Hello everyone. I started to write this entry last week, on Wednesday, the 12th (As I am sure you can tell from the photo). Why did I come back to the blog? Some stuff has happened since I stopped MTX.
The biggest is that my counts were good for a while, then they started to decline – my neutrophils kept bouncing around 500-600 for the middle third of 2019, then from the end of November on, they were either 400 or 500, so I had to get blood draws every two weeks. After I saw my managing oncologist in NYC at the end of January, my neutrophils had dropped to 200, so the decision was made to start up treatment. At first, his fellow caused me quite a bit of anxiety by saying we would start with MTX, then the oncologist came in and said “No, no, we’ll start you on Cytoxan (cyclophosphamide), your side effects on the MTX were way too severe.”
My first day of Cytoxan was February 14th. Assuming I respond, I should be on it for 6-12 months (We are aiming for 6-9 months, though). The Cytoxan will be taken every day, and I also have to be on an antibiotic (levaquin), antiviral (valacyclovir), and an antifungal (posaconazole) alongside them, as a precautionary measure. It took a bit to get all of the medication – cytoxan had to be mailed from a specialty pharmacy, and our regular pharmacy took a little while to get the posaconazole in stock, as it is not exactly a common medication (It retails for something like $6000-$7000, it cost our prescription plan around $4500). We also wanted to get instructions from my local oncologist, so we knew everything to keep an eye out for and to just have that general reassurance only a doctor can provide – since even if you read every article about it, that doesn’t replace talking to your doctor about it.
I’ve also been taking my medical marijuana to help nip any potential side effects in the bud – better to use it before I need it, just to be safe. Medical Marijuana laws have become less restrictive here in New Jersey, so once I get my renewed card in the mail I will head to my dispensary and see what they have – some edibles are now allowed here, which might be easier for me to take.
It was nice to talk to all of you again. I hope all of you have been good in the last few years – and I hope all of you continue to be good and feel great.
Talk to you soon.