Shane & Kylie

PATIENT STORIES - SHANE + KYLIE

Check ups in between November 2021 noticed a lump a few cms away from initial incision. We went back and had MRI and CT scan in late November or early December. Sadly Shane was diagnosed with stage 4 metastatic brain and lung tumours.

22nd December Radiation and immunotherapy started with ipilimumab/nivolumab no more treatment as when due for second treatment, he went into massive liver and thyroid toxicity. That was in January 2022 so no treatment from Jan to Feb and now have had our 4th nivolumab an latest scans say out of 21 tumours only 1 is left in lung.

We live in Brisbane and we would say to anyone having to go through the treatment; strap yourself in for a rollercoaster ride you will want to get off but know it’s going to be worth it in the end..

Apart from the first lot of side effects, my husband hasn’t had much from the immunotherapy its been more the medications.

Personally, I know it played with his behaviour, mood swings, and sometimes aggressive the lot, its been a horrid 5 months.

Ive watched my husband have days where he could hardly move let alone eat or drink. Shane lost 15 kgs within a month. I watched him become someone I didnt even know .

He has said that his body doesnt feel like his anymore as the fatigue is the biggest killer for him but just trying to keep up with hydration.

Advice is to stay hydrated sleep, nap when you can but Shane said when he slept for hrs he felt worse.

Dont ignore your body listen to it an call an oncologist or present to the emergency department if unsure that way things can be sorted very quickly.

Thank you and we hope we have given you some an insight into what it’s like to have stage 4 advance melanoma.

Kylie and Shane.