Deb Butler

MPA Patient Story - Deb Butler and family smile at the camera

Tell us a little about yourself

I am a 54 year old mum of two young twin girls.  I live on the beautiful Sunshine Coast in Queensland with my husband and daughters and work as an Investment Analyst for the Sunshine Coast Hospital and Health Service

When and how did you first find out you had melanoma?

I had a strange mole that everyone thought looked nasty.  Since my early 20’s I had been getting it checked each time I had a skin check and was always told that it was ok.  In October 2017 I noticed that it had become scaly.  I visited my doctor the next day and he removed it immediately. It was a stage 1b melanoma.  In August 2019 I visited my doctor for persistent back pain.  A CT scan identified a lesion in one of my ribs and suspicious spots in both lungs.  A Biopsy and PET scan confirmed it was BRAF + melanoma.

Tell us about your treatment

My initial treatment was targeted therapy but I couldn’t tolerate it and consistently had fevers and rigors.  Eventually the dose of medication was reduced so low that the melanoma recurred in my right lung and brain.  I tried a full dose of targeted therapy but still could not tolerate it and was moved immediately to immunotherapy – Ipilimumab and Nivolumab.  I underwent Gamma Knife Radiosurgery to control 6 brain metastases.  I also had radiation to a soft tissue metastasis in my right hip that developed just after I commenced immunotherapy.

My first scan two months after starting immunotherapy treatment identified the soft tissue metastasis in my hip, however it was shrinking by the time we did the planning scan for radiation.  The next two three monthly PET scans have failed to find any melanoma.  I had a FET PET scan to determine if the increase in size of two brain metastases was due to progression or oedema.  Fortunately, this identified that the metastases were inactive.  My last MRI showed that they are shrinking.

I will continue with an infusion of nivolumab every month for the remainder of my two-year treatment period.

What challenges did you and your family and/or friends face after your diagnosis?

The first real challenge we had was when my brain metastases were discovered.   I immediately ceased driving and this significantly impacted our family life.  Young children need to get to school and extracurricular activities and this was difficult when only one parent could drive.

It was particularly difficult for myself and my family when the side effects of treatment made me very ill.  I lost consciousness while home alone with my children when my adrenal glands failed.  I had a significant cognitive decline (aphasia) when my brain metastases caused oedema.  I was unable to read, complete sentences, use technologies.  I couldn’t remember many things – months of the year, my childrens’ birthdays, what things were called.  For a number of weeks it wasn’t apparent if this was from disease progression, so it was a particularly scary time for everyone that is close to me, and distressing to me to see my children so upset.

Throughout my whole melanoma journey I have had the support of an incredibly compassionate Oncology Psychologist.  She has been amazing at helping me to stay focused and positive, and she provided me with a safe place to cry when the going got really tough.  I’ve also been supported by a wonderful nurse and an exercise physiologist who make sure that I am doing everything I need to stay healthy.

Tell us about your involvement with MPA

I attend monthly meetings with the Sunshine Coast MPA support group.  It’s really important to find others in your community who understand your warped, difficult reality.  I get so much support and information from the MPA facebook group.  I’ve made friends with a few people who are at similar places in their treatment and we regularly chat via DM to check in with each other.  I’ve also used the services of a financial advisor after Nita Murray provided me with contact details so that I could ensure my insurances were optimised.

How has melanoma cancer affected your outlook on life?

It sounds really trite, but I now appreciate how short life can be and approach everything with this in mind. I do things today and don’t wait for tomorrow that might never come.  I do more to make myself happy rather than putting myself last.  If the office needs me to do extra work and it will impact other plans that I have already made I now say no without feeling any guilt. I don’t worry about little things.  I appreciate the value of community – so many people have supported my family when things got tough.

Do you have a motto or personal mantra?

No, that’s not really my style.  But I do bang on to anyone that will listen, and some who won’t, about the importance of meditation.

I’m happiest when…

I am listening to my daughters giggling together or I’m walking along the beach.

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