ANA Discussion Forum
Archive => Archives => Topic started by: okiesandy on April 06, 2006, 04:44:32 pm
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I had my 3 month follow up and MRI following my Cyberknife treatment started on 1/5/06.
I requested a 3 month MRI because my AN was of the fast growing varity.
Results: Ta Dah, a drum roll if you please.................small amount of swelling and a dark line through the tumor that looks like possible death (of the tumor, not me), according to the radiation oncologist. He does not give measurements. He did show me how it is measured on the computer and ask me to try and get the same exact measurement if I could. I tried 3 different times and go three different measurements. He tried twice and got almost the same measurement. According to him my pretreatment MRI and CT are at a slightly different angle.. Impossible to get same angle everytime. We looked at all of the markers around the tumor and the shape and even I could see not much had changed. I zeroed in on the dark line and know it is death. OK, I know some doctors do not use the words death of the tumor, he does and I prefer it that way. R.I.P. Ivan the Terrible.
My balance is improving slightly. Tinnitus is not as loud for long periods of time. The only after effect I have is a numbness and sometimes slight pain on the side of my face. My tumor was very near the trigiminal nerve.
OK Phyl, you can buy those drinks for Dr. Medbery now. My next appointment is three months away.
Much luck with your CK, I wish you well.
Sandy
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Sandy!
Wonderful News! I hope "Ivan" is dying! Glad to hear your balance is getting better! The tinnitus too. Could the swelling be causing the slight pain on the side of your face?
I'll keep my fingers crossed for you!
Suzanne
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sandy,
you got me in tears! Oh, congrats, congrats and keeping fingers, eyes, legs (ok, forget that last one) and everything crossed I can for continued great news! Oh, heck hun... not only am I buying him the drinks, but buying them for you too!
FAB news! The encouragement I need as I (tomorrow) complete my 5-day dose/treatment! you rawk and give me the hope I need! all of you do!!!!!!!!
Suzanne, right there with you! :)
xoxoxox
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Phyl,
I am so happy you are almost done! Hope you are feeling well! When will you have your first followup MRI? Just curious some have them at 3 months some at 6 months?
It is good to see everyone sharing their experiences. I really think it makes a difference for those in the decision process.
Lots of hugs!! :-*
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Awesome news! Glad to hear about the necrosis so early, that's a good sign. :)
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Not a lot of necrosis, it is kind of a fine line all the way through the middle of the longest part. I am trying not to get really excited about it. Dr. Medbery is cautious. Will wait for the next visit. I envision it dead in my mind every day.
We are pretty sure the swelling is causing the numbness and pain in my face. I don't have it every day and sometimes it is only for a few minutes. Little bugger is just very near the trigiminal nerve. So far there is not a lot of swelling that I can tell or that Dr. Medbery can tell.
Phyll, you can buy me all of the drinks you want. I have some catching up to do. The 6th was the anniversary of my first encounter with Ivan the Terrible. Breezed through it because my 3 month was the day before. Bet you are glad your treatments are behind you. You will focus on them for a few weeks and if all is going well after a month you will start to relax. I don't know if you will have a 3 month MRI or not. It is a little stressful a few days before that first MRI. So far I do not regret choosing this treatment and am very grateful that it was an option. Got'em all crossed for you. Even the legs if that would help ;)
Sandy
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*peeks in*.... hey gang!
CK update posted on CK Support website (link: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=3928) which gives an update as of today.
Sandy, Dr Medbery is bummed he's not getting a pay-raise for those drinks but if I send along some $$ to you, can you help me out? He certainly has earned them for all he has done for you and me! :)
Suzanne, Jamie, Sandy, etc.... I couldn't have gotten through this without you all.... and for that... a VERY humbled thank you. Truly!
xoxo
Phyl
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Great outlook Sandy and it sounds like "curtains for Ivan"!!
I had my first post MRI today and am anxiously awaiting the results. Hopefully, mine will be
joining Ivan in the acoustic neuroma "afterworld".
Cheers,
Sue
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Sue,
on your heels and please keep us updated! Sounds like many here are recent AN "post" treatment status and all soaring together!
Phyl
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oh why oh why is "DEATH TO IVAN" coming to mind? is it a play? a famous line somewhere?
I'm hoping it's just death to sandy's ivan!
Congrats..here's hoping by the next MRI you can really see a difference and really be tossing some drinks around for good cheer!
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OK just had my first MRI (6mos) Tues April 11, and my doctor just called me with the results....which are right on target with what we
were expecting... he said that there is significant darkening in the center of IT which is good news, no swelling, everything looks good.
So needless to say I am thrilled, put me in for a tsunami martini (its delicious)!
Thanks to all who have made information available and shared their experiences, this has been so incredibly helpful!
cheers,
Sue
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SUE! OMG, that's fabulous!!!!!!!! It's folks like you and Sandy and Jamie and Mark and shoegirl and the rest of the CK gang that keep my spirits up on my decision! A true shot in the arm for you (and me!) to hear this news!
I'm buying the martoonis!!!!!!!!! Congrats and continued wishes for this great news!
Phyl
OK just had my first MRI (6mos) Tues April 11, and my doctor just called me with the results....which are right on target with what we
were expecting... he said that there is significant darkening in the center of IT which is good news, no swelling, everything looks good.ÂÂ
So needless to say I am thrilled, put me in for a tsunami martini (its delicious)!
Thanks to all who have made information available and shared their experiences, this has been so incredibly helpful!
cheers,
Sue
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Thanks Phyl!! And I will get the next round after you get your good MRI results!!!
I don't know if you are having one at 3months or 6mos. , but whatever amount of time it is don't obsess about the wait. I kept looking at the calendar, I was like ok 2 more months until we can see whats going on. Just let the time go by, it will pass whether we obsess about it or not.
Cheers,
Sue
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This is fabulous news! I just love reading these positive updates and imagining many weak little tumors in their death throes!
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Sue,
Wonderful News! I am so happy to hear that you got a good report! :D
Hope the next one is even better!
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Hi Sandy and to all,
I have been reading posts here but have not done much posting. However, your news is great! I am very happy for you and I am sure things will only improve and get even better for you as time goes on.
I am now 9 months post CK treatment for my AN and things have been getting better each month. My 6 month post treatment MRI also showed a black line running through my AN and my tinnitus has stabilized and has even gotten a bit better. No balance issues and my hearing is still OK in my AN ear, just a slight high frequency loss.
All in all, now at 9 months, I feel I am doing great considering what I went through, so I am confident you will improve as time goes on too.
My thoughts are with you and with all of you other folks with AN. I am sure that someday, we will all be putting this behind us and will not even think about it at all. I now that I am already starting to feel that way.
John
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John,
So glad you posted your results! It is great news! And I am happy for you. I hope you will post your next MRI results too. I am a little behind you in treatment - had my CK in Dec. 05. So I am about 4 months post CK. Reading your story helps. It really makes a difference for all of us CK patients and those seeking treatment. Happy to hear you are feeling good and hope it continues!
Best Wishes, Suzanne
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Hi John and Suz!
Folks like you all (and Sandy and Mark and the entire radio-Postie gang) are what keep me going! Here's sending huggles that you all keep on this path of wellness and lordy, the Class of '05 is so impressive and looking forward to the Class of '06 following in your heels!
Phyl
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UP DATE,
Had my 6 month post CK MRI last Friday......... More darkness down the middle and for all of you size freeks her are the measurements....
Pre CK 1.2 cm x .7 cm
Three Month: 1.5 cm x .6 cm and a thin dark line through the middle running length wise
Six Month: 1.2 cm x and a smidge over .5 cm with a darker slightly wider dark line.
Facial numbness, about gone. Just a small spot beside my mouth. No more flushing.Tinnitus is a lot less on some days
Balance is off still. However, I am coping and back to riding my horses at a walk and slow trot. Not ready for anything else yet.
Some days are better than others. Now, if I could get the autoimmune thing under control I would be a happy camper.
I think "Ivan the Terrible Tumors" days are numbered.
Sandy
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Sandy, you have NO clue the martini I am going to pour myself tonight to celebrate this fantastic news of Ivan, the crappy booger and his miserable, timely death! Gawd, you continue to give me massive hope that my CK treatment is going to kill ... um.... dang, haven't named it....
Congrats, congrats and continued good wishes! Go for a bareback ride! You earned it hon!!!
xxooxoxxo
Phyl
UP DATE,
Had my 6 month post CK MRI last Friday......... More darkness down the middle and for all of you size freeks her are the measurements....
Pre CK 1.2 cm x .7 cm
Three Month: 1.5 cm x .6 cm and a thin dark line through the middle running length wise
Six Month: 1.2 cm x and a smidge over .5 cm with a darker slightly wider dark line.
Facial numbness, about gone. Just a small spot beside my mouth. No more flushing.Tinnitus is a lot less on some days
Balance is off still. However, I am coping and back to riding my horses at a walk and slow trot. Not ready for anything else yet.
Some days are better than others. Now, if I could get the autoimmune thing under control I would be a happy camper.
I think "Ivan the Terrible Tumors" days are numbered.
Sandy
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BAREBACK???? On my horse??? Of course that is what you mean, right? Last time I rode bareback I fell off. Remember I am old.
Give the little booger a name. That is maybe the only fun thing about this. Nothing sweet will do.
Hugs and Blessings
Sandy
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BAREBACK???? On my horse??? Of course that is what you mean, right? Last time I rode bareback I fell off. Remember I am old.
Give the little booger a name. That is maybe the only fun thing about this. Nothing sweet will do.
Hugs and Blessings
Sandy
You're not too old, you young geezer! :) Oh, enjoy and celebrate. Hoping my 6-month postie MRI in Oct will show the beginning of the same in the timely death of .....what shall we call it? :)
xo
P
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Hi Sandy!
That is great news! ;D So glad to hear that you're doing better with your symptoms too - are these results what were expected or even better? Its really good to see the good postings too.
I plan on trying to see Dr. Medbery sometime within the next couple of weeks...I was thinking of meeting the same folks you saw and checking out the facilty. Maybe we'll have a martini together ;)
congrats, melinda
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Melinda,
Glad to hear from you again. Saw Dr. M at the Airport about three weeks ago. Got a free consult and really picked up on his confidence in the CK treatment. He was on his way to FL. to help the with some new CK center. We briefly touched on you and he said he thought you were not in a hurry. Did you get the MRI's to him?
I am very happy with the results so far. You don't know how glad I am that I decided to go the CK route. I really did not expect to see much difference this soon. Of course I would like "Ivan" to be gone. Just fall out of my head or something.
I saw Dr. Morrison this time. Dr M was out of town. She was very nice. She thought it looked good for 6 months. The 1 year should show more progress. I am having a lot more trouble with my autoimmune hearing problem than with the tumor. I don't even give the tumor much thought any more. I know the balance thing will never be perfect. It isn't really bad ,so that's good. I did stress some the week before the MRI.
It is 105 here and it isn't bothering me as much as it did before treatment. Last summer the heat really made my world out of balance. I kind of expected to show more symptoms by now. That is not the case, I seem to just slowly get better. Some days are better than others. There are days that I am so normal it is beyond my expectations and some that I am off balance and tired. Most of my brain fog is gone. I am back to just plan ditzy blonde self most of the time
I don't know about the martini. I am a margarita kind of person. You just remember I owe you a dinner and we can include drinks. Email me and let me know when you will be here and how we can connect.
Blessings
Sandy
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Sandy, hoping you gave your D. M a huggle from me too... he's truly been priceless to me in all of my question, my issues.. .and my warped humor!
xo
Phyl
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Hey Phyl,
Did you ever get the wine to Dr. M? I didn't see him last time I went for an appointment. He is getting to be a very busy man. Running all over the country talking about CK.
Melinda did not get to see him when she was here. So far I like all of the doctors in his office. They just seem to have the personal touch. They always take all the time you need.
Hugs,
Sandy
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no, not yet... what is the best way for me to get it to him?
xoxox
Hey Phyl,
Did you ever get the wine to Dr. M? I didn't see him last time I went for an appointment. He is getting to be a very busy man. Running all over the country talking about CK.
Melinda did not get to see him when she was here. So far I like all of the doctors in his office. They just seem to have the personal touch. They always take all the time you need.
Hugs,
Sandy