile=8100FA70-0B6B-11E6-82A1005056B60026&typename=dmFile&fieldname=filename&filename=CLLNews_May16web2.pdf

Patient Power also put some of the interviews they did with Professor Gribben and myself on you tube – if you’re not totally fed up of the sight of me – there’s lots of useful information in those for people considering clinical trials (moreso from him than me!).  There’s a whole series of clips you’ll find if you watch this one.

Even though I didn’t really want to have another CT scan (and actually refused to have it last month) I’m pleased I’ve been persuaded to have it tomorrow. It will hopefully confirm the Bone Marrow Biopsy result that I am in a Complete Remission – oh that’s something else I found out over the past two months (talk about burying the lead story!). At my sickest 81% of my lymphocytes in my bone marrow biopsy were CLL – the bone marrow biopsy undertaken in Melbourne immediately after cycle 6 showed only 0.0345% are now which is a very good CR (you might remember the CT scan after cycle 4 still showed some enlarged lymph nodes and that I had had a Partial Response rather than a CR). I also have a friend on one of my forums who may very well have reached a no detectable disease status after 3 years on venetoclax – it doesn’t matter how long it takes to get there but oh wouldn’t it be great to get there?! Fingers crossed for you Sue.

I think that’s pretty much me up to date. I’ve booked my flights for June and July’s trips but I’m really hoping the sponsor will bring forward the three monthly appointments to then so I don’t have to do the trips in August and September and only have to return to London in October. As much as I love catching up with my London friends, we are heading for the Australian flu season and I’m not looking forward to being on a plane during that. Keep your fingers crossed for me.

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.

image

 

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.

image

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?

image

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.

image

 

 

 

 

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.

image

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.

image

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.

“Hole” lotta love

barts

I’m sitting in clinic, balling my eyes out today, grabbing a Macmillan booklet on the emotional effects of cancer and turning the pages like a woman possessed.  It’s a good read if you’re in my situation – here’s the link to the PDF

http://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC11593Howareyoufeeling-theemotionaleffectsofcancerE3pdf20141006.pdf

It has not been a good few days for me emotionally. I’m feeling very overwhelmed – I blame going through 4 years of ups and downs on this blog to be honest. I’m missing the children so much. I think the high of having them here with me and doing all those wonderful things has led to this low. I just should be with them, doing all the things that we take for granted as mothers.

As other patients sitting here watch me nervously, I want to tell them it’s not cancer I’m crying about, in fact this is probably the longest time since diagnosis I haven’t worried about it. I really feel on top of everything medically and I’m waiting here to get my first CT results since the trial began – I’m apparently very very close to Complete Remission which, after only 3 cycles of Obinutuzimab and 2 months on the full dose of venetoclax, is remarkable. I just need to be with my children now – it’s breaking my heart not to be there for them. I’m sick of being strong and I’m cross with myself for feeling so low when I’m doing so well and lucky to be on this trial. #passtheselfpitybucket #atleastthisshouldhelpthesinuses

Update tonight – I got to see John pretty much after I wrote this and told him that the tears were just to help me jump up the list.  The Senior Trials nurse had come to move me out of the waiting room and I think he got a bit of a shock when he saw the state I was in, it’s not very me.  He thinks I may very well be in Complete Remission and that the node which is still slightly enlarged could be scar tissue.  He’s very happy with the way things have gone.  The coolest thing was when I asked him if I should wear a mask on next week’s flight back to Australia and he said no that would stop me being able to drink the champagne.  I do like him, he’s on my wavelength and gets what I’m going through.  He thinks I’ll get to CR and no detectable disease, I just need to have something which I’m not good at practising…patience.