Another gamma vs cyber

[Tumbleweed]

Hi, Mark:

I see that your AN's size was within 1 mm of the size of my tumor and that you were treated by the same Stanford doctors (Chang and Gibbs) scheduled to treat me. Did your tumor swell? If so, how soon after treatment did the onset of swelling-related symptoms occur and how many months did they last? Did you have any lasting effects (such as partial or complete hearing loss) from reaction to the treatment?

I know there are many unknown factors that cause a tumor to swell after CK, but your circumstances were so close to mine that your experience might be at least partially relevant to what I can expect post-CK.

Many thanks,
Tumbleweed

[Mark]

Tumbleweed,

Based on my MRI's there was no apparent swelling of the AN noted. It was smaller at 6 months and then again at 1 year and continued to slightly shrink over the last 6 years although it is essentially stable. Current size is about 1.5. I find people tend to forget that MRI's are a snap shot in time and a lot of things can happen in between 6 month windows, so mine may have swelled sometime in the first 6 months but was finished with that before the first MRI was taken. I did have some transient reactions , mostly in the first 3 months post treatment. From about week 2 through 6 I had what I termed episodes of "the fuzzies" where once or twice a day I would get a moment of vertigo, usually about 30 seconds to a minute long. Not enough to cause an issue , but certainly noticeable. At right about 6 weeks I was out for a run and all of a sudden my I started to notice there were 2 of everything  and my head was spinning. Walked my way back home and called Stanford. Dr. Chang felt it was nerve irritation from the radiation and called in a prescription for decadron. I laid down for about 2-3 hours and the episode ended before I got the steroids. I took them for a couple of days, but started to feel wired and stopped. I didn't have any reactions or problems after that point so all in all I had pretty minor reactions. Were they caused by swelling or , as Dr. Chang felt, radiation induced nerve irritation? I don't know and at some level it doesn't really matter in the big picture. To date, I've had no deficits as a result of treatment in either nearing or facial nerve function. Your in the hands of an excellent team of Doctors and I think Stanford is up to something like 700 plus ANs treated by CK, so I'm sure all will go well for you.

Mark

[Nancy Drew]

Mark,

It was interesting to hear your afterstory from your CK.  I pretty much had some of the same questions as tumbleweed.  I am concerned about swelling and possibly having to take steriods.  I have bipolar disorder and was once prescribed prednisone by an ENT for a sinus issue.  I slipped into a deep depression after taking it only for a couple of days.  I felt like killing myself, and it took about a week for me to get my mood back on track.  Psychiatrist told me to never take any kind of steriod.  I would hate to have swelling and then takie a steriod and at the same time be put on suicide watch.  I have a fairly stable mood even as I go through this AN stuff.  I am sure I would consult with my psychiatrist about options.  I haven't seen him in a year so it hasn't been an issue that has come up since I wasn't having any problems a year ago.  Good thing is that my AN doc and psychiatrist are friends so that will help.  Glad to hear that you are doing well.  I am really getting convinced that I should check out Stanford and the CK in Boulder.  Hopefully you enjoyed living in CO.  I love it here.  Thanks for sharing.

Nancy

[sgerrard]

Nancy,

For what it is worth, I never took steroids after treatment.  I did take the one blue pill on the three days of treatment (Decadron), but that was it.

I had my six month MRI here in Portland, and mailed it to Chang's office. Ami, one of the medical support staff, called with his comments. We discussed that I am still a candidate for swelling issues for another 12 months, and I asked about steroids. She said that it is rare for post treatment swelling to cause any permanent damage; the prescription of steroids is mainly to address patient comfort during the swelling phase, and is optional.

So you don't have to take steroids. Even if you do have swelling, you may find that Ibuprofen is sufficient to manage it. Since you have a negative reaction to steroids, it would make sense to take Ibuprofen (or other anti-inflammation medicine) and grin and bear it, should the occasion ever arise. I did that during a two week long phase at about 3 months.

Steve

[Nancy Drew]

Steve,

Good to know, and I am definitely relieved to know about other options than steriods.  The thought of what those steriods did to me makes me want to throw up.  I have never felt so depressed and suicidal in my life.  If I hadn't gotten to my psychiatrist right away, I seriously think I could have jumped off a tall building.  Luckily I had the insight to see that something wasn't right and I rushed to the doctor that day.  You are a big help Steve.  Thanks for your widom.  My son's name is Steve.  Easy to remember you!  Nancy

[Mark]

Nancy

Relative to the steroid issue, I would echo Steve's comments. 1)  they are rarely required and 2) most docs only prescribe them if the patient is really having difficult symptoms. Like Steve, I took the anti nausea and steroid pills after the first treatment because I thought I had to. on the second day when I told them I felt fine, it was optional and I declined them. As I shared with Tumbleweed, I took the steroids for a few days after my big vertigo event, but in truth, it had resolved itself before I even got to the pharmacy and I really never needed to take them. I would not be concerned with that issue at all in making your treatment choice.

I enjoyed Colorado a lot and still consider it home even though I grew up on the east coast. I don't know that my path will get me back there at some point, but I would be happy if it did.

Mark

[Nancy Drew]

Mark and Steve,

Thanks for your comments about steriods.  If it comes right down to it, and that is the only option they give me, then I will get on my bandwagon and have some back-up to go on. I haven't heard of Decadron Steve so I'll have to check that out.  Mark it has changed a lot in my 16 years here in CO, but it is still beautiful, and I love living here.  It is my home now.  I grew up in Mississippi so you can probably understand why I love it here.  Don't get me wrong MS, but I don't think y'all want me back now.  I have lost a lot of my Southern ways.  I still go for visits though, and I enjoy it very much. People here still pick up on my Southern accent so I am ingrained in one way or another.  I feel relieved about the steriods issue.  Thanks guys.

Nancy Drew

[Tumbleweed]

Thanks a ton, Mark and Steve, for your post-CK stories. They are incredibly helpful to read.

Dr Chang's office said I could have a Decadron prescription to have on hand in case of an "emergency" case of swelling. I'm going on an extremely important (and draining) business trip just 2 weeks after my last CK treatment and can't afford to be laid up with vertigo attacks, as about 15 people from different businesses will be completely depending on me to direct everything throughout the week. Even more nerve-wracking is that my wife and I have a summer full of backpacking planned, and we like to go off-trail into very remote areas. So I would want to have some Decadron with me in case I run into trouble in the middle of nowhere.

I'm a tad nervous that you had a reaction at two weeks post-CK, Mark. I sure hope that, if it happens to me, it waits til week #4 when I'm back home!

Thanks again for sharing your experiences.

Best wishes,
Tumbleweed

[Tumbleweed]

From about week 2 through 6 I had what I termed episodes of "the fuzzies" where once or twice a day I would get a moment of vertigo, usually about 30 seconds to a minute long. Not enough to cause an issue , but certainly noticeable...
Mark

Hi, Mark:

Thinking about this more, was this actually true vertigo you suffered (room actually looks like it's spinning in circles) or just disequilibrium (a sense of imbalance but not spinning) and/or lightheadedness. And when you say it didn't happen enough to cause an issue, do you mean you could pretty well tough it out and keep doing what you were doing when the "attack" came on? I'm pretty nervous that I might get actual vertigo attacks and be knocked on my butt while I'm on my business trip (during the third week after my CK treatment). I had severe vertigo attacks eight years ago; they were so disabling I couldn't even lift or move my head in bed or drink water without throwing up (it landed me in the ER). Can you please clarify your comments? It would be a big help to me.

Many thanks,
Tumbleweed

[Mark]

Tumbleweed,

The "fuzzies" were more just a brief sense of disequilibrium. I might be standing in a hallway talking to someone and a little wave would come over me, but nothing that would interrupt the conversation. They are also not anything I've heard others mention , so they were probably just  unique to me. The only real bout of vertigo I had was that day on the run and it lasted a couple of hours. I actually found the "fuzzies" somewhat reassuring that something had happened in treatment. The CK process was so seamless, probably the most difficult thing I dealt with for the first couple of years is wondering if it worked 

Mark

[Tumbleweed]

Thanks so much for your clarification, Mark. That makes me a bit more confident I can do the treatment before my end-of-July business trip (which is good because otherwise I'd have to wait another 7 weeks for treatment due to an impossible schedule in early August).

Many thanks,
Michael