Help Andrew beat the Big C - Updates - Givealittle
Andrew has passed away 13 February 2018
It’s with a heavy heart that we write to let you know that our friend Andrew Porteous has passed away last night, 12 February 2018. He was only three weeks away from his 35th birthday.
He was surrounded by family during the day as he was in an unconscious state since the night prior. But we were able to tell him how much he meant to us and how we all loved him. He was comforted by his wife Emma during his last hours, and he passed away peacefully and in no pain.
Funeral details are being arranged, and we will let everyone know once they’ve been confirmed.
In the meantime, please feel free to pray and to remember Andrew. He is an amazing person, who truly appreciated all the love and support the Give A Little network provided.
Andrew’s family have asked for some privacy as they work through all the funeral details, but also to grieve and to ensure Andrew’s children receive enough love and attention.
Flowers are not necessary, but if you feel like contributing, we believe the people at the North Shore Hospice have done an amazing job helping look after Andrew in his final days and deserve all the support they get.
If you have anything you’d like to pass onto the family, feel free to get in touch with any of us and we can pass it on.
Daimler Teves – email@example.com
Carl Fenton – firstname.lastname@example.org
Scott Russell – email@example.com
Andrew and Emma's story on Newshub 22 December 2017
Some of you may have seen that Andrew and Emma were featured on Newshub last night regarding his case against AMP refusing to pay out on his life insurance policy. If you missed it, here's the video:
To follow up on this, we've created a petition to show AMP that we wholeheartedly support Andrew's position that he was suffering from cancer whilst he was under cover with AMP and that they should honour his claim.
It takes less than a minute to sign this petition and it'll mean so much to his family!
Thanks and Merry Christmas.
Focusing on alternative treatments and family time 19 December 2017
As Andrew mentioned, we really love all the support you've all given Andrew throughout over the last 12 months.
Because chemotherapy and herceptin wasn't successful, Andrew is now looking towards alternative treatments to fight cancer and to also ensure his family are taken care of in the future. So we will be using the funds generated to help with those.
Thanks again and have a wonderful and safe Christmas.
Andrew's Christmas 2017 Update 15 December 2017
It’s been a while since I last updated everyone on how I am going so I thought I best check in with you all before Christmas. Before I do however, I must first take the opportunity to thank those of you who have donated generously to my most recent fundraising drive (see my fundraiser tab or this link: https://givealittle.co.nz/fundraiser/apfundraiser). So far we have managed to raise $25,000 against a goal of $40,000 before Christmas at which point Latitiude Financial Services will be matching all funds raised to a max of $40,000. To help the fundraising drive along we’ve also set up a very cool auction on Trade Me for a variety of sports memorabilia where all proceeds from the auction will go to the fundraiser - please see the following link to view the auction: https://www.trademe.co.nz/Browse/Listing.aspx?id=1493715996
If you want to get hold of this cool sports memorabilia for yourself, or know of someone else who might, please get busy bidding and share the link around!
Anyway, back to the updating you all on my treatment…. As you all know from my most recent update, unfortunately I did not have any success with immunotherapy treatment. The next and best treatment option available to me was a return to Chemotherapy in a hope that a different type of Chemo might yield the results I so desperately desired. Unfortunately, this type of Chemotherapy was also unsuccessful with my cancer continuing to spread. More bad news, but I guess not unexpected given how things have been tracking for me. During this period of time, I have also had issues with a significant blood clot leaving me spending 10 days in hospital / hospice care. All in all, it’s been a fairly rough of couple of months!
With all conventional treatments exhausted, I really am hoping for a miracle to somehow slow this thing down (or even better, beat it back). Right now I am currently undergoing another course of Radiotherapy (you may recall I had a course of Radiotherapy earlier when we treated the brain tumour). This next course of Radiotherapy is targeted specifically at a large lymph node that I have in my neck, which has caused me a lot of pain. We are simultaneously targeting the Oesophageal area to attack the area of my main tumour. I am part way through what is a 10 day block of treatment. Once this Radiotherapy treatment is complete, I am considering a course of high dose Vitamin C infusions as much has been written about potential benefits for quality of life that can be obtained. This definitely feels like it is worth a shot – anything is at this stage! So that is what is next for me.
I’d like to thank you all once again for all your love and support over the last 12 months, it has been truly inspiring to have you all behind me and supporting my family and I through this amazingly challenging time. I have already outlived my initial prognosis (which was 12 moths from Oct 2016) so I have made a good start – I’ve just got to keep on building on this and make every post as much of a winner as possible along the way. For now, I am really looking forward to spending another Christmas with my family and another summer with them too, every day is to be cherished.
I hope you all have a fantastic Christmas and that Santa brings you all what you are after ☺. To health, and happiness!
Treatment Update - Immunotherapy unsuccessful; a return to chemo; and a new fundraising drive 12 October 2017
I write to you all again with another update on my treatment. Unfortunately, once again I have more bad news. The Immunotherapy drug trial that I have been on for the last few months has been unsuccessful in stopping the progress of my cancer, and as a result, I have been removed from further participation in this trial. What this means is that I once found myself in limbo whilst my specialists figure out the best course of action. Needless to say, my overall outlook is very grim (prognosis of 2 – 6 months) given we have already tried the best options to treat the cancer and none of these options has been successful.
Given this latest run of bad news, my focus is now twofold: (1) spend as much quality time with my family as I can while I am able to do so; and (2) do my best to ensure my family has the best future without me.
With regards to my second goal, I am delighted that Latitude Financial Services (my former employer) have kindly offered to come on board with a new fundraiser. They will match dollar for dollar for every dollar I can raise (to a cap of $40,000).
More details about this and the link to donate under this arrangement is https://givealittle.co.nz/fundraiser/apfundraiser
I really appreciate Latitude’s generous offer - it will make a difference for my family going forward in a world that is likely without me. That said; do not think for even a second that I’m giving up this fight. It is not in my DNA to do so. I simply wish to be prudent and prepare for what is most likely ahead of me.
Despite the bad news of the progress of my main tumour, I do have some good news in that the brain tumour has been stabilised for the time being, and given that is probably the most imminent threat to my mortality this is indeed good news. Given I hope to be around a little longer yet, I am also taking this opportunity to extend the end date of this givealittle page so that I can continue to give you all updates via this medium. Treatment wise, ahead of me now I am returning to Chemotherapy based treatment – there is another family of chemo that I haven’t tried yet so I will be starting on this from mid October, hopefully this one is the one that does the trick.
I’ll be in touch again soon to update you all on how I’m going.
Radiotherapy update 6 September 2017
Hello again to all of you following my journey,
Firstly I must apologise for being a little remiss in taking so long in between updates… in many ways a lot has happened, but also not a lot at the same time.
Firstly I am pleased to report I am writing this update for myself (you may recall my sister had to type the last one up for me), as my cognitive and physical capability has vastly improved since treatment began on my brain tumour. The course of steroids I was put on was very effective at reducing swelling around my brain, and that coupled with the radiotherapy seem to have been effective in the overall treatment of the tumour in my brain. I don’t have any scans to prove that the brain tumour has been effectively treated; we still need to wait another few weeks for that.
In the meantime, as initial signs around the brain tumour were good and I was able to effectively come down from the high steroid doses I was on, I was fortunate enough to be allowed back into the trial Immunotherapy drug that I was on. As mentioned previously the initial signs from this treatment were promising.
For now, we are continuing with the Immunotherapy while we wait for our next round of scan results which should confirm (1) how effective we’ve been at treating the brain tumour; and (2) whether the Immunotherapy is continuing to be effective in treating my Oesophageal tumour.
Thankyou all again for your continuing support – it really helps me face my challenges.
Update on Andrew's condition 5 July 2017
This is the first update I am not cognitively able to write myself so I have enlisted my sister to help so the wording may sound a bit different to what you are used to, my sister is typing (trying to sound like Andrew ;) )
I’d like to give you all a quick update as to how things are going as a lot has changed for me in the last 10 days. I was originally planning to have a short holiday with my wife until my health suddenly took a turn for the worst, I began to rapidly loose control of my balance and speech. This turned out to be the physical manifestation of a brain tumour growing on the left side. Whilst apparently sudden, it’s most likely this tumour has been with me for quite some time.
This kick-started a week in hospital and number of scans and the results of those scans that I’ve undertaken have been about as good as they could be considering the circumstances. I have been advised that I have a single lesion (tumour) on the left hand side, which is more favourable than the possibility of having multiple lesions. I also have been advised that my other tumours appear to be stable following the last 6 weeks of treatment, which is very pleasing considering prior to the this things were deteriorating very rapidly.
For the time being I am temporarily off the trial while we pause to treat the brain tumour. This involves a short burst of radiation therapy, which I should undergo over the next 10 days or so. Once this radiotherapy has been completed a decision will be made as to whether I am able to continue with the trial, which of course is my hope as it does seem to hold some promise.
I will continue to keep you all updated and I appreciate your continued support. I hope to bring some positive news in a few weeks time. There is a long road ahead and whilst a brain tumour is never good news, there is some cause for optimism.
Update - New Drug Trial for Andrew 6 June 2017
Apologies that it has been a while since my last update – there has been a mixture of both sobering and exciting news in the interim.
My last scan was about 3 weeks ago now, and this unfortunately provided very unfavourable results. Essentially my cancer has progressed very aggressively in the absence of treatment meaning that without any further treatment my prognosis is now down to “a small number of months”.
More recently however, I have been fortunate to be one of just 9 candidates globally selected for a clinical trial of a new Immunotherapy drug targeting my type of cancer. It apparently this drug gives an approx. 1 year improvement in life expectancy in about 30% of cases. I am optimistic I am among the 30% - I feel like I am certainly due a break!
The first 10 days of this new treatment has been interesting – initially I had very significant fatigue to the extent I was wondering if that was the beginning of the end. However, in recent couple of days I have emerged from this state of extreme exhaustion and I’m much more perky and more optimistic about my short term outlook.
I’d like to again thank you all for the love and support – I continue to be astounded by everyone’s generosity and the uniqueness of some of the ways some of you have found to help and spread cheer among those I care about - (in fact just the other day we cracked through the 900 individual donor mark to my givealittle page, my family and I are very grateful for the continued support).
Thanks again for your support. Updates will continue to follow!
Andrew's Update after Round 6 3 April 2017
Apologies for the lateness of this latest update – not in keeping with my 3 week rhythm! Nonetheless, this update is a quite significant in the scheme of my treatment and prognosis.
Firstly I’d like to thank you all for the treatment you have supported funding. It is very clear that the rate of progress of my cancer has been significantly slowed thanks to the use of Herceptin in combination with Chemoptherapy (in fact without it, I may already no longer be here). So you can all genuinely feel that you have contributed to keeping me alive, and around to spend time with my wife & kids.
Unfortunately though, my Oncologist is of the view that both forms of Chemo we have tried alongside Herceptin have been ineffective at outright halting the progress of my cancer (the cancer continues to slowly grow). They have also both had significant and permanent impacts on my body via hearing loss and nerve damage. It is therefore on his recommendation that I have ceased Herceptin and Chemotherapy treatments in the hope of providing myself the best standard of life, for as long as possible.
There is still a significant balance of funds collectively donated by you that have not to date been used for my treatment, these will remain set aside such that they can be utilised should a future treatment option require funding.
For me, my best hope now is a miraculous response to a trial drug (my Oncologists words, not my dramatic license). Fortunately there is a trial drug that looks like it may become available to me in the near future. This drug is a new unique approach of using Herceptin and Chemotherapy in a more targeted fashion. I’ll be sure to update you all if / when my next form of treatment starts.
In the meantime, I’ve been encouraged to make the most of what energy and capability I have as unfortunately there’s a strong possibility that it is all downhill from here. At the time of writing I already have quite notable nerve damage in my hands and feet, slightly impaired hearing, notably lower levels of coordination, regular Oesophageal pain requiring morphine to control, generally lower energy levels, and daily bouts of low level fever. With any luck some of these symptoms will subside in time as I spend more time away from Chemotherapy, but I’m not holding my breath. Life isn’t exactly grand, but in amongst it all I can still get about and do things, and so I shall.
As many of you are already aware, the folks at ASB generously donated $10,000 to our family last year at Christmas – see:
We are now planning to utilise this generous donation for a family trip to Fiji on 5th – 11th April, which will – among other things – allow us to renew our wedding vows (something which we’d long planned to do in Fiji on our 10 year wedding anniversary, so are now doing a year early as I can’t be certain I’ll reach that milestone); and allow me to attempt to once again surf the legendary Cloud Break, which has a strong case for the best wave in the world.
Thanks again to everyone for your continued support in so many ways, I am overwhelmed by peoples kindness and generosity on an almost daily basis. I’ll be sure to update you all again soon!
Andrew's update after Round 5 4 March 2017
So here I am another three weeks on. There’s not really much news per-say, so this is really just an update on what I’ve been up to and how I’ve been feeling.
The new chemo regimen we started this cycle was tougher than expected – I found myself exhausted to the point where even light exercise (such as walking down the hill to our letterbox and back up) was not possible for the best part of two weeks (in previous cycles, this level of impact was usually only felt for a few days). Given I’ve always been an active sort, and believe that exercise is key to mental health as well as general well-being, this was a pretty unacceptable situation for me, and led me to probably the darkest days I’ve had so far. I certainly cried more tears this cycle than I have for quite some time. All sorts of tears: sadness, anger, frustration, and fear.
But after the tears, resilience and defiance kick in. Of course, rough times make you appreciate the good times even more, and despite though this time only having 4 good days of relative respite at the end of my cycle, I of course made the most of them. I headed off to Raglan on Monday to sneak in a bit of surfing while the water is still warm and the weather is fine. I spent most of Tuesday out and about in town, catching up with a few people, and was able to really focus on enjoying time with Lauren – highlighted by hours of fun practicing our swimming in the neighbour’s pool. I was also able to enjoy a number of relaxing, tranquil swims at Castor Bay.
Part of the motivation for changing to the new regimen was that my body wasn’t responding particularly well to the original chemo plan – whilst my lyph nodes were classed as “stable”, they weren’t getting smaller, and in particular I was having real problems with my hearing deteriorating which is a known side effect. If you don’t stop using the drugs, soon enough the damage quickly becomes irreversible, thus the motivation to switch. Of course, the new drugs have side effects of their own, and the particular side effect that has started to feature this cycle is nerve damage in the hands and feet. About two weeks ago, my feet just started feeling different – it’s bizarre when your feet have felt like feet for 33 years then all of a sudden, they just don’t feel like feet anymore. They still work fine. They just feel weird pretty much all the time. Oh, and sometimes they feel like they are on fire. I can tell you first hand that it’s very hard to sleep when you feel like your feet are on fire.
Because of this concerning side effect appearing sooner than hoped / expected, and the fact that the treatment knocked me around a lot in general both physically and emotionally, my Oncologist has again reduced my doses. It’s a little frustrating being on relatively low doses when you know you’re fighting a massive tumour, with it’s tentacles (not a correct technical term ☺) throughout your body, but the reality is my prognosis isn’t good in any case, even with the most intense of treatments. So going with what is most comfortable and avoiding severe permanent side effects is the best strategy for now. Who knows, perhaps my body will respond better overall on a lower dose, or perhaps it will mean that there’s some other non-chemo treatment that will work for me. I live in hope.
I know everyone likes to look for good signs, and I’m no different – so here’s a couple: (1) I haven’t lost any weight since my diagnosis, in fact I’m up just over a kilo; (2) on the good days between treatments, I reckon I feel about the same each time, which I take as a sign that things aren’t getting worse. Stable is definitely a win - the next best thing to an outright victory.
Chemo Cycle 6 here we go!
All the best,
Andrew's update after Round 4 10 February 2017
It’s been longer than usual between updates! A few reasons for that – some good, some not so good. Initially I had my last cycle extended by a week to allow me to attend my sisters wedding (4th Feb) in between cycles. This was very successful, and I was even well enough to play a song at their ceremony and do a short speech at the reception. I also took the opportunity of additional respite between cycles to get away for a short holiday to Great Barrier Island with a couple of mates (that place is so good for the soul).
Simultaneously, during the fourth week of cycle four I also experienced a change in they way my symptoms were presenting in terms of the type and intensity of Stomach / Oesophageal pains I was experiencing. The upshot of this was that my Oncologist recommended we bring the CT scan originally planned for the end of cycle five forward (to Tuesday just been) to assess what is going on and whether it is a concerning change.
Results of the CT scan once again classified my cancer as “stable”, which is a little frustrating in the sense that I’m not making any progress forwards by shrinking the tumour and the associated inflamed lymph nodes. Particularly concerning, was that all of the lymph nodes around my main tumour appeared marginally larger, whilst other more remote lymph nodes were stable, or in one case notably smaller. On the flip side this is grand news, as if I hadn’t begun any treatment at all, I’d be very sick with a very grim prognosis by now. In short the chemo / Herceptin combination currently appears to be achieving what the models say it will – keep me around for another 12 – 18 months or so.
Of course this isn’t what I’m after – I’ve got much grander goals than my 35th birthday, and there’s still ample opportunity to achieve them. As a result of these scan results, we’re switching up the chemo drugs I’m on to a different combination, but keeping on with the Herceptin. We’re going to kick off with 3 x 3 week cycles and then do another scan to see whether this combination is more effective.
The new course of drugs is kicking off today (as I write this, per usual for my updates). I’ve got 9 weeks between now and the next scan to get this new artillery to swing the battle in my favour. Regular updates to you should resume the old 3-weekly patterns going forward.
I’ve also taken the opportunity to add a few photos to the gallery section of my givealittle page:
- A couple highlighting the beauty of The Barrier, and that I’ve “still got it” when I do manage to hit the surf, albeit in small waves ;o)
- A couple from the wedding (limited photos available at this stage, I’ll add more later). And yes, that is my daughter lying down in the second wedding photo. It was late in the day, after the service was complete, and Lauren decided she’d had enough, lying down and protesting “it’s impossible”.
All the best
Andrew's update after Round 3 9 January 2017
I hope you all had a fantastic Christmas and New Years period. Lauren enjoyed her visit from Santa - she got the toy train and sunglasses she was so desperately wanting and she loved being able to open not only her presents, but Martin’s presents as well. In fact Lauren probably enjoyed playing with Martin’s presents just as much as her own. Since I last updated you all Martin has turned into Mr Smiles, and he’s still a very relaxed baby, quite the opposite of Hurricane Lauren ;o).
Here is an update on my progress as I begin round 4 of Perception + Chemotherapy today.
There were a couple of wins in the last round:
- I’ve managed to get out swimming / surfing a bit in week three
- I stayed out of hospital for the entire cycle
- Week one went really well
Of course, I wouldn’t be being honest if I said it was all roses and Care Bears. The second half of week one, most of week two, and early week three was really tough this time around - which unfortunately meant the days around Christmas were my worst. Also, by week three it was clear to me that the overall toll on my body of the current dosages is not sustainable, and the side effects and realities of the situation started controlling my headspace. As a result of this and the significant side effects I have been experiencing, my Oncologist has reduced doses of the Chemotherapy drugs going forward in a bid to get the balance better (no change to Herceptin though).
Hopefully for round four, the reduced doses mean I am able to handle better and shift my mindset back in a more positive direction. I am also excited as this time around I have an extra week off before cycle five so that I am clear of Chemo on Feb 4 so that I can attend my sisters wedding.
I hope 2017 starts well for you all, I will check back in with another update around the start of round 5 :o).
Andrew's update after Round 2 14 December 2016
I’d like to provide you all with another update on my battle with Cancer.
I’m now at the end of cycle two of Chemotherapy + Herceptin, and I have handled this round much better than I handled the first (10 hours in hospital vs 4 days). Over the last few days I’ve come down from almost all meds in a bid to benchmark myself and see how I’m really feeling compared to before treatment began. My self-diagnosis is that I’ve seen some mild improvement in my condition, still the same symptoms but perhaps a little muted and less consistently apparent than before treatment started, so, in the absence of any concrete evidence I have been feeling broadly optimistic about my progress.
Today, I visited my Oncologist to review progress after cycle two. We had a staging CT scan conducted yesterday, and this as well as my personal view on my progress naturally formed a large part of the conversation. The initial CT scans supported up my personal hypothesis - broadly showing a marginal reduction in size of lymph nodes with an official classification from the Radiologist of “stable” given the reduction was within margins of error. Given my initial scan was three weeks before treatment, and i’ve only had 5 weeks of treatment so far, this is a promising first result. That said, I am obviously keen not to get too ahead of myself - I have an aggressive form of cancer which is spread about my body so there’s a long road ahead and there will be many ups and downs, it’s just pleasing that the initial signs are positive. My next scan will be around mid February, at which time we will have a much better view as to how effectively the treatment is working.
Thanks again for all your support, I’ll continue to keep you updated on my progress.
Merry Christmas to you all, may the festive season treat you well!
Andrew's first update 22 November 2016
Here's an update from Andrew on how he found his first 16 days of treatment.
On behalf of Andrew and his family and friends, we'd like to thank everyone who has contributed!
Hi Everyone, thought I’d give you an update on how I’m getting along with my treatment. My first treatment cycle (21 days each cycle) began two weeks ago. The experience is different for everyone, but here’s how I’ve fared on round one….
Day 1 - lots of drugs loaded on board, everything going well (now on chemo drip for next 4 days)
Day 2 - still feeling pretty good, this might not be too bad
Day 3 - still feeling OK… until early evening where things started to get real
Day 4 - couldn’t eat any food, checked into hospital with extreme chest pain, x-ray taken, cleared, checked out
Day 5 - no food today either, returned to get Chemo drip removed, nausea got on top of me, more pain, more spewing, back to hospital
Day 6 - hospital, on IV, started eating around lunch time for first time in about 3 days
Day 7 - hospital, getting better, appetite returning, sore dry skin around face begins
Day 8 - hospital, but much better and checked out in afternoon
Day 9 - at home, under control, on a lot of meds for pain and nausea but appetite good
Day 10 - repeat of day 9
Day 11 - Starting to come off pain and nausea meds
Day 12 - Fully off pain and nausea meds
Day 13 - Low on energy, really sore dry skin still but otherwise in good shape
Day 14 - repeat of day 13
Day 15 - Skin seems to be healing now, so almost back to normal, just really need a good night of sleep (but how!?)
Days 16 - 21 - TBC, but I have a good feeling about them ;o)
Next Monday I start round two, and it’s the first round I’ll need to pay for using the givealittle funds (health insurance did cover the first dose). So... thank you all very much for helping make continuing this treatment possible.
More updates to follow. I’ll try and post some photos up soon!
Thanks again for all your support. Words can’t describe how much it means.
Chemo has begun! 7 November 2016
Thanks everyone for your overwhelming support. It means a lot to Andrew that everyone is so willing to help him on his fight against cancer. He's currently undergoing his first chemotherapy session and reading all the notes everyone has sent.
We are also updating the 'goal' amount to $100,000 to better reflect the cost for the first year and so everyone can see how we're tracking against it.
Once again, thanks :)
We're thinking of you, sending you strength and a big hug for the tough days ahead xox
http://www.cancerdrugs-india.com/company-profile.html Get in contact with this company, they may have a cure for Andrew. All the best, stay strong!