Scheduled for CyberKnife July 16-18

[Bobette]

Happy Friday Everyone!

I am scheduled for my Cyberknife treatments at Stanford in July with Drs. Chang and Soltys.  Because I needed to schedule it so far out due to work commitments I didn't think about it much, but now that I am coming up on a month out I am getting a little worried.

I have been told I can drive myself to the appointments and should be able to work everyday.  My treatments are scheduled at 4 p.m. each day so when I made the appointment I told my work that I will work everyday until 2 p.m.  and then go on to Stanford and be back the next morning to work until 2 p.m.  Hopefully that is the way it will go, but I guess I will take it a day at a time.

I was diagnosed in March with severe hearing loss in my right ear, loud tinnitus and fullness, and every once in a while I feel wonky, but I haven't fallen.  When I spoke with Dr. Chang last month, he suggested treating now -- with the goal of keeping me where I am now.  That makes sense to me and I really felt comfortable with Dr. Chang.

I have been attending two different support groups here in the Bay Area and it seems like they both have a little different view on what to do with these tumors.  One says go for treatment and try to keep what you currently have and the other says do not treat - wait until you absolutely have to. I know you have all experienced this -- you can't seem to get two people to agree on anything and that is why this AN situation is so troubling -- there is no clear-cut best solution to handle these unless your tumor is too large for anything other than surgery.

I would love to hear from those of you who have had CyberKnife about your treatments and recovery. 

Thank you so much.

Bobette

[JWW]

To treat or not to treat, that is a GREAT question Bobette. I am in W & W myself after being diagnosed this past March 19, 2012 with a 1 cm x 6mm L. AN. I have been reading this board and asking alot of questions to different doctors.

One thing that was brought to my attention yesterday was, "they do not know if there is a difference between FSR or CK or SRS in hearing preservation beyond 5-10 years after radiation."

Anyone her past the 10 yr. mark of having radiation with good hearing?

JW

[chloes mema]

Bobette

I'm one month out from my CK procedure.  It was not a bad experience; however, my imagination of what it was going to be got the  best of me so I ended up taking Valium before each treatment. 

For me I wore warm clothes (because I'm always cold), took a CD that I knew was relaxing and soothing to me, and just laid on the table with my eyes closed (because the mask is so tight I couldn't open my eyes).  My schedule was first session on a Thursday, second session on the following Monday, third (final) session Tuesday.  The day after the first session my stomach was upset off and on, my vision was blurry (called the doctor, he said I was dehydrated (?)), I had a horrible headache but that was due to how my head was positioned on the mold on the table, I also lost my taste buds.  The day after the second session I woke up exhausted, fell asleep during the third session, went home took a nap and went to a dinner party that night.  Wednesday I was tired but could function.

I took a little notebook wrote down how I felt after each session, wrote down the questions I had for my doctor, and basically used it for a diary of my CK experience. 

The headache is gone, my vision is back to normal, my taste buds are slowly recovering, I'm still wonky which I was before and still have balance and dizzy issues but had those before also. 

Now a month out my symptoms / side effects are no better or no worse than they were prior to my CK procedure.  For all practical purposes I, and no one else, can tell I had CK.

Just remember everyone responds differently. 

I wish you the best of luck.  Don't be embarrassed to ask questions and keep asking till you get a satisfactory answer.

Again good luck, keep us informed on how it goes for you.

Karen

[Tisha]

Hi, I had my CK with the same doctors at Stanford 3 years ago.  I would think that your decision is a bit more frustrating because you already have the severe hearing loss, so it sounds as if that might be something you are not concerned as much about.  Is the wonkiness of more concern to you?   If I were you, I would also have made the decision to go ahead.  Your AN isn't small, and you are already experiencing wonkiness.  Your hearing is bad already.  I wouldn't want to take the chance of more dizziness or anything happening to my facial nerve.   

Anyway, my CK was a breeze.  I could easily have worked each day.  As a matter of fact, we would go site seeing and vacationing after my CK treatments.  Good luck!

Tisha

[Bobette]

Karen and Tisha,

Thank you so much for your replies.  It really does help to hear from those who have gone before . . .

My wonkiness is really not a problem.  I know that I need to hold onto the hand rail when walking down stairs and I especially know that if I drink alcohol I need to be especially careful (one drink and I'm looped!).  My hearing seems to change somewhat.  Some days it is better than others (but still not close to 100%).  Some days I can't seem to hear much out of it.  I notice that the more stressed I am the less I can hear. 

I feel very fortunate that there are other options for me besides open surgery.  The first doctor I spoke to told me my AN was only 12 mm.  When I went to Stanford Dr. Soltys put it on the computer screen and measured it for me right before my eyes.  I am so glad that I didn't just wait a year before going to see another doctor. 

The more I talk to other ANers who have had GamaKnife or CyberKnife, the more confident I am in my decision. 

Thank you so much.

Bobette

[ppearl214]

I have been attending two different support groups here in the Bay Area and it seems like they both have a little different view on what to do with these tumors.  One says go for treatment and try to keep what you currently have and the other says do not treat - wait until you absolutely have to. I know you have all experienced this -- you can't seem to get two people to agree on anything and that is why this AN situation is so troubling -- there is no clear-cut best solution to handle these unless your tumor is too large for anything other than surgery.

Bobette

I'm hoping that one of the 2 support groups in the Bay area you are attending is co-facilitated by Mark, who was treated at Stanford over 11 yrs ago by Dr. Chang.  Mark was my "mentor", not only in my decision making process but in my role here on the forums....... I have had the honor to thank Mark face to face and thank goodness I have had that chance. I sit here, over 6 yrs post CK and for me... was the best choice I could have made.  Now, we don't sugar coat things around here and have to note that "individual results may vary...." but, for the overall success rates with CK..... me, being one of those numbers, as well as Mark...... and so many others...... never 2nd guess your decision, go with your gut, stay true to your gut and know we are all cheering you on.  (this applies to anyone chosing any form of AN treatment).

Have faith in your decision and your gut........

Phyl

[MaryEBS]

Hi Bobbette -

I just finished my CK treatment 8 days ago.  I took a week's vacation to have treatment but I could have easily gone back to the office.  After the first treatment, several hours later I had extreme dizziness, vomiting that lasted a total of 15 minutes.  After Treatment 2 and 3 just a bit of queeziness nothing significant. 

The worst part for me has been obsessing about what may come next and when.  Going back to work this week was the best thing I could have done.  Getting back to living helped me stop obsessing... I admit to being more tired than normal this week but again not significant.   I'm glad I chose CK and I am looking forward to hearing that it is successful some time in the future.

Wishing you a very easy course of treatment and recovery.  Please post to let us know how things go for you.

[ChipsFL]

Hi Bobbette,
    After about 4 yrs w & w I had CK about 2 months ago. Happy to report it was really a non-event. Bring your favorite CD and just lie still. They can cut a hole open in the plastic face mask to open up your eyes, nose, and mouth, and if not too late, I would ask your dr. about 5 treatment sessions instead of 3. Same total dose just spread out more giving extra time for good cells to recover I was told. I drove myself each time with no effects until the following day some increase in the clogged ear feeling for some hours, and tired, and mild ear ache now and then. Although not CK protocal, as I was told by the CK dr. I do have a script from my reg. dr. for a couple vicodin a day which helped.

[Bobette]

Hi All,

I sincerely appreciate all of your replies.  Three weeks from today I have my treatment!  I am really looking forward to getting the treatment behind me and I am feeling very encouraged by all of your responses. 

I am so thankful for this site and all the people who participate.  I look forward to being able to give others the same encouragement I have been given. 

@Chips - I definitely will ask to have a hole at least cut for my nose and mouth!  As long as I feel air to breathe I think I will be fine.  I have already started plotting what music I will bring.  I also will ask Dr. Chang about 5 sessions. 

@Mary - I agree with you about getting back to life.  The first few weeks after I found out about my AN that was all I could think about.  I am not going to let this slow me down.   

@Phyl - I definitely want to meet Mark!  I have attended the Stanford group and I met Christina, but I don't remember meeting Mark.  The Stanford support group is awesome, very encouraging. 

I have no doubt I have chosen the right path.  Thank you all so much!

Bobette

[goinbatty]

Hi Bobette,
I know you are anxious to get the show on the road and get CK over with.  I'm 4 yrs out from CK, had 5 consecutive treatments.  It was not bad at all.  The only irritating thing was the back of my head would get sore even though they had a layer of bubble wrap beneath it.  Yes, bubble wrap.  I listened to the same CD every day and I could tell when the treatment was almost over by the point in the CD.  My husband and I toured DC every day following treatment.  I didn't take sedatives pretreatment but on day 5, developed reflux lying there and they had to pause it for a few minutes.  For a few weeks following treatment, I got tired and rested maybe 15 minutes or so but continued to work.  Mild side effects all resolved at about the 9 month mark, which were nothing major.  It didn't slow me down at all.  Audiogram recently showed the AN side stable.  Still waiting on my MRI report but have been told it's finally smaller after having enlarged some post treatment. 
Almost forgot, my only advice and that's from my personal experience is to keep your eyes closed.  Lucky me chose to open mine right when the "eye" was positioned above me.  It kind of freaked me out for a sec so you can bet my eyes stayed closed the remainder of the time. 
Take care!!
Sandra