I finished up yesterday’s blog this morning so that one covered the stimulation injections from last night. Nothing too exciting came of that, other than the steroids prevented me from falling back asleep after the 3:00am shot, lucky me.
This morning started out the usual way here with breakfast #1. I didn’t snap a picture of it because it showed up a little late and I was frantically trying to chow down as fast as possible before getting my steroids this morning, that still failed and I didn’t get it all down before the process started. It was the usual food; a bowl of oatmeal type slurry, baby yogurt that tastes similar to sour cream, and bread, along with a tea bag and copious amounts of sugar packets.
Then Dr. F showed up and did the daily blood pressure testing and asking how things were going, how’d I sleep, any problems, etc. He said the steroids would be here before 10:00am, and just like yesterday they were here shortly after that. The nurse today actually had me lay down before she stuck in the needle, but she went with the same arm and hit another vein right next to yesterday’s spot. I was quite impressed given my veins are tricky. But she didn’t tape the needle in very well so I literally could not move at all the entire time. Luckily the steroids go really quickly, usually within 15-20 min they are done. Then I got to walk around with the gauze stuck to me for 30 minutes before I could pull it off.
So my HSCT buddy from Australia started her first day of steroids today, she’s a day behind me but we’re on the same floor, so we were getting ours done at the same time and finished up together. We decided to head back to Red Square to check out some of the May 1st Parade festivities going on there. The amount of police and military there was insane, literally busloads and vanloads of them absolutely everywhere. We also watched some guys do mock battles with swords and shields and watched people dance around to a very offensive English song, obviously they had no idea what the words meant, we couldn’t stop laughing watching them dance to it. The Square itself didn’t open back up till 2:00pm and we didn’t want to wait that long, so we strolled around a bit and then headed back towards the hospital. But it was still nice to get away for a little bit. After that I headed back to the marketplace in the old castle near the Vega to stroll around and see what everyone was selling. Of course you have the vendors geared towards tourists, but it also has a section that is more like a flea market geared to locals where people just sell whatever they want. Old cameras and watches seem to be very popular items at those booths as well as old Soviet memorabilia. Here’s a few pics from the day:
Then I hopped on a tram and got back to the hospital and resided there for the rest of the day. Dinner was around 6:00pm and was an interesting combo, not bad, but interesting. I believe it was poached white fish, mashed potatoes, bread, and cookies. Poached fish really doesn’t have much flavor so it was easy to get down. Here’s a pic of that meal.
So since I didn’t get around to discussing it yesterday, let’s discuss the stem cell stimulation process that I am currently undergoing, also known as the mobilization stage of HSCT. It is typically a 4 day process to stimulate the stem cells followed by harvesting them, but if you don’t get enough the first day it can take an additional day or two, which means you continue to get the stimulation shots and steroids until enough are collected. Basically the process consists of getting an infusion of steroids every morning around 10:00am, the paperwork says 11:00 am, but maybe it depends where you are at for starting time, I seem to be the first one to start everything, so I have the early time I guess. You get 200ml of them every day and they infuse in about 15-20 minutes, pretty fast and not really painful, at least not for me. This is a much lower dose of steroids then if you were getting them for a MS relapse, then usually you are getting 1000ml each day, way worse for side effects on the high doses. You also are supposed to take an antacid pill before breakfast and dinner each day, not really sure what that is supposed to do, but I guess it does something.
The steroids are followed up by G-CSF stimulation injections that are given subcutaneously at 11:00pm and 3:00am. These injections cause your body to produce excess quantities of new stem cells in the bone and it forces them into the bloodstream where at the end of the 4 days they will be harvested. On Tuesday morning, bright and early, I will be getting a catheter placed in my neck to harvest the stem cells, this is done under local anesthetic and they do a chest x-ray to ensure placement is correct. So then I will look like some alien creature with all these tubes dangling out my neck, sexy… The goal is to collect all the stem cells in one day, but for some people it can take up to two to three days to harvest enough. People who have recently come off certain MS medications like Tysabri often take an extra day or two to get enough because the DMD affects the body more. The goal is to collect 2 million or more hematopoietic stem cells per kilogram of body weight. Then moves onto the next stage of treatment that I will discuss more when we get to that point. But it sounds like a fun time right????? On the plus side our treatment group all interacts well with each other and we are here to support each other through the entire process.
So this is what my arm looks like tonight after last night’s onslaught of the injections:
So far I haven’t had any issues, other than the sleeping issues pertaining to the steroids, but that is the most common side effect from IV steroids, most everyone in my group is battling that issue or will be tonight. If I get any side effects from the stimulation injections that will probably start tomorrow since it’s building up, the most common side effects from that are bone pain and muscle pain, oh the joys. But one has to look at the bigger picture, it may hurt now but the goal is to halt this bastard disease, so the pain will be worth it. One positive is that the IV steroids have calmed down my optic neuritis that was flaring from the airplane flights and my vision has returned to normal.
Onward to the injections tonight!