Treatment Journal

[ash]

Sunday morning my wife and I boarded a plane in Philadelphia bound for San Francisco for my week of cyberknife treatments at Stanford University Hospital. Our plane left on time and since the plane was only half full,we had a row to ourselves. We landed to a bueatiful day in san fran and was able to upgrade our rental car to a convertable for only $15 a day more. While in our room we found a leak in the bathroom and were upgraded to a suite while learning this week's weather will be fantastic. At this point everything is going in our favor. Today, Monday at 10:00, we met with the onocologist Dr. Soltys and he was very informative. At 12:00, came the meeting that I was most looking forward to with Dr. Chang. He put to rest any second doubts that I was having. He was very informative, down to earth and reassuring. Just prior we were able to meet with the coordinator named Maria that we had been in constant contact. She has been invailable and a constant source of comfort, it was great to meet her in person. Finally I needed to get a contrast MRI. The needle I received for the contrast I never felt and the machine was quieter than any I experience prior, I even dozed a few times. Everyone we encountered has been very nice and helpful. In all we spent 5 hours in the hospital today and accomplished 2 appointments, a procedure and lunch.  Anticipating an equally pleasent day tomorrow.

[MDemisay]

Ashman,

It sounds like you are very happy in your treatment all positive things pointing to the right decision that you made to treat! Please continue to believe that God controls the little things to give you encouragement!

I as well as others will send good positive prayers to San Fransisco have a nice treatment week. And keep us up to date!

Mike

[Suu]

Ashman

I loooooooooooooooooove a good story! It's wonderful to know that things run smoothly in some places and your calmness is shining though your post.

Thank you,

Suu xxoo

[ash]

Tuesday day 2, I needed to be at the hospital at 7am. It began with a port placed in my arm and then contrast was injected. Next I laid on the CT table and a pillow was warmed then placed under my heaad. It is needed to conform to my head to help keep it in place for the treatment. Prior to it cooling, it was taken away to cool and harden. Next a vinyl like webbing which was warm and wet was placed on my face. It was pulled to cover my face and then strapped tightly to the table. The scan only took about 5 minutes and the mask was cured. The mask was removed and I was off the table. My wife took a video of the mask fitting for our boys to enjoy. The port was removed from my arm and then we had a tour of the ciberknife room that I will be so lucky to experience tomorrow. Thanks for your encouraging responses. Till tomorrow.

[Bobette]

Hello Ashman,

I will be at Stanford today meeting with Drs. Soltys and Chang.  I was excited to read your posts.  I will be praying for you today as you go through your treatment and I will be anxious to read about your experience today at Stanford. 

Thank you for taking the time to keep us up to date. 

Bobette

[ash]

My day did not go to plan. My appointment was for 12 noon and wanted to leave by 11:00 but did not leave until 11:10 for a motel worker needed to replace a mirror but did not come till 10:50. Now we left 10 minutes late and I forgot to bring my chapstick for I have dry lips and needed to stop and get some so I would not keep licking my lips during treatment. Now we were even later, and as our luck was not bad enough there was extra traffic. We reached the parking lot and was out of the car at 11:55 with the building next door felt we were good. Taking a last look at my schedule for the room number I noticed something I missed earlier, it States to be there 30 minutes prior to your appointment. Thinking Im reaching on time that I am actually 30 minutes late, great. It turned out ok and just had to wait 5 minutes. Prior to my first ck treatment I met the technician, his name Jackie and a Dr. Cream that gave me a steriod for inflamation and an anti-nausea pill prior to the start. Jackie, my wife and I entered the ck room. Jackie got me set up while my wife took pictures. They had a Cd playing and it was classical, not my preference. They have others or you can bring your own. They suggest something soothing but I recommend something easy but something to sing along to, it passes the time faster.  I. was strapped down and feared that my nose would itch as it sometimes does. Jackie said if I had to swallow, sneeze, or cough it was ok.    However I would be unable to scratch because my chest and upper arms were restrained with a blanket type strap. Time for the show to begin. and the ck began moving, and it started on the left side of my face. The problem was my AN was on my right side, I was very nervous that they entered into the machine backwards. Actually it began there and slowly worked it's way around my head. I did have one problem, the back of my head felt like it was on fire. When the treatment was over, Jackie. said this does happen with some patients for pressure points on the the back of the head but it only lasted about a. half hour. No problems as for now. One thing I do recommend is to bring your own cd that is easy listening and can sing along, this is so you can have an idea when your session will be over. ill post again tomorrow after second ck treatment.

[ash]

Bobette,
MY experience thus far has been fantastic! The stafff and Dr. Chang have been kind and reassuring. They have left me with a positive and encouraged outlook. The treatments was calm orderly and quiet. I truly feel I made the best choice. I hope everything works out as well for you.

[ash]

After reaserching and speeking to others it appeared that steriods were only for precaution. I decided not to take it but I thought I would be taking the steriod with me after todays treatment but the doctor would not permit it. We went to Monterrey 1 1/2 hours away and problems started. Hearing got worse, tinnitis worse and pressure. We called and was told to take motrin  but did not help. Tried to post last night but very hard with kindle fire. I suggest taking the steriod to others.

[ash]

Friday, my final treatment. I woke to find my hearing was only about 40 % of what I had started. When I went to the hospital we had an informal meeting with Dr. Soltys, Dr. Kareem and an administrator about my situation. They were all very concerned and sympathetic. I took the steriod and then my 3rd and final ck treatment. From there we went for a final visit with Dr. Chang. Since I was born deaf in my other ear and having problems now they decided to put me on steriods for the next nine days. I leave tomorrow back to New Jersey and my follow up is call Dr. Chung how I am when the steriods are finished, get an audiogram at six months along with a MRI. Dr. Chang was great at explaining the little things about the way things happen. He also said that the tumors take 2 to 3 years to die and actually they want the to die slowly. The kindle is about to die so Inneed tonne guick. Stanford Hospital was great and feel it was my best choice. Good luck to all and I will keep up with my journel, thanks.

[Bobette]

Hello Ashman,

Looking forward to hearing how you are doing.  Hope all is well and that you were able to enjoy our area here.  You sure came here during a beautiful week!

I meet with Soltys and Chang last Wednesday and scheduled my Cyberknife on July 16, 17, 18.  I really liked both of them and felt like I received very good, encouraging information. 

Bobette

[ash]

Hi Bobette,

It has been five days since my final treatment on Friday and I was doing ok until my son's soccer game Sunday. I'm an assistant coach and it was a game we needed to win or tie to enter playoffs. We tied 3-3 and my son scored all three goals for us. That was great but I did a lot of yelling and that was not good, my head hurt until I went to bed. I have had my ups and downs ever since with worsened tinnitus, hearing sensitivity, hearing loss and head pressure. I wonder if all that yelling had anything to do with it, I know there would be symptoms. I will still be on steroids for a few more days and they have not been that bad. These are a lower dose, I have been on steroids before and had to stop them. I wanted to update more frequently  but getting home after a week away, having 3 kids, coaching and go to work has kept me busy. It was beautiful there, we went to San Francisco three times, Monterey, Alcatraz, and drove the coast twice. We put on our convertible rental 600 miles! I hope everything goes well for you and do not hesitate contact me if you have any questions. Please consider my recommendations, I think they will help. It is so much easier updating on a laptop than on a Kindle.

[MDemisay]

 Dear Ashman,

I must say that you are one brave dude! Thank you for keeping all of us updated you are the most detailed in your descriptions that I have read in a long time!

You have inspired me to start my own treatment journal about the Gamma Knife surgery that I must undergo in June.
Hopefully,it will be brief! Since it is only one shot!

Back to your coaching job Dad, I'm pleased that you still were able to watch your son score goals, he will remember that one day! As my daughter remembered my coaching her in Fourth Grade.
This weekend brings with it her graduation from college!

Time goes much too fast not to enjoy the little things!

Keep up the positive attitude too, it helps all of us!

Mike

[ppearl214]

ashman (and all)

Great journal. Thanks for sharing this! I've been following along, to see what comes to light.  For all that has been noted, pretty close to other "individual results may vary" for other CK/radio patients I have had the chance to meet/know over the past 7 years during my time here on the forums/support groups.  I have had the chance to meet Dr. Soltys and he is certainly on top of his game... as is the CK team at Stanford.

Although I did not go to Stanford since we have CK here in Boston, I can share........... now that I am 6 yrs post CK, that all you are noting seems to not be far off from what other post-radio patients note, including myself.  I now sit here, 6 yrs later, (knocking on wood!) that I am a walking success story of CK and sending wishes to you all that are or have had radio treatments done that you may follow the same path as me.  Again, we know that "individual results may vary" but wishes that all goes well.

Hang in there and congrats, ashman, on being a "toastie postie"

Phyl

[ash]

Congradulations, I hope the rest of us are as lucky as you.

Bill

[Suu]

G'day Ashman

How are things going now this far down the track?

Quick and short post this time as I've been on this thing too long and fear I get sucked into cyberspace everytime I come to this site as I want to answer all posts! 

Hugs,
Suu xxoo