Author Topic: 1 week post CyberKnife and new to forum  (Read 2696 times)

hollybinx

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1 week post CyberKnife and new to forum
« on: June 05, 2012, 07:58:03 am »
Finished 5 CyberKnife treatments last week.  Experiencing a significant change in my tastebuds and a sore on my hard pallate.  Also, so teariness and depression.  Any advice? :(

chloes mema

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Re: 1 week post CyberKnife and new to forum
« Reply #1 on: June 06, 2012, 11:54:52 am »
Welcome hollybinx to a great forum, you will get lots of support and help here.

I'm almost a month out from my CK procedure.  My taste buds are s-l-o-o-o-o-w-l-y coming back but still have problems with them.  What I've noticed now is instead of not being able to taste at all, after I've eaten for a few minutes then the taste goes away so I'm assuming that must mean it's getting better.  A friend of mine said this is common and they will return; one can only hope.

I've just recently noticed a sore on the roof of my mouth.  I remember my dentist telling me to use salt and warm water as a mouth wash when this happens.  I did it last night, it really did help until I ate breakfast this morning. 

Good luck, keep posting, and keep reading.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Jim Scott

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Re: 1 week post CyberKnife and new to forum
« Reply #2 on: June 06, 2012, 03:26:12 pm »
Hi, Holly - and welcome

My best advice at this point is to simply try to be patient.  Recovery can sometimes move at a glacial pace, which can trigger depression.  The main thing to focus on is the knowledge that your condition will improve, just not as as fast as you wish.  In short: things won't always be this way.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: 1 week post CyberKnife and new to forum
« Reply #3 on: June 07, 2012, 04:31:22 am »
I've just recently noticed a sore on the roof of my mouth.  I remember my dentist telling me to use salt and warm water as a mouth wash when this happens.  I did it last night, it really did help until I ate breakfast this morning. 

Hi Holly and welcome.  Karen, sending wellness wishes to you as well!

I'm 6 yrs post CK and hoping some of my words may be of help as well. I highlighted what Karen noted above and it certainly helped me as well.  My tastebuds were "weird" at very first post CK but as noted, with patience, they came back fine.  No issues now. 

This AN journey, regardless of what treatment choice someone makes, can be such a roller coaster ride of emotions.  The exhilaration of having treatment finally done after so much research for which path to follow.... the emotional drain of knowing we have this diagnosis and how to proceed.....the fear of the unknown in not knowing what will happen after our treatments (again, regardless of treatment choice).  Thus, one terrific reason the forums are here.... the Willing to Talk (WTT) list is available (AN'ers that volunteer to talk on the phone/email), etc.  Know that you are not alone in these feelings as many of us have experienced them... but, the neat part.... we are here to help.....

Keep posting, keep sharing.... as we can be of help... and yet, your posts may be of help to another! :)

Hang tough, congrats on being a "toastie postie" to you and Karen... and know we are here to help!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"