This was my first week off from the Kyprolis. The schedule is three weeks on, one week off. Same with the Revlimid. I don’t know why. I celebrated my week off by going to work. Woo-hoo! I’m mostly working Wednesday mornings now. I wish they would schedule my appointments out farther than just the three-week cycle so I could add in some clinic dates. I know as soon as I expand my schedule, they’ll change the appointments to the mornings or something because that’s how my luck tends to go.
A couple positive things: my hair is definitely better. I don’t know if it’s growing in but it’s certainly not falling out at much as it was. I’d run a comb through my hair, and the ball of hair that came off my scalp was pretty astonishing. And it feels like my hair again. Before, it felt like straw.
Okay, I’m thinking. I said “a couple positive things,” but so far that’s the only one I can think of.
My feet are still pretty sore. I thought they were improving but maybe that was my imagination. It’s a weird thing to have the tops of your feet hurt. Even when a sheet or blanket touches them, it’s painful. And lately I’ve been getting shooting pains that feel like an electric shock. Fun stuff.
I’m still exhausted but I’ve only said that 100 times. On the weekends I can easily sleep 12 hours and wake up needing a nap. It really sucks. The doc in PA said to give the thyroid meds more time to stabilize. I hope that makes a difference. I’ve been thinking about the post-COVID world and being able to travel again, but why would I want to spend a bunch of time and money to go some place only to get there and sleep the entire time? But… no plans for any big trips until next year. Hopefully I’ll feel better by then.
It’s been about a month since I stopped the Velcade, and three weeks since I’ve been on the Kyprolis and Revlimid. Unfortunately, since the change, my creatinine has increased (not good) from about 1.6 – 1.8 up to 2.3. It’s been 2.3 for two weeks now. But I’m sure it can take some time to get this stuff into my system and have it do its thing. I don’t know what the next step is if it’s determined this isn’t working for me. I’m not sure that the docs themselves know.
I told the PA doc about the increase in the creatinine. She said she’d need more labs and urinalysis to see what’s going on. I have an appointment with the oncologist next Wednesday so I’ll see what he plans to order. It’s a hell of a lot easier when he orders stuff than when she does. It seems to me they both said they wouldn’t do another 24-hour urine until I’d been on the current drug regimen for two months. But I could be wrong.
My hemoglobin was 9.9 last Wednesday, just barely on the low end to receive the Aranesp shot. Maybe next week it will be above the cutoff.
I had to call Walgreens’ specialty pharmacy today to reorder the Revlimid (I get a three-week supply at a time) as I was told to do during my first phone call with them. I was transferred to a voice mail. The message said the standard “Please leave a message after the tone or push 1 for more options.” I pushed 1. “Thank you for calling. Good bye.” And it disconnected me. But of course.
Second attempt: called back, explained what just happened. The woman on the phone apologized, put me on hold for a very long time, came back on the line, gave me the number to call directly (the number I called was the number I was given last time; not sure why it wasn’t the correct number), and transferred my call. The new woman who answered said that my prescription was in the pre-authorization stage and that I should be receiving a call from them on Monday to arrange the shipping. I didn’t think to ask then if I actually NEED to call to reorder this because it was already in process. But I’ll ask when they call me. She then asked what number I called. I told her I was transferred and gave her the number the woman gave me before she transferred me. “No, that’s not the number you should call. You should call this number…”, and she gave me a completely different number. What the hey? Now I have three different numbers. I need to get that squared away too. She also gave me their specialty website where I can check the status of orders and such. I got very excited at this! “Can I use the website to order the Revlimid??” “No, unfortunately not. For Revlimid, you have to speak with a pharmacist.” Except I didn’t speak with a pharmacist. I only spoke with her.
That phone call took 23 minutes to accomplish I think nothing.
I just realized that it was nine years ago this week that I had my thyroid removed. Gee. Those were the days when all I had to deal with was “cancer-lite.”
And a year ago today I was packing up my crap in Pittsburgh to head back home the next day. I can remember how miserable I felt driving out there…I was full of fluid from the prednisone and probably looked like some sort of space alien with my thigh high compression stockings, denim skirt (all the better to pull up the ever-falling down stockings), and a mask. There were scant few people in Oklahoma and Texas wearing a mask. I remember how defeated I felt when I got to the place I rented and realized I had to climb up a flight of stairs (and haul all my crap up them) as soon as I walked in the door. The bedrooms were up yet another flight of stairs. For at least the first week and a half, I crawled up the stairs. It was much easier that way. It feels so much longer than a year ago.
Oh, I thought of a couple more good things:
My blood pressure is really good. Like 107/70 good. I told the PA doc that I’m about out of Lisinopril. She said she would send in for a refill but so far that hasn’t happened. If I run out, I think I’ll see what happens with my BP if I don’t take it. I’m still on two other BP meds. It would be great if it stayed low without the Lisinopril since it can cause an increase in the creatinine. So we’ll see. I’ll keep the doc in the loop, of course.
And the swelling has improved a lot all of sudden too—which probably is at least partially responsible for the improvement in the BP. It’s so much more comfortable. I still wear my compression socks because of all the road time I put in, plus I’m pretty lazy at work and am on my butt most of the day.
I have an appointment with the oncologist on Wednesday. The main reason is to see how I’m tolerating the new meds. Since the scalp-itching stopped, I haven’t had any other issues. I’ll see if there is a plan if the new drugs don’t accomplish what we’re hoping they accomplish. My appointment with him is at 4:00—and after that I have a three-and-a-half-hour drive down to one of my clinics. It’s going to be a long day.
Quick Zeker update: he’s been discharged from both the ER doc and the knee surgeon. He’s doing well, although he still walks funny. He’s eating much better and has definitely gained some needed weight. His hair is growing back on his legs and stomach, but so far his butt is still bald. It’s a pretty funny sight. He has repeat blood work and urinalysis with his regular vet on Wednesday, but I think all will come out well. I’m pretty sure soon he’ll be back to his normal routine, using the dog door, and getting up on the couch to watch TV with dad.
Low, Low, Low 