Author Topic: CK Experience - Treatment Complete  (Read 4431 times)

brunsje

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CK Experience - Treatment Complete
« on: June 08, 2007, 02:46:47 pm »
 :)  This past Monday, Tuesday, and Wednesday I had CK treatments at Georgetown University Hospital in Washington DC.

My dose was 7Gy each day, total of 21Gy delivered to my 1cm AN. 

I had two previous appointments.  First appt was to meet with the Radiation Oncologist, Dr. Gagnon and the Neurosurgeon, Dr. Jean who gave me their opinions.  Second appt was to get my mask fitted and a CT scan.  They used my 2 previous MRI's from my referring Neurosurgeon at Bethesda Medical Center.

As an engineer I found the CK machine very interesting.  My recommendations for those undergoing this treatment option:

1.  Bring music.  It is relaxing to listen as the machine moves around your body.
2.  Dress warmly.  The room was about 65 degrees. 
3.  Take a shower beforehand; Relaxes You and minimizes itching on your face that you can't scratch.

Ask as many questions as you'd like, the Technicians love to answer them.  I was treated very well by the Staff!!

Relax.  I am two days past treatment and have no symptoms.  But my tumor was caught early and I have no symptoms and have full hearing capability.

Good Luck.  Best Wishes.

JohnnyB

okiesandy

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Re: CK Experience - Treatment Complete
« Reply #1 on: June 09, 2007, 09:47:16 pm »
Welcome to the other side!!!!!!

You may or may not have any symptoms. If you do they will pass. I am almost 18 months out and am doing great. I had very minor problems post radiation. Tinnitus is better, no hearing to begin with and no change. I had some facial numbness, that is gone. Never had headaches. Balance is getting a lot better most days. Best of all the brain fog has lifted. Fatigue is less. Can't blame it all on CK I had it before treatment. I got worse for about 9 months and then got better. Nothing to stop me just a general slowing down. I push when I am feeling good and rest when I need to. Do what is best for you when you need too.

I am very happy for you.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

debgit

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Re: CK Experience - Treatment Complete
« Reply #2 on: June 13, 2007, 06:41:58 pm »
I am new to all this - diagnosed at the end of May with a 1.2 cm acoustic you know what! Anyway, I am researching, and doing my homework, but boy am I confused! First stop was Jackson Memorial in Miami with Dr. Angeli - think he wanted to cut it out! Today I saw Dr. Spunberg and his mighty cyberknife in West Palm Beach -  "I wouldn't have surgery" - at the end of the month I see Dr. Antonelli at Shands, and Dr. Field (endoscopic) in Orlando.........How do you finally make THE decision?????? and honestly, CK sounds so great compared to surgery, why doesn't "everyone" do it????? There's got to be something wrong there, yes? No? Would love all of your feedback - the good, the bad, and the ugly!!!! Thanks so much, Debbie

okiesandy

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Re: CK Experience - Treatment Complete
« Reply #3 on: June 13, 2007, 11:44:11 pm »
So sorry to have to welcome you to our exclusive club.

I took 9 months to decide what to do about my AN. I leaned toward surgery because at that time there were few people on here that had had any radiation treatment and mostly FSR at Johns Hopkin. Everything I read about radiation was old news. Don't stress your self and go beyond 5 years back in your research information. It is out of date.

Meet and talk with as many people as you can in person. You are in Florida so it should be a lot easier to meet face to face with people than for me here in Oklahoma.

Try as hard as you can to find a neurosurgeon who does all forms of treatment. Boy, did I luck out there. Mine does CK, GK and surgery. Got it all covered. In this journey you will find that even your vet may offer to "get er outta there" I felt like I had gone into the shark pool. Every doctor from Oklahoma to California said they could do it.

I thought if I could go to HEI I would have the best out come for surgery. Had it scheduled and insurance did not cooperate. Had to post pone and in the mean time I found out Dr. Clinton Medbery of the nations top 100 doctors was riight here in Oklahoma. I contacted him. (a radiation and medical oncologist). After a visit with him I left with no imput what so ever. He told me I could have any kind  of treatment because the tumor was still small (at that time about 1.3 cm) However, it seemed to be growing at a high rated of speed so something needed to be done. I had already lost balance hearing. I was scheduled for an appointment with a neruosurgeon and quite by accident I got the one I have. She was wonderful from that start. Very many tests and questions. She said any treatment except wait and watch longer for me was OK. By this time I was so frustrated that neither of these doctors told me  how great radiation was and it was the next wheel. Finially I ask her if she had my exact tumor what would she do. She said radiation in a heart beat and go on with her life. I said why do the surgeons push surgery and she said "Would you go to a Ford Dealer and ask him if a Toyota was a good car for you"? The know surgery, they do not know radiation and probably know less than you do. I said what if it fails and she said three is a 1 % difference in the eventual outcome and the gap is closing. No, facial paralyis, dry eye and no recovery time. If you have the patience to wait until it is dead do this and if not do surgery and hope for the perfect outcome. In her opinion surgery except for larger tumors will become a rare thing in the future. I will agree I am seeing more and more opting for radiation here and other places. Next was what if I had to have surgery after would it be harder. She said some think it is and some don't. If it did grow back surgery is harder after surgery. Then she told me that I was going into it with the wrong attitude. They are close enough to success that the figures are for medical reasons Considered the same.

Next I canceled surgery with Dr. Brackmann at HEI. For this I was given reams of out dated information. Told my ne;urotologist who said he could do it without a neurosurgeon. He told me all about malignant transformation (Ah, Ha, I already knew the number was the same for surgery and radiation) He said he had seen many cases. Believe me, in Oklahoma many cases are not many an I doubt he hand seen any transformations. ( 6 ot 8 world wide if I remember correctly). Then he said if you do this I never want to discuss your AN again. Now when I go to see him he tells the Residents we chose Cyberknife for this patient and she is do in well.

I am gLad I made the decision to have CK because today I found out I have a more life threatening problem and will have to have surgery for that. Two major surgeries in two years would more than do me in I think.

Don't rush, don't let anyone push you. Research. Wait for the 6 month MRI if you want and you are comfortable with waiting. Don't wait so long that you have more problems. Went to bed one night a healthy woman and woke up the next day without balance and 3 days later lost 100% of my hearing. Mine was fast growning went from 1.0 cm to 1.5 or so in 9 months. These little things are all different. When you do make the decision and it is the right one you will feel such a realease of worry you will not believe it. You will be calm.

I wish you so much luck and happy endings. I will answer any question. No matter what, good, bad and ugly.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

FlyersFan68

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Re: CK Experience - Treatment Complete
« Reply #4 on: June 14, 2007, 10:24:26 am »
Johnny, Best Of Luck! Debbie your post grabbed my attention. We have all been there. Some things depend on your personality type and personal goals. Why some elect surgery while others elect radiation is tough to answer IMO. Most surgeons will suggest removing the tumor especially if you are young. I was only 35 at the time and had no other health issues. Some people do have other issues and/or would like to completely avoid surgery. I wish I could have avoided the tumor. Anyway, it's not like those who choose surgery feel like exposing themselves to such a big procedure but sometimes it's for our own set of reasons I guess. For me, I felt I was too young for radiation. Radiation is all the same whether its for cancer or benign tumors. That doesn't neccesarily mean it's a bad thing but I would just rather reserve my need for radiation for the bigger fish I may have to fry one day (regrowth, cancer, other tumors). Also the long term effects of radiation (if any) do not begin to appear until 20 years later. Most control rates are up to ten years but as far CK which was introduced in (I believe) 2000 will be that much longer until we see those results. Keep in mind that there are numerous machines with numerous statistics proveided by numerous institutions. The ten year results out of Pittsburgh seem excellent for GK. I've seen institutions state as low as 92% (fsr) up to 98% (fsr, gk) within 5-10 years. Most published results for radiation are within 4-7 years. Keep in mind that if someone experiences disabling vertigo following radiation then later elects surgery the treating institution may not record this as a failure because the tumor didn't grow even though the patient may feel otherwise. House has performed the most surgeries following radiation and they state that the facial nerve is harder to save although using them will provide better outcomes due to their amount of experience. As already stated, the control rates for CK will take longer since it's been used for 7 years and it's not known if the three day dose will have the same control rates as the single shot doses. It appears that hearing preservation is certainly being better achieved early but again the stats wil take time and sometimes losses can appear over time. Surgery does not mean you will get every problem under the sun. Some people don't tolerate radiation very well either. I think life changes by all options including observation. It's just something that has hapened and something that we will always remember. There are no guarantees with any treatment and radiation does seem to be the easier thing to do however in my situation for example other than losing my hearing from surgery I don't have any new problems such as, headaches, dry eyes, facial numbness or taste problems. I could twist things around and they all could have led down a simular path. I could have had radiation, lost my hearing and still have the tumor to observe. I could have done nothing and lost my hearing one day. I could have looked deeper into mid-fossa (keep in mind not many surgeons perform this) and I could have saved some hearing but gained some new facial problems because the facial is more involved with this procedure. There are hopes, risks, tradeoffs and personal needs all involved here. We choose what we think is best for us at a given time in our life. I hope that you choose the treatment that suits your needs then happily move on. I am at the point where I don't feel the need to stay on these boards often because I think that it's just a negative reminder of the entire pre and post surgery experience. There's alot of information on here with a lot of great people. It's great for new members. There are also many other AN patients that never log onhere with so many stories untold. Finally, IMO don't try to impress your doctors by how much you may already know because if you do they might assume you know everything and their advice may fall short. God Luck Hope This Helps.

debgit

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Re: CK Experience - Treatment Complete
« Reply #5 on: June 14, 2007, 11:52:33 am »
Thank you all for your responses - I don't need to tell you how nice it is to share and compare, and how much your information and knowledge is appreciated. Thankfully I have not yet hit the panic button, and feel pretty calm as I do my "homework". I do notice however, that in several cases, although the tumor is considered slow growing, there has been fairly rapid growth over a short time - I guess that makes the "wait and see" approach a bit risky? And of course you are all right when you talk about the pros and cons - the good outcomes, the not so good - there is probably a story for each. I will continue my road triip - on to Shands and Dr. Field -  at that time I will have covered the surgeons, the endoscopic surgeons, the CyberKnife doctors and the ents - have I left anyone out???? There is a support group meeting in Ft. Lauderdale on the 24th that I will attend and hopefully I will be able to get a closer feel for what this is all about. Thanks all and lots of good luck. I'll keep you guys posted, Debbie

mema

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Re: CK Experience - Treatment Complete
« Reply #6 on: June 14, 2007, 12:46:10 pm »
Debbie,                                                                                                                                                                                 


You seem to be really investigating all your options.  You may want to consider talking with Dr. Wayne Jenkins at MD Anderson in Orlando.   I had FSR 25 Treatments there.                                                                                                                                 


                                    mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

FlyersFan68

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Re: CK Experience - Treatment Complete
« Reply #7 on: June 14, 2007, 12:56:21 pm »
Yes observation can be a bit risky too. I'm glad you seem to be in control. Having this all happen all of a sudden not being familiar with everything can be scary. Here is a study I found regarding observation. Studies don't reflect the entire picture and is a snapshot in time with a limited number of patients but can give us some idea i guess.
  
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=10680925&dopt=Abstract

macintosh

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Re: CK Experience - Treatment Complete
« Reply #8 on: June 14, 2007, 01:35:02 pm »

Just want to point out--Antonelli at Shands is the surgeon, and he tends to recommend surgery. Friedman, the head of Neurosurgery, is more inclined to recommend radiosurgery.You might want to set up appts. with both of them if you're going to be at Shands.