Dr. Chang at Stanford / radiation

[operarose]

I saw Dr. Chang and Dr. Soltys at Stanford at the beginning of December.

I had emailed Dr. Chang and he responded very fast- don't hesitate to email him. He put me in touch with his scheduling assistant at Stanford after we exchanged a couple of emails. He is a very friendly and accessible person. I was very comfortable with him.

The assistant set up both appointments (you meet with Dr.Chang and a radiation oncologist). I had to go up to Stanford (I live in Southern California) for the consultation. He said that he needed to see me in person and I didn't argue. The consultations were by no means free but my insurance covered them and I had a low co-pay. I met with both doctors, one after the other, and they took their time to discuss my MRI with me and to give me their advice and and answer all my questions.

Best of luck to you!

[Blw]

That is the one negative about Stanford, they want to see you in person, but you do get to talk with the main people. However, it is an added expense. If you read enough, get examined by local people, then contact the experts, you can pretty much make a decision without visiting if it is a routine case. More complicated cases probably require a visit, just to make sure they have good MRI data. The good thing about Dr. Chang is he does the surgery as well, so definitely find places that do both.

[tdlight]

Thanks everyone for the replies. 

It looks like I will be able to schedule my consultation and CyberKnife treatment in one trip (I live in the Portland, OR area, so glad for that.)  I have had a number of local consultations and read enough about Dr Chang and Stanford that I am comfortable with that.  I will have the consult on a Friday, scans and prep on Monday, planning on Tuesday, treatment Wednesday - Friday, and a wrap up appointment with Dr Chang Friday afternoon.  We, my wife and I, will make a vacation of sorts out of it. 

Anyone have recommendations on where to stay near Palo Alto?  We were thinking a VRBO so we would have a kitchen, but a hotel with a fitness center would be nice too.

Thanks again!

[GaryWNT]

I used AIRBNB to book a place in Mountain View. The hotels around Palo Alto are either really expensive or pretty patchy. Be careful! I loved being in Mountain View and it was only about a 10-15 minute drive.
Good luck!
Gary

[Tumbleweed]

Dr. Chang performed CK on me almost 8 years ago. It changed my life. He is the most dedicated doctor I have ever met, a true living saint. And under his expert care, I had near-miraculous results: a 90% improvement (over time) in my balance, a similar reduction in tinnitus, and -- most important -- a 70% reduction in tumor volume. He continues to review my annual follow-up MRIs for a second (untreated) brain tumor for which I am "watching and waiting" -- without charging me! IMO, you can't do better than having Dr. Chang treat you at Stanford. I consider him to be one of the most important people in my life. It is worth the travel time and expense to get the best doctor to do brain surgery -- whether CK, GK or microsurgery -- and Dr. Chang is simply the best.

Best wishes to all,
Tumbleweed

[tdlight]

Weed - Exactly what I need to hear... I am three weeks from my first treatment with Dr Chang (just booked my AirBnB, Gary) and I'm getting just a little anxious.  I know I'm in good hands but can't help but feel this has the potential to have a major impact on my life.  deep breaths...

[CattAN]

Tdlight,

Stanford Guesthouse is a great place to stay.  It is reasonable, the stay includes free breakfast, access to a fridge, and a shuttle to take you around Palo Alto and to your doctors' appointments (if they are within 3 miles).  I highly recommend it, only patients,  Stanford Visitors, and visitors to the nearby lab are allowed to stay there.  It is also located in a quiet area, if you appreciate quiet and nature.

Good luck with your treatment.  It went much better than expected for me.

CattAN

[tdlight]

Thank you, CattAN.  I looked in to the guesthouse earlier this week and unfortunately it was already booked.  It sounds very nice and reasonably priced compared to most options in the area.  On AirBnB I found a little studio in the Los Altos hills with a garden, nice view, and a cat (for my wife) that I hope will offer some tranquility during our stay.  The weekend in between my consultation and the start of treatment we will spend in Monterey.  Really looking forward to getting away.  I even hope to watch my college baseball team play at Cal Berkeley that week (Go Beavers!).

- Terry

[Tumbleweed]

Weed - Exactly what I need to hear... I am three weeks from my first treatment with Dr Chang (just booked my AirBnB, Gary) and I'm getting just a little anxious.  I know I'm in good hands but can't help but feel this has the potential to have a major impact on my life.  deep breaths...

A natural emotion to have with this kind of thing. Even though I knew I was in good hands, I was an emotional wreck the night before treatment. Now, looking back, I wish I'd had the treatments sooner. Dr. Chang apparently takes an incredibly meticulous and thoughtful approach to treating each patient, and the improvement in quality of life for me has been astronomical as a result.

You may go through a rough patch for the first month or two (the most common reaction to CK is deep fatigue), and possibly again a few months after treatment (when the tumor begins to die, you may or may not get dizzy, have distorted hearing, etc. for a couple weeks or so), but the rough ride is well worth the pot of gold at the end of the CK rainbow.

Best wishes,
TW

[tdlight]

Thanks TW, I appreciate the thoughts.  How common is the fatigue the first month or two after treatment?  I have read about that but wonder what factors contribute to it; tumor size, location?

Well, I'm all scheduled and ready to go.  Consult and MRI 3/18, simulation and CT 3/21, treatments 3/23,24,25.  Let the fun begin.  BTW, The patient coordinator at Stanford has been very pofessional, compassionale and understanding.  I know I'm in good hands and expecting a very positive experience.

[Tumbleweed]

How common is the fatigue the first month or two after treatment?  I have read about that but wonder what factors contribute to it; tumor size, location?

Judging by past posts on this forum, it's more likely you'll experience fatigue than not, although some people have absolutely no side effects from CK treatment. In those who experience fatigue, my impression is it most commonly lasts 2 to 4 weeks. In my case, I was profoundly (unusually) fatigued for two months. Dr. Chang told me it was a positive sign, indicating my tumor was reacting strongly to the treatment. And indeed, my tumor's volume ended up shrinking around 70%; if I remember correctly, it shrank that much in only 18 months or so, and Dr. Chang told me that that amount of shrinkage usually takes 5 years for patients (if it occurs at all). So, if you should have a strong reaction to the treatment, remember this: the rougher the ride, the bigger the likely pay-off. It's counterintuitive, but you should take comfort that any discomfort is a good thing -- in the long run. In the short run, it might indicate your tumor is swelling in size in reaction to the radiation. In the overwhelming majority of cases, the swelling reverses over time and may lead to shrinkage.

The most important thing to remember during treatment is to stay perfectly still, so that the radiation is directed exactly at where it was planned to treat. While the radiation will be switched off automatically if you should move during treatment, it's best to optimize its delivery by presenting the CK robot with a fixed target throughout the process. I tried to meditate on controlling my breathing to keep it shallow and not swallow saliva whenever the robot was stationary (that's when it delivers the radiation), so my head wouldn't move. While the robotic arm was repositioning itself, I would take a deeper breath and swallow, knowing it wasn't delivering any radiation during that time. This may be over the top and too stressful for you to do, and it's not something I was told by the technicians was important to do. Many people just lie still and meditate or sleep or listen to music while undergoing treatment. I only mention it because I feel it was part of my unusual success with tumor shrinkage, although I have no way of knowing for certain that it improved my results.

Somewhere on this forum, you might still be able to find a post I did roughly 7 years ago that gave (hopefully) helpful tips for people to use during treatment (including what to expect, the pros and cons of listening to music while being treated, and asking for extra anxiety medication well before the start of treatment). I'll try to find that post and follow up by providing a link to it.

Best wishes,
TW

[Tumbleweed]

tdlight, sorry I can't find my post from 7 years ago. It seems that most of my old posts have been purged from the forum, probably to save storage space for newer posts. I'll try to remember some key points I made, but my memory is hazy now, almost 8 years later:
1. If you listen to music to relax during treatment, ask the technician to adjust the volume so that it is extremely low. Otherwise, you won't be able to hear the technician talk to you through the headphones you'll be wearing during treatment. I made this mistake for my first treatment, and it made me anxious that I might have been missing important instructions as I couldn't understand a word the technician was saying.
2. You will be offered the option to take an anti-anxiety medication before treatment. I think they gave it to me around 10 minutes before treatment began, which proved to be too little too late -- it didn't kick in until treatment was almost over. Also, I felt the standard dose of medicine wasn't enough to keep me calm. So I asked for a double dose around (I think) 20 or maybe 30 minutes before treatment began. That did the trick -- I was cool as a cucumber during treatment. It's possible Stanford has upped the medication dose sometime in the past 8 years, so you might want to follow their suggestions for the first treatment session. But if you feel you didn't get enough medication (some people don't take any at all), you can request more and to take it sooner. At least back in 2008, the staff were amenable to changing the dose and schedule to fit your needs.

That's all I can remember now. Hope that helps you!

Best wishes,
TW

[Tumbleweed]

tdlight: Digging deeper, I found my post from 2008. It didn't show up in my search results, so I looked at all my posts via my Profile. Here it is:

Each of my treatments lasted 32 minutes. I asked for and was given 1 mg of Ativan, a fast-acting anti-anxiety medication, before each treatment, to calm my nerves and keep me from fidgeting while receiving the radiation. (Although CK compensates for the patient's movements during treatment -- to keep the radiation focused on the tumor -- it is still important to stay as still as possible.) During my first treatment, I barely, if at all, felt the Ativan and was a bit anxious throughout the treatment. When I came in for the second treatment, the steroids I was given the day before (as a prophylactic treatment to preclude tumor swelling from the first treatment) were making me really hyper and therefore even more anxious. I was a bit panicky during portions of that second treatment. So for the third and final treatment, I took some valerian root extract (an herbal sedative) about one hour before treatment. I also arrived 30 minutes before treatment and asked for an increased dose of Ativan to calm my nerves, hoping it would kick in earlier and before treatment began. After determining that I would not be driving afterwards (my wife would be instead), Dr. Borcher (the meds doctor) gave me 2 mg of Ativan (a double dose). I sailed through the third treatment, calm as a cucumber. Those of you who will undergo CK in the future: don't be afraid to ask for a higher dose of medication if you are anxious. The doctor will accommodate your request; there is no need to suffer through panicky feelings while being treated. Also, although Ativan is supposed to work within minutes, I found taking it 30 minutes prior to treatment worked much better for me. Indeed, for my second treatment, for which I received the Ativan only 10 or 15 minutes prior to commencement of treatment, I didn't feel the drug's effect until after the treatment was over. I suspect my adrenaline largely countered its effect, but my point is arrive early for treatment, don't be afraid to request the dose you need, and take the meds early to give them a head start before treatment begins.

Eileen, my CK technician, gave me a few updates as to our progress during treatment, so I could anticipate how soon we would be finished. Unfortunately, during my first treatment, I had them play music so loudly that I couldn't understand anything she was saying. When she said, "We're about 1/4 of the way through, and you're doing great," all I heard was "blah blah blah blah, blah blah blah blah."  For all I knew, she was telling me the building was burning down and we had to evacuate, or that there was a major malfunction with the CK machine and I had only five more minutes to live.  My advice: have them play music softly so you can hear what they're saying over the intercom. And choose soothing music; uptempo party music did nothing to calm my nerves! 

Best wishes,
TW

[tdlight]

Wow - Thanks TW. Great info; all things I had been kicking around in the back of my mind.  Are you able to bring your own music?  I've read some fun suggestions for the appropriate music, e.g Pink Floyd's Welcome to the Machine. 

I actually found my theme song for this whole thing today.  This morning as I was listening to Pandora I was emailing several doctors I had been consulting with to thank them one more time and let them know I would be seeking treatment at Stanford.  As I hit send on the final email, Bob Dylan's Don't think Twice, It's Alright came on.  I thought, THAT'S PERFECT!  I would love to have that on a continuous loop during treatment.

For your listening pleasure:   
https://www.youtube.com/watch?v=S6UCrNQOn4A

[Tumbleweed]

Sorry, tdlight, I just now saw your reply. Yes, you can bring your own music. But I suppose you already figured that out, as this is your week for getting CK. Good luck with your treatments!

Best wishes,
TW