Rosemary’s Story: Mantle Cell Lymphoma (MCL)

I am wife to John, mother to Bec, Kathryn, Ashlee and Matthew and Nanna to Flynn, Hugo, Levi and Nixon.

I was diagnosed in July 2023 after I discovered swollen glands in my neck and armpits. I was quickly diagnosed through a CT scan and biopsy of the nodes and referred to the Peter MacCallum Centre in Bendigo under the expert care of Stephen Walker and the wonderful team. My treatment has been shared between Bendigo and Melbourne.

I have recently received a stem cell transplant after having just completed 6 months of chemotherapy.

You know your body better than anyone. I felt that my glands were swollen 12 months before my diagnosis, but measurements were taken, and I was assured they were normal, so I convinced myself that I must be imagining it. So by the time I was diagnosed, the lymphoma was stage 4. Once diagnosed, I remained calm and positive, knowing that I was in the best hands.

I was incredibly blessed to have been able to continue my work as a marriage and funeral celebrant, work that I find very rewarding.

When I lost my hair during treatment, I purchased a wig to wear while working, but at other times, I wore a turban, a beanie or sometimes just sported my bald head.

I accessed information available through Lymphoma Australia, but I was careful to only research their website and stayed well away from Google, which can be outdated and inaccurate.

I also received a patient pack in the mail with some free resources and information.

I am eternally grateful for the care and treatment I have received and want to give something back, which is why I have joined STEPS For Lymphoma this March. I see this as a beneficial way of raising awareness, raising much-needed funds and also for regaining the strength I will have lost in my body through this treatment. 

To support Rosemary on her STEPS challenge you can visit her fundraising page HERE
If you would like to STEP up and help raise awareness and vital funds for Lymphoma Patients, you can join us HERE.

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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.