A 2 Week Treatment Break...Finally

Last updated: July 2019

A two-week break from treatment has started!!! Which is beyond amazing. I've needed this. The exhaustion has been beyond bearable. I have been at breaking point. I have been reminded why a transplant seems appealing.

Enjoying time free of side effects

But, I get my life back for 4 days! It's only 4 days as it takes 10 days for the drugs to leave my system regardless of what the half-life is, dictated by science. But, that’s not how bodies work. And which thankfully, something my consultant is willing to listen to and realise. She is amazed that it takes me that long to feel like me again. But she accepts it rather than say, "Well, the half-life is only this long so technically you should feel better after a day." I love my consultant so much.

Last night, I didn’t take my chemo for the first time and I have 13 more night of no drugs. It was a bit weird. I felt like I had forgotten to do something. Well, in a way I had. But, it was allowed rather than, "Whoops! I forgot to take it."

Working with my doctor to determine my treatment break

My consultant is relaxed about me having two weeks off. My leukaemic rate is stable enough (0.043% on the international scale) and has been around this for a few months so she knows that for 2 weeks I will be ok. I really wish I could have longer.

So, for now, it’s also bye-bye to Bosutinib! The hospital now has Asciminib in stock and the hospital has agreed to compassionate use for me so I start it in 2 week’s time. I can never tolerate the full dose of a drug so I can’t go into any clinical trials. Luckily, the hospital has recognised this and hasn’t insisted I go into a trial with it. Although, I seem to remember that the trial is possibly for newly diagnosed so I don’t qualify on that front either.

Trying new CML treatments to find what works for me

I am going into the new drug with hope. My consultant is always amazed at how willing I am to try another drug. In terms of fatigue, it can’t really get much worse at the moment in all honesty. And I’ve experienced horrific pain and nausea on others so as long as it’s not as bad as that...

I am always a bit surprised when I speak to other CML patients who have side effects but don’t want to try another drug ‘just in case.’ Sod that. I say try it! It could be so much better!!!

Close monitoring and not losing hope

I also know I will be very closely monitored on it. I’ll probably be back to weekly appointments for a bit with the instruction to email if I notice anything! There might also be potential cardiovascular risks but I’m young. I do lots of walking. I will be on a fifth of the standard dose. So, I’m not bothered about that. Not enough to not give the drug a go. It works on a different binding site in the cell compared to all the others. So, the hope is that I won’t feel as exhausted.

And that’s my hope. I haven’t lost it. Not permanently. I have it tattooed on me. To remind me. Every day. Not to give up hope, because without that there is nothing.

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