Fertility, Fatigue, and Figuring Out the Right Treatment Regimen

After graduating from Edinburgh and leaving consultant number 1 behind (very happily!), I came under the care of consultant number 2 in London who was also pretty awful. To begin, anyone seemed better than consultant number 1 but then similarities began to appear. Didn’t listen to me. I’m sure they once again did the whole ‘you are young, you are fine’ rather than hear the words coming out of my mouth.

First came fertility preservation

When I changed from imatinib to dasatinib (Sprycel), they did arrange for me to have IVF treatment in case my fertility is damaged, which I will be eternally grateful for. I did, however, have to pay. For those in America, you are no doubt thinking, well of course!!! We are so lucky in the UK to have the NHS, but it doesn’t cover everything. There is a postcode lottery. My IVF should have been part of my treatment and covered by the NHS, but the IVF consultant put me through as a private patient. I don’t have the energy to fight it and see if I could get some money back. My parents had to borrow the money literally overnight. There was no time. But I have my eggs, and that is worth everything. I have no idea if I’m fertile. At the moment, there is no way in hell I am allowed time off treatment to have a baby. It’s all I want...

Then came fatigue and depression

Anyway, I spent I think 6 years with consultant number 2 on dasatinib getting progressively worse and worse. Exhausted. Chronic fatigue as a side effect of treatment hinders my life and follows me everywhere. Impacting all that I do. And getting depressed. More and more miserable. I was prescribed anti-depressants (which I didn’t take), instead of being listened to. By chance, I saw a different consultant, consultant number 3, who sadly got the brunt of my anger and frustration. Screaming at them so no doubt all the waiting room heard, about how fed up I was about everything. Not being listened to. Miserable. Hating life. My father, who was with me, told me to calm down. And for that to happen, it must have been bad! But they listened. They immediately cut my dose in half. I couldn’t believe that was an option. Why hadn’t that happened before?!?! "Come back in a few weeks, see if you feel any different," they told me, So I did, and felt no different. Then the magic words. “Stop taking them and let’s see if it’s you or the drugs’. 10 days later, I felt like me again. It’s the drugs. It’s not me. I’m not depressed and miserable! This was AMAZING!!!! And then that consultant left and moved to America. I couldn’t believe it. My knight in shining armour was gone! That consultant, consultant 3, told me, "If I had CML, I would want consultant number 4 to be my consultant."

Then came sorting our my treatment regimen

So with great trepidation, I saw consultant number 4, who has done everything in their power to get me my life back. They listen. They take action. They look into new drugs that I can try – as long as the hospital says yes. I have been through 5 different drugs with them:

• Dasatinib (Sprycel)
• Nilotinib (Tasigna)
• Ponatinib (Iclusig)
• Bosutinib (Bosulif)
• Pegylated Interferon

I went back on two of them to try them again and to see if they were as bad as remembered, and I am waiting (by the time this is published, I will know) to find out if another has been okayed by the hospital. I’ve been offered a stem cell transplant as a quality of life treatment. If it works, I get my life back. If it doesn’t. Well, I would be so much worse. And there is no crystal ball to tell me. So that option is still there, but one I am slightly reluctant to take.

At the moment, I am at the hospital every fortnight, trying different drugs and dosages to keep my leukaemic rate under control. And to see what least impacts my energy levels.

I am, however, completely listened to and that makes it all worth it.