Kalmindon Vanta-Lighthouse Walk Team

A good friend, Sophie was diagnosed with Lymphoma in August, 2014. She was a fit, healthy female who exercised regularly doing Zumba, walking and over 50s aerobics. She had terrible back pain, had visited doctors, a physiotherapist and a number of tests had been performed. Results were coming back as negative but nothing was relieving the pain.

So we were all shocked when after a MRI, she was diagnosed with numerous tumours with spinal involvement. In the following days she was hospitalised and under the care of specialists who organised a series of diagnostic tests. She had Non-Hodgkin’s Lymphoma, Stage 4.

She commenced chemotherapy immediately. Her first treatment was on 4th September, 2014. Thankfully, after months of treatment, Sophie is now, in remission. With the support of her family, friends and medical profession, she always had a positive attitude, set small goals and believed she would get well. But the effects of Lymphoma are far reaching and even though Sophie is in remission her life has changed. She requires further MRI and CT scans for ongoing spinal issues.

In support of Sophie, research and treatment for people dealing with lymphoma, the Kalmindon Vanta -Lighthouse Walk Team, decided to use this challenge (45+km walk at Wilson’s Promontory) as a fundraising event to highlight, increase awareness of lymphoma and in a small way raise funds for essential research. Every little bit helps!

It will be almost one year to her treatment, commencement date, when Sophie, her husband Kevin, family and friends cheer us on our way to the WP lighthouse and have drinks ready for us when we return!

We have organised a number of fundraising events over the coming months –High Tea (very successful in June), garage sale, Postie Party and movie night are some of the events organised for August.

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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.