Amir’s Army – Angioimmunoblastic T-cell Lymphoma (AITL)

Sisters Arina and Mirna share their inspiration: dad Amir

“Our dad was diagnosed with AITL last April. As we all began to adapt to the new world of COVID-19, our family was hit with news that would change our world greater than the pandemic alone.

“Dad spent his first few months at the Alfred, receiving treatment and incredible support from their Haematology team during challenging times. As with most families of cancer patients, you find yourself wrestling between the weight of grief and fear of the unknown, against the need to fight hard – with and for them.

“Angioimmunoblastic T-cell lymphoma (AITL) is a rare form of non-Hodgkin lymphoma. Treatment is challenging owing to frequent relapses, few of which we’ve experienced. In September 2020, dad was accepted into a trial treatment run by a dedicated team at Monash Research Centre. Since then, he undergoes weekly check-ups and receives targeted therapy to continue his fight against this aggressive and stubborn disease.

“Despite all the challenges he’s faced, dad’s resilience remains exemplary, his dry sense of humour intact. He’s also now able to enjoy again what he enjoys most – fish, socialise and attend choir practice.

“Before dad’s diagnosis, we knew little of lymphoma. Today we know a lot more. Awareness, education and support are so important in human progress and organisations like Lymphoma Australia ensure families like ours, get the ongoing support we need.

“So, to give a little back for the lot they do, my sister and I are getting our Legs Out for Lymphoma in late March, to raise awareness of blood cancer and thank the hard working nurses and staff at Lymphoma Australia.”

Thank you for sharing your story with us and we hope Amir is out fishing again very soon!!

Arina and Mirna are getting their legs out on Sunday 28 March #legsout4lymphoma

If you would like to support Amir’s Army, or get your own legs out, please visit https://www.mycause.com.au/page/244998/amirs-army

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.

Useful Definitions

  • Refractory: This means the lymphoma does not get better with treatment. The treatment didn’t work as hoped.
  • Relapsed: This means the lymphoma came back after being gone for a while after treatment.
  • 2nd line treatment: This is the second treatment you get if the first one didn’t work (refractory) or if the lymphoma comes back (relapse).
  • 3rd line treatment: This is the third treatment you get if the second one didn’t work or the lymphoma comes back again.
  • Approved: Available in Australia and listed by the Therapeutics Goods Administration (TGA).
  • Funded: Costs are covered for Australian citizens. This means if you have a Medicare card, you shouldn’t have to pay for the treatment.[WO7]

You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.

For more information on CAR T-cells and T-cell lymphoma click here. 

Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.