With Christmas fast approaching, I would like to thank you for your incredible response to our last appeal. Your continuous support and dedicated following of Perth Blood Institute (PBI) is transforming the lives of people suffering from blood-related health conditions and our vision of a ‘world without blood disorders’ - thank you. 

We are grateful to every single person who bravely shares their medical story with us. Though being diagnosed with a blood disorder can be disheartening, personal storytelling provides powerful testimony and assists us to promote a greater awareness of the warning signs - both to the Australian and global community. Awareness of symptoms, and seeking timely medical care, can be lifesaving. We share the inspiring story of Gemma below, as she experienced three different clinical trials across three treatment timepoints to find her wonder drug and remission from non-Hodgkin’s Lymphoma.

Reflecting on the last two years, I have missed the opportunity to share PBI’s world-leading research with the global haematology community until now. This year I presented (in person!) at international conferences, reconnecting with both familiar faces and new global haematology experts, striving to advance science.

PBI provides educational resources for both consumers and health professionals and undertakes research into blood-related disorders via state-of-the-art clinical trials and fundamental science discoveries. COVID-19 has shown that international collaborations and global data sharing are essential for health research and improves disease outcomes for patients. As a small, local charity, your support provides direct assistance to allow continuation of this vital work.  Thanks to people like you, this year, PBI’s research team have been collaborating with Murdoch University to develop a universal gold testing standard to diagnose Thrombotic Thrombocytopenic Purpura (TTP), a rare and life-threatening blood disorder.

We’re also pleased to announce the commencement of the COVAXI trial. The trial looks at the immune response to the COVID-19 vaccines and pre-exposure prophylactic COVID-19 medication in immunocompromised patients over a 3–4-week period, by assessing blood markers before and after the prophylactic medication has been administered. While lots of research has looked at the COVID-19 vaccines on healthy patients, we are yet to identify the impact on patients with a weakened immune system. The aim is to see whether the COVID-19 vaccines play a role in improving immunity and whether pre-exposure prophylactic COVID-19 boosts the immune response for this group. Congratulations to the team - we look forward to seeing the important results!

Thanks to people like you, PBI’s clinical trials team has continued to grow, change, and develop, enabling us to advance medical discoveries and improve the care for people with blood disorders. As a doctor heavily involved in clinical testing and research, I am privileged to witness the power of science to change people’s lives. Translating bench science to the clinic has an impact on both present and future generations, from grandfathers to daughters/sons to grandchildren.

PBI undertakes multiple clinical trials each year as part of its work to prevent, treat and cure blood disorders. With your continued financial support, PBI can equip our researchers to continue to develop globally renowned research and clinical trials into blood disorders.

Please read about 60-year-old, mother of two, Gemma. Her story starts back in 2010 at the age of 48, when she was diagnosed with non-Hodgkin’s Lymphoma. After participating in three different clinical trials with many twists and turns, Gemma is now in remission and lives a healthy lifestyle in Broome with her husband of 40 years.

Without any other symptoms, I noticed a tingling and a lump under my arm and went to visit my local GP in Broome. My GP thought it didn’t look serious but decided it would be beneficial to perform a needle aspiration. However, the results from this procedure were inconclusive. So, whilst in Perth for a school reunion, I decided to book an appointment with a doctor for further investigation.

“During the diagnoses you feel sorry for yourself for a couple of weeks: then I thought: ‘put your big boots on’ and get on with it.”

The lump was removed and tested, and results showed that I had Follicular Lymphoma which is a form of non-Hodgkin’s Lymphoma. Despite my father having non-Hodgkin’s Lymphoma, it is still not known if there is a genetic link. He passed away at age 62.

“I never felt like I was going to die. Then I thought, this could kill you; I was flippant about it.”

Prof. Baker organised PEP scans and MRIs and found three spots under my arm, pancreas and neck. I underwent chemotherapy and then joined a clinical trial for the drug ‘mabthera’ with Perth Blood Institute’s clinical trial division. Twelve months into the trial I was in remission until they found a lump on my groin. Unfortunately, due to a chest infection I had to suspend my participation in the clinical trial.

“It’s important to stay positive throughout your cancer journey when things don’t go to plan, to stay healthy and fit and make good lifestyle choices.”

After the infection cleared up, I was able to enter a trial for a second time, and in this instance, I was on the trial for 18 months and the drug was working effectively. However, after another chest infection and lung damage I was forced to leave the trial again. Once I was well enough, I had an opportunity to re-join another clinical trial until its completion in January 2021, and after some time with the team, my latest scan showed I was clear of cancer.

“No one wants to face it; I didn’t look like a cancer patient.”

My daily life has returned to normal, but I am conscious that I am living with some unknown which could return whenever. If or when I experience more lumps, I face the reality of needing more treatment or going back on a clinical trial.

“If the trial doesn’t work you’ve lost nothing.”

It was wonderful to receive such amazing treatment and attention from Prof. Baker and the staff throughout the PBI clinical trial – scans, blood tests, and the constant monitoring and reassurance from doctors, prevented me from panicking about symptoms. At the start of the trial, it was difficult travelling from Broome to Perth; however, the trips were paid for by the clinical trial sponsor which was helpful. The PBI nurses were always available and very good at explaining things in layman terms too.

“Professor Ross Baker and Dr Maan Alwan were always a phone call away - I can’t fault them.”

Being in complete remission is wonderful; I have a good quality of life now thanks to the treatment I received from PBI’s clinical trial. Thanks to PBI, I am still able to manage my local BP station; babysit my grandchildren and travel abroad to Canada.  

I’m asking you to please give what you can. Whatever you give, your donation will provide funding for our researchers to advance new treatments and facilitate clinical trials. Every amount is vital to our research, no matter how large or small. Your donation ensures the development of next generation treatments and therapies, making an incredible difference today and into the future. Thank you for your support, I am truly grateful.

I wish you joy during this season and hope that you make wonderful memories enjoying the simple things.

Kind regards,

 

Professor Ross Baker

Chair, Perth Blood Institute