Post-fractionated problem

[mikemp]

Hi, I'm new here, and I hate that my first post may sound whiney ("whiny"?), but I know it's a safe place to be.

Had a ~2.5cm left AN treated with 25 FNR in January. After treatment, it took a couple of weeks to feel "really good," but really did feel pretty good, until this past Monday. During treatment, I had some dizziness, some headaches, some nausea, lots of tiredness - but not near as bad as my side effects from chemo five years ago (DLBCL, now cured, we think).

Anyway, Sunday afternoon I felt more tired than usual (recent "usual"). Monday I woke up to a fair amount of dizziness, and some nausea. No headaches. By the end of the day I was ready to just go lay down. Now it's Thursday, and it's been the same each day.

I assume this is transient, but gosh, it's driving me nuts! Feels like I can't think straight and like I just want to put my head down on my desk until it goes away. And it's the "can't think straight" part that has me most worried, and why I posted here, not anywhere else.

I hope someone will say, "Hey, yeah, been there, and it did go away after awhile..."

Mystified as to why I felt so good for those couple of weeks and now have this "set back."

Anyone experience anything similar?

TYIA,

Mike

[Jim Scott]

Hi, Mike - and welcome.

I'm sorry to learn that you've having post-radiation issues but they are relatively common, especially in the 2-months post radiation time frame.  As the radiation slowly destroys the tumors DNA, it often swells and these kinds of problems arise.  They should be temporary .  I would suggest that you consider calling your doctor to inquire about a prescription for a short-term steroid regimen that often alleviates the symptoms you describe.  I also underwent 26 FSR treatments but did not experience any post-radiation issues.  However, I had a fairly low level of radiation (27 Gy total) because my AN had previously been 'de-bulked' with surgery (and it's blood supply severed).  The FSR was 'insurance' against re-growth.  So far, so good.  

I trust that you'll feel better soon and of course, continue to post your experiences, questions and comments here.  Thanks!

Jim

[mikemp]

Thanks, Jim, for the welcome and the information, you've made my day a little brighter! I'll be seeing the doc tomorrow and will ask about the steroids.

Mike

[sgerrard]

Hey, yeah, been there, and it did go away after awhile...

Well, you did ask for it.

Steve

[sunfish]

I had CK a year ago, and I'm only just now getting back to what I would call normal.  Lots and lots of unsteadiness, disequilibrium, wonky headedness, fatigue over the past year.  But I just kept plugging along, and the symptoms have gradually declined over the past couple months.  Last MRI in February looks like the AN is dead.  My post-treatment symptoms came on gradually, from about 3-8 months after CK.  I've had lots of minor problems with memory, and having enough energy/motivation to get my work done.  I would suggest being as active as possible, and living your life as much as you normally would.  If your dizziness is too great, that's understandable.  But inactivity is the enemy, as moving around will help get rid of your symptoms.

Sorry I don't have more cheerful news regarding the length of time it can take to get over some of this, but at least I now know you CAN get over it!

[mikemp]

Steve: well said!  Exactly what I needed to hear!
Sunfish: it's encouraging to hear you've left it behind, thanks. Sometimes I can move around easily, sometimes not so... too dizzy, it seems.
More worrisome is the effect it seems to have on cognitive ability... just sometimes seems harder to think through things.

Mike

[b91221b]

Hi, Mike...it's been awhile since I've posted, but I couldn't help but empathize with your symptoms.  I had CK over a year ago, and can tell you that the symptoms DO decrease in time.  The tinnitus is the same as it always was, but the imbalance issues are improving...the wonky-headedness is no where near as severe. (Leaning to the left has just become part of my gait!   

I think sometimes what I find most frustrating is the hearing loss...but as time goes by, I think you learn to compensate for that, (or just get used to it!).  Sometimes sleep is elusive...but all in all, the little "critter" has been zapped...and will never see the light of day!  As the swelling diminishes (and a Tampa neurosurgeon spoke to some of us recently, and said that oftentimes the tumor is ON TOP of facial nerves, trigiminal nerve, etc.)
things will improve.  Hang in there...it's a longer road than some of us would have thought, but we're all on it....and headed in the right direction!

Have a great day!!

Barbara

[kenneth_k]

Dizziness has a great impact on cognitive skills, memory, mood etc.

When you're dizzy, the brain works real hard to keep you from falling. This "overload" can manifest in several symptoms.

If you can get something done about your dizziness, then maybe the cognitive issues will resolve.

Best regards, Kenneth

[PaulW]

Yes the can't think straight part is annoying.
I had that before treatment too, and it can be part of the disease.
Treatment however, mostly makes things temporarily worse.
I am 9 months post treatment, I still have slight concentration problems, but they are nothing to what I had pre treatment.
Pre treatment I had problems with typing (transposing letters, jumbling words and in management meetings speaking to 30 people I was at times embarrassing as my mind would go blank and my thoughts scrambled)

Things got worse for me about two weeks after treatment, then got better.
Had a bad bout of concentration problems at 5 months post treatment which lasted three weeks
Since then concentration has been hugely improved, and I now have better concentration most days than I did 6 months before I was diagnosed

Hang in there it will get better.

[mikemp]

PaulW - see your new status as of a couple of days ago... if you see this post: congratulations!  That's excellent.

An update for me, now 9 months post treatment: still have wonkiness, overall it's a little less but still an issue. Once in awhile it's almost completely gone. Just had an MRI done and the tumor looks dead and slowly vanishing, which of course is wonderful, and I expect the wonkiness will gradually fade away. Hearing is not so hot and am going to see about a hearing aid, probably next week. Usually run out of speed pretty early in the evening, which is annoying.

[kjm]

Just read Mike's post and thought OMG this is me.    I am only two months out from my CK treatment.  I was feeling good with hardly any dizziness for a couple of weeks and then it came back again.   Glad to hear that there will be some improvement in the sometime future