It’s been a while since my last update but, despite a few ups and downs, the last few months have proved to be pretty plain sailing. However, it seems that just as I was starting to get comfortable, the beast decided it was time to shake things up again!
First, my last PET CT in mid-January showed that a few of the more stubborn mets in my lungs had grown slightly or showed higher levels of uptake and metabolic activity when compared to the scan I had in November. Nothing too dramatic and probably to be expected given all the interruptions to my chemo schedule in November and December because of a bad bacterial infection in my port.
My oncologist assured me this was just a minor blip but decided to shake things up and change my chemo protocol by stopping the Cisplatin and replacing it with a chemo called Navelbine. Navelbine is similar to Cisplatin but less toxic and easier to tolerate. My best mate Sid aka 5-FU also continues. Happy days … another 12 weeks or chemo just when I had three weeks left of the old protocol and was hoping to go start some sort of maintenance protocol and slowly comes next!!
Not sure who I was trying to kid because what has happened in the last few days has certainly shaken things up …
Last week, after my second dose of Navelbine I started feeling really rotten … light-headed, breathless, very fatigued and generally off-balance. I also had quite a severe headache. Blood tests showed that my haemoglobin levels were low and on Thursday I had a transfusion of packed cells to give me a boost. It helped slightly but the headache and balance issues continued. On Tuesday this week I saw my oncologist and she suggested we do a brain MRI “just to be on the safe side”… I’m seriously beginning to hate that phrase!!
The MRI showed that, the thing I have feared the most since I was diagnosed with MBC, has happened. The beast has managed to make its way up my spinal cord and into my brain and has made itself very comfortable in my cerebellum. Four perfectly formed little buggers just parking off and causing havoc!!
The headache I was experiencing was caused by a build up of fluid on the brain … it has been trying to protect itself from any further damage and I spent Wednesday and Thursday in hospital receiving large doses of IV steroids to try and reduce the pressure.
Brain mets cannot be treated with chemotherapy as the drugs are unable to cross the blood-brain barrier so cannot reach the brain. The only way of treating these buggers is with radiotherapy. As yet, a treatment plan has still not been finalised but I will have a better idea of what this will entail by Sunday.
Both my medical oncologist and my radiation oncologist are confident that we can beat this but have warned me that it is going to be a gruelling battle and, whilst the radiotherapy treatment will last for approximately three weeks, it will take approximately six to nine weeks for me to recover from the side effects. During this time, I will also continue with my chemotherapy program so that we can continue to treat the cancer that is in the rest of my body.
I am absolutely gutted by this new diagnosis and all the uncertainties that are connected to it and battle lines have now been drawn …
battle: a lengthy or difficult conflict or struggle (noun) or to struggle tenaciously to achieve or resist something (verb)
I am determined that I will get through this, that the radiation will have the same positive effect on the brain mets as it did on the bone mets and that I will get the “stable” diagnosis I have been hoping for.
For now, my family and I are trying still processing all of this but I promise that I will post regular updates on my blog or my Facebook page as and when I get them.
I also plan to keep on swimming … even if it is against the tide for a while.
Much love xxx