August 25, 2014
This one is from Matt himself…
It has been a while since I’ve posted something about my health, mainly because there hasn’t been much to tell – we’ve just been going with the flow! However, I have some good news that I would like to tell you all.
July 19 was the 12 month anniversary of my most recent transplant. It was great to get this far, as there was some doubt as to whether I’d even survive the transplant.
Being 12 months post transplant meant I needed to undergo some scans and tests to see 1)how my body was functioning, and 2)to see if I was still clear of cancer and hadn’t relapsed.
My bodily functions are entirely normal (with exception of the lungs, but they continue to improve!), which, after all the treatment I have had, is great news. More importantly however, I am still clear of lymphoma.
I’ve never been 12 months post-treatment clear before so for me this is massive. It’s also massive as my chances of long term survival have increased dramatically.
The news is still sinking in, and mainly right now I’m just feeling relieved. It’s also given me some real hope for the future, especially for the 2017 World Transplant Games. I’ve set a long term goal to get there and not just win, but break records. After 3 transplants and with dodgy lungs, I think that’d be a fair achievement!
Mum is trying to convince me to go on a holiday soon but I’m still weighing it up. Im going to New Zealand over New Years, maybe I’ll head somewhere in the middle of next year!
Again, we’re not out of the woods by any stretch (I need to be 5 years post – treatment clear to be classified as ‘cured’) but things are looking very good. Graft vs Host disease has been staying away so I’ve been able to reduce my medication, and the doctors are very hopeful. I have had a couple of stays in hospital recently for some infections due to the lousy weather and everyone being sick, but I feel fine now!
I just want to once again thank everyone for all the donations, help and support. I haven’t needed brentuximab for 14 months now and hopefully never will again. Without your help I would not have been able to get the drug, which led to the opportunity to have another transplant, which has now led me to be 12 months clear. On top of that, we’re creating some medical history (My doctors have never had a patient like me – I’m a bit of an experiment for them, so it’s great things are working out), so again thank you.
December 13, 2013
Again, sorry about the late update, lots of news to tell!
Matt had his transplant on July 19, as planned. The transplant itself went smoothly, however there were some complications after transplant, namely graft vs host disease.
Graft vs host disease is basically where Matt’s donor’s stem cells recognize his body as foreign and attack it. Whilst not necessarily a bad thing (as there is a link between this disease and a cure/long term remission, as graft vs host is found in most cases to attack any remaining lymphoma cells in the body too), it can be fatal.
This landed Matt in hospital, with some rather nasty issues, but luckily he responded well to the treatment for graft vs host and was soon out of the hospital, and less than 3 weeks later was cleared to return home! Since then, it’s been a matter of recovery. Graft vs host has flared it’s head up a few times as he’s been coming down off transplant medication, and has knocked him around but it’s been managed to be suppressed each time, a good sign. As time goes on, if it does flare up again, it likely won’t be as aggressive, and should be able to be identified and treated earlier and easier, which is great!
Matt is now easing back into life – slowly building up fitness and easing back into work. He had his first post-transplant scan in November, and was still in complete remission – an awesome sign and the start we needed. Whilst still only early days (there is still a long way to go!), the doctors are hopeful that maybe graft vs host disease was what Matt needed to beat lymphoma, as he did not get any after his first allogenic transplant.
Next week, Matt and the family are embarking on a 9 night cruise to Fiji and Noumea, the perfect way to end what has been a hectic, but overall great year, before starting what is the beginning of normal life in 2014!
June 29, 2013
Sorry it has been so long since we’ve posted an update, but good things have happened!
Matt has been talking to Westmead hospital a lot recently, about treatment options and whatnot, and, after a recent study emerged that showed most people after 2 years on Brentuximab had relapsed, a decision was made to give Matt another Bone Marrow Transplant!
Now, what is a bone marrow transplant?
It is easy to assume that, due to the word ‘transplant,’ it is an operation. However, it isn’t. The official title is ‘Stem Cell transplant’. Essentially, you inherit a new immune system. They can be autologous (where you donate your own stem cells to yourself) or allogeneic (where someone else donates). For this to happen, your current immune system, and all other blood cells must be eliminated, through a week of a special type of chemotherapy and radiotherapy. After that, the donors stem cells are put into your body just like a blood transfusion. From there, they engraft into the bone marrow, and then become red and white blood cells, with the hope that a new immune system will fight off the cancer.
This is a massive opportunity for Matt. Six months ago, he was told all curative options had been exhausted, but considering how well things have gone, there is a chance he could be cured with this transplant. That would mean no more drugs, and a lot of money saved!
This isn’t without risk though. As Matt won’t have an immune system for quite some time, as the stem cells take a while to engraft, there is a chance he may be killed via an infection, or some other complication. There is also a chance that this transplant mightn’t work – he has already had two (one autologous, one allogeneic) and both have failed. However, given the other option of likely having relapsed after two years on brentuximab, in Matt’s view this is a no-brainer, and whilst there is a risk, the ultimate reward is there as well.
Matt will be heading down to Westmead Hospital on July 10 to begin preparations. He starts chemotherapy on July 13, with the transplant scheduled for July 19. From there he faces a long stay (8 weeks minimum) at Westmead, in units across the road from the hospital, until it is determined it is fine for him to come home.
Some more interesting facts about the transplant:
· Matt will be the first person at Westmead with Hodgkin’s lymphoma to receive a 2nd allogeneic transplant!
· Matt’s blood type will change once again, this time to O-
· Matt’s donor is his Mum!
Make no mistake, Matt is pumped up and ready to go. He’s been through it before, he knows what to expect, and he is ready to rip in.
Matt would just like to say a big thankyou to everyone that’s helped him get to this point. To the hospital staff at the Mater and Westmead, to his family, and to all those that have donated, – he wouldn’t be in this position, with this opportunity, if it wasn’t for you.
Friday Feb 15, 2013
Matt had a CT scan on Wednesday and got the result today.
In great news, all of Matt’s lymph nodes are cancer-free! The only part of his body that may still have lymphoma in it is his lungs, however it is difficult to tell whether what is showing in his lungs is scar tissue or lymphoma.
Regardless, this is massive news – a lot of people on this drug get an initial great responds before it only stabilizes the disease – Matt is continuing to respond!
His result has been sent to Westmead Hospital, whose transplant team are now debating the possibility of another transplant!
Again, this great result would not have been possible without the generosity and support of those that have contributed for Matt. Once again, thank you!
Tuesday Jan 8, 2013
Happy New Year, and Merry Christmas everyone!
Matt went to Melbourne for Christmas and had the trip of a life time! On the influence of his good friend Jed Dickson, Matt wrote a letter to his idol, Australian Cricketer Michael Hussey, and gave it to the Australian Cricket team Media Manager at a player signing on December 23. On Christmas Day, he got a call from the team Manager, who invited him to meet the team and join them for the warm-up at the start of the test! Matt met Mike once again, who truly is a class person, and received a signed team jersey which is now proudly hanging in his room! When Mike announced his retirement after the test, Matt immediately bought tickets to see him play in his last game for Australia at the SCG. Matt was in person to see the last day of his international career, and the past two weeks are two weeks Matt will never forget.
Matt also received his Donor Lymphocyte Infusion yesterday! It will take some time before there is any noticeable effect. We will keep you posted!
Wednesday Dec 19, 2012
In a health-related update, Matt will be getting his third donor lymphocyte infusion on January 7. The hope is that Matt will encounter some graft vs host disease with this infusion, which will increase his chances of a cure! Matt also had his 5th dose of Brentuximab today and is feeling great!
Saturday Dec 15, 2012
Bar 121 held their annual Christmas raffle last night, and kindly donated their proceeds to Matt. Over $1000 was raised – which was a great result!
Saturday Dec 8, 2012
King Street Hotel held their second fundraiser for Matt last night, with the theme being ‘Holiday Season’. Another $4500 was raised for Matt, which is a fantastic result, and great fun was had by all!
Friday Nov 23, 2012
Matt had a CT scan on November 21, and got the results today. In absolutely fantastic news, the lymphoma that was in his lungs and lymph nodes has already been reduced by over 50%. After only three treatments, this is outstanding news! This drug is working wonders, and to add to the fact, Matt is not experiencing any side effects from the drug, which is wonderful.
To make things even better, there is talk that he may be eligible for another bone marrow transplant, meaning he may possibly have another shot at a cure – something that was thought to be lost to him.
Sunday Nov 18, 2012
The Forum Sports and Aquatic Centre proudly hosted the ‘Mattathon’ – a swimathon to help raise funds for Matt. To say the day was a success is an understatement – over $45 000 was raised! The raffle they are also holding for Matt is still to come! This is an astonishing effort, and we are extremely grateful for the Forum’s organising of the event. A big thankyou to Bar 121 who also held the Mattathon after party, where a percentage of every drink purchased went towards Matt!
Saturday, Nov 2, 2012
Last night King Street hotel hosted a ‘Nightmare on King St’ – a halloween themed evening designed to raise funds for Matt. The night was a huge success – over $8000 was raised and everyone had a great time! A huge thanks to King Street and Matt’s friends for organising the night. Stay tuned – a sequel may be announced soon! Watch the events space!