Questions About Chemotherapy

[medi]

Last might I dreamed I was writing in a notebook, but there was no empty pages left, I remarked to my nephew in the dream about how this always happens in my dreams. I had a dream where I watched a plane crash a few days ago, today I saw a video of an airliner crash in Nepal that was pretty much the same thing. I have dreams with like situations and I recognize that while I am dreaming, it's wild.

Some years ago, or decades, I and my wife had a horrible experience. I had dreamed that night about a basketball player getting killed and I told her about it at breakfast. Those days dreams weren't so common for me.

Well, I was off at work all day and got back to the house a bit late and before she even put dinner down she asked me if I'd seen the news and I hadn't. We figured out the timeline and a pro basketball player had been shot after I had that dream. That sort of happening can be very scary. But it could also have been a one-time coincidence and just an awful one.

Only ever had one other case where a dream sort of stopped something from happening. We didn't continue down a stretch of road because it had all happened in a very bad dream I'd had before that evening and the fella who was driving trusted me and we turned around. But that was way different from that basketball fella and that dream.

 

[beefheart]

Some years ago, or decades, I and my wife had a horrible experience. I had dreamed that night about a basketball player getting killed and I told her about it at breakfast. Those days dreams weren't so common for me.

Well, I was off at work all day and got back to the house a bit late and before she even put dinner down she asked me if I'd seen the news and I hadn't. We figured out the timeline and a pro basketball player had been shot after I had that dream. That sort of happening can be very scary. But it could also have been a one-time coincidence and just an awful one.

Only ever had one other case where a dream sort of stopped something from happening. We didn't continue down a stretch of road because it had all happened in a very bad dream I'd had before that evening and the fella who was driving trusted me and we turned around. But that was way different from that basketball fella and that dream.

I used to work for an airline, I frequently have dreams where I flew somewhere and need to find an empty flight to standby on. Well, it's very hard to read in a dream, words don't make sense. Find the movie "Waking Life" it's exactly how I dream.

 

[medi]

This gave me a chuckle, as I also felt that at times the food was really lacking:

The shitty hospital food was my biggest bug.

But we have a 7-11 in the next building and if one's timing is right we can sneak out and get over to 7-11 and get some extra stuff that improves the taste buds' happiness. Only problem is hospital security needs some kind words to keep them from reporting us for sneaking around. Especially if we are hauling that drip hanging thing around with us.

 

[soylentgreen]

This gave me a chuckle, as I also felt that at times the food was really lacking:



But we have a 7-11 in the next building and if one's timing is right we can sneak out and get over to 7-11 and get some extra stuff that improves the taste buds' happiness. Only problem is hospital security needs some kind words to keep them from reporting us for sneaking around. Especially if we are hauling that drip hanging thing around with us.

I had my family bring in pizza and other takeaways or just did not bother to eat. But my biggest problem was that chemo was screwing with my taste buds. Everything tasted weird and off while I was doing chemo.

 

[justabubba]

What sleeping agent was the pleasant surprise?

 

[medi]

What sleeping agent was the pleasant surprise?

< < < Part One of Two > > >

The sleep pill medicine is called Brotizolam, and here is some info on that:

Brotizolam. A review of its pharmacodynamic and pharmacokinetic properties, and therapeutic efficacy as an hypnotic - PubMed

Brotizolam is a new thienotriazolodiazepine derivative with a pharmacological profile similar to that of benzodiazepines. It is indicated for use as an hypnotic in the management of insomnia, although it also has anticonvulsant, antianxiety and muscle relaxant properties in animals. In clinical...

pubmed.ncbi.nlm.nih.gov

And the surprise was if I take some Ibuprofen an hour before the sleeping pills, 2 of them, the sleeping medicine works amazingly better. Before I discovered that the Brotizolam wasn't so bad, but would still allow maybe 3 or 4 awakes in about an 8-hour sleep session. My choice of vocabulary "awakes" because that is how I logged them when I was studying and trying different sleeping pills. And usually, if I don't take any sleeping pills, I have an awake about every hour or maybe 90 minutes. Now, when I use the Ibuprofen first I can get 3 or 4 hours straight with no awakes, and there have been a few times, if I had been up too long before the sleep session, I could get a straight 7 to 8 hours, which was not even close to possible with any other type of sleeping medicine.

Now, for you folks in the U.S., and maybe some - - - well, the UK, I think I remember correctly, that Brotizolam is not allowed. I think I am remembering that correctly. Now, here in Japan, they are super strict about how many pills a doctor can prescribe per visit, so if it is every two months instead of every month the number of pills can be a tad short. And that is even if one is careful and not using them all the time, which I don't. I use them when my schedule demands a night of good sleep because the next day I have meetings or special work and stuff.

Oh yes, and these are the 0.25 strength ones. So what we started doing after I did some research was have the doc state he was prescribing a double dose each time, which the Ministry of Health (MHLW) here does allow, but most hospital administrators don't allow it because of the possibility that a patient could use them in a harmful way. I think that the earlier, safer style is because a patient could take all those at one time and it might knock them out really bad, but maybe not cause death.

Truth is, the doc and I are not sure we're going to get away with this double dose technique for too much longer. That hospital has a hardcore admin guy and he sure doesn't like me. But he is also a little bit scared of me and my connections and so he treads careful when we have to dance around an issue. We'll see how this goes, but I am also very careful and I can sort of start to create a stash to tide me over if this trick gets caught.

In fact, I still have 6 pills left from the last prescription, and need to take two tonight, but still, that is a lot better than was happening before the next to the latest meeting the doc and I had. Sometimes I can do okay with just one pill, but that isn't nearly as good as the two per sleep session.

And I still have a few pills of another kind from when we were experimenting and those can be okay, but the problem with those is they cause trouble the next day and going into a meeting and looking all tired and stuff just doesn't cut it in some of my dealings. So far, the Brotizolam doesn't cause trouble the next day. Keeping my fingers crossed that it stays that way.

< < < Have to break this into two parts. > > >

 

[medi]

< < < Part Two of Two > > >

But one not-so-good drawback is when I get a really good sleep I am in rather bad pain the next morning and have to take a special pain pill for that. That one contains some sort of opium product mixed with acetaminophen and it works really good after about 30 minutes or so. We haven't been able to come up with why a good sleep causes that bad pain trouble. But then one of my doctors is still amazed that I can show up for his appointment without using a cane or the walker thingy. He's the doc that is trying the special bone marrow medicine. He wanted me to use a needle style, but I hate needles and sure couldn't stick one in myself. But lucky for me he found out they have a pill style, but it is mighty expensive stuff. Well, all of this has a medical bill that is amazing. Lucky I can afford it. Truth is, I really should be using military facilities, but back in 2017, when they first discovered the cancer I had already been getting treated for a really hardcore skin problem and the military docs sent me off-base to see what the Japanese docs could come up with and then my friend at the base after the cancer was discovered advised I try and stick with the Japanese medical folks, if I could afford it. He's a retired doc. A Comrade in the VFW. I figured his advice was worth paying attention to.

Medically, I've been on one heck of an adventure. That skin trouble was amazing. Nobody ever figured out what was wrong. BUT there are a few that think that nasty chemical way, way back that I once had the unlucky encounter with could be the root of a lot of the recent troubles. But way too late to fuss about that with the Vet Department and so I'll just stick with the present program. Them docs have done some fine work keeping me alive, even if I am sometimes a not so great customer. I don't care for unprofessional style work and we had one doc who really blew it. That was a recent case. Have had a few others that were really strange about some things. Truth is, not all Japanese folks are keen about helping a U.S. citizen. Even the professional medical folks. Way too many Japanese families have awful stories to tell about that war trouble and some folks, no matter their profession, carry a grudge and can't hide it.

Uh oh, this post got way too long. I wonder if that limit has been hit.

 

[justabubba]

medi, thank you for that comprehensive description of the sleeping assistance you have found to work
it could prove beneficial here in the US if available
while the Japanese system can be quite efficient it does subscribe to the approach that the nail that sticks up gets hammered down
thanks again for your thoughts and experiences!

 

[noonereal]

This cancer stuff is a fair bit of a bummer

I am 5 years cancer free.
A different treatment plan than you having no doubt. My uncle also had cancer. He receives a different treatment than you or I.

 

[zincwarrior]

And one more point, if I may. The dreaming trouble is just one part of this whole chemo thing. You'll please note that the thread title is covering chemo as a whole. Meaning, a thread for a general discussion about chemo stuff, as in feedback.

Some might be good stuff. Like I figured out a really neat way to get a certain sleeping pill to work better. That one caught my doc by surprise. He hadn't been told about that before. I discovered it quite by accident.

And sleep trouble is definitely a part of the chemo stuff. Getting that under control took time. But some of you folks in the States don't have access to a certain kind of sleeping pill and I aim to do some more research on that one. Some sleeping pills can cause real trouble. I had to experiment for months and even then the best answer came by accident.

Are you able to keep up your weight and iron levels?

 

[humbolt]

I don’t know. I had “chemo lite” infusions. The chief thing I noticed was that I was always tired. No particularly vivid dreams. Some food tasted a little strange. Acidic foods had a metallic taste. I got Covid shortly afterward, so it all became a little muddled - attributing symptoms to one thing that may have been the result of another, or both. I was fortunate, considering what others I met were going through. I hope you have a good outcome.

 

[medi]

Are you able to keep up your weight and iron levels?

I think it was the second relapse that caused a pretty significant weight loss, and given that I have never been a heavy type human that meant I was into looking like those classroom skeleton things for study, except some teacher forgot to remove the flesh. Although, I shouldn't be joking about that stuff, should I?

Anyway, after I/we (I figure the docs and family make it a 'we' thing) got through that 2nd relapse I probably added a bit more weight, but not much. And have pretty much remained so since. But I also figure whatever muscle stuff I had I lost. I was never a big muscle type, but did rather okay with heavy lifting and stuff. Good leg muscles and could move really fast sometimes. U.S. Embassy International League team was the last team I burned with a cool outfield catch and knocked them out of going to Thailand for a special tournament. I was playing for Merrill Lynch then and we were already knocked out of a special slot and so it made that Embassy team folks even more angry that I made that catch. I suspect that was one of my best ever and I was already in my 50s when that happened. Obviously, I'm tooting my own horn on that one. I'm still kind of proud of that one, even though I had good friends on the Embassy team, especially the coach at that time. But after a few drinks in the Tama Hills club in that rec center we got over it --- I mean them being angry at me. I think that was my last organized sports particiaption activity. That was a season ending game.

Now that question about iron in my system is interesting. I have always been a vitamin a day type and it used to be the vitamin-mineral combination in one tablet/pill, whatever that's called, but switched to separating the vitamins from the minerals, but still take one of each every day. But can't say as I was ever briefed by any docs about watching the iron count. I guess that would show in the blood tests, but I'll make a note about that and ask the doc when next we meet.

I eat a lot of raw fish dishes; does that mean lots of iron? Or maybe it is cows and pigs and such that provide iron? Come to think of it, I guess I haven't a clue where iron comes from. Or I've forgotten.

Interesting question you asked there. Thank you.

 

[zincwarrior]

Lower iron can result in anemia and almost impact your ability to have more chemo treatments, hence my Q.

 

[medi]

Lower iron can result in anemia and almost impact your ability to have more chemo treatments, hence my Q.

I sure do appreciate that you brough that to my attention. I have to assume my frequnt blood etsts are giving the doc that information; that my iron levels are of no concern. I'm sure going to add that to my notes for our next meeting.

Of course, it would also be really good if I don't need any future chemo treatments, but I suspect that is wishful thinking. Or I'll kick the bucket before needing new chemo.

And sorry to you younger folks for my crude thought process about kicking the bucket.

 

[medi]

Have had a many-month LeaveOfAbsence from this Community up until a few weeks ago, but since returning not really placing much of any significance in other threads. BUT the past couple weeks have parked me back into the MedConditionGuessingGame (MCGG) and I did not go for professional help this time. This latest round of weirdness included a second coma hit, but it only lasted a few hours, just like the first one that hit back a couple years. But this one had about a week to ten days before the actually passing out trouble and even that may have been brought on by a crucial bank meeting while I was already feeling ill and that ended up with me getting worse during that afternoon when I absolutely had to be present and make decisions. No fun when staff has to sort of play nurse during a meeting meant to be for working on financial matters not at all related to med stuff. But deadlines can cause that. Lucky for me the staff do good work. But the Friday afternoon work must have eventually caused the Saturday morning coma hit. Just like the first one a few years ago, the latest coma hit only lasted three or four hours, but recovery was much tougher this time, In fact, have been into a slow recovery about six days straight. The already scheduled blood tests coming up soon might show some interesting results. This cancer battle stuff sure is one heck of a battle, but I am not so sure the main Doc has a full grasp of all the weirdness my system seems to like to get into. And then I got into a dispute with another Doc and his section about my absolutely horrid spine condition. And that wasn't going so badly, until ... well, I'm going to move that med situation to another facility that is closer to the Hachioji house. I think I can use two medical facilities to essentially have two different problems addressed by two different teams. Not a commonly used method here in Japan, but I know I can get away with it.

And if you are reading this and wondering why I am posting an update here, good question. I'm not at all sure why I am placing an update here. Be super surprised if anyone on our Community really cared. But I did do some medical posts back a bit, so I figured there wasn't any harm in doing this update.