Hi, Connie:
So sorry you're going through this. But I do believe you will feel better soon. You're coming up on the 3-month mark since having your treatments, and that's when quite a few CK "veterans" have started to have flare-ups. The first six months are typically the hardest. I know it seems like it will go on forever, and it's natural and common to fear you will be the odd case that never improves symptom-wise, but the odds are overwhelming that it will get better.
I had some intermittent stabbing pains in my temple on my AN side; only perhaps 4 or 5 times total, and very early on after getting CK. A few other CK-ers have reported the same thing. It will likely stop very soon and won't return.
The best advice I can give is for you to be as healthy as you can be in your lifestyle right now. It does make a difference. There is no silver bullet, but the more rested, exercised and well-nourished you are, the better your endocrine system will deal with the inflammatory compounds your dying tumor is producing (which is likely what's causing your memory and cognitive issues and possibly what's irritating your trigeminal nerve). This is what steroids do for us when our body's own natural defenses can't do it enough.
Speaking theoretically, the other thing that could be causing your facial symptoms is your tumor might have swelled in size in response to the radiation. Don't be alarmed (I'll explain why this isn't all-bad in a moment). Your tumor was 1.6 cm at the time of treatment. If it has swelled a few centimeters more along the transverse axis, it could possibly be elevating your trigeminal nerve at the root entry zone (where it enters the brainstem). Please keep in mind that this is pure conjecture on my part; I mention it because my tumor was doing just that to my trigeminal nerve when it was around 1.8 centimeters along the transverse axis. Now here's the reason why you shouldn't be alarmed: First, the trigeminal nerve is very resilient. If it is acting up because of pressure on it from a swelling tumor, then your facial symptoms are very likely to decrease and ultimately go away when the tumor shrinks, as it is extremely likely to do over time. Second, Dr. Chang told me -- and this was borne out by my own personal experience -- that an intense flare-up soon after CK treatments is an indication that the tumor is reacting very positively (strongly) to the radiation treatments. In other words, you probably feel so lousy because your tumor is dying very rapidly. It's a rocky road, but there's a rainbow at the end.
Hang in there.
Best wishes,
TW
