After 6 rounds of FOLFOX and Avastin, it was decided that the toxicity that was associated with the Oxaliplatin was starting to get too much, and so round 7 and 8 were only Avastin and 5-Fluoro-uracil.
I have probably lost about 50% of my sensation to light touch at the end of my fingers, and the effects of Oxaliplatin can continue to worsen for a period of time after stopping. Those effects are also cumulative with each round and generally considered to be irreversible. The irreversibility is perhaps a worst case scenario, as when had Oxaliplatin 5 years ago, I got to the point where I couldn’t touch type or do up buttons without looking at what I was doing, but after about 6 months I had recovered at least 95% of that sensation back.
The sequelae of this change in regime are twofold. Firstly, chemo should be much more tolerable. Oxaliplatin was the most toxic of the three agents I was on, and it was a big reason why I had to stop work last year; it took longer to recover from, and I never rebounded back as well between rounds.
Secondly, there is a real risk that response to therapy will change, and not for the better. There is every possibility that the response that was demonstrated on the last CT could have been due to Oxaliplatin, or the FOLFOX/Avastin combination. Stopping it, and continuing on 5-FU and Avastin alone may very well have a much reduced efficacy. This is something that we won’t really know for a few more rounds. For the time being, my CEA levels continue to slowly trend down, indicating that after two rounds of only Avastin and 5-FU, there isn’t a dramatic reversal in fortune. I think on first principles, its safe to assume that in the absence of Oxaliplatin, I am on a less effective treatment, how that actually works out in reality is something that only time will tell.
Overall, the last two rounds of chemo have been an improvement, although I haven’t recovered as quickly between rounds as I might have expected in the absence of Oxaliplatin. Hopefully over time this will improve.
This week we are down in Dunedin visiting Hannah’s parents and family and enjoying showing off Elise. She was well behaved on the flight down and seems to be adjusting to the somewhat abrupt change in temperature at the other end of the country.
In other news, I have had a CT recently which showed further promising results, of which I will go into detail in another post once I have cast my own eyes over the report and images.
Until next time…
For those of you haven’t yet seen the 20/20 story that aired on Thursday night, you can do so by clicking on the 20/20 image.
Hannah and I would like to thank the 20/20 team for their great work over the past few years, their non-intrusive manner, and the way they construct stories that reflect our journey well. We think they did a great job at putting the story together, and we just want to acknowledge all the work they have put into it.
I thought I would also put up a series of links to other media appearances over the past few months so that they are all found in one place.
First was the NZ Herald story that featured on the front page shortly after our Give A Little campaign on October 24th:
and a subsequent follow up on October 25th:
The Dominion Post also did a story which appeared on Stuff.co.nz
Then there was also The Daily Mail that picked up on the story a few days later (and I might add a very comprehensive and accurate account given that we didn’t speak to them at all).
The Give A Little team also wrote a nice summary on their site as this was one of the most successful campaigns that they had ever seen.
There was another appearance in the Otago Daily Times in December after a friend of ours (Anna) was able to organise a brand new Audi to be transported from Palmerston North to Dunedin when we were down there for Hannah’s brother’s wedding. We were given the car to drive for the time we were down there. I have to say, the effort involved in organising that was very impressive, and all done without me knowing. I woke up to hear someone was at the door, and Armstrong Prestige were there ready to hand me over the keys, along with a few cameras as well.
Once Elise was born, we did a follow up story with the NZ Herald as an acknowledgement that their first story was responsible for at least $50 000 dollars of the fundraising that happened back in October. We wanted to let people know how it had made a difference, and that I was able to make the birth of Elise.
After all of that, we have had a number of approaches from the media that we have decided in large part to decline, as we don’t want publicity for the sake of publicity. We also want to protect Elise, as she is yet able to consent to such exposure, and her privacy is for us to care for.
This post is about consolidating the media links into one easily accessible place, and to acknowledge the work that has been done by the media that has both represented our journey well, and also helped contribute to the money raised that has allowed me to continue with treatment that so far seems to be working.
Until next time…
Just a quick note for those who are interested, 20/20 are doing a third follow up on myself, Hannah, and now Elise. The follow up started last year when we announced our pregnancy, and then subsequently caught the events that followed including bad news scans, radiotherapy, and the give-a-little campaign.
The reporter, Emma Keeling, has written a blog post (which is very flattering) about it which can be seen HERE, along with a 30 second excerpt from some of the interviews.
The segment will air on February 20th, 9.30pm on TV2. I will put up the on demand link on the blog after it airs.
All the cool people will be watching….. :-)
This most recent round of chemo was the 6th of FOLFOX and Avastin, and was marked by a few significant points. Firstly, it was the 80th round total of chemotherapy that I have had. I remember after 20 rounds of FOLFIRI thinking that there was no way I was going to be able to make it through another 20 rounds. As it turned out I managed to cope with 66 rounds before it was stopped, and it was stopped because of non-response rather than toxicity. So 80 rounds total of all my chemotherapy is quite an achievement, and not something I would recommend as an overall lifestyle to others.
The second point of significance for this round was that this was the first round of chemotherapy as a father. Chemo renders me fairly useless for a few days at the best of times, but usually that has been something that is easy enough to deal with. I can go to bed, sleep it off, and Hannah just feeds me small amounts of easy to digest food for a few days. With Elise now part of the household there are increased responsibilities that are much more challenging to uphold over those few days. We have been fortunate enough to have been inundated with support from friends and family, and literally haven’t had to cook a meal yet since Elise has been born… But there are a few days that parenting for me, meals aside, becomes a next to an impossible task. Days 1 – 3 of chemo basically consists of having to give Hannah all the parenting responsibilities and I sleep through most of it. Days 4 – 5 are when I start to feel better, but its amazing how just a small amount of pacing whilst trying to settle Elise can leave me exhausted pretty quickly. I am a wannabe parent at this time but with little value to add to the process. Come Day 6 onwards, I’m well enough to resume my normal parenting responsibilities.
There are undoubtedly challenges to being a parents at the best of times, but we have the added complication of chemo punctuating our lives every 2 weeks. We always knew that was going to be the case, and I don’t see why it should stop us from doing our very best. It hasn’t stopped me graduating medical school, it hasn’t stopped me working as a doctor for 3 years, and it hasn’t stopped me from living my life. I refuse to let chemo stop me from being the best father that I can be.
Having your daughter fall asleep in your arms, watching her find peace in your embrace, is one of the magical things on this planet. A completely dependent little human relies on us as parents, and us alone to provide for all her needs. She is the cutest little baby in the world (as seen in her parents eyes) and there is real joy in nurturing her through the early stages of the newborn phase of life. There is delight in watching her open her eyes and having her stare back at you.
…And when she does that, I imagine that she is forming memories of me, her father. The rationalist in me knows that isn’t the case, the romantic wishes it is. Its not an easy thing knowing that unless I survive for years yet, she will only ever know her father through photos, writing, and stories.
…I hope she will also know how much I love her.
Until next time…
On Friday the 17th of January, at 6.55am, we moved from being a family of 2 to a family of 3. In what was an extraordinarily fast labour for a first time mum (2hrs 55min), Hannah and I were proud to introduce Elise Alexandra Grace into our lives. She weighed in at 3.865kg (8 lb 8oz).
Her arrival into the world was uncomplicated and Hannah and Elise are doing really well. The ensuing few days have been the baby moon phase of parenthood. We have really enjoyed watching Elise adapt to her new outside world and she is proving to be (so far) a good sleeper and a not-too-demanding consumer of milk.
As we adapt to this new phase of life, we would like to thank everyone who made it possible through their incredible generosity. My most recent CT scan showed good news, and that the treatment is successful (insofar as there is no disease and a reduction in the tumour burden of existing disease). As I reflect on our circumstance I had a realisation:..
It was in the context of gestating new life that I pursued more of my own life.
My daughter is literally the reason I am still alive…
And I will be forever grateful to her, and to those who enabled this to happen.
We now move forward into a new phase of life, one that will no doubt include sleepless nights, but filled with tears of joy and an overwhelming sense of pride in who our daughter has already become.
I have in the interim postponed my next round of chemotherapy, which will be next wednesday. It will be my 6th round of Avastin and FOLFOX, and my 80th round total. Its not clear why I have lasted as long as I have, but after meeting Elise there is now continued impetus to try and survive for even longer again.
Whilst today we featured on the front page of some news papers (to acknowledge and to thank those who contributed to helping us make this day a reality), we will be declining further media requests as we feel this is an important time for the family as we grow and adapt and give Elise the privacy she deserves.
Until next time..
Another year has passed that I had the privilege to survive. It seems like a weird thing to say, because surviving from year to year for most people is something we take for granted. I wish I could take it for granted, but because I can’t, I am instead grateful and feel privileged that I got to have it.
2013 was a mixed year. It was filled with elation and it was filled with gut wrenching devastation. It was a somewhat repeating sinusoidal-like curve of highs and lows followed by more of the same. For Hannah and myself, the biggest and perhaps most significant part of the year was finding out Hannah was pregnant. We made the decision to move forward with IVF the year before carefully and somewhat calculatingly. The consequences of that decision were not lost on us given our circumstance, but as time has gone on, it has only served to reinforce that it was the right decision to make. We had the good news in May and had to sit on it until the end of the 1st trimester as you usually do, but it was difficult to keep quiet with such knowledge. It was fair to say that I had told a few people before the announcement date with the preface ‘you can’t tell anyone else, but…. ‘. I believe Hannah was probably just as guilty as me on that front.
And from that peak came the inevitable trough in July. The cancer had started to grow aggressively again. We always knew that this was going to happen, and so perhaps knowing it in advance may have numbed us slightly to the news, but it was still a tough realisation that it was finally happening. We were buoyed by the rallying of medical professionals around us to try and do the best to treat me as possible. I have moved beyond the realms of evidence based medicine, and into the more vague place of best guess therapy, where you rely on the experience and knowledge of clinicians to create a treatment plan. I have no doubt that I have some of the best clinicians in the country looking after me. The result of that was to start 25 fractions of 45 gray of radiotherapy (over 5 weeks) with the perhaps inevitable sequelae of having to stop working 5 fractions into the treatment. It didn’t take long, but the systemic effects of local treatment with radiation left me completely drained, and to be honest didn’t really truly improve until at least 3-4 weeks after the last treatment.
After the radiation, again, we hit another low, a follow up CT scan showing aggressive and proliferative new disease in my liver, my retroperitoneum, my mesentery and the right apex of my lung. Such an aggressive recurrence hit hard. This was the bit where everything would change, in my health, my life, and my impending parenthood. All of a sudden January seemed so far away, and seeing my future daughter was no longer a given. The only option left with regards to treatment was to go on to Oxaliplatin, continue with 5-FU, and start Avastin. The latter of which was not available publicly, and would cost $6000 dollars per round for a total of 10 rounds. I had always been reticent about spending money on drugs that didn’t change outcome, but now, it wasn’t so much that it didn’t change outcome that mattered, it was the fact that it might determine whether or not I would get to see my baby girl. We made the decision to go ahead with the treatment, being unsure of exactly how we might finance this, and tentatively made a public appeal.
The ensuing onslaught of generosity caught us all off guard, 60,000 dollars seemed like such a hard target to reach. I remember as a child getting sponsors for the World Vision 40hr famine totalling 50 dollars was a lot, 60,000 was almost a fantasy. Within 2 hours of posting the appeal we had raised 4000 dollars, a commendable response in such a short time, almost paying for the first round of chemo. At 4 hours in it was up to 20,000 dollars… and then the telethon like frenzy began. After 7 hours we had reached 60,000 dollars, we could not believe it.
But then it didn’t stop.
Or even slow down.
Even in retrospect, it is hard to understand the level of engagement and investment people seemed to have in me staying alive. The sheer scale of it was certainly beyond my limited comprehension and we were literally left speechless, almost feeling guilty, we didn’t deserve this generosity. Saying thank you just didn’t seemed to cut it, you say thank you for a box of chocolates, what do you say for 169,000 dollars?? The frenzied giving had also caught the attention of the NZ Herald. I agreed to do an interview, thinking it might sit somewhere on page 5 or 6, but it was the front page the next day, and it was the only story on the front page. Prince George had been dedicated the day before, and he was on page 3. Again the interest in our life journey was both humbling and fascinating, and the additional publicity pushed the giving up another 50,000 dollars. It led us to make a statement that we were no longer seeking further funds, as the goal for my treatment had long since been reached, and the excess generosity challenged my ability to accept it. It was a humbling experience to say the least.
The generosity meant that in November I got to start on Avastin and FOLFOX, and it also meant I had to make one of the most difficult decisions of my life. After the second round of this regime, I realised that I couldn’t continue to work. My time of being well had substantially decreased, and I was still not near 100% when I was well. Medicine for me was more than just a job, it was a lifestyle and calling that I loved. I had also been offered a general surgical registrar position starting in December, which was the specialisation I had discovered energised me and drove me to love getting up to work. It felt like I was throwing away the last ten years of my life.
It was definitely a challenging time.
The subsequent CT scan just before Christmas and after 4 rounds of chemo revealed that the treatment was working. There was significant response in my liver lesions, my retroperitoneal and mesenteric nodes, and the isolated lung lesion had also shrunk. As I write this, excepting the catastrophe, I will have the good fortune of meeting my daughter. For how long I will get to know her is anyones guess, but my survival has certainly long since proven to not be predictable.
So as I finish one year and start the new one, I am grateful for both the joys and the challenges of the past. I have long since said that it isn’t without life’s challenges that you can truly understand and appreciate the joys. The last five years of my life has been a lesson in perseverance, patience, and acceptance that my life is but one of many, all of which will pass away at some stage. I have been blessed to live as long and as well as I have, and for that I will always be grateful. Furthermore, with the anticipation of parenthood on the horizon, I cannot express just how thankful I will be to be able to hold my daughter in my hands and tell her I love her.
2014 will likely continue its sine wave pattern of ups and downs, and probably will contain a full stop somewhere. I will trust God regardless of the outcome rather than conditionally on the outcome, knowing that whatever happens, I will be in His hands forever.
And I couldn’t ask anything more of Him, for He has given me so much.
Until next time…
My latest CT scan shows good news.
The CT was actually before Christmas, and I had the results a few days later, but I haven’t had the chance to have my own eyes on the scan until the last few days and actually be able to quantify what ‘significant’ response is….. and its actually pretty impressive.
The liver lesions, the retroperitoneal lesions, the lung lesion and the mesenteric lesions have all either shrunk or remained stable, and there is no new disease. This is about as good as we could hope for with my treatment. There were really only three categories the CT result could have fallen into:
- No response, where disease continues to grow uninterrupted, the worse case scenario;
- Partial response, where disease might remain stable with very little advance;
- or Response, where the disease stops growing and actually begins to regress.
The third category being the best outcome. What makes it even more significant is that the scan was only done after 4 rounds of chemo, when it would usually be done 6 rounds in. So what we are seeing is significant early response, arguably even better.
What this means is that I will be around for longer yet. I will almost certainly get to see my daughter as well as being around for the very early part of her life. How long this response continues is another question entirely, and only time will tell. Perhaps the biggest deciding factor is how long I can continue on Oxaliplatin. This is the most toxic of the drugs I am on, and it is doubtful I will be able to sustain 10 rounds at full dose. At some point we will have to either dose reduce it, or stop entirely. This is compounded further by the fact that it’s toxicity is cumulative and I have already had 8 rounds of it 5 years ago. At the moment what I notice in particular is the peripheral and autonomic neuropathy. Cold feels like pain (particularly in the week after chemo), I have reduced sensation to light touch at my finger tips, and I have increasingly noticeable postural hypotension, related to sluggish sympathetic nervous response when I stand. This is also compounded by the lack of sympathetic innervation in my right leg after my retroperitoneal lymph node dissection last year. What this basically means is every time I stand up, I have to be careful I don’t pass out as the body doesn’t get blood to my brain as quickly as it normally does with a change in posture.
Further to all of this is the fact that my most recent round of chemo (round 5) has been deferred for 2 weeks due to neutropenia. My blood test the day before chemo revealed a neutrophil count of only 0.29, which is too low for chemotherapy. It would also explain my more-than-normal fatigue during my well time, as well the 10 days of rampant mouth ulcers I had. Christmas day was the first day for 10 days I could eat with no pain and I am yet to figure out if God was being symbolic or ironic… Neutropenia in itself is not too bad, but I am at further risk of infection, and neutropenic fever would necessitate a hospital admission with IV antibiotics. So far no drama on that front.
So I end the year with the good news of the CT scan, the semi-good news of the delayed chemo (more well time), and the perhaps more significant implications of how future chemotherapy may impact my health, with increasing toxicity, both neuropathic and haematological.
Until next time…