Natalia's Quest 4 Life

Hello dear family and friends, near and far! I find myself writing another update after almost two years. It is quite a cliche but I don’t know where the time has gone. And even then, I know a whole lot has happened since.

Natalia continues to battle on and her will to live and determination hasn’t waned. Her body though is tired and the effects of so many treatments and the cancer progression all are taking their toll. Nat wants to live and as long as she has the will there is a ray of hope.

The treatment in Adelaide didn’t work and she was withdrawn from the trial after 6 months of weekly trips to Adelaide.

By mid 2021 a period of conventional combination chemotherapy followed, with complications from severe allergic reactions that caused anaphylaxis on a few of occasions. Scary stuff. A strict desensitisation protocol was used to be able to continue treatment under very strict medical monitoring.

By the end of 2021 the chemo drugs had to be stopped because of their toxicity and treatment continued with a single targeted drug. A few months into 2022 and Nat started having complications with bladder function. A procedure was scheduled in May to investigate but was cancelled at the last hour due to the hospital going into COVID lockdown. Frantic calling and messaging with the hospital and even the Premier’s office succeeded in getting the procedure scheduled urgently. The outcome wasn’t good as cancer was found to be spreading into the bladder walls and the bladder had stopped working. Nat was then put on a permanent urine catheter, which comes with its own trials and tribulations.

At this point Nat was also put back on the full dose combination chemotherapy drugs to try to prevent the cancer progressing further and causing serious complications. At the same time Nat started researching possible trials all over the country and eventually another trial followed, this time in Sydney. The trial was testing an antibody drug conjugate in the dose escalation phase. The chemo was stopped in November 22 to give Nat a 4 week wash-out period before starting the new trial. We travelled back and forth to Sydney for six weeks. The first dose seemed to be working, with improvement in symptoms and Nat’s general wellbeing. However the second dose caused a severe allergic reaction and had to be stopped. A second try a week later caused the same reaction and treatment was suspended. It was back to the drawing board and so disappointing.

The trial doctor suggested to Natalia that there was a chemotherapy drug approved for triple negative breast cancer that worked on the same principles as the Sydney trial drug and that she thought it was worth exploring with Nat’s oncologist here in Tassie.

After weeks of toing and froing through the hospital bureaucracy because Nat would have to self fund the treatment, the drug was finally approved. Nat has now had three cycles of the drug with two infusions, each a week apart, followed by a week’s rest in between. The drug appears to be holding the cancer back with minimal progression detected.

Natalia is now about to embark on her fourth trial, at the Peter MacCallum Institute in Melbourne. This time a completely new therapy called Lewis Y Nivo - Car - T cell. It is a complex therapy and will involve several trips to Melbourne and long stays for the infusion and follow up monitoring. The Tasmanian travel health subsidy doesn’t apply because the treatment is a trial and there is no support from the institute because they are not a commercial entity, like the drug companies that often sponsor drug trials.

Natalia will have to pass a couple of further screenings before the treatment can proceed, but all going well should be having it in early May.

We are all in awe at her determination and the way she faces the challenges head on. She has her moments too, like we all do, but the strength she shows in bearing with all she has to endure is almost superhuman. Her unmeasurable love for her children Elena and Felix is her strongest driving force, and the loving and nurturing circle of family and friends that surround her help lighten the load at the hardest of times.

We are forever grateful and indebted to you all for your wonderful support, in all shapes, forms and sizes. The donations, the transport for school and appointments, the meal rosters, the visits and outings, the messages of love and support.

This time we ask that you please share the link to Nat’s fundraiser if you can with your friends, family and networks. It all helps, and we thank you greatly for it.

Please also feel free to reach out if you have any questions or would like more information.