Since my last post I have had one major complication occur due to treatment. Hemorrhagic cystitis. Well what's that? It's bleeding of the bladder, and it's easily the most painful, and bothersome side effect that I have gotten from my treatment. It started on Friday morning when I noticed that it was painful to urinate. This was new to me because usually during my B treatment weeks I pee in morse code by Wednesday(Grown ups reference), but it would never get any worse than that. Especially not painful. This couldn't be good. I told my oncologist about it, and he increased my Mesna dosage to protect my bladder, and said if it gets any worse then he would cancel my ifosfamide chemo drug on Monday.
On Saturday it was more painful, and also more frequent. It's now Thursday as I'm writing this, and the longest time I have had in between peeing is an hour and a half and that was today. That includes nights too. Average time is 15-20 minutes during the day, and 30-60 minutes at night.
On Sunday it got even worse. It was just as frequent as before, but much more painful. Like so painful that my eyes would tear up every single time I used the bathroom. It also burned. As weird as this sounds, I started to stand on my tippy toes while I urinated, and it was the only way I could go with all of the pain I had. I guess my focus on balancing my body is what helped me focus on that instead of the pain. And to top it all off I was now peeing blood. I called up my oncologist, and he canceled my ifosfamide chemo, but scheduled me to receive extra mesna on Tuesday through Thursday of this week with some hydration. The unfortunate thing about hemorrhagic cystitis is that it is so much easier to prevent than treat. This is going to take weeks to heal completely. Also on Sunday it was much more urgent. When I would have to go, I would have to sprint to the bathroom sometimes(and that's no exaggeration folks). At one point I just sat on the toilet for over an hour because it was the most comfortable place for me. My treatment was in the city on Monday at 8 am so we booked a hotel for the night so we wouldn't have to get up at 4 in the morning.
On Monday I got pills that help with the discomfort, and they help a lot. I was taking my leftover diuladid from surgery, but they weren't helping much. I was still peeing blood, but at least I wasn't in as much pain. The Pyridium pills really help take the edge off.
Tuesday was about the same as Monday.
Wednesday I was a little bit better with the pain, but everything else was the same. The burning was gone. By this day I was just so tired though. It's been 2 weeks in a row of treatment with not even close to enough sleep.
Today. Pain is a lot less than yesterday. I would say it's about as painful as it was on Saturday. There is still blood, and it is frequent, but not urgent. Today was my first comfortable car ride in a week. It's a good thing too because I plan on going to Joey's eighth grade night basketball game tonight.
My take on this week: This week really sucked. There is really no way I can look at the past week, and not be upset about it. Missing out on the chemo on Monday isn't too big of a deal, but I hope my symptoms keep improving so I won't miss out on any more doses or my schedule gets pushed back. That would be a problem. There are three things that can cause hemorrhagic cystitis. Cyclophosfamide, Ifosfamide, and radiation. I receive cyclofosfamide on my A treatment, and I get that next on Wednesday next week. This needs to keep healing up. I think this complication really proves how toxic these drugs really are, and how much more my body can take of these chemicals(not much). At least I'm nearing the end. I don't plan on the next cycle being any easier than this one, but I'd like to be surprised. As a whole, treatment has been so much more difficult in this second half of chemo than my first three cycles. I'm planning on the bone pain again because my counts are mirroring my last cycle perfectly. That should happen on Sunday or Monday.
There is going to be a different type of post on here in the next couple of days. Be ready for it.
Wow Mike, sorry to hear about this complication! It is ringing alarm bells for me because Mathew has had these symptoms several times over his treatments, but they usually last a day or two and are very mild. Next time this occurs I will bring it up with the Oncologist right away! I hear you about the effect of chemo on the body as well... I sure hope your last couple of cycles are easier for you. Mathew goes in on Sunday for his next round of inpatient chemo (Etoposide & Ifospamide). He has 10 radiation treatments left and he's done that. Can you see the end of treatment coming for you? Slowly but surely ~ Hang in there
ReplyDeleteThanks. Yeah I'm so close now. One more month to go! Definitely keep an eye on the urinary issue because it progresses fast. One day I'm just hesitant with peeing, and the next day I'm in a lot of pain. It might be a good idea to get extra mesna on the IE treatment to protect his bladder. I'm getting it for my last cycle. I wish I had gotten extra before this all happened. It may have prevented it. How close is Matthew to finishing by the way?
DeleteMathew is on cycle 9 out of 13. This is his 5 day inpatient cycle and I think he has one more of those left. The other 3 will be the nasty outpatient one. He is taking about 3 weeks from treatment to treatment due to neutropenia so another 12 weeks to complete chemo, barring no further complications. He is down to 8 radiation doses ~ yahoo! We have to wait 2-3 months after everything finishes before we see how much of his tumour is left and what the surgeon will decide to do. It is a little nerve-wracking though, to know that soon we will be in the "wait-and-see" mode rather than active treatment...kind of scary. Judging by your health I expect you will bounce back quickly; Mathew will probably take longer as his leg muscles are very weak from not much walking the last several months.
Deletealright. So his last two cycles will be the vac regimen? Is there a reason for that extra vac treatment. My treatment is 6 vac, and 6 IE. I'm going to ask my oncologist about it because I have seen others have 13 cycles like Matthew. I know what you mean about the active treatment. The anxiety is starting to hit me too. My goal is to get to the miles2give run on the 15th of April in NYC which will be a few weeks after I'm finished.
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