This is all part and parcel of Chemo Brain. Being part of a clinical trial, I have to report to my research people after every cycle, and we get to go through a perfect storm of paper work, most of it having to do with tracking reactions and effects to treatment. Even if you don’t do this, it doesn’t hurt to try and keep track of side effects and how long they last. That can help you to bring up stuff you want help dealing with, and let your med staff know what’s going on. And, if your oncologist happens to ask, you have answers. If you are in a clinical trial, keep the dates of when something begins and how long it lasts, your research person will wanna hug you for that.
Hrrmm. Does that mean you’re doing better this time around? Are the numbers with back slashes your way of quantifying the severity of side effects? No, looks like the dates the side effects occurred. I hope you are doing better this time. An acid suppressant like omeprazole probably will help with the reflux. I hope the other symptoms are manageable. Hugs.
No, the numbers are the dates -- this cycle was on the 7th, so 7/8/ and so on. For each day an effect continues, I’ll add the date. I’m about the same this time, but the day after tiredness is getting much stronger, even though I got plenty of sleep. I’m going to go and nap soon. The reflux hasn’t been overly bad, standard antacids have been useful.
This visit, my Onco was so surprised, because my labs validated my insistence that it was the acetaminophen responsible for the liver business. Kept saying “you were right!” He wanted to put me on full chemo, but research argued to stay on half, because my white count is very low, and this way I probably won’t face another push back.
I cannot say anything about the symptoms, apart from offering my sympathies.The trial seems a bit like a pain in the neck but it is necessary to do it and it helps other people.
You have a nice cursive script there, clear and readable. I do not remember when was the last time I was able to write like that without having to concentrate on each and every letter separately. Maybe a few seconds in first class :).
I suspect that you are a slow or intermediate metabolizer. (Which might be a good thing as far as 5-FU efficacy goes. Not so good for toxicity.). I agree with your research team that there’s no urgency to ramp up your doses. Your side effects will get worse as the doses are increased. The therapeutic doses of many chemotherapies overlap with their toxic doses. We still don’t have the ability to reliably estimate an individual’s metabolism rate in the clinic. I look forward to when we do. It will reduce the inherent risks. As it is now, an oncologist can do everything “right” and still injure a patient. I’m so sorry you’re going through this.
Charly — I wouldn’t call that cursive script. The letters are (by and large) disconnected. To me it looks like block printing, a mixture of upper and lower cases. It’s a bit like the way I write, although I have developed more of a connected-block-printing style using mostly lower case (except where capitalization is called for), but mine is much less legible unless I make a specific effort for clarity.
Sorry, I guess this is a bit off topic. Sorry you’re going through all this, Caine.
You chose a beautiful notebook. Regardless of its look, though, I’m sure your team really appreciates such detailed accounting. It’s the smaller things, like the parasthesia of your upper lip, that often go unreported because so many other symptoms are more severe and sustained.
Voyager:
Exactly, the fleeting stuff really doesn’t stick in your head, and unless you write it down, you might remember it two weeks later, but you won’t remember what day or how long it lasted.
As for my writing, yeah, I’m sticking with printing these days, and as you can see, chemo brain has struck there, too. I keep writing the wrong letters and having to correct constantly. I’m also having trouble with right/write.
Ugh, I’ve dealt with acid reflux. You have my sympathies.
This medical journal sounds like a good idea in any case. I almost never remember when I’ve last had a flu shot or a radioiodine scan.
Joseph:
Thanks. Like most things with me, it goes weird. Mostly hits when I’m trying to sleep. I can’t lay on my right side at all, it comes on with a vengeance if I do. And if I go right when I am asleep, I get woken up because I started to vomit and swallowed it. Ugh, that’s nasty.
Yep. I always think I’ll remember stuff like that, but I don’t. And these days, I can barely remember something for 5 minutes. Rick emailed me today to remind me daylight savings is on Sunday, and I’m pretty sure I’ll be totally clueless by then.
Having pillows on either side of my head seems to help me stay on my back and stops me from turning in my sleep. The downside is that it can occasionally get uncomfortable, to the point of waking up because of it, but that might not be the worst thing here. No idea if this works in general; I came across this somewhere as advice for dealing with aches and tension from “bad posture” in your sleep.
P.S.: Your book reminds me of the lab journals I was made to keep as an undergraduate. While they were a chore it was always nice having a way to go back when it came to writing things up. I never invested in a nice binding though, maybe I should have. But my handwriting has always been miserable, which is why I went bsck to pencil and print writing a long time ago.
Komarov:
I tried that once. I either run over them, or toss them across the room while asleep. I’m either a constant fidget, or fall asleep in one rigid position, and can barely move when I awake.
This was one of the cheapest journals at Barnes & Noble, around 10 bucks, I think. It does help I think, because you sunk a bit of money into it, and tend to not let it go to waste.
This reminds me of the pain journal I was required to keep for my gp not long ago, with I’m sure another round if she gives into my pleas for more efficient pain relief. I found it especially tedious at night, as I would record at bedtime, get all tucked in, and 5 minutes later be turning on the light to record a plethora of extra pains that had just broken out.
Thank you for the word “paresthesia”, I hadn’t known that one!
You have my sympathies for the whole bunch, but an especial thought for the acid reflux right now. I have it as well, despite Tekta, It does not make for a good time.
Whirlwitch:
Welcome! Learned that one decades ago, when I started seeing a neurologist for the spinal problems. It’s a handy catch-all for all those odd and extra pains. This is one thing that is often helped by weed, and can be cause for a medical weed card.
Oh, my sympathies. Of all the side effects, that’s the one I’d most like to lose.