ANA Discussion Forum
Archive => Archives => Topic started by: marystro on July 08, 2006, 07:51:35 am
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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
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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
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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
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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
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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
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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
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Hi Phyl,
I promise pics for everyone! I think you, Mark and others are all angels for me. Enjoy your weekend.
Mary
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naw, I'm just me! :D 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
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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
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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
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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
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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! 8)
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
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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
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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
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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
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Hi Phyl,
Dr. Chang wrote back and said that I will be receiving 18Gy total for my treatment. I guess I am managing these symptoms for now until treatment time. I am not worried since I know I am in the best hands possible. ;) Hey it's only an AN and not the end of the world. Besides, my husband will not even let me carry any backpack around in NYC and he's taking care of all the whinning from my 8-year old after a long day of walking around in Times Square, Central Park, ... Totally pampered! ;D
Mary
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Mary,
Fantastic news! He's giving you a good dose and you are going to do great! Pick out your music (I harrassed my CK team, in April, with Chipmunks Christmas!), get your adavan ready (ah, the mighty "happy" pill) and let's rock and roll you to wellness! :)
Phyl
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Today is almost over. Glad to report that there was no shooting pain today knock on wood (eating very carefully now). However at the end of the day I had some very minor lower facial sensations which I have not had before. I am wondering if they are related to fatigue since we have been walking a lot in NYC playing tourists or just being overly sensitive about every tiny little feeling? I don't think I am imagining these sensations though. The good docs on CK support group said it's probably nerve irritation. Counting the days down to CK-land --- 8 more days! Probably will have other issues after treatment >:( - Boy, I am mad! I guess I am entitled to these feelings...
Mary
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Greetings, first time on the message board.
I was just diagnosed with a AC - rather small (9 mm) contained in the canal through the skull - from the brain to the ear drum. Have experienced hearing loss and tinnitus.
I was actually scheduled for surgery today, but last week, a problem developed with the machine that monitors the facial nerve during the procedure. Interestingly the day before it was canceld, I was contacted by someone who was highly recommending the approach he took which was the "Novellus" Machine - in Indianapolis. When talking with my ENT surgeon when he called to cancel - and we were discussing options about rescheduling here in Fort Wayen or going to IU Medical - I asked about the "Novellus"... he actually indicated that it might be an option to look further into...he would if her were in my shoes. Here in Fort Wayne, they have a new machine called a "Cyber-Knife" -
I'm set to talk to the radiation-oncologist tomorrow. I'm open to any counsel those of you who have exprienced this would have, what questions I need to ask...
Right now, I am leaning 95% toward going that direction rather than surgery.
I would appreciate any feedback.
Thanks,
Steve
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Mary,
You are soooooooo entitled to your feelings on this.  You and I will compare notes someday and ya know what?  For my outcome and as well as I do (even with my post-treat side affects), life could really be so much worse... and I am truly blessed... and you are so truly blessed... and so is everyone on this site! :)  As my cheeky bloke notes, we certainly do have our foilbles and issues (heck, I do a great impression of a weeble -- you know, we wobble but we don't fall down).... but life is what we make of it, in light of everything going on... and Mary, I'm happy to have you hear and as a part of my AN life and new AN family!  Hang tough hun!
xo
Phyl
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Hi Steve and welcome! Oh, we are sooooo here to loan our good ears and shoulders and experiences to you!
I am a CK patient, fresh from treatment this past April. I will share a terrific CK (Cyberknife) patient support website with you:
http://www.cyberknifesupport.org/forum/
There are doctors there that volunteer their time (they think they are getting paid but haven't received any monies! :) ) in answering our questions. You will see many, many posts about AN's, use of CK as a treatment option. Dr. Medbery and Dr. Spunberg are 2 very active dr's on the site with a lot of experience and knowledge of CK treatments for AN's. You will see many posts out there from many of us here. Definately worth checking.
Know we are here for you and will help in any way we can! :)
hang in there.
Phyllis
Greetings, first time on the message board.
I was just diagnosed with a AC - rather small (9 mm) contained in the canal through the skull - from the brain to the ear drum. Have experienced hearing loss and tinnitus.
I was actually scheduled for surgery today, but last week, a problem developed with the machine that monitors the facial nerve during the procedure. Interestingly the day before it was canceld, I was contacted by someone who was highly recommending the approach he took which was the "Novellus" Machine - in Indianapolis. When talking with my ENT surgeon when he called to cancel - and we were discussing options about rescheduling here in Fort Wayen or going to IU Medical - I asked about the "Novellus"... he actually indicated that it might be an option to look further into...he would if her were in my shoes. Here in Fort Wayne, they have a new machine called a "Cyber-Knife" -
I'm set to talk to the radiation-oncologist tomorrow. I'm open to any counsel those of you who have exprienced this would have, what questions I need to ask...
Right now, I am leaning 95% toward going that direction rather than surgery.
I would appreciate any feedback.
Thanks,
 Steve
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Thanks, Phyllis,
I appreciate the encouragement. I will look at the website you indicate. I take your experience of the CK was positive and you would recommend it? What are the primary downsides to CK vs. Surgery?
Thanks,
Steve :D
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Steve,
Do check out CK! Yours is small and is probably an excellent candidate for CK treatment. I know I started with the thought of surgery and ended up (quickly) to CK decision. That machine malfunction is a blessing to you like I stumbled onto this great support group and the CK support website. There are many who have so much real life patient experience that you will find invaluable.
Mary
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Hey Mary,
Greetings from Oklahoma!!! I had CK Jan. 06. Welcome to the Class of 06. We are very special. I for one am a confirmed coward and worry to the point of obsession.
I was scheduled for surgery at HEI last Nov. Insurance gave me problems (thank God for unanswered prayers) and by the time we worked out the cash deal I was a total mess. In the mean time I contacted a local oncologist via email and ask at least 1 to 1 1/2 million questions about CK and GK. He convinced me that I wouldn't get cancer from it and it is concidered a cure. Of course my neurotologist said don't ever discuss this treatment with him again.
I will tell you this. It is painless, quick and seems to be working fine. 3 and 6 month MRI showed dark line through center and 6 month showed shrinking.
Here is how it worked.
Day of tests 8:00 am taken to a dressing room and put in scrubs. To the nurse and weighed, blood pressure, went over med. list and insurance. @ 8:20 went for mask fitting and was given vallium for the up coming cisternogram and CT and MRI. (Not every doctor does the cisternogram). At 11:00 am I was finished. Dressed but could not leave until I had emptied 3 glasses of water.
Day 1 of treatment 1 hour and 10 min. Then out to lunch with my husband and daughter. Shopping with my daugher and a friend.
Shoes were on sale.
Day 2 of treatment 50 min from time of entry to the center to out the door. More lunch and shopping
Day 3 of treatment 50 min as above and then lunch and to the casino for stress reduction. (You can see how stressful this was, it is hard to figure out which shoes to buy)
For the first couple of months I lost some hair, not much. Had hot flash on one side of my face. Tinnitus changed for the better. No hearing to save. Balance changed, not better, not worse just different. Some trigiminal numbness. Gone now.
Now at almost 7 months the balance is better, brain fog is lifting at times. I had the fog before treatment. I am riding my horses, that I had not ridden in two years, working everyday, taking trips and stripping wall paper from my house. I am older (Phyl, you just keep quiet and don't tell how old), I am a coward and I am doing fine. It was the doctors that put me under the stress when I was making the decision. Do I think of the tumor? Not much. Do I worry about it? No. I had it for years before I knew it. I do stress some for a couple of days before my MRI's because I hate being in the tube.
All the best,
Sandy
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Hi Sandy,
Thanks for that step by step process. It sounded like a real "treat" for a treatment, lunch, shopping and all. I hope mine will go like yours with such great outcomes :D.
Some questions:
What is cisternogram?
How big was your AN when you went for the treatment?
What are the glasses of water for? May be I should ask the nurse if I could drink the water after the treatment since my bladder can't hold much ;). In her letter, it says I need to drink plenty of water before. I don't want to keep getting up to go...
Mary
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Ya know Sandy...I'm going horseback riding with your old ...er.... young body one day! You know that! And yes... you laid it out perfectly. Kate and I were doing brunch/lunch after each of my appts... didn't do the shoe shopping but did nap for an hour or so later... but I think that's from making a pig of myself at brunch! :)
xoxo
Phyl
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Glad to report that those electric shocks have not occurred as much the last few days (not even once today ;D) I found out when I have enough rest and sleep there are less symptoms. Hmmm.. Not sure if they are related - rest and symptoms. I also read quite a few threads that say rest is a good remedy. May be it's the body telling us to slow down. I for one has not been a person who likes to slow down all my life.
My husband seems to think if I lay down then my tumor is not bumping against the facial nerve :-\. He tries to give me lots of "me" time the last few days and it's been great!
Mary
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Mary,
My AN was 1.0 cm x .7 when dx'ed. Six months later it was 1.2 cm x .7 cm. At treatment time it was 1.3 cm x slightly over .7 cm. and had grown a tail and a cyst.
Cisternogram i(sp?) is where they inject the die into your spine. I freaked when I heard this. Suggested in a panic that there were other ways to do this. Well, long story short. No pain, my daughter thought it was very cool to watch. The water is to hydrate you to keep from having head aches from the precedure. I did have to lay down the rest of the day. That was the very worst of my journey and not every doctor does that. Mine just happens to think it give a better idea of what is going on. Believe me, I have had worse hang nails than that. Yes they do let you up to go to the potty between glasses of water and between, CT's, MRI, and mask fitting. You won't be uncomfortable.
The worry is way worse than the treatment except for very rare individuals. In fact I came out of it feeling like a real nit wit for being so freaked out about the whole thing. KEEP REPEATING, THIS IS NOT SURGERY.
You will do just fine. With so many people praying and keeping things crossed for you, how could you go wrong?
Sandy
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Electric shocks came back today along with bugs crawling under the skin sensations >:( :(. I really hope CK will take care of them.
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Hi Marystro,
I am not sure what you mean by electric shocks..... do you mean those "lightningbolt" type of jabs that shoot through the head somewhere?...
I think some with Ans have had that...
Can you tell me more about this? Thanks....
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Shooting pain that traverse up my nose in my case. It only happens when I move my mouth muscle in a certain way and it does not always happen. I think someone calls it "electric shock". It only lasts for a second or so each time. I am hoping it's the trigeminal nerve being irritated when my muscle is pulled.
Mary
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It's not consistently happening. Very transitory. I did not have them for 2 days and then they came back again today. May be it's stress related also.
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Uh well, I am not a big believer in "stress" being an "answer" especially if one is dealing with weird things going on in one's body that were not there before whatever all of a sudden brought them to your attention................like an An.
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Same here. Definitely not stress related but can't figure out what trigger them. They are now gone after hanging around for 30 minutes.
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Well dunno, but i do read thread titles and end up readiing all sorts of things lol.... so, how is everyone on this thread? hope all are doing really well....
Windsong
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I have been reading all of your experiences with great interest as my neurotolgist at Kaiser is recommending watch and wait. She believes this is the best approach and to repeat the MRI in 6 mos. The AN is 9.5mm but is causing many of the symtoms you are all experiencing which seem to be extreme for the size. I am waiting to see the surgeon and in the meantime have been looking into treatment of the various symtoms. Neurotologist is referring me to a Tinnitus specialist and back to my GP for a TMJ referral (apparently Kaiser has a good specialist). I am going to PT for the imbalance and head/ neck pain. I also experience the sharp pain up the side of the face, nose sinus that is transitory and none of the docs can explain. I am hoping to get a referral to Stanford once I see the Kaiser surgeon in Redwood City. I have decided to see an acupunturist that is highly recommend by several friends to see if she can help with the symtoms including the pressure and pain in the ear that changes in intensity from day to day. Any one had acupunture for relief of symtoms?
Bev
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Bev,
I haven't had accupuncture, but I know many that have used it for other symptoms...I think its a worthwhile option and I would be very interested to hear how you make out. I'm a big believer in alternative "medicines" - my son has Chron's disease and it's much of the alternative things we have tried that have made a difference. Accupunture was one I wanted him to try...he drew the line at being a pin cushion (he's afraid of needles).
Let us know if you try it and how it works out...
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Hi Bev,
Sorry to hear about the symptoms you have. You should definitely check out Stanford if possible. My mom had back pain and leg pain in the past. She tried many conventional doctors and finally what cured her was accupuncture. I am not sure if it will be the case for you but certainly look into it in the meantime for relief. My understanding about AN is that symptoms are not size related. My AN is 2.3 cm (although Dr Chang at Stanford said it's 2cm AN?) and my symptoms are still relatively mild comparing to many that I have read. I am just hoping once treatment is completed this coming week, I should be on the way to recovery or at least stablized.
One thing you should consider before any surgery decision is to check out Cyberknife and other radiation options. Wait and watch is fine as long as your symptoms are not getting worse and impact your quality of life and that the tumor size is not alarming. From what you described, I would do something about it since it seems to be concerning.
Best wishes,
Mary
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Hi Mary. Just wanted to chime in here as I had CK with Drs. Chang and Soltys in March. You are in very good hands at Stanford, and I think you'll find the whole experience much less unpleasant than you might think. I had a few symptoms that were treated with a course of Decadron, but overall I can't complain too much. We'll see how everything is shaping up in September when I have my 6 month MRI and hearing test.
Good luck,
Kristina
P.S. sent you a private message
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Hi Teasely,
Just replied to your private message. Thanks and am glad that you are doing fine. I think I will be also.
To recap my experience so far:
Day 1 - CT scan
Probably the only process that I felt a little pain when I got the needle of the IV for CT. Even that was so minute. The face mask was kind of fun - warm in the beginning and tightened up when it was cool down. The entire process took about 45 minutes. Most of the remaining 2 hours was just waiting around to see if I needed another MRI which fortunately in my case my 1-month ago's MRI sufficed. The worst part was having to drink 8 glasses of water to flush the CT contrast.
Day 2 - 1st Treatment
It's only been 2-1/2 hours since treatment (1st dose). I do not feel any side effect as yet. So far, it has been the best medical experience I ever had. Correction - I did not even feel like I just had a medical treatment at all. Actually as Larry the person who fit my face mask said, "it feels like you are in a hair salon!" Dr. Sakamoto on the treatment team gave me a tiny purple steriod pill for possible swelling which I took right after the treatment. It took only 30 minutes for the entire process. I was mostly just lying on the table with my face mask on listening to a CD that Alex (my 8 year old) gave me.
I came back to the Marriott Residence Inn for BBQ night with John (husband) and Alex. So far so good and I do not feel any different. I think it is pretty cool for "brain surgery". Dr. Chang and Dr. Soltys are really really nice and accommodating. Dr. Chang even changed the treatment schedule to earlier today based on John's request so that Alex can do his evening activities. Dr. Soltys is so sweet that he can be my favorite little brother anytime. I will recommend the Stanford team (Dr. Chang and Dr. Soltys) and CK to anyone with a heart beat!!
Mary
P.S. We met other patients yesterday and today at the CK Center that have more serious ailments (cancer). It made me feel like my AN is minor relatively.
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I am glad to report that the last 2 days went extremely well. Thanks to all your positive thoughts and great support through this life little challenge (only 2.2cm in size)! You are the BEST :D!!!
No side effects so far. It took 30 minutes each day. I listened to classical music the last day since I did not like John’s 70s music the day before. They took Alex around to show him the computer monitors and the treatment room. He was most impressed by the Linear Accelerator that delivers the x-ray as he was all “wowed� by the amazing “Star Wars� like environment. I brought the soft mesh mask back for Halloween costume ;-).
According to Dr. Soltys, the radiation oncologist, re-growth is 1% chance which they can take care of by surgery if necessary. In their history they only have 2 or 3 regrowths out of hundreds of AN treatments. Tumor cell DNA is being destroyed by the radiation while the normal tissues are spared. I guess I will have dead tumor in my head which I can use for all kinds of excuses now ;) ;). No medication unless I experience side effects. 6 months later I will have to do another MRI and audiogram for follow up visit.
And Mark, we made reservations for the California Cafe tonight!
Mary
much happier and relieved!
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Mary,
great to hear your CK experience at Stanford has gone so smoothly! ;D.
Thanks for carrrying on the tradition of the post treatment celebration at the California Cafe tonight. I'll be sure to break open a good bottle from the cellar tonight and toast your success :D
Mark
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Hey Mary and all!
I'm so glad to hear your experience with the ck treatment and Stanford is going so well! I've often thougth about you and wondered how you're doing. I too have been traveling, so I havn't caught up with you till now. Are you now finished with the treatments? Do you feel any different with your sypmtoms? As you may recall, I'm still waiting treatment, with very similair AN / symptoms....I visited Dr.'s in the OKC area (Sandy's town ;-)) and was pleased with the overall experience. So, I've yet to decide where, but sure I will get CK very soon. Please keep us up to date with your results!
:)
Melinda
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Hi Melinda,
Yes, my treatment was completed today - 3 days, 30 minutes each, total 18Gy. Very simple process. The only difference in the symptoms front was the facial sensations and shooting pain are gone for the last 2 days (I don't know if it's due to CK since it is so soon or other reasons), a tiny little more hissing sound which followed after treatment for a little while but got back to the way it was before (almost unnoticeable) after a good night sleep. I will see if today's hissing also behave the same tomorrow morning. Other than that I feel great! Dr. Soltys, the radiation oncologist, did say about 20% of patients may have some side effects but should only be transient. He was also honest to say that regrowth probability is about 1% since there is no guarantee in medicine. I really appreciate their professionalism and integrity.
Biggest lessons learned: we need to manage treatment decision and plan based on our own research, our symptoms/conditions, our preferences and unbiased professional opinions. What works for one situation may not work for another.
Mary
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It's been 4 days since last day of CK treatment (last Friday). Only slight side effects I had was a little headache for a few hours and a little louder hissing sound which is almost unnoticeable. I slept on Saturday and Sunday night for a long time (probably 10 - 12 hours). I feel great today and even went into the office although I was told by everyone that I should take it easy ;). I hope the good results keep up.
Does anyone know if side effects after CK (if any) usually start immediately or will take a few weeks/months?
Mary
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Mary,
I think the post treatment effects are different for each individual. I had a mild sunburn feeling on one cheek. A warm feeling scalp for a few days. Also had very mild and very short pricking pains over my eye brow. My facial numbness got a little worse before getting better and now almost gone. I did get kind of hot flashes on one side of my face and my face would feel warmer on the treated side. That's all gone now.
I don't know if I was under so much stress before treatment or just euphoric to have the treatment over. For the first week or two I had a lot of energy. Then went through a period of fatigue and flu like symptoms for a while. The Brain Fog feeling I had before treatment and after seems to be a lot better.
As far as my Ck treatment is concerned I am doing better than expected. I still have imbalance and always will. It is not bad and does not impact me live much. I practice looking stright ahead when I walk and stress my balance by turning and moving in different ways that cause me difficulty. The past few weeks it have been very hot here and I found my balance was worse. Your are going to laught at this next one. I was wearing flip flops and flat slides. This morning I put on a shoe with a 2 inch heel and the balance improved greatly. I thought that was strange so I put on the flip flops and balance was off again. Go figure.
Nothing in this life is prefect and neither is CK. It just seems to be the better of some options for some of us. I have never had the swelling post CK. Why would I? I have had so many steroids pumped down me for my AIED that nothing would swell. If I could get that under control as easily as "Ivan the Terrible Tumor", I would be a happy camper. Mary, after 7 months I hardly ever think of the tumor. I am so much more concerned with the loss of all hearing from the AIED that the tumor is out of my thoughts most of the time.
I can say I have never missed a day of work because of the CK treatment. The only time I stress is about a week before the next MRI. FYI this week I am crawling up and down a ladder at home, stripping old wall paper off and texturing and painting walls after work. Now how is that for normal routine?
Hugs and blessings,
Sandy
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Hey all it appears I've entered this one right at the end.ÂÂ
Mary, I had CK with Chang and Soltys last October and can't speak highly enough of them. My AN was pushing 3cm and I was largely asymptomatic. Now approaching the 10 month mark (wow how time flies) the alien in my head (as we refer to it) is "liquifying". Yes that's the medical term the radiologist used. In real terms the sucker's dying real fast so we're celebrating.
I know others have posted at length about side effects etc but I remember that for about 6-8 weeks after CK I was exhausted. I've since spoken with other people who've had various forms of radiation and this seems consistent with the body processing it. What helped were some enzymes called Vitalzym (purchased off the net) and good plain old fashioned exercise. 30 mins a day on the bike got me breathing hard, got my heart pumping and my body rid of all those things I didn't want in there. Apparently exercise directly rids your body of radiation. Other than that I've had some occasional oddities like the odd pain in the head, super sensitive hearing, etc. But I understand that it's different for everyone. So hang in there. I'll try and start visiting this site again as there doesn't seem to be anyone here in DC other than me who has had CK!ÂÂ
Welcome to the once exclusive, but thankfully ever growing club of CK patients.
CC
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Mary,
You rawk!!!!!!!!!!!!! :) I'm so so so proud of you!!!!!!!!!!!!!!!!!!!! Hang in there!!!!!!!!!!!!!!!
nuff said! ;)
xoxoxoxoxoxo
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Hey everybody,
I met another fellow ANer from San Diego for lunch today for the first time. It turned out that John and I have been working within a mile from each other for the last few years. It's a small world afterall. John had CK at Stanford with Dr. Adler in 2004 and is doing really really great. No more symptoms, no more side effects, nada! Go, John!! Rub off all these good kama on me please ;)
** John - Hope you don't mind I share this with everyone ;). We need positive energy and thoughts all the time.***
John and I are wondering if there are any other AN fellows in San Diego who have gone through CK. So far, we only know about John and myself... It was terrific to be able to share experience in person. I immediately gave John a BIG hug from all of us. Feel like we are family already ;D :D
Mary