Always Waiting... Always with Hope

Last updated: June 2019

Over the last 11 and a half years, I have been on 5 different types of oral chemotherapy. Been back on one of them twice, and back on another 3 times. I’ve also tried pegylated interferon. Trying to find a treatment that doesn’t annihilate me and that also controls my leukaemia to keep me in the medically managed remission I live in.

A stem cell transplant is on the table as an option.

Before the transplant becomes more of an option to be talked about, my amazing consultant keeps on thinking outside the box to try to find a treatment or treatment combination that works for me in terms of quality of life (and my leukaemia). But the quality of my life is their priority. And I’m willing to give things a go.

Coping with side effects like pain and fatigue

Imatinib was horrific for me. Severe debilitating pain. Dasatinib makes me exhausted and miserable.  I’ve tried this one twice to see if it was still as bad the second time. And it was. With, nilotinib, I had to fast and I just couldn’t do it along with side effects of fatigue and pain. Ponatinib brought on pain and fatigue. Bosutinib was ok with my energy levels, but my liver hated it. I was halfway to cirrhosis in about 6 weeks after I first started it the first time. Pegylated interferon every 7 days was awful. The first two days were horrific. Headaches. Pain. Nausea. Awful. I was then dropped down to every 10 days and it was ok! A bit of pain. A bit of nausea. But ok. However, my leukaemia rate began to rise so I had to go back to bosutinib, as I felt the best on it. The third time included steroids to stop my liver from being unhappy.

I really didn’t want to go on steroids. I am terrified of getting fat again. I was on a really low dose that didn’t really impact on much so my consultant thought... but I could see the scales very, very slowly beginning to creep up and I got really spotty. I called it ‘roid rash’. Not cool. I escaped my teens without being very spotty so getting spots like that in my 30s was a no. Luckily by this point, my liver had stabilised and I was allowed to come off the steroids.  It took a couple of weeks, but my skin has calmed down again.  (I still get chemo plague, but I’ll save that for another post).

On the hunt for a new treatment

I’m still on bosutinib and my energy is not good. I’m waiting for a new drug that the hospital has granted access for me for compassionate reasons, as it’s not widely available yet. I get it in about 4 weeks’ time. It works on a different binding site in the leukaemic cell so the hope is that I won’t feel as tired. I said to my consultant that ‘this is great’ with a big smile on my face. They looked at me and said, "With you, I never know." But as I said to them, "It’s worth a go. I don’t mind. If I get side effects, I get them and we will deal with it and then I will know it’s another drug to tick off the list."

Shared decision making with my consultant

My consultant is amazing. Always looking for new drug options that might be available to me. Always thinking of possible combinations to make the side effects less debilitating.

They have said to me that they are amazed at my attitude and how I’m always willing to try something new and give it a go. Well, I’m a glass half full person. If I wasn’t, I would have given up a long time ago.

So I’m waiting. Always with hope. Because without hope, you have nothing.

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