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Karine Tobin

Tell us a little about yourself

My name is Karine and I was born and raised in France for 29 years before leaving my country to go backpacking in Australia at the end of October 2010. After travelling, picking and road tripping for a month, I arrived in Sydney on the 1st December and a few weeks in 2011, I’ve started dating the man who would become my husband that same year. My son was born in 2014 and I was pregnant with our second child when I was diagnosed with melanoma in Oct 2015.

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

When I was about 22 weeks pregnant, I felt a pea size lump in my left armpit. My GP at the time thought it was due to a cold. Weeks went by and the lump got bigger and bigger. I was worried and it was very painful. I wanted to get it out so I went for an ultrasound. They needed to have a biopsy done to be able to find out what kind of infection it was. After another month waiting for someone to accept to do a biopsy on a pregnant woman, I finally had one. I was 34 weeks pregnant when the surgeon told me the results. It was melanoma. When he told me I had cancer, my entire world felt apart. I was pregnant and had a 17 month old son, I was terrified I wouldn’t see my children grow.

I had to deliver my baby early in order to do a pet scan to determine what the stage of melanoma was. So I delivered a beautiful daughter at 36 weeks. But as we left the maternity ward I had to go for a pet scan and a couple of anxious days later, my husband and I were told that I was stage IV. I had metastases in both armpits, collar bones, pelvic bones, tail bone and spine. My beautiful daughter was a week old, content in her pram, and we were now discussing treatment options.

Tell us about your treatment

As was BRAF positive, I was told 2 treatments were available. Somehow I was lucky because there weren’t any five years prior. I had to get the Taf/ Mek inhibitors as first line of treatment because Keytruda was on PBS only as a second line of treatment for BRAF patients like me. So I’ve started my treatment straight away. It was the first week of November 2015. By Christmas, we still didn’t know if it was working on me. Also, the treatment had very painful side effects with high fevers, stiffness, itchiness, weakness, dryness in the eyes, low count white cells, etc. I guess it was even harder while raising two babies and nursing night and days. But I still felt lucky compared to other patients. Finally, at the beginning of 2016 the tumours started to shrink. I still had side effects and taking steroids to reduce their occurrences. By August I was trying to into a third clinical trial with immunotherapy and washed out my treatment from my body for a month. Unfortunately I couldn’t go into this trial either but this time it wasn’t because the tumours were out of reach or because I didn’t have brain mets, it was because the tumours were too small! So, I waited another month without treatment to see if the tumours would grow back. But they didn’t. I had my first No Evidence of Disease (NED) results! Months went by and I was still NED…Usually after 3 months, most people would have a re-occurrence, and everyone after 6. But after 2.5 years now, I am still in the clear and praying it will stay that way forever.

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

After my terminal diagnosis, I found myself very distressed. All my family was back in France, I was a young mother of two babies and was scared to die without knowing the sound of their voice or being able to help them through life. It was hard to accept my mortality. There were still so many things I wanted to achieve in my life. So we started ticking items off my bucket list. I also learnt to let go, to live in the moment, to live my life to the fullest and accept that I could die. I prepared my funerals and organised everything just in case as I didn’t want to leave my husband with everything to deal with on top of having to raise our babies on his own.

It was also hard for my family and friends to understand what I was going through and I had to turn to other melanoma patients in order to find the support I needed. I’ve decided to write my memoir in order to explain my story to my children in case I couldn’t make it. I found writing very therapeutic too. I found myself in another kind of distress when I was told I was NED. The potentiality of a future after having being deprived of one for so long, was somehow terrifying for me. I wanted to make sure that I was making the most out of my second chance at life, honouring who I transformed into after so many life changing events and coping with survivor guilt and a sort of post-traumatic stress disorder. Dealing with my melanoma diagnosis and surviving it were both distressing at first, but I’ve found what I needed to go through it and came out on the other side. I guess the hardest part of the cancer journey is the feeling of loneliness it creates. Because not only I felt lonely but I couldn’t find many stories of stage IV melanoma surviving after 3 or 4 years after their diagnosis.

I’ve published my memoir “We Only Live Once, memoir of a survivor” to raise awareness and to give hope to people who are battling melanoma.

Tell us about your involvement with MPA?

Now that I’ve been nearly 3 years in the clear, I would like to become a patient advocate and I take every opportunity to raise awareness about this dreadful disease.

How has melanoma cancer affected your outlook on life?

Melanoma helped me see my life with mindful awareness. It helped me figure out what my priorities were and how to make the most out of my life. There’s no time to sweat the small stuff. Life is too precious to waste it. I cherish every day and live it to its full potential. Also, surviving melanoma helped me find my purpose. Today I dedicate my life to help people realise their dreams and other survivors to not only survive but thrive and live again after being given the clear results everyone is looking for.

Do you have a motto or personal mantra?

Carpe Diem – Live your dreams

I’m happiest when…

I help people reach their dreams and when I’m spending quality time with my family.

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