Cyberknife Journey

[marystro]

Hi everyone,

I wanted to start this new topic in the Radiation/Radiosurgery forum since I am quite convinced that CK is my treatment choice barring any unforeseen reason  .

When I was diagnosed with my AN 6 days ago by my ENT, I thought it was the end of the world.  After 5 days of intense research and wonderful support from some of our fellow members, I am beginning to see some hope in my journey.  I went to see Dr. Chang and his team at Stanford yesterday.  My tumor size on the MRI report shows 2.3x2.1x1.7 but Dr. Chang actually said my tumor is 2cm.  I am curious how tumor size is determined.

Mary

[ppearl214]

HI Mary,

Glad to see you here!  Someone here may be better able to explain why the measurement difference in one reading an MRI vs. another.  I never quite understood it but also ran into it with the radiologist that did my MRI vs. my CK team. For me the difference was approx 1mm, but at this point, the 1mm was not going to affect my decision of CK.  You are in terrific hands up at Stanford and with Dr. Chang... you truly are in some of the best hands up there, should that be your decision. 

hang in there... I know the diagnosis is new and you may still feel in a bit of a tailspin right now from all the research and stuff.... we're serving up drinks on the veranda deck to help us chill out....and don't forget to tip your waitstaff generously!

Mary, we're here for you! Please know that!
Phyl

[marystro]

Does anyone know how long it takes for the Day 1 of CK (mask, planning)?  Will half a day be enough.  My reserved flight does not get there until noon on Day 1 for me.  Just want to find out if I need to get there the night before.

Mary

[ppearl214]

Hi Mary,

1/2 day will be enough.  For me, the mask fitting took approx 45 min... then had to have CT done (another 30 min or so), specialized MRI which took approx 1 hr, then in person meeting with staff approx 1 hr (I really drilled them with questions).,..... so, yes, 1/2 should be suffice.   If they book your planning day at 2pm, then you should be fine... keep in mind flight delays and such, so if you need to arrive the night before, that may be safer... but, if you are trying to save on cost of hotel room, then I would try to arrive as much before 12noon as possible.

I hope that helps... again, only my situation.

Phyl

[marystro]

Hi Phyl,

Thanks for responding so fast.  I changed my flight plan to arrive a day earlier taking my husband and my son to cheer for me.  Alex, my 8 year old is so excited about this new advance in medicine.  He said, mommy, I think I want to be like Dr. Chang and I will give him a big hug when I see him ;)  I told him whatever you become will be fine with me as long as you do something to help people.

BTW, I understand you went through Beth Isreal.  How new is the center there?  The mother of a good friend of mine has lung cancer and lives in Mass area.  Is that something CK can also help?  I think she is at stage 3 or 4 though.  The docs at Mass General said they have exhausted all options.

Mary

[ppearl214]

Glad to help Mary... that's why we're all here!  I want pics of your son hugging Dr. Chang... I bet Mark would get a kick out of it too.  I know you are in fab hands with him (Dr. Chang...and your son!)

I'm sorry to hear about your friend's mom.  I know MGH is one of the best institutions around, but so many others here as well. BI has had their CK unit for approx a year now.  I have to say that Dr Mehateven is top notch as a Radio Oncologist, dedicated to the CK center at BI.  Here's a good link for the BI CK Center:  http://bidmc.harvard.edu/display.asp?leaf_id=13361


Also, the CK Support board has a dedicated forum for lung treatments/cancers... this may be of useful reading as well:

http://www.cyberknifesupport.org/forum/default.aspx?f=6

I hope this is helpful... and wishes to you.. and your family .. and to your friend and her mum.

Phyl

[marystro]

Hi Phyl,

I promise pics for everyone!  I think you, Mark and others are all angels for me.  Enjoy your weekend.

Mary

[ppearl214]

naw, I'm just me!   Good weekend to you too!

Hi Phyl,

I promise pics for everyone!  I think you, Mark and others are all angels for me.  Enjoy your weekend.

Mary

[marystro]

Hi everyone,

I think I am planning CK treatment at Stanford the 1st week of August.  I am going on vacatoin next couple of weeks however.  That's what everyone is advising me to do.  So I plan to totally enjoy it.

I would like to thank everyone in this forum for the great advice.  I learned so much in the last 10 days.  I will keep you all posted on my progress.

Really appreciated all your support.

Mary

[marystro]

I am on my 2 week vacation in D.C. and NYC with my family.  A few days before my vacation, I went to see a local neurosurgeon recommended by my ENT doctor.  Without prompting, he also recommended CK for me.  Now I have 2 medical professions saying CK is the way to go in my case.  One from Dr. Chang (Stanford, neurosurgeon and CK center director) and one from Dr. Bush (San Diego, neurosurgeon).  Interesting enough when I was leaving Dr. Bush's office getting onto the freeway, a huge billboard with San Diego Cyberknife Center was on the on ramp!  I guess I must be asking for a "sign" and there it was!!!

I also visited the new CK Center in San Diego (3 weeks new).  They were getting ready to do their 3rd or 4rd treatment on the day of my visit.  It was very impressive.

Thought you may be interested in my update.  My CK treatment is confirmed for 8/1 - 8/4 at Stanford.  Can't wait to complete the treatment!  And, yes, I will honor the tradition of AN CK patients at Stanford - I will have my glass of wine at the Stanford cafeteria after my last day there.  Thanks for your reminder, Mark!

Cheers,
Mary

[ppearl214]

Mary,

I've been following your posts here and on the CKsupport board (as I'm sure you've figured by now) and if you didn't get "signs" from all directions, then I don't know!   You know I send along my best wishes to you and if there is anything any of us can do (and yes, Mark is also one of my many CK guardian angels!), then you let us know.

Now, what music are you going to choose for treatment week? How many Gy are they going to do and over how many days?  Did you actually get to see the treatment room?  Cocktail hour begins at what time (pls keep in mind martini hour starts here on the good coast 3 hrs before you all!).

Mary, you are in awesome hands out there! Cheering you on from here! And happy vacation (dang, NYC?  too close by for many of us!)
Phyl

[marystro]

Yes, Phyl, "signs" are all over!  The good ones are those from all of you, friends and family.  My husband was even trying to use my "brain tumor" as a way to get through the Secret Services to see the President at the White House.  It didn't work. 

No, I did not see the treatment room since I had to rush back to San Jose airport.  They were kind enough to even ask Dr. Chang to the clinic early so that I wouldn't miss my flight.  I have great confidence in the Stanford team and I think everything will be fine.  Even Alex (my 8-year old) said "mommy, you will be ok!".

Dr Chang and Dr Soltys did respond to my emails after my visit 2 weeks ago.  I am going to have 3 day treatment (I think that's what Stanford does) but I did not ask about the dosage.  Dr. Soltys was so nice that he even returned my call the same day after my visit and we talked for almost 45 minutes.  Great guy!

I will definitely keep you all posted on my update.  Just a bit anxious to get the treatment done.  How are you doing now, Phyl?  It's been 3 months for you right?  Hope all's fine with you.

Mary

[ppearl214]

Hey Mary,

Well, I'm sorry the Secret Service didn't fall for it (heck, they usually do, even when you bat eyelashes at them... which, yes, I have done before!) but I have to say, you are in the absolute best of hands with Dr. Chang.  Please keep us updated on all the events and preplanning mtg and all that fun stuff.

I'm just over 3 mos out. I've had my share of side affects but it turns out BI zapped and whacked me with 30Gy... you should be getting between 18-21Gy. Please have the team confirm that for you on what they are planning.  My radio-oncologist is working VERY closely with me as I do have some balance issues (now, keep in mind my Chiari 1 Malformation, which also throws off my balance). Headaches not bad.  No longer any facial numbness (minor but I no longer realize it). Hearing in AN ear is a bit off from pre-treatment but I use it as a joke when someone asks me to do something and I shrug them off by saying they spoke into my bad ear.   All in all, I'm doing well.... just waiting for my 6 mos post treat MRI to see the booger dying it's nasty death!

Happy NYC! I'm jealous!
Phyl

[marystro]

Hi Phyl,

Sorry to hear about some of your symptoms.  Hope the healing continues.  We are all here for you.  I just sent off an email to Dr Chang and Dr Soltys (radiation oncologist) at Stanford inquiring about dosage.  Thanks for the reminder.

Yesterday at breakfast, I was eating some food and experienced sharp shooting pain up my nose!  It happened only when I moved my mouth a certain way.  It happened 4 more times throughout the day when I moved my mouth in a certain way.  Needlessly to say, I stopped chewing hard and tried to avoid chewing on one side that might have triggered the shooting pain.  I recall Dr. Soltys saying shooting pain may be symptoms of nerve damage.  I hope it's just the tumor pressing against the facial nerve.  it was scaring!  I can't wait to zap this thing!    I also asked the good docs about their opinion on this new symptom in an email.  Hope to hear back from them.

However my lip and tongue numbness that I had a couple of weeks ago is not reoccurring which is a relief.   Keeping my fingers crossed that this shooting pain does not happen again also

Mary

[ppearl214]

Mary,

doing fine here... please know that... I just keep in mind that 'individual results may vary"... and mine do vary. But, overall, I am so blessed that I am doing as well as I am.

Talk to your dr's about these symptoms you are having, log them all and I know that you are in great hands... some of the best! What more could you ask for?

Phyl