In December my doctor at Dana Farber said it was time to start treating my disease. The treatment is a 3-week cycle. I need to go to get a subcutaneous injection of a chemotherapy drug, velcade, on days 1, 4, 8 and 11, along with a dose of dexamethasone (a steroid) and I take a pill every evening for days 1-14 of revlimid and then i get 7 days off. Because of the frequency of the treatment it was decided that I would get my treatment at Smilow (Yale New Haven). How the relationship between my treating doctor at Smilow and my primary doctor at Dana Farber will work has been a little bit stressful. No one was very clear as to precisely what the parameter were.
I started treatment at Smilow on January 5th. It was a scramble to start it that day, and it was the day I “needed” it to start. The timing starting that date worked best for my daughter’s wedding and for my February trip to Florida. Fortunately we got it done.
I am halfway through the third cycle now. Side effects are nothing terrible and are mostly predictable.Day 1 is a weird combination of the stimulating effect of the steroid coupled with the flu-ish and tired feeling from the chemo drugs. Day 2 is usually a good day (even if I don;t sleep much the night of Day 1 from the steroids), Day 3 I am really tired and then it repeats.
I didn’t realize the subtle ways that the treatment affected me until my first “off week” when I woke up the first morning “drug free” and immediately thought, “this is just me, I feel like myself”.
On top of the chemo regimen I now also take acyclovir (antiviral medication) twice a day, every day even my off week, an aspirin to prevent blood clots, a multivitamin, and a variety of things to help with the nagging side effect of constipation. So, I have gone from being so proud of being middle-aged and on no medications, to having a medicine cabinet full of drugs I take every day.
I also have some neuropathy in my feet (a common side effect) and irritation at the velcade inject site (the administer it in your belly fat – lovely!).
So nothing onerous, haven’t missed any work (except for appointment time), just try to schedule events appropriately, avoiding my really tired days – definitely do-able.