Up in the air

IMG_1308Well I asked, practically begged Professor Gribben if the truth be told, to give me permission to take the children skiing in the Alps last week, their last in Europe with me prior to my 4th cycle of treatment.   He said, at this stage he couldn’t say no to me, and what a week we had in beautiful Courchevel.  It was perfect and all I had to do was remember to put a pill box in my pocket before I went off skiing for the day.  The fatigue has finally gone and all the fresh air did me a tremendous amount of good.    Who would have thought I could be having such serious treatment on the top of a mountain?   I hope this helps others who fear entering clinical trials…I have not felt this well for years.  It’s saying something when you have enough energy to wear a 9 year old boy out (see hilarious photo below)

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Tuesday was my 4th cycle of obinutuzimab and I was dreading it, particularly given how low I felt after the 3rd cycle but also because I am getting a bit over it all!   I suppose the better I’m feeling the more I’m starting to resent the fact that my life is on hold. I know I’m incredibly fortunate and I couldn’t be more grateful to be on this trial but I’ve now been here for 6 months and just want to get home.  It’s a funny rollercoaster of emotions having treatment.  I’m well enough now to just focus on getting back to Melbourne, my family, friends and work.  The day was long with a few hiccups as I’ve lost my trial nurse Sam (so sad!) and my bloodwork was identical to last month.  It’s all a sign that I’m having a good response to the treatment.   I’ll know more when I see the good Professor next week after an MRI scan (have managed to switch it from a CT) to see if there are any enlarged lymph nodes left where we can’t feel them.  I’m hopeful that there aren’t.

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I kissed my family goodbye yesterday and they’ve just landed back in Melbourne.  It’s time for the children to go back to school and I’m very thankful for the 9 weeks I’ve had with them here – something very positive after all the upheaval.   I’m hoping I might be able to get home immediately after the next cycle of treatment at the end of Feb to break up the gap for them, I don’t think we could cope with another long separation, but I will have to run that past the team at Barts – the 6th and final infusion is at the end of March so I need to be back here and well for that.  Then the monthly trips begin.

On the 6th day of Christmas my Trial Nurse gave to me

On the 6th day of Christmas my Trial Nurse gave to me

It has been a few weeks since I’ve updated this so I apologise but I think that it’s probably a very good sign that I’ve reached the stage in the trial where I can pretty much get on with my life and I’ve certainly been doing that with the children who are still here for another fortnight.

This time of year always feels like a milestone.  I mark my “canciversary” on the 20th December – that’s the anniversary of my diagnosis and this year marked 4 years since Dr Kenealy told me that the pea sized lumps in my neck harboured something which was incurable and could kill me.   A year later that exact week I was told I was so sick I couldn’t put chemo off anymore, flash forward another year and the news that week was that I was relapsing and 2014’s December update was that it was now time for transplant.   This year was the first in 4 years that I have had genuine reason to be optimistic and this Christmas was the best for years.   Because I’d been away from the children for so much since August I had also consoled myself a little too much in shopping for them so they were spoilt rotten but the highlight of the day itself for me was cooking a five course Christmas dinner in 3 sittings for the concierge who were working in our building to thank them for looking after me so much since I’ve been here.   It was so nice to do something for others on the day itself and I’m going to make it part of our Christmas tradition from now on.

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In terms of the trial my dose escalation to 400mgs of Venetoclax passed without incidence, a day very similar to the one described in my last update.  For the first week on the dose I felt a little fatigued and would get flushed a few hours later regardless of how much water I drank but it was manageable.   On the 29th December, a week after being on the maximum dose, I had my third cycle of obinutuzimab which was a day infusion of the latest generation CD20 Monoclonal Antibody.   It was the first time I’d had this drug since being on such a large dose of the venetoclax (I was only on 20mgs when I had the second cycle).  I was expecting to feel low for a few days after and I certainly was wiped out.  The fatigue was quite debilitating but I was still able to get out and about.  Until that point I had thought that I would have been able to work had I been in Australia (my measure of how sick I feel) but that week would have been a right off and I was concerned that it might continue.   My bloods were all ok – they’d dropped a little but my haemoglobin wasn’t so bad to justify the fatigue.

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It took a good week to start feeling normal again and I still get a post dose slump around 4 hours after taking the venetoclax – it’s comparable to the fatigue I experienced in early pregnancy and I do have to slow down at that point.  The recommendation is to take the 4 tablets on a full stomach within 30 minutes of having a low fat breakfast but I’ve found taking it after lunch suits me much better and, as this was the time of day I was having it during all my weekly dose escalations, I’ve stuck with it.   It means the fatigue only sets in around 5 O’clock which is the time I’m making dinner for the family, once I get through that I can just take it easy with them for the rest of the night so it is fitting around my lifestyle.  They all return to Australia in 2 weeks so I’m hoping when I get back on the exercise bandwagon that will help too.  Speaking of which, like many, I normally make New Years resolutions and as the clock struck midnight on the 31st December I went through a list of them in my head before giving myself a bit of a shake.  My poor body is going through so much I couldn’t possibly start starving it or making it work too hard in the gym so no massive changes for me this January – it’s time just to relax and be a bit kinder to myself.  One of the recent highlights was being given tickets to see Charlie and the Chocolate Factory by Cancer Research UK – the sets were amazing – you can see I look tired in this but it was a wonderful production – highly recommend it for those visiting London.

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I’m now over half way through the trial and am seeing light at the end of the tunnel. It helps now that I’m only in hospital once a month too – I’m almost forgetting the intense time while venetoclax was being introduced.   It was funny when Sam gave me a month’s supply as I walked out of hospital on the 29th knowing I wouldn’t have to be back, all going well, until the 26th January.

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The children all keep asking me if I’ve taken my tablets which is quite cute and their father gave me a pill box from Tiffany’s for Christmas so that is always with me.  If it wasn’t for the fatigue I could imagine taking venetoclax long term and, even if I can’t manage it better, if I have to stay on it it still beats the alternative.  The next milestone for me is my fourth cycle of obinutuzimab on the 26th January, which coincides with an all out NHS junior doctors strike so I’m not sure what will happen with that if it goes ahead.  I am booked in for a CT scan on the 2nd Feb to confirm whether I’ve had a complete response, my blood work and lack of lymphadenopathy rather suggests I have but we won’t know for sure until the CT scan looks deeper.  If there is no detectable disease radiologically then 8 weeks later (towards the end of March) I will have a Bone Marrow Biopsy after my 6th and final cycle of obinutuzimab to look for detectable disease.  This is the point that I’m praying I’ll get my first negative result in 4 years and can start returning to Australia – I’ll still have to come back monthly for a further 6 months for a check up and to pick up my next dose of venetoclax but that’s a small price to pay if my disease is under control, or fingers crossed (whisper it) gone.  You can remind me I said that when I’m at the mercy of Qantas and living with permanent jet lag.

 

 

 

 

 

 

 

Now you see it

I took the children to see the Illusionists last week – a terrific magic show at the Shaftesbury Theatre in London.  While I was trying to work out how the tricks were done it occurred to me that the real magicians in my life these days are the scientists who have created a pill which is so smart it’s eradicating my cancer while leaving the rest of me feeling pretty amazing.

I was escalated to 200mgs of ABT-199/venetoclax on Tuesday and that makes it sound like there was a procedure involved but I literally turned up at 8am for a blood test with Sam then went off for breakfast and returned at midday to take two 100mg pills which he had ordered from the pharmacy.  Because I was doubling the dose I’d previously been on he got me to stay in the day ward for a couple of hours for monitoring before I was allowed to head off for lunch, only returning at 6pm for a blood test.  This was a very easy day.

I have been expecting side effects almost every time I take the tablets but I’m starting to relax a bit.  The only side effect I’ve noticed has actually been a resolution to the wheat intolerance I developed around the same time as getting CLL.  I told Prof Gribben about it and he thinks it may have been caused by my B Cells and now that they’re being picked off it’s disappeared too.  Very strange but I’m delighted to be able to eat pasta and bread again with no pain (I’ll end up the size of a house if I keep going with them the way I am though!).

Within 24 hours of my dose escalation I was here…

 

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Who would have thought I would have felt well enough to travel at this stage in the trial?  Certainly not me.  I’m delighted to be able to make the most of my time with the children.  We spent a couple of glorious days in Disneyland and then a couple of days in central Paris.   Next hospital day is Tuesday when I’ll be escalated to my final maximum dose  of 400mgs.

So back to those scientists.   I wanted to know the names of those behind ABT-199 so I could thank them down the track so have been doing a bit of research into its origins.  The science behind the drug goes back over 25 years and the scientists behind it worked at the Walter and Eliza Hall Institute for Medical Research in Melbourne.  A discovery in 1988 by Prof David Vaux, Prof Suzanne Cory and Prof Jerry Adams led to the co-development of ABT-199 with Abbott Laborotaries (now Abbvie) and Roche’s Genentech creating the BH3-mimetic drug, designed to block the function of the protein BCL-2 which allowed leukaemia to become long lived.  Subsequent research with Prof Andrew Strasser, Prof David Huang, Prof Peter Colman and Prof Keith Watson explained much about how BCL-2 and related molecules function to determine if a cell lives or dies, contributing to the development of BH3-mimetics which kill and rapidly remove leukaemia cells by blocking BCL-2.   The work then transferred over to Prof Andrew Roberts who is the head of clinical translation at the Walter and Eliza Hall Institute who instigated the first clinical trial in humans in 2011.  Further work has followed with clinical practitioners such as the myriad of CLL experts I’ve been privileged to meet on this journey. Stand up ladies and gentlemen and take a bow – I hope to meet some of you one day to shake your hand and show you how your drug has changed the course of my disease and given me and my children my life back.  I’ll be leading the charge for you to be awarded the Nobel prize.  Thank you for all those long hours in your labs.

 

We’re gonna need a bigger pill box

We’re gonna need a bigger pill box

Well it was the third weekly dose escalation of venetoclax this week and I didn’t know what to expect.   The great news was I just had to report for my blood test at 8am on Tuesday, no overnight hospital hydration this week and, as it turned out, I got to spend most of the day outside just returning for protocol observations and a couple of blood tests at 4 hours and 8 hours post taking the 100mg pill – and what a big pill it is.  The 100mg pill is a slightly different colour yet again and doesn’t actually fit in my pill box so time to upgrade.

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I’ll be taking four of these a day with breakfast in two weeks time but for now it’s just the one and I’m happy to say there was no reaction, other than that induced by my restless night the night before.  I was dreading going on the drip again, my arm is still sore from last week, and I had to resist the urge to hug my nurse Sam when he told me it wasn’t required and just to keep drinking the amount of water I’ve been drinking.  I’m trying to get through at least 3 and a half litres a day.   Others have reported headaches at this dose and stomach upsets so I’m hoping taking the pill with a good meal and drinking lots of water will head that off and two days in that seems to be doing the trick.   I had another blood test yesterday which showed all my bloods are in the normal range so I’m off out and about doing lots of Christmas things with the kids – ice skating, panto, lots of theatre and shopping and I’m making up for lost time with some special Mummy and me days.

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I honestly had no idea I would be feeling this well at this stage in the trial.  I really hope the worst is behind me.  I won’t kid you those last 2 weeks were pretty intense but they were the only bad part of it and knowing that it was a temporary thing helped me get through it.   Venetoclax does have to be handled carefully in the early days when tumour lysis is an issue but the danger of that seems to be over for me now and the drug is certainly worth it.   One of the first brave patients to take ABT-199 four years ago said to me “imagine taking a pill every morning, having no side effects, the cancer is kept at bay and you get on with your life” that’s been his experience with the drug and he’s still in remission.  I’m hoping the combination therapy may also lead to a deeper remission and not having to stay on the drug indefinitely.   I’ll explain Minimum Residual Disease at some stage.

Meanwhile Sam has stopped saying “just a wee scratch” before he takes my blood to stop me flinching as those 2 hourly blood tests have left an indelible mark.  Get that PICC line people would be my recommendation…I wish I hadn’t had such an ordeal getting mine put in – I think, on reflection, I should have persevered, it would have made the past fortnight less of an ordeal (and I know Aunty Lynn and Aunty Pat, my friends from CLL Forum who’ve been on their own trials did tell me to get one!).  Will add a series of videos to the blog tomorrow courtesy of my friend Charlie from Patient Power who has just got back from the American Society of Haematology meeting in Orlando where there has been great news about Venetoclax.  It is an exciting time for all of us.

 

Bunny girl

Bunny girl
I’m on a bit of a high today so you’ve been warned – I feel a bit like the Duracell bunny and my batteries are showing no sign of running down.  It’s probably just the lack of sleep once again but I’ve now completed the second dose escalation of ABT-199 and the second cycle of obinutuzimab (the first time I’ve had both drugs together) and I feel fantastic.    I was admitted on Monday night for hydration, the same deal as last week, and yesterday took 50mgs of ABT-199/venetoclax and had 1,000mgs of Obinutuzimab infused.   While all that was happening this was going on…
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Cancer Research UK had asked for permission to film me for their Christmas advert – I wasn’t quite expecting a 3 camera crew, one of which was doing a “making of the ad” behind the scenes piece but it was all a little bit of fun and meant I got to see Professor Gribben in TV mode again.  We’re becoming quite the double act.
My children were very excited to be filmed for the 5 minutes they got to see me in hospital.  We had an emotional reunion at Heathrow on Saturday – I can’t tell you how wonderful it was to be able to kiss them, hug them and snuggle into their skin.   I think the photo of my daughter and I on the way home in the taxi says it all.
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They’ve been incredibly jet lagged and it’s only fair that I’ve joined in with Abbvie’s ABT sleep deprivation protocol kicking in well and truly since Monday night.    It’s now lunchtime on Wednesday and, if my morning bloods still show no sign of TLS, then I’m allowed to go home and the exciting thing is, all going well, this will be my last hospital admission as all further dose escalations will be done on the day unit.
Professor Gribben yesterday gave me a copy of all my results since treatment began.  My lymphocyte count (which reflects the amount of cancer in my blood) was actually much higher than I realised as treatment commenced.  It had jumped in the 2 weeks immediately prior and shows that I was rapidly becoming unwell and treatment came at just the right time.   This graph of that tells a story in itself.   The little spikes are the lymphocytes coming back immediately prior to each obinutuzimab treatment and you can see that the ABT-199 has stopped that happening over the past week.   I’m now in the normal range.
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This is an incredible treatment.   To achieve this result on relapsed and refractory disease with no side effects other than the tiredness associated with the monitoring itself is astonishing.   My remaining little lymph nodes are already feeling softer and I now have these in my clutches…
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As you can see “Ven” is now bigger and a different colour – these are 31 50mg tablets – I’ll be taking one a day until next Tuesday when I return to be monitored as I move to two a day.  I can only imagine how much these tablets will cost when they are approved and I am so so lucky to be able to access them via this clinical trial.  I’m on a ward where patients are having aggressive chemotherapy treatments, they’re shuffling around attached to iv pumps, hairless with that gaunt look gifted by chemo.  Don’t get me wrong chemo did save my life almost 3 years ago and I’m very grateful for it but it’s targeted therapy such as this which will make the carpet bombing approach obsolete.  Chemo kills rapidly dividing cells, which includes cancer cells, but also includes skin, gastric lining and hair which is why the side effects are so debilitating and, in my case, it couldn’t kill every last cell.   Looking at my fellow patients I feel guilty that I am having such an easy time of it, especially when they are older and more frail than me.  I will be making it my mission to help make these treatments available to everyone who needs them at the end of all this.    I feel quite emotional about it – this is a very exciting treatment, thanks to those wonderful scientists the future is here…I have not felt so hopeful for a long time.

ABT – Easy as 1,2,3

ABT – Easy as 1,2,3

I’m slightly delirious so you’ll have to excuse this update as I have the Jackson Five song on repeat in my head.  I think this part of the trial is not so much a test for reactions to Venetoclax, as a test of human endurance/water/sleep deprivation torture – I have now not had more than 45 minutes sleep for 48 hours and I’m really feeling it.   My trial nurse Sam worked a 16 hour shift yesterday so I can’t complain as I know he’ll be feeling it today too.   I’m so lucky to have him, he’s so calm and, most importantly brilliant with needles, we’ll be into the 100’s of “just a wee scratch” by the time we’re through. This one on one care could become a bit addictive too.   All these vials needed to be filled within 24 hours of taking the drug (needles are not so addictive).

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I took 2 x 10mg tablets of ABT-199/Venetoclax at 2pm yesterday after overnight hydration in Barts – had a lovely room to myself on the stem cell ward so they could keep an eye on me….and boy have they kept an eye on me.  Hourly observations, blood tests every 2hrs for 12hrs to 2am then another at 6am plus I had about 7 litres of fluids over the course of yesterday and overnight so I’m very pleased I have an ensuite.   My poor arms are very sore – it’s a lot of needles and that PICC line would be a good idea for those who follow me.
Here is a photo of me taking the first drugs – I was a little bit nervous but also very excited.
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All my bloods have come back in the normal ranges.  There was a slight biochemical reaction as my liver processed the drug but the peak time for Tumour Lysis was 6 hours after taking it and that passed without incident.   Professor Gribben came to see me in the morning before I took the tablets (along with a camera crew) and he really reassured me that I was low risk for TLS but that everything was in hand here at Barts if I was showing any signs whatsoever.   He told me they were following advice from the Peter Macallum Cancer Centre in Melbourne (ironically my local hospital) who have treated more patients with ABT-199 than anywhere else in the world.   I will post his interview on the blog as soon as I get the ok from the hospital’s communications team.   A  film is being made about my journey by the patients advocacy website Patient Power – it was really great to have a record of yesterday and a privilege to hear one of the world’s leading CLL experts talking about my case, and the possibilities for patients like me.  I think it will be a good resource for other patients, and from a personal point of view, I’m pleased my children will be able to watch it when they’re older to understand why I had to leave them for so long – Professor Gribben does outline just how poor my prognosis is without this treatment which is very sobering.
As for the tablets themselves it was all thankfully anticlimactic.    No drama from me last night and today I’ve just been given my 6 day supply of venetoclax (ABT-199/GDC-0199).  I’m about to take my next 20mgs.
I have a 2pm blood test and then if that’s ok I’m outta here.
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Not back until Monday for a repeat of the hydration and then Tuesday’s 50mg dose ramp up plus the second cycle infusion of obinutuzimab.  There is a risk of TLS with every dose escalation but if I don’t have it again next week then I should be able to have the rest of them just as a day patient.    One funny thing was all for my reading and knowledge I didn’t realise I hadn’t actually been doing my basic job of taking the correct number of pills of acyclivor (my anti-viral to prevent shingles) over the past 3 weeks.  I’d only been taking one 400mg dose a day but it was supposed to be two a day – oops – for the record Sam had given me the correct information and it was on the box, I just stuffed up.   Didn’t get sick so no damage done.  I’m also on 300mgs of allopurinol a day to protect my kidneys.
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My friend Eddie, who funnily enough was at medical school in Glasgow with John Gribben, has spent a lot of time in hospital with me these past few weeks – he was a consultant at the Royal London Hospital so understands everything much better than me so I’m very lucky.
I facetimed the kids this morning – Natasha told me that when she wakes up tomorrow it’s only one more sleep until they are coming to London – I cannot describe how excited I am.
The camera crew will be with me so you can all share the moment.   The interviewer asked me what kind of activities I was looking forward to doing with them when they arrive – I wish I’d had a camera on Professor Gribben’s face when I said I was hoping to take them skiing in January!   I’m sure I’ll win him over.
Final random thought for all those spending a fortune on expensive face creams – it’s amazing how much 7 litres of water makes your skin glow, despite making your cheek bones disappear…see there are benefits to everything.  ABT hydration, the new Creme de la Mer.

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

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

About me:

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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.

Obi-wan Kenobi

Obi-wan Kenobi

I’ve now finished the 1st cycle of Obinutuzimab – they do choose some strange names for these drugs, ABT-199 is now called Venetoclax and referred to as VEN for short in the scientific papers, George Lucas eat your heart out.

I had another 1,000mgs on day 8 and another 1,000 yesterday on day 15.   Side effects were minimal.  The steroids on day 2 made me sweat a disgusting sweetcorn smell for a few days and I was relieved when they dropped those for days 8 and 15 and the anti-emetic made my bowels stop working – TMI? (I’ve been told I should enjoy that given how active they’ll be when I start the ABT-199).   Yesterday I got away with having the Obinutuzimab on its own with no ‘roids or anti-nausea drugs and boy do I love the piriton appetiser – really relaxing, wish I could start every day with an infusion of that.

So now that I’ve officially been debulked how am I doing?    Well first of all pictures tell a 1,000 words so let me show you how  I have no visible lymphadenopathy left.

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I had a full examination today and there are still some palpable nodes in various spots but they are all less than 1cm which is a big relief.   This is my latest blood test too.

 

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Although I’ll be having another 4 cycles of the Obinutuzimab over the next 4 and a half months I feel like it’s probably done as much as it’s going to do on its own….and it’s now time to bring in the big guns of ABT-199 aka my new friend VEN (he sounds a little Swedish doesn’t he?).   So let me tell you about this amazing drug which I’ve spent the past 18 months trying to access.  It’s been a long time love affair and I have to say now that we’re about to consummate our relationship I’m starting to get the wobbles.

ABT-199 is the most exciting weapon in science’s new arsenal against CLL (and several other blood cancers for that matter).   For the geeks such as myself you should know that it targets a protein called BCL-2  which is over expressed in these cancer cells – by entering the cells and shutting this off it causes them to die and the effect is almost instantaneous.

Within hours of popping the pill it goes to work and cancer dies in massive amounts (apoptosis is the official term).    The exciting thing is that, unlike chemotherapy, it is targeted therapy so the side effects are much more palatable.  All but one that is.    Sadly in early phase 1 trials of the drug (and we really are still in early trials – I’m in phase 1b) the immediate impact that it can have on the cancer cells wasn’t fully appreciated and at least 2 patients died in the US of what is called Tumour Lysis Syndrome.  I heard that there was a third death in Australia but I haven’t read this in any of the published data.  Tumour Lysis is where the body can’t process the amount of dead cancer cells quickly enough and it leads to kidney and ultimately heart failure.

Shockingly two patients died within hours of a dose escalation and, for as long as others like me enter these trials and others later benefit from this amazing drug, they will be constantly in our thoughts.    We lab rats who enter Phase 1 trials are brave but we’re also very sick and have run out of options and this is the only way we can access cutting edge therapies.

I knew one of the patients who died via the CLL forum, a man called Randy Shirley who was not much older than me, with a wife and children and a zest for life who also blogged his journey and had been a huge advocate for other patients.   He was interviewed by Andrew Schorr on Patient Power shortly before his death and Andrew, the beneficiary of a clinical trial himself, paid this tribute to him

http://www.patientpower.info/blog/patient-power/2012/12/20/the-sudden-death-of-randy-shirley-a-leukemia-loss/

Randy was at a centre of excellence for leukaemia trials in the US.  His last post was a photo of the 12 pills he was about to take for his dose escalation along with the comment that he was the first patient to ever take such a massive dose.   Within hours he had died at home and his death shocked the whole patient community.   The trials were immediately suspended and the protocol changed to include more hydration, more hospitalisation and lower doses of the drug.  While we mourned Randy, and my thoughts are still with his family, we were also scared that this might impede the approval of the drug which offers so much hope to those of us with this incurable disease.   53% of patients on one of the combination trials of ABT-199 with an older version of the monoclonal antibody Rituximab/Mabthera have no detectable cancer – that is an astonishing figure for a relapsed and refractory group of patients who were almost certainly facing death without this drug.   Patients are going from hospices to being cancer free after this treatment and that’s unheard of in our disease.

Pharmaceutical companies need patients like Randy and myself to get their drugs approved but patients like us also need it to give us a chance at getting through this disease.

So, having said all that, Tumour Lysis Syndrome (TLS) is now my most immediate fear.  Because I’ve been debulked and my White Blood Count is lower the danger shouldn’t be as great, but today I had a blood test which showed an elevated creatine level in my test from last night which is a warning sign for kidney damage.   I am drinking so much water but have now stepped it up even more and my test from lunchtime today came back normal but it was a bit of a fright for me.

I will be admitted to the hospital on Monday afternoon for IV hydration overnight and will take the first VEN pill on Tuesday.  They’re starting me off at 20mgs and I will take that daily for a week before I’m escalated to 50mgs for a week, then 100, 200 and finally onto my ongoing dose of 400 mgs a day.  2 hourly blood tests will follow and they’ll be particularly watching my potassium and creatine levels which is what tells them TLS is happening.  My understanding is that the renal team will be on standby if I do start showing signs of this and they will quickly start flushing me out, I’m assuming with dialysis, to help process the drug and dead cancer out of my system.

It’s all a little scary and I know, having travelled around the world to meet my new love, I’ll be a lot happier when I know the only thing he’s going to kill is my cancer.  Sometimes knowing too much is a bad thing but that’s what informed consent is all about.

How I met the Professor

How I met the Professor

I’ve had a few emails asking me how I have ended up in the UK from Australia (and thank you for the lovely feedback) so now is probably as good a time as ever to share the story of how I met Professor Gribben from Barts.

I have two wonderful specialists in Australia, my original haematologist Dr Melita Kenealy from Cabrini Hospital, who diagnosed me in December 2011, and my prospective transplanter Professor David Ritchie from the Royal Melbourne, who was the first doctor to use the words potential cure around 4 months later.  I trust both of them with my life and, despite my type A control freak personality, would go along with their treatment decisions in a heartbeat.   The fact is I delayed having chemo beyond the point I should have and when I finally did have FCR wished I’d listened to them and had it a couple of months earlier such was the improvement in my quality of life (they were good enough not to say we told you so!).   When my disease relapsed this year to the point that I required further treatment I was inspired by one of Australia’s most successful businessmen Ron Walker, who had travelled to the US to enter a clinical trial for aggressive melanoma.   You may want to read the article which triggered my pilgrimage –

http://www.afr.com/business/health/pharmaceuticals/ron-walkers-war-on-cancer-20150129-131l6w

My feeling was that, I may not be rich, but if there was a better treatment option open to me overseas that wasn’t available in Australia then I would move heaven and earth to access it.   So with my doctors permission I travelled to the US in April to get an opinion from Professor Thomas Kipps at the University of California San Diego.  Professor Kipps is one of the world’s foremost CLL experts and my visit coincided with a patient conference organised by the CLL Society and the CLL Research Consortium to give patients the latest news on clinical trials.  It was perfect timing for me and I appreciated my Australian doctors humouring me by agreeing to let me explore other treatments before we proceeded to transplant (this is still the only known potential cure for CLL).

Professor Kipps’ opinion was that I shouldn’t yet have a transplant and that I should have some novel therapy to buy me some time before a good clinical trial opened up in Australia – indeed Professor Ritchie had been exploring what was available for me to use as a bridge to transplant before I left Australia.   Professor Kipps also urged me not to consider a clinical trial in the US for if anything were to go wrong, being uninsured, I could end up with medical bills running into the millions.

The next day I went to the conference.  Jetlagged and totally exhausted I crept into the back of the theatre just as a Scottish doctor was giving his presentation.  Funnily enough I took a photo.

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I asked the patient next to me who was speaking and she said it was Professor John Gribben from St Barts Hospital in London.   After he finished the Professor walked up to an empty chair beside me in the back row and sat down – you can see from the picture how many people were in the room!   I was wearing a toy koala on my jacket as there were people trying to meet up with me and he asked if I’d travelled from Australia for the conference and if I was a carer.  I said no I was a patient and he said if I didn’t mind could I tell him how old I was when I was diagnosed – I said I was 38 and he asked if I’d had treatment.  I told him I’d relapsed early from FCR and he said so you’re here looking for a clinical trial.  I said I was and he said but you’re British – I have a great trial for you if you can make it back to London.  That is how a chance meeting led me back to Blighty. We spoke after the conference and the Professor said he hoped that there would be a better option in Australia which wouldn’t mean so much upheaval for me and my family but added that he would get his trials nurse to forward all the details to show to my doctors.    That night I flew to another patient conference in Niagara Falls organised by the Canadian CLL patients group where I met Professor Michael Keating and we talked footy (another of the world’s leading CLL experts based at MD Anderson and an Aussie to boot).

Everything moved so quickly after that.  The first person I caught up with was Dr Constantine Tam, one of our leading CLL experts who is also responsible for bringing a lot of the international clinical trials to Australia.  He said that, despite Australia having more experience with ABT-199 than anywhere else in the world, the trial in which I was most interested would not be opening there.  The only way I could access the drug would be to enter a phase 3 study where it would be randomised against more chemotherapy – had I not already failed chemo I would have jumped at this opportunity – it’s called the MURANO trial for the Aussies reading this.   After going through all my options with me he reluctantly agreed that the best potential treatment for me (and please note this won’t be the same for everyone else given how heterogenous this disease is) was the London trial.  He added that there was no rush as my disease was fairly stable and I would actually need to have more progression in order to qualify for the trial.  I then saw Professor Ritchie and I was convinced he would try to talk me out of it, but he actually agreed with Dr Tam, adding that he thought ABT-199 was a great option for me and that this potential new therapy combining it with Obinutuzimab could be the only alternative to transplant for me.  If it didn’t work as well as he expected then at least he knew I’d be happier to proceed to transplant knowing that I’d thrown the kitchen sink at this disease (my words not his!).  If I didn’t make it onto the trial plan B had to be boarding a flight back to Australia and letting him get rid of my dodgy immune system and replace it with one that actually recognised the leukaemia and would start attacking it.

So here I find myself.  The hardest thing is being separated from my children but their father and I agreed that it was best for them to stay at school in their routine, particularly as I would be spending so much time in hospital.  They all came over a few weeks after I arrived for their spring school holidays and will return in 3 weeks time for their long summer break and first wintry Christmas.

It was my daughter Natasha’s 6th birthday today and it’s the first time I’ve ever been away from any of them on their birthdays.  Thank goodness for technology – it was a delight to watch her opening her presents via FaceTime and I wasn’t too down knowing that I’m here to make sure I’m around to see her open them for many more years to come and will spoil her rotten with a Mummy and me day when she gets to London.

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Doing pirates

My mother travelled from Australia to look after me when I started treatment and her phone did a great autocorrect last week when she told my sisters on our whatsapp group page that I had a glow in my cheeks and was looking so much better since I started doing pirates.    As interesting as I think that might be, and who knows it might even help my recovery,  she was actually referring to my new found love of pilates.

My friends all chipped in to give me a wishing well to spend in London when I left Australia 3 months ago (thanks again girls) and I finally found something to put it to good use with a course of private Pilates sessions on reformer machines.  The sense of well being and strength I’ve found from this has blown me away – I can see why my friends have become addicted to this wonderful workout.

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Today, two days after my first treatment my South African instructor Karen took me through a gentle workout – actually she wasn’t that gentle!   It felt good to get my body moving again and I was perspiring much more than usual – I think the obinutuzimab is still in my system.  She could see the changes in my body since last week – my abdominal lymphadenopathy had given me a bloated look.   I’m hoping the strength exercises will help my poor veins recover too before next week’s treatment and it’s great to leave the studio with that “I’m very much alive” feeling.  Now time for a long hot soak in the tub and a lie down!