Post CK Symptoms

[fbarbera]

Hello All,

I am hoping to hear from some CK veterans who can share with me something about the progression of certain post-treatment symptoms I've been experiencing. 

I am about two months out of CK treatment at Stanford for my AN, which is a pretty hefty 2.6 cm.  Since the procedure, I've had intense "flareups" of symptoms -- mostly a feeling of fullness and buzzing in my head, as well as intermittent unsteadiness.  These have tended to last for several days to a week, although I'm currently in the midst of a flareup that has lasted well over two weeks. 

I have been in touch with Dr. Chang at Stanford and he generally has advised that these symptoms are not uncommon following treatment and are associated with inflammation of the tumor as it responds to the radiation and begins to die.  I contacted him about a week ago and he suggested I hold out some more to see if the symptoms subside of their own accord.  He said a short course of steroids could be prescribed if the symptoms become too intense.

I would love to hear from anyone out there who has experienced similar symptoms and can provide some insight as to their progression 6 months, 1 year, 2 years, etc. after treatment.  Any thoughts on the steroids regimen would also be greatly appreciated.

Thanks in advance to all.

Francesco

[bweaver]

I had GK not CK but the symptoms sound similar to what I experienced.  I even started having seizures about 3 months post GK.  All of the symptoms I had they told me were due to the GK causing swelling and they all subsided about 7 or 8 months post GK. I hope this helps a little.
                                                                                                Barbara

[ppearl214]

Hi Francesco and welcome.

Not sure if you saw this thread:

http://anausa.org/forum/index.php?topic=3929.0


My hope in starting that thread was to have some of the CK (and other radio patients) that are "vets" help share their experiences in the AN and radio-  realm regarding immeidate and long-term post treatment. I hope you find it helpful.

Again, welcome.
Phyl

[Mark]

Francesco,

I was also treated by Dr. Chang at Stanford for my 2 cm AN. Your symptoms sound similar to mine but much more intense and of a longer duration. I have mine outlined in my story on the CK site at http://www.cyberknifesupport.org/mark.html if you want to read that for comparison. It is probably either swelling or hearing/ balance nerve irritation as Dr. Chang has said and will subside. The steroids are certainly an option which might give some quick relief from the inflammation. I was on them for about a week and felt edgy and had a hard time sleeping so I got off them. Others on the board have been on them for longer periods and could commnet better, but I think if you can deal with the symptoms for a while without them , it's better. If not, let Dr. Chang know. But the odds are very high that this will pass in time. Most of my symptoms came in the first 60 days and then disappeared and then I had a brief flare up at about a year past treatment

Mark

[Lorenzo]

HI Francesco,

You have the same doc and the size An as I had at the time of treatment!

I too had some of those increased symptoms, although mine were rather milder. Two months sees to be the time at which things started to show up for me too. The worst part for me for the first 6-8 months was the fatigue and lack of concentration ability. Tinnitus had increased and hearing decreased. Later on, towards the 12-18 months I had some sharp short stabbing pains behind my ear and down my jaw, as the tumour swelled. And then again when the tumour started shrinking back. Fatigue and concentration steadily improved over time, and returned to normal about a year or so ago.

One problem I had and still do, is a shifted sleep pattern. I go to bed when I'm tired, but I keep waking up at 4, 4.30, 5 am. If I go to bed late, and I have tried this to my detriment, I still wake up early, and get sleep deprived! Either I need less sleep, or something has changed. Somewhat frustrating at times, when one wants a good night sleep!

I was never on steroids, and eventually those issues vanished. For the past year and a bit I had no significant symptoms, the tumour has shrunk back to smaller than diagnosis size (24mm then, 22mm now), hearing is still down 5%, and tinnitus has returned to the normal rustling leaves sound.

Hope this helps.

Ciao, Lorenzo

[jb]

Francesco,
I had CK 2.5 months ago and have the same symptoms you describe, seeming to flare up for several days at a time.  Mine seemed to start about a month after treatment, beginning with significant hearing loss in the AN ear.  I had fluctuating hearing before CK, so hearing loss was not really an unexpected side effect for me.  I began steroid (prednisone) therapy mainly for my hearing, as it seemed to help prior to CK.  My hearing has recovered some, though my high-frequency is still pretty bad and I can't tolerate noise well.  Not sure if this will be a temporary thing or not.
Anyway, I've been on steroids more often than not over the last 6-7 weeks and it's not very pleasant (insomnia, mood swings, acne, etc.).  But I do think it has helped with my hearing and other AN symptoms.  I'm concerned about prolonged use of this stuff, but the hearing issues make it a tough decision.  I think I would try to get by with ibuprofen, meclizine, etc. if it weren't for that.

[Lorenzo]

Hi JB,

Noise intolerance at that level from my experience, is a temporary thing. I used to have to use ear plugs in my car! Now, I hardly ever use them. Was a concert last night, without protection (except when the violin got a bit too shrill!). Took me a while to get back a normal hearing / noise threshold, but I did eventually. Make sure to protect the good ear too!

Ciao, Lorenzo

[jb]

Thanks, Lorenzo.  It's reassuring to hear that a lot of these side effects are most likely temporary.  It's hard to remember that when you're in the midst of it all.  I've done the earplug in the car and in the shower!  The water just seems incredibly loud right now and really sets off my tinnitus.  Hope that one doesn't last much longer.

[Lorenzo]

Hi JB, 

I hope it won't! I know what it was like, and I ended up not listening to music, using wax ear plugs in the shower and in public places to cut ALL noise, and mostly, I avoided all situations when noise was a factor. Or at least, as many situations like that as I could! Be careful with the use of the plugs at the same time, I found they used to make my tinnitus worse when I used them for too long. Better be in a quiet place.

Things got better gradually, but it took a while for me. Hopefully for you it'll be much faster!

Ciao, Lorenzo

[marystro]

My symptoms started a few months after CK.  Progressed to what they were before CK but just on and off.  Right now my worst enemy is the tinnitus.  Shooting nerve pain subsided.  I am hoping it will be gone for good (keeping my fingers crossed).  In my case, they are all mild and tolerable.  I met with Dr Chang last week when I happened to be in the Bay Area.  It was good seeing him after over 1 year since CK.  He reassured me these symptoms should be transitory.  I am hoping they will go away over time and that they are likely the result of swelling.  As long as there is no regrowth, I am happy.  So, hang in there although it's tough when you are in the midst of them.

[fbarbera]

I want to thank everyone that responded to my post -- it really is helpful to hear from others going through this experience. Lorenzo, Mary, JB, Phyl, Barbara and Mark:  thanks!!

Since this last flare-up showed no signs of abating, I decided to go ahead with steroids. The folks at Stanford prescribed a three week tapering regimen of Dexamethasone (4mg/day, to 2mg/day, to 1 mg/day).  I started on Monday and by that evening was feeling significant relief.  It's now Thursday and I'm still feeling much better -- greatly reduced buzzing and pressure and zinging.  The side effects have been mild.  No trouble sleeping yet (I may have some of that post-treatment fatigue, can't really tell except I'm pretty tuckered out after work) and no significant change in appetite.  I am hoping for the best.

I was hoping to get by without the meds but in the end, the symptoms were exhausting and demoralizing and impacting my work so I decided I owed to it myself to see if the meds could provide some relief.  Also, the nurse at Stanford mentioned that sometimes, the steroids actually resolve the symptoms on a longer-term basis.  Another reason I proceeded.

I am thinking about supplementing my Western-style treatment with some alternative therapies, such as homeopathy or acupuncture.  I visited with a couple of these types prior to CK treatment but because my tumor was right on the cusp of where surgery might have become inevitable, I did not have the luxury of testing these therapies in a wait and watch mode.  But they did suggest they could help post-radiation.  I wonder if others have had any luck with these alternatives.  I'll let you know if I proceed.

Thanks again. 

Francesco