Steve’s Story – Waldenstrom’s Macroglobulinemia (WM)

New Clinical Trial available in Australia for Waldenstrom’s macroglobulinaemia (WM).

Hello, my name is Steve McGuigan. I come from a little town up in the mountains in the Mid North Coast, west of Coffs Harbour called Dorrigo. This is my cancer story. On 22nd November 2012, I was diagnosed with Waldenstrom’s macroglobulinaemia and couple of days after that I was rushed to Royal North Shore Hospital with blood tests showing that my protein level was enormous and they had to remove the high abnormal protein from my blood, otherwise I would deadline.

I was in Royal North Shore for a week and got over the plasma exchange treatments and went onto chemotherapy. I had 6 cycles of chemotherapy but when my protein was tested again the treatment was said to be unsuccessful, so I started another form of chemotherapy and after 6 cycles of that, I was then tested again and my Haematologist said that was unsuccessful as well. So after a month’s rest, my third type of chemotherapy was begun. I was fair-to-middling weighing into that and then at Christmas time 2013 I developed shingles and I spent two weeks in Coffs Harbour Hospital in intense pain, the most pain that I had ever been in my life.

Anyway, it eventually settled down and I continued my third round of chemotherapy and that was leading up to a bone marrow transplant in September 2014 at Royal North Shore under Professor Ian Kerridge. I had all the tests and all the biopsies but at the last moment, Professor Kerridge rang me up and said that the bone marrow transplant couldn’t go ahead because he said my cancer had actually progressed on treatment.

In his terms, he said that it actually doubled and that a bone marrow transplant would not be an option because it would be unsuccessful. So I said, "well what happens now" because I knew that Professor Kerridge had said that I had enough chemotherapy and they did not really want to give me anymore. He said to me "there is a clinical trial going on at Concord Hospital, I would like you to go down and see if you are eligible for the clinical trial".

So I kept the same date: the 3rd September 2014, and came down to Concord Hospital instead of Royal North Shore and met Professor Judith Trotman and her amazing team at Concord Hospital. Again I did all the tests needed to get me on to the trial and was successful for the trial and would be starting on Ibrutinib, so I then flew back down.

On the 24th September 2014, I got my first prescription of Ibrutinib and began taking three capsules a day. I started feeling better within the first week. I noticed quite a huge improvement in my energy levels and also my ability to get a proper sleep and I have no more nose bleeds.

I have been now on the trial for one month and it seems to be working. So finally after nearly two years, I have had success and to me this is a really joyous moment.

I can’t praise the medical staff and the people that I have met along the way. I am 600 kilometres away and my nearest hospital is Coffs Harbour and my Haematologist Dr Jolanta.

Benson is connected with Professor Kerridge and they have a close collaborative relationship with Professor Trotman. With everyone so connected and working together I feel safe and trust the medical system. I feel like I had a bit of a win, more than a bit of a win, this is life changing for me and I just hope that in the future this drug would be available in Australia and be able to help the poor people that get this rotten disease.

Ibrutinib, is what they called a "target drug", I believed that this is the future and I am excited to be a part of it and extremely excited to be associated with this trial at Concord Hospital* and I now have a future, it is a bright one for myself and for also the team especially they are successful at getting the drug approved in Australia for the use for future Australians Anyway, I thank everybody involved. I have been half living for the past two years and things have certainly turned around in the last month or so for me and if I can help anybody in the future, I really want to.

Good luck and God Bless to all my friends in the medical world. Thank you.

*Editors note: the PCYC-1127-CA study is a randomised double-blind study of Ibrutinib or placebo in combination with rituximab in subjects with previously treated symptomatic relapsed Waldenstroms macroglobulinaemia. It is also open at the Royal Adelaide, Peter MacCallum Cancer Centre, Melbourne and Canberra Hospital. The Arm C which Steve is on, provides Ibrutinib alone for all patients with disease that is demonstrated to be refractory to rituximab. This arm is closing imminently but the main study will continue to recruit for several more months.

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