Maintenance



 Apparently I am now in the “Maintenance” phase of treatment. It means I am NED (no evidence of disease) and treatment aims to keep me that way. You may think Oh that’s great but let me tell you the honest truth. IT STINKS!

Currently I’m on an enforced 2 week break from Ribociclib because it is messing with my eyes again. This drug stops 2 proteins that potentially can make cancer cells grow. It’s so toxic you can only take it for 3 weeks at a time and it has the potential to mess with your heart and liver. I started in June on 600mg but in August had to drop to 400mg because it was causing vision trails. Now something else has cropped up. On Thursday I suddenly lost binocular vision. This mean my eyes were focused separately but not together. It only lasted for a minute but was quite scary. It’s the second time it’s happened so I knew I needed to investigate so off I trotted to the hospital.

In A&E I flashed my cancer red card which is supposed to get me seen quicker. Triage sent me to the eye clinic. They were swamped and could only triage me which I couldn’t see the point of. I’d been trying the Oncology 24 helpline for a few hours with no answer so I decided to wander round and go to Oncology myself. There, I grabbed a nurse who couldn’t help but who gave me the direct number for my oncologist’s secretary. She managed to get the helpline to speak to me and I got agreement to stop the Ribociclib for 2 weeks.

This still didn’t solve what was going on with my eyes and AI was talking about brain lesions and MRIs. I was sitting on a bench outside the hospital when I suddenly remembered that I have always been able to make my eyes go slightly out of focus so I asked AI if this could be relevant. BINGO! Apparently the Ribociclib drug has made this worse by causing neural fatigue.

So I don’t need an MRI but I do need potentially vision therapy and PRISM glasses. Fuck knows how I’ll pay for them! I’m seeing my optician on Thursday and they will refer me to Orthoptics.

The advice from AI is to resume Ribociclib after 2 weeks but on a lower dose of 200mg. Now I just have persuade my oncologist to agree. I know I need to start taking it again as it cuts my recurrence risk by 50% but this is hard. 

At least for the next 2 weeks my vision will be ok, my digestion should improve and the leg pains should lessen. That should leave me with the joint pains, hot flushes, fatigue, low moods and brain fog from Exemestane, my other drug.

Bloody hell, this is a lot of crap to deal with!


Ladies, check your boobs!!!!

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