Let’s help keep Melissa well in 2024

Hi,

We are old friends of Melissa Begg, in fact we’ve been fortunate to know her for 40 years!

You may know that she was diagnosed with cancer a little over 12 months ago and has had a pretty awful time.

After initially being treated in December 2022 for what was thought to be thyroid cancer (including having her thyroid and adjoining lymph nodes in her neck surgically removed), it was only after the surgery that the doctors discovered the cancer was much more extensive and actually a cancer called Cancer of Unknown Primary source (CUP). As the primary cancer could not be found anywhere in her body, apart from the lymph nodes around her body to which it had spread, treatment has been very complicated. She has had various rounds of chemotherapy with all of the side effects. This initial treatment was abandoned mid-year 2023, with Melissa receiving a prognosis of only 12 months. It was no surprise that Melissa dug deep, did extensive research and decided to seek other medical opinions. She was invited to join a clinical trial in June/July 2023, but unfortunately, it didn't work, and her cancer continued to spread.

So, with the failure of two treatment regimes in Sydney, the cancers were growing, and Melissa was suffering severe discomfort in her neck and abdomen where the tumours were extensive; it was looking pretty grim. She was advised to speak with the palliative care team near her home on the Northern Rivers on the basis that she may need their services soon.

In August 2023, her new oncologist suggested radiotherapy to her neck and a new chemotherapy drug, T-DXd. Melissa's cancer was found to have a mutation called HER2, which some breast cancers also have. This drug targets this mutation. Since September 2023, Melissa has had these treatments at the North Coast Cancer Institute at Lismore in northern NSW. The travelling to and from Sydney for most of the year before then took its toll, and it's been so much better for her to be able to have her treatment locally, closer to home.

As with everything she does and following her holistic life view, Melissa has thrown all her energy into this. She learnt about self-care, began yoga, exercising and meditating, is eating plant-based nourishing food and returned to an old craft of hers, making ceramics to help with her practice of mindfulness.

Melissa has now had four doses of this new drug and completed the radiotherapy. The most recent full body scan done shows that the cancer, which was in multiple sites, has almost completely disappeared. The cancer markers in her blood, which show the activity of the cancer, have gone from being in the thousands to almost normal. Whilst they had hoped for some improvement, her doctors are amazed by her dramatic response to this combined radiotherapy and chemotherapy treatment, saying it is the best they have seen with this new drug. Her oncologists have taken an innovative and unique approach to treating Melissa's cancer. CUP is a rare and unpredictable cancer, and they have suggested she continue with the medication every month while it is keeping her well.

The problem is this new drug is very expensive. It costs Melissa more than $7500 per dose, which she needs at least monthly. So Melissa has already paid over $30,000. She has not worked in her business for a year (and can’t consider work for the foreseeable future) and has already spent a lot on travel and accommodation in Sydney during 2023 and accessing other supportive treatments. This drug is not covered by her private medical insurance (damn!), and the Commonwealth government only covers the cost of treatment with this drug for patients with an established "organ" cancer like breast cancer or lung cancer. But Melissa's case (CUP), falls between the cracks. We have tried, unsuccessfully to date, to ask the drug company to reduce the cost of the T-DXd for Melissa. It’s very unfair, but it seems to be the “rule”.

We are hopeful that Melissa will not need to seek palliative support anytime soon, but her treatment must continue. It is a dreadful situation to find yourself in, needing so many dollars just to remain alive.

Do you think you can help?

We are aware that there are financial strains on people at present and do not want anyone to feel pressured to contribute, but we also know that some of you may feel you are able and would like to help. Melissa has not asked us to do this, and she does not want anyone who receives this request to feel obliged in any way.

About her situation, Melissa has said to us the following:

"At the beginning, when I got the CUP cancer diagnosis, I cried at every single appointment because of the unfairness and the fear. I hated the thin letters from the hospital and from the doctors that in the end I could not even open, to see the words actually written in black and white.

I was so lost in the bleakness of it all. But eventually I realised, my life is still here now, I have my partner Joffre and my friends and loved ones. I may find out that I have 6 months to live, or a year, or 30 years – but whatever it is I have to enjoy each day. This is how I continue to try to exist. I have learned to be very present. I am grateful for each day and do my best, for me, each day.

I think that throughout this gruelling process there has developed in me a sense that all of us caring for each other is a counter force for the random awfulness of the cancer and the pain and suffering it wroughts upon a person. As long as you care for each other then you can have strength and you will have some power in this life. And that is a timeless lesson."

We love Melissa and have been overwhelmed by her tenacity and strength. We’re truly hopeful that 2024 will be a better year for her.

If you are able, any amount will be appreciated. If you’re not in a position to donate at all, please send your love - we think that might have helped a little too.

Thanks for reading about the wild (and traumatic) ride Melissa has been on and for considering giving support.

We wish you a Happy New Year!

Kath and Sharlene

xxx