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Author Topic: 6 Month CK Follow Up  (Read 6644 times)

marystro

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6 Month CK Follow Up
« on: February 09, 2007, 05:12:57 pm »
I think I am becoming an expert in reading MRI using the software in the CDs.  I was playing around with it last night that I even figured out how to measure, how to open up each film to enlarge, how to put films side by side to compare, how to click and get "sliced" views of each film, how to open up the report to look at, how to put old images and new images on top and bottom rows, wow... so much you can do with the package!

I noticed you could actually measure the size and could easily get variations of measurements.  I also noticed the differences caused by between MRI machines.  My follow up MRI is done in a different place...

Anyway, looking very closely to the image with it enlarged, I am seeing some different colors (grey and white) in the tumor.  This is different from the diagnosis stage.  Don't know what that means yet.

MRI shows no change in size essentially but change in characteristics, aka radiation-induced necrosis, quote and unquote from the report.

Although my hearing is much lowered in the high frequencies, I can still hear from the AN side on the phone.  So I am happy for that.  Hoping for better result next time.

No other new side effects.  Just louder tinnitus.  Happy happy.

Shipped out the CD and reports to Stanford yesterday.  Can't wait to get the review back!!  Will keep you all posted.

Mary
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Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

shoegirl

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Re: 6 Month CK Follow Up
« Reply #1 on: February 15, 2007, 08:45:02 pm »
Mary,

Hope you get some good news!  Keeping my fingers crossed for you.  :)
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ppearl214

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Re: 6 Month CK Follow Up
« Reply #2 on: February 16, 2007, 12:31:51 pm »
*sits here anxiously awaiting Mary's update so the Martini's can be poured to celebrate*  :-*
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pearchica

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Re: 6 Month CK Follow Up
« Reply #3 on: February 26, 2007, 10:45:52 pm »
Hey Mary: hope all is well- and I love martinis, manhattans, scotch- well heck, I'm just a booze hag in general.  Take care, Annie
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I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

marystro

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Re: 6 Month CK Follow Up
« Reply #4 on: February 28, 2007, 08:31:48 pm »
Got a call from Stanford yesterday.  The doctors will be meeting tomorrow to review my 6-month reports (MRI and hearing).  They will call me as soon as they complete their review.  Keeping my fingers crossed now...

On another note, my 9-year old developed some excessive eye blinking last week.  His daddy bought him a PS3 for his birthday and he played so much for a few days!  We stopped him yesterday and gave a ban for 7 days.  Today is Day 2 without TV/PS3.  His blinking seemed to have gone away.  I hope the improvement stays.  In my mind, I already decided that he won't get to play that any more even after 7 days.  Still need to figure out how to convince him and the worst one his dad!  I was doing some research on the web that TV/computer/video games give kids that are susceptible issues - all sorts of issues from mild to serious!!!  I was so worried and scared that I was totally stressed out...  Today I felt some trigeminal sensation (tiny sharp pain) hoping this is just stressed induced and / or swelling / radiation residual effects.  I think I need some relaxation and "me" time!!!   :-\ :(  Not a good week overall.  Missed talking to you guys on this forum...

Mary
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Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 6 Month CK Follow Up
« Reply #5 on: March 02, 2007, 08:43:17 am »
*sits anxiously, biting fingersnails for Mary's update*  :)
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flier58

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Re: 6 Month CK Follow Up
« Reply #6 on: March 02, 2007, 09:38:56 am »
Hi Mary and Phyl,
I am already done with my fingenails ...... is it time for toenails??????   Mary, let us know ASAP.  We are all hoping for great news.
Flier58
Sorry about your son.  I hope that PSP3 ban will work.
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marystro

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Re: 6 Month CK Follow Up
« Reply #7 on: March 02, 2007, 03:14:38 pm »
The suspense is killing me.  May be I should give them a call otherwise we all have to head out to the spa, forget manicure or pedicure...

My son is doing much better.  No more blinking since the ban started.  I think he may be photosensitive especially to flash and high animated video games.

Just left a VM with Stanford...

Mary
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Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 6 Month CK Follow Up
« Reply #8 on: March 02, 2007, 03:19:16 pm »
*looks down at all chewed-off fingernails....*

ah, the drawbacks for kids and the modern technology age of games and such.... glad to hear he's doing better.

Keep us posted on Stanford.......... just after lunch hour there... I'll be waiting! :)

xo
Phyl
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marystro

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Re: 6 Month CK Follow Up
« Reply #9 on: March 02, 2007, 11:28:35 pm »
Elizabeth (Dr Chang's nurse) called.  She said the docs reviewed my reports yesterday and will be providing her dictation of the report to her.  She will then send the dictated report to me in the mail.  I asked if she could just email but she said they have to send it by regular "snail" mail.  She did say if there were any issues at all, they would have picked up the phone and called me right away already.  She said Dr Chang said it's "fine", a word that I like to hear!!

So still waiting...  the suspense continues...

Regarding my son, his blinking disappeared totally today --- only 5 days after the TV/PS3 ban!  I was appalled to find out all kinds of warning regarding photosensitivity issues in the SONY manual!!!  Instead we are now spending more time listening to music, sports (he just started water polo yesterday), good old fashion family time together.  I think my husband is quite close to being convinced to get rid of the PS3.... Again, things happen for a reason...

Mary
« Last Edit: March 05, 2007, 12:10:07 am by marystro »
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Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

BevM

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Re: 6 Month CK Follow Up
« Reply #10 on: March 04, 2007, 09:35:31 am »
Hi Mary:  Keeping good thoughts for you!  I am looking forward to all that Stanford has to say to you.  I am a few months behind you and have my 6-mo. MRI scheduled for 4/18.

How have your sysmtoms reacted in this past 6 mos.? Mine have increased but I suspect this is normal tumor swelling and hoping it will begin to get better soon!!

I am also interested in your findings about PS3.  I am wondering if game boy is the same or if it is mainly the larger screen ps and x box?  I'll look back at your posting to see if you said where this information is available.

Holding the Hope!!!

Bev
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flier58

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Re: 6 Month CK Follow Up
« Reply #11 on: March 04, 2007, 03:28:05 pm »
Hi Mary,

waiting with my fingers crossed (waiting for my nails to grow),repeating word "fine" and waiting for details. 
Flier58
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marystro

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Re: 6 Month CK Follow Up
« Reply #12 on: March 05, 2007, 12:18:04 am »
Hi Bev,

It's in the beginning of the user manual of the PS3.  You will see something about "Photosensitivity...".  I think some kids are just more at risk than others.  I also banned my boy from playing with Gameboy.  Instead, we go on hikes, play with friends in the park, sports, talk more.  Just good old fashion family time together.  Today kids are too hooked on TV, video games and computer (games and IM).  They should be out there running around than sitting in front of the tube all day anyway.

There are all kinds of horror stories about children and teenagers (and even grown ups) to addicted to video games.  You can see them all over the internet and news.  Instead of playing with video games today, my son and I went for a walk to the pond and trails close to our house.  We ran into kids in the neighborhood there and they were just running around in the woods like kids did in the old days...  Lots more fun watching them doing that than watching them in front of the screen.  Priceless!!

Do you have young kids who like video games?

...will be checking my mail box everyday for that "fine" report...

Mary
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Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

BevM

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Re: 6 Month CK Follow Up
« Reply #13 on: March 06, 2007, 09:03:48 am »
Hi Mary:  Th anks for the info!

I have grandkids who love any form of video game.  Fortunately my daughter has very tight limits on her kids TV and video time.  My sons kids have game boy and PS2 but will always choose to play outside if there are other kids around.  We live in the country on the same property and fortunately some kids their age recently moved into the neighborhood so they have acreage to play.  ( They still like Grandma to play football and baseball with them) these games really test my balance issues but may also help. May have to switch from tackle to touch football, they are getting too big!

Hope you have good news to report soon.

Bev
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ppearl214

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Re: 6 Month CK Follow Up
« Reply #14 on: March 06, 2007, 03:00:08 pm »
*continues to bite any remaining fingernails for Mary's MRI update*

xoxo
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