New AN in Seattle - GK/CK???

[caryl]

After losing most of my left side hearing over several months, an MRI found a 1 cm AN.  I am 61 with a progressive rare bone marrow condition (myelofibrosis) which causes my blood counts to be below normal.  I have been maintaining a good quality of life, but I'm really afraid that surgery might "push me over the edge" healthwise.  My hematologist agrees that it would be a good idea to avoid surgery, if possible. 

I am at the GK vs CK point in my research and would like to hear how people made this decision.  I am meeting next week with Dr. Sandra Vermeulen who uses both machines here in Seattle.  The CK has only been in Seattle for a couple years, so of course there is more experience with GK, but the CK is the very latest technology.  Has anybody had CK in Seattle?

Thanks for any advice!

Caryl

[OTO]

Caryl

There are a bunch of Washington State folks on the forum.   I think they occassionally get together for lunch...  Look in the AN Community category, and look for a discussion topic,  Western Washington/Oregon Get Together (might be a couple of months old).  You can find some of the user names, and send them PMs (personal msgs).  They migh be willing to respond to the PMs, and give you info.

[Raydean]

Hi Caryl

Sorry, no CK experience to share, but I have met and talked with Dr. Vermeulen on a few times and wanted to let you know that you are in very good hands.  Dr Vermeulen is very experienced, a board member of IRSA  and really knows her stuff.  She communicates very well with patients.  She'll answer any question that you may have and will assist you in any way.  She really is amazing!

I am sure that other members for the PNW will be adding to this tread.  I just wanted to pop in and say Hi and welcome, and glad you found all of us .

Best to you
Raydean

[leapyrtwins]

Hi, Caryl -

I had surgery, so I can't help you with your question, but I know that Steve (sgerrard) is from Portland and he had CK.

He should be "around" the forum later this evening; he'll probably respond to your post.

Good luck with your AN,

Jan

[Kate B]

Hi Caryl,
Welcome to the forum.

Age is a consideration when making a treatment choice.  Oftentimes, the growth pattern slows down over 60.  I know someone who has selected to wait and watch...that was over five years ago.

Many others will help you with the Seattle area.  I noticed Raydean already responded. There is OMG and Steve too.

I have a list of questions I put together that you may find useful. Just print them off and cross out the ones that you won't need. With your rare medical condition, I would add that one to the mix.

http://anworld.com/questions/

Here was a thread related to making decisions that may help as well.
http://anausa.org/forum/index.php?topic=5786.0

Have you gotten a copy of your report from the hospital?  I would send your report and MRI's to House Ear Institute.  They are experts in this disease of the ear.  I think they have seen it all and the fact that you have another rare condition would make me want to send my MRI there for their consult. They will provide you their best opinion (and not just surgery)

HEI
Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)


Kindest Regards,
Kate

[sgerrard]

Hi Caryl,

My latest theory is that you do CK for the left side, GK for the right side. 

They are really two peas in a pod, six of one, half a dozen of the other. Okay, maybe 5 of one (GK), half a dozen of the other (CK). Having had CK last September for a 8mm left side AN, I can say that I like it. I think Dana had GK up in Seattle; and Sue had GK here in Portland. I did my CK down in California, but they now have it in Vancouver as well.

The simple answer to how I chose CK over GK is that I visited the cyberknife support forum. Reading some of the discussions there, with answers from radiation oncologists about the various radiation systems, helped me understand the difference. The link is http://www.cyberknifesupport.org/forum/.

In a nutshell, CK is a somewhat nicer experience for the patient, and has slightly better hearing preservation rates. Either one should work fine, though.

Steve

[Jim Scott]

Hi, Caryl:

Welcome to the forum.  I trust we can be of some help to you. 

Radiation certainly sounds like the best way to treat your relatively small AN - but the doctor's opinion should carry the most weight.  We do have some CK patients on this forum who can better address your questions with the voice of experience.  Surgery is somewhat debilitating and could have a negative impact on your overall health, although Cyber Knife/Gamma Knife treatment is not entirely risk-free but certainly it's non-invasive nature makes it attractive.  I'm sure you'll be hearing from Seattle-area folks who can also offer some answers for you.   

Jim

[Kate B]

Caryl,

Know that there are different delivery models for radiation treatment.  One is Cyberknife (CK), one is Gamma Knife  (UPMC is known for GK) and John Hopkins performs FSR. Proton beam is another type.The difference is in the way the machine delivers the amount of radiation and the frequency.  It is interesting, but when I first joined this site in 2001, FSR patients from John Hopkis were the biggest membership; now it seems to be Cyberknife. Here are some links:

Fractionated Treatments:
Johns Hopkins, Baltimore (Dr Rigamonti) http://www.hopkinsmedicine.org/radiosurgery/
Stanford Cyberknife Center (Dr Steven Chang) http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html
CyberKnife support forum where you can send your questions to CyberKnife doctors.

Gamma Knife (GK) centers

University of Pittsburg Medical Center (Dr. Kondziolka and Dr. Lunsford) (UPMC is a well known radiosurgery center for ANs. They have published several peer-reviewed studies on the subject.) http://www.acousticneuroma.neurosurgery.pitt.edu/
Providence Rhode Island - Dr Georg Noren http://www.lifespan.org/svclines/profile/noren.htm
San Diego Gamma Knife Center, La Jolla (Dr Ott). Site: http://www.sdgkc.com


I wish you the best.

Kate

[leapyrtwins]

Steve -

thanks for replying to this post; you didn't let me down 

I need to start reading the posts about CK and GK, so that I can be more helpful to the newbies.

Jan

[caryl]

Thanks to everyone for their help and good wishes.

Kate --- thanks for the great links.

Steve --- Living between Seattle and Stanford, I can understand you going to the experienced Stanford group.  Did you have any contact with the Seattle CK center?  I haven't found anyone yet who has.

I'll learn more next week when I go to the Seattle CK Center at Swedish.

Caryl

[sgerrard]

Caryl,

I never did contact the Seattle CK center. Mindy, aka mindyandy, had CK in Seattle back in January. She last posted in Februrary (saying it went fine), but she hasn't been around lately. Hope she is doing well, Mindy are you out there? I know she wasn't sure at first, and did some research into it, and soon felt comfortable enough to schedule the treatment there.

The main thing is whether you find the doctor there to be someone you would feel confident in, should anything odd develop afterwards. The procedure itself is very straightforward and highly automated, so it will be virtually the same at any facility.

Steve

[caryl]

Steve and others,

I've been wondering about the possible problems of going far from home to have treatment done.  Did you know who you would turn to for help if you had had any problems following CK?  Did you talk to a local Dr. about it before going to Stanford?

I was also wondering what the protocol was for your AN at Stanford.  What was your total dose and how many fractions?  Were they on successive days?  It would be nice to know so I can compare this to the Seattle protocol.  Do you know if the protocol varies with the size of the tumor or is it pretty standard?   When I met with the radiology oncologist at Virginia Mason where they have a "non-dedicated" LINAC, I was told they would do 5x5 for 25 gy (Monday-Friday).  They need to implant gold markers for that one.

Caryl     9 x 6 mm AN

[sgerrard]

Hi Caryl,

My treatment was 3 days, 6 Gy per day. Standford does some at 5 x 5 or 5 x 6 as well; I think when the AN is larger, but I don't know the criteria for sure. There was no gold implants for me - do you get to keep them? I think with LINAC they tend toward more days and smaller doses; the use of implants suggests the accuracy is maybe not as high.

The week of treatment was no problem for me. I flew down on a Sunday; did consultations Monday; scans on Tuesday; treatment Wed. through Friday, and flew back on Sunday. I stayed with a friend in SF, and drove to and from Stanford each day. I did ask them about this; they suggested it might be better to have someone to drive me, in case I felt woozy or the little steroid pill they gave me had an effect. My plan was to call my friend or take a cab if the need ever arose, but there was no problem.

As for any problems after getting home, I know that I could contact Dr. Chang if I needed to; he responds quickly to people anywhere if they encounter a problem; there have been cases of that reported on this forum. My ENT here in town has been in on the whole arrangement, and is well qualified to deal with most issues himself. If I just had some swelling, for instance, I would go to him. I've been tempted once or twice, but never actually called about that.

If you are thinking Stanford versus Seattle, I think you would get a good treatment at either place, and I suspect the doctors at both are very capable of handling anything that might happen.

Steve

[caryl]

Steve,

Thanks for the information.  My report only gives two dimensions for the AN (9 x 6 mm), but that seems similar to yours.  So Tuesday I will see what they recommend at the Seattle CK.

Yes, you do keep the 3 gold markers --- forever.  I suppose if their value got high enough, you could pay someone to dig them out!

Caryl

[mindyandy]

Hi Caryl!!!!! I'm Mindy the one Steve was talking about. I had CK done at the Seattle Cyberknife Center back in January. Mrs. Vermuellen is WONDERFUL. It took me a few months to make my decision on whether I should wait or go for it since my AC was like yours "small". I decided to do it while it was small. (They are usually slow growing so dont rush).

Treatment: I had fabulous service. People there treated me great. My treatment was 3 days long. I went Mon, Wed, & Fri. 30 minutes long and you get to listen to any music you want. It was relaxing (about as relaxing as it can be) and pain free. I did keep my eyes closed. I didnt want to see the thing moving around my head. LOL
After each treatment I went home and went about my business. I was fine. I to this day have not taken anything (steroids). I have been feeing fine but today I am feeling a little bit of a full feeling which is probably from swelling (typical side effect). I did have my 3 month MRI last week and went over the films with Sandy and she says it looks fine. It did swell some. I am going to call her tomorrow regarding the full feeling and find out if she wants me to take Decadron. I have some here now but I dont want to take it unless needed.

If you have any questions please feel free to ask. Everybody on this website is GREAT and always always will lift your spirits and answer questions.

I KNOW I HAVENT BEEN AROUND FOR AWHILE......SHAME ON ME.... I have a newborn and have been very busy.

NICE TO SEE EVERYBODY!!!!!!!!!!!!!!!!

TAKE CARE CARYL and PM me if you'd like.