Friday, September 01 2017
I've written countless blog updates in my head in the middle of those nights when sleep is hard to come by, but never typed them up, and somehow, so much time has gone by without me doing one. I apologise. I know you have all offered so much care and support to Tracy and want to know how she is doing. So, tonight I finally decided to just get up and type! As can be the case when it comes to the cancer rollercoaster, it has been one of those weeks when new test results snap your priorities back into focus and there has been a lot swirling around in my head. It's been quite some time since I've been with Tracy to one of her oncologist appoinments. I've had a fair bit of my own and other family needs/priorities to deal with over the past while and Tracy had been going along pretty well on the cancer trial she was on. One day that's the case, the next it's not. A drug can be working well for you but suddenly it stops doing so, the cancer builds up resistance, and when that happens, it's time to act and act quickly. When it changes, it changes fast and you have to find a way to keep up!
Tracy's test results last week showed this had happened with the trial drug she has been on for the past 8 months. So in what seemed like a snap decision it was determined she was no longer eligible to participate in the trial, and this week, we found ourselves back in her original oncologist's office. In reality it wasn't a snap decision but a very necessary one. A sharp, sustained rise in tumour markers and new lesions in her femur along with one in her liver were enough to convince me within a second that this was the right move. On the one hand it was so nice to be there in her original oncologist's office. She was incredible to all of us during those bewildering early months and took such great care of Tracy, often stepping outside of the boundaries of oncology. She takes so much time to answer every single question, and work through every single option. She is so caring and kind, whereas clinical trials can be so... clinical. They are about data and statistics and trying to get new drugs registered/approved. On the other hand, being where it all began, brought back quite a few memories about those early conversations regarding which line of treatment to try, what the pros and cons of each work etc...All pretty confronting when getting it right has such a sense of criticality? Unfortunately, it also all starts to get harder to make those choices as time goes on and treatment lines dwindle... At the start of a diagnosis, all of the options are on the table, but as you move from line of treatment to line of treatment, they start to diminish. The complexity in the points of difference gets technical, and your focus has to dial up a notch to meet the challenge. I ask a milliion questions. The oncologist boots up her laptop and patiently runs me through all of the trial data. We're a little overwehlmed and Tracy quietly whispers to me , 'I'm so glad you're here for this'. She had tried to tell me I didn't need to come. 'Clare, you don't have time, it's ok, I am fine to go by myself' she said, but she wasn't going to be able to convince me otherwise. I sat there and thought to myself, how important it is to prioritise what you need to when you need to! Time is so precious, how much of it do we spend wisely? How often do we spend it on what matters most to us in a day, and how often do we just get caught up in the seemingly endless barage of daily commitments? I know I don't always get it right, but I sat there grateful for doing so this time and for insisiting that I be there.
Obviously the fact that the cancer has progressed is very stressful. The good news is that there are still options other than 'end game chemo'. The not so good news is that they are not on the PBS (Pharmaceutical Benefits Scheme). They aren't on the PBS because they aren't approved for this specific use, mainly, I suspect, because it's a very long, bureaurcratic process to get from successful trial data to PBS listing. So, in essence, there is sufficient data to prove the drugs work in sufficient numbers to warrant their use for the purpose we would want Tracy to be on them for, however, they aren't funded for that use yet. That means, if you want to go on them, you have to pay the full cost. To give Tracy the best chance to stop this latest progression she would ideally go on a dual drug protocol. One of these is $800 per month ( I perk up immediately, start doing sums in my head and think... we can find a way to do that, this is great:-) then she tells us the cost of the second drug...$6000 per month!!! and we slump back into our chairs with deep, heavy sigh. Sensing our despair the oncologist presents the option of going on the cheaper drug on it's own. There is trial data for that and the response rate is 10% success. 10%. I quickly ask what the trial data response rate is for the dual drug protocol. 25%. Two and a half times!!! It's so hard to rationalise. How are you supposed to accept two and half less times the chance of stopping further progression when you know something better is available? The drug exists but you have to be able to pay. On the hand I know we have been so lucky that Tracy has spent 3.5 years responding to drugs that either were on the PBS or were on trial. Despite this, her medical costs have still been significant. On the other hand, I'm totally overwhelmed at what 3.5 years of $800 + $6000 per month totals in addition to all of her previous costs. Not that she would respond to, and therefore be on this protocol for 3.5 years, but, after a few more questions, I quickly understand that, unless Tracy becomes elgible for future trials, all options from here are unlikely to be on the PBS.
In my mind, running in parallel thought to the treatments costs, is the fact that Tracy has been working with a lawyer for the last year preparing a medical negligence case. I am so immensely proud of her for doing this. The harsh reality of how different her prognosis and quality of life could be if her symptoms and subsequent imaging had been reviewed more thoroughly back in April 2013, never fades. If her case reaches this just and fair conclusion then it could fund her treatment and help in so many other ways. There is comfort in this thought but also no guarantee, and the timing doesn't align. Tracy's cancer is progressing now and her case hasn't even had it's first mediation session. Ironically, this is scheduled for next week but has already been postponed once. Hopefully it does go ahead next week, but this will likely be the start of a process. It is going to take guts and bravery and will be confronting and emotional for Tracy, and for all of us, but we can only hope that the truth will be seen and that it will be worth it. Tracy and I have a brief side discussion around this, and how, if this happens it could fund her treatment. In true Tracy style, her initial thoughts are not to preserve herself and she counter states that she wants any funds to go towards giving Taya and Mike some financial security. She knows how much stress the financial pressure of the past few years has caused (even with all of the amazing support she has received) and she wants to take this away for them. I get that... but I quietly state that we would prefer her alive! This shouldn't be an either or situation. It just shouldn't.
So much new information to process all within the space of an hour and at the end of the appointment we needed to decide what drug protocol to start Tracy on. We decide on the cheaper one on it's own for now, at $800 a month. We agree that, if her case is successful, we immediately layer in the second drug and give her that 2.5 times chance of response. There is no trial data for this approach i.e. no documented cases of someone starting on the one and then adding the second one later. We also agree that we will keep a close eye on her progression and, if she doesn't respond to the single drug we then reconvene to discuss further, even if her case has not finalised. We leave feeling like we've come up with a good compromise for a plan of attack. Good. Or so I thought until I started to think and think some more and haven't stopped thinking over these past few days... how did we decide to take a compromise as an approach for someone we love so much's, chance at life? What if she doesn't respond to the single drug and the cancer 'does it's dash'? How could I live with that? I imagine the conversation I would have with Tracy about making changes so that I could fund her treatment. I'm starting work on compiling my counter arguements in my head! Yes it is a lot of money and I'm trying to find a small place for me and my kids and the housing market rise keeps pricing me out but... she is my sister and I know she will be reading this so consider this the start of my counter argument. All of Tracy's army has already dug deep and supported her so much I struggle with asking any more of our wonderful friends. We've had some fun along the way too and I don't know where we would be without all of your support.
All of these thoughts are still very raw but I can't help but think we didn't decide on the best plan but also really don't know. I've shed a few tears over this and feel I need to talk to her oncologist again. I wish we knew how and when her case will be determined but we don't. I wish the timing was better but it isn't. We still need to make the right decision wihtout having a crystal ball...
It's a heavy blog update, I know (sorry) but I'll leave you all with a happier thought... despite this post being what I thought and wrote about when I should have been sleeping last night, I'm not tired today. I'm not sad. I am feeling grateful and excited (what? you're thinking I am delerious right?). I'm not (well, maybe just a little). Seriously though, today is a special day. Our 'other sister', Lisa celebrates a milestone birthday today and my sisters and I, along with some of Lisa's closest girlfriends, get to celebrate over a long lunch enjoying the spring sunshine in the little slice of paradise where we live. Today we leave cancer behind, if only for the day:-) and I paused writing to walk on the beach and see the sunrise on the first day of Spring (picture included:-). I can thank the treatment dilema for the sunrise I would most likely have otherwise missed.
So sorry to read that Tracy,s cancer has spread. My prayers are with you all Robyn
Posted by Robyn on 03/09/2017 - 03:31 AM
Thank you Claire for the informative update. We here in NZ feel greatly for Tracy,Michael and Taya and are so pleased she has a sister who works so hard for her. We will have you in our thoughts these next trying times.
Posted by Jocelyn Williamson on 03/09/2017 - 03:26 PM