Author Topic: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang  (Read 17788 times)

tdlight

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Two year follow-up - Fractionated Cyberknife @ Stanford with Dr. Chang
« Reply #30 on: April 04, 2018, 09:54:59 am »
I had my two year follow-up MRI and audiogram last month and am pleased.  Dr. Chang's office reported the tumor is "stable and shrinking."  That seems to be a bit of a contradiction but I guess by stable they mean not active anymore.  They want another follow-up in two years.  I took a look at the MRI and there doesn't seem to be any additional darkening of the tumor image, but I'll take the shrinkage and be very happy about it.

The hearing test was equally encouraging in that my hearing continues to be stable (no shrinkage), with no additional hearing loss.  Based on my internet research pre-treatment I may not be out of the woods regarding future hearing loss but the fact that it is stable two years out I think is encouraging.

I have had no side effects that I have noticed; still some slight balance issues but those seem stable as well.

I'm happy to answer any questions.  Good luck to all on this journey.

Don’t think twice, it’s alright - Terry
« Last Edit: April 04, 2018, 10:09:27 am by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

Gtmochi

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Thank you so much for sharing. I head up to Stanford for CK in a couple weeks, myself. Though my AN is larger than yours, reading your experience has been very informative as well as helpful in preparing myself about what to expect!
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

SP

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Great news! it's awesome you can wait two years before the next MRI…
did you have Gadolinium injection ? my next one '(year 3 after CK) is due in August and they said no GAD is ok.

Thanks for sharing your news

Stella
2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Welcome Gtmochi - Know that you are in good hands at Stanford and everyone there will take good care of you.  You have made a great choice.  Are you seeing Chang?  Do you know how many fractions they are planning?  Make it a vacation if you can and it will be over in no time.  Don't think twice, it's alright!

Hello again, Stella - Yes, they used contrast during the MRI and I'm fairly certain it was gadolinium.  I was a little surprised about the two years but it sounds like for stable tumors the doubling interval (6 months, 1yr, 2yrs, 4yrs) is somewhat common?  I'm not sure.
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

Gtmochi

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Hi tdlight!

Yes! I am seeing Dr. Chang and Dr. Hancock.  I think I have made a good choice, too...but unsurprisingly, it wasn't easy. I am a little apprehensive about how the next several months and years will unfold, but in my heart I feel all will be well. I am to have 3 days of treatment. I am not sure how long each will be - I think remember the nurse practitioner saying something about 45 minutes, but I may be misremembering. I have spoken to SO many professionals during this whole journey. It's been an education on being engaged and advocating for yourself as a patient!
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

tdlight

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I'm a little late in posting but March was my 3 year treatment anniversary.  Since my next MRI isn't until the 4 year mark I kind of forgot about it (not a bad thing...).  I'm happy to report I am doing fine, no new side affects, and hearing and balance issues seem stable. 

Wishing everyone the best of outcomes.  Don't think twice, it's alright!

- Terry
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

SP

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Hi Terry,

So glad you're feeling well !!!! -- its heartening to hear

to continued good health,
 
Stella
2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Another year in the books - four since treatment now.  I just got the call from Stanford on my most recent MRI and again was told "stable but smaller."  I was given dimensions this time, 4x3x3 mm, which is down from the original 5x3x4.  They said to plan on another MRI in 3 years.

Hearing test back in September did not indicate any significant change.

I do still notice some balance issues but nothing worse than before.

Good luck to all - Don't think twice, it's alright!

- Terry
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

SP

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Great news Terry!

Smaller and 3 years till next MRI is a great result :)

keep well,
Stella
2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Thank you, Stella!

How have you been?  It looks like you are coming up on the five year mark this August and another MRI, maybe?  Hoping for continued shrinkage for you as well.

- Terry 
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

SP

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Thanks Terry! I'm doing well. Yes almost @5yrs, actually I'm doing my MRI in a few weeks, as last year I had one in March and we are now at 12 months since then... fingers crossed. I'll post results for this.

Most symptoms post CK have thankfully dissipated over time. Most noticeable is approx 40% loss in left ear... hearing aid helps. Everything else is what it is, I keep moving forward :)

best,

Stella
2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)