Author Topic: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang  (Read 14873 times)

tdlight

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It's been three days since my last treatment and I am experiencing what I hope is only a severe post steroid funk.  My head is in a fog, I'm having trouble thinking and concentrating, my energy is very low and I have very little appetite almost to the point of nausea.  My tinnitus seems especially irritating but that is probably just because I feel like crap.  Dr. Chang said I would likely experience a down period after the steroids wore off on Saturday, but he made it sound like it would be very short.  I actually felt pretty good on Saturday and really started to struggle yesterday (Sunday).  Maybe I am especially sensitive to these types of steroids?  I was on prednisone for a couple weeks after a back surgery once and I don't think I felt this bad; although with the prednisone I believe they tapered the dose very gradually.  This is making being at work very difficult.

Anyone have suggestions on how to combat steroid withdrawal?
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

tdlight

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Wow, what a difference a day makes.  I turned an abrupt corner yesterday afternoon and was feeling nearly normal by evening.  I'm still a little shaky today but feeling 80-90%.  You know that wonderful feeling when you're congested and suddenly your sinuses clear and you can breath?  It's kind of like that.

 :D :D :D
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

tdlight

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It's been about two weeks since my treatment and I am happy to report I am doing well.  I thought for a time my tinnitus had worsened but I think it was really just the added focus I was placing on it.  I have been working out at the gym as I had prior to treatment and am back at work full time as well.  People keep asking if I feel any different.  I always tell them, "No, fortunately I don't!"  I hope this continues and I am looking forward to an unchanged MRI and audiogram in about 5 1/2 months!

 ;)
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

KaiJiaH

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thank you. I have been following your updates and feel very glad to see you are back to normal.
Left AN diagnosed 28 Jan 2014 - 11x6x7 mm
MRI 23 Apr 2014 - 9.4x6.5x5 mm
MRI 21 Jan 2015 - 14x7.2x6 mm
MRI 31 Jul 2015 – 15.2x8.1x7.3 mm
MRI 29 Jan 2016 – 16x10x8mm
Hearing and balance not impacted, not much symptoms, Planning CK treatment
Left thyroid cyst that is shrinking slightly

tdlight

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Thank you, Kai!

It's been one month since treatment and I am feeling no side effects.  It's getting easier all the time to forget about my little vacation to the Bay Area.  Unless something changes I will plan to report back in a couple months and again at my six month MRI. 

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

tdlight

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As promised, here is my 3 month post-CK report: 

Life continues more or less as before.  I do notice my tinnitus fluctuates but probably not anymore than before CK, it's hard to say since I am paying more attention to it (today I hardly notice it).  I have been somewhat fatigued the last four weeks approximately but I don't know that I can attribute that to the treatment.  It's more likely stress caused by a recent death in the family and having our adult son living at home again (I REALLY enjoyed having an empty nest for a while). 

I did get an interesting call recently from the local Kaiser genetics group.  Apparently my AN tripped some sort of flag for them to reevaluate me for gene mutations that might cause cancer (I am a prostate cancer survivor and I have a lot of family history of cancer), so they will be doing a panel of tests for 24 gene mutations related to breast, prostate, ovarian, stomach, colon, and a bunch of other cancers.  I had spoken to the group once before, so I'm not sure how much of a factor the AN was in their wanting to test vs. the availability of this new panel of tests that maybe fit my history.  To my knowledge there is no correlation between AN and cancer.

Anyway... 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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Thanks for keeping us posted !! - so glad to hear that you are doing well !!
Yes I agree that stress exacerbates symptoms or at least the perception of them; on the other hand even with minimal stress, the fatigue after CK is very real, that for me got better after about 6-7 months.

...to continued good health...
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Thank you, Stella.  When did the fatigue start for you; was it immediate or delayed?  I'm starting to wonder if it is CK related, seems like more than not sleeping 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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Hi Terry....For the first 2 to 3 months i was mostly ok. After that the next few months I felt much more fatigued;  headaches ; and a bit wonky on my feet. I also had some symptoms of nausea and strong headaches likely  due to the hydrocephalus that developed. I am feeling much better these days and in a weird way looking forward to the 1 year MRI next month. Taking things more slowly and giving the body time to revover really helped ; yes getting good sleep and managing stress is really important too..
...take good care
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Thanks again, Stella.  That all sounds kind of like what I'm experiencing, including random mild headaches that kind of come and go.    ???  More sleep, less yard work!   :D

- 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, Yes!! sleep is exactly what is needed for your rest and recovery (R&R), especially after the impact of CK to your body... get as much as you can ... yard work can wait... (except it can be good exercise too - but only if you're up to it -- it took me till now (almost 12 months post CK )- to walk to work- about 15min, without losing my breath...) All in all i remember Dr Chang said 2 or even 3 years to get through the symptoms that may come up.  Now is the time to put yourself first :) and get all the R&R you can.

..here's to a smooth recovery...
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

tdlight

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Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
« Reply #26 on: September 22, 2016, 09:36:57 am »
I received my six month follow-up MRI report (phone call) from Stanford yesterday and all I got was a thudding, “the tumor is stable.”  Whaaat, that’s it?  Where’s the death, destruction, tumor lying in a ditch report I was hoping for?  I pressed her, the nurse, a little more and said that I thought I had seen some shadowing at the center of the tumor not visible in the initial MRI; was that just a difference in resolution of the MRIs?  She said no, that is a good sign, a sign the tumor is likely dying.  Phew!  That is what I wanted to hear.  I had prepared myself for a report indicating no change at all since Dr Chang had told me with smaller tumors there tends to be slower, less visible reaction to the treatments.  That makes sense I suppose, less over all radiation (my three sessions were only 16 minutes long) would have less of an immediate effect.  So to hear the MRI in fact indicated necrosis was a huge boost as you can imagine.

Apparently Dr Chang had noted the necrosis but they are instructed to only report “the tumor is stable.”  I’m not sure why; possibly they don’t want people getting over confident and skipping the next MRI?  I was so happy to hear actual confirmation of what I thought I had seen in the MRI image that I completely forgot about the other question I had intended to ask.  The MRI report from the local Dr noted the tumor size as 4x5x5 mm compared to the initial reading of 5x3x4 mm (I know, it’s a puny little thing compared to some, but I’ll take it).  Was the size difference in fact swelling or just a difference in interpretation?  Seeing how they measure these things I can imagine lots of natural variation from one person to the next, and a millimeter is not much.  I called back this morning and was told by the nurse that at treatment Dr Chang had measured it at 6x4x4 and at the follow-up he measured at 6x4x5.  The nurse also said they allow 2 mm (not sure if she meant +/- 2, or +/- 1) for interpretation variation, so in fact he did not note an increase in size.  Whoo-hoo!  I assume the order of the dimensions (height x depth x width) is also open to interpretation which might account for the difference in the position of the larger dimension (I’m really getting in to the weeds now…).

My six month audiogram showed no change in hearing, which surprised me a little since I thought I had noticed a drop off.  I also think my tinnitus has subsided some.  The spells of mild fatigue mentioned above seem to be better and less frequent.  I do notice an occasional issue with balance still but not any worse than before treatment.  The same day I had my six month audiogram and MRI I picked up my new hearing aids (Signia Pure Primax).  I am still getting used to them but have been enjoying hearing things I have not heard in a while.  To me my hearing was perfectly serviceable (my wife might disagree) so I did debate whether they were really necessary.  The two deciding factors were; 1. Good insurance that covered 90% of the cost (they are damn expensive), and 2. The fact that most everyone has said I can expect my hearing to get worse after radiation treatment; it might take a few years but it will likely deteriorate.  If it had not been for the insurance coverage, which could go away next year, I probably would have waited.     
 
So overall,… feeling pretty damn good and very fortunate to have caught this early and to have had access to the fine treatment at Stanford.  At this point I have absolutely no regrets about my decision to go with Cyberknife treatment and welcome any questions regarding my experience.  It is my sincere hope these posts, in some small way, might help others out there struggling with the very difficult decision of which treatment to choose; the process is not easy and can, at times, be maddeningly frustrating.  Hang in there.

I will plan to report again in six months unless something changes, and once again,… Don’t think twice, it’s alright. 
« Last Edit: October 28, 2016, 09:40:49 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

tdlight

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One year follow-up MRI and audiogram are in the books, and I am happy to report Dr Chang noted what appeared to be some slight shrinkage of the tumor (the MRI report from the facility doing the MRI noted the same).  No specific dimensions were reported.  The information was relayed the same way as before; one of Dr Chang's nurses(?) called and gave me the limited information she had.  Dr Chang would like me to have another follow-up MRI and audiogram in one year (two years post treatment).

My audiogram did show some additional hearing loss in the affected side.  At 2000 hertz I was downgraded from mild to moderate hearing loss.  It was enough the audiologist wanted to have me back in six months for a follow-up, and she also wanted me to come in to have the hearing aids reprogrammed to account for it. 

I continue to notice some mild dizziness, particularly in darkened rooms or when my eyes are closed, but nothing beyond what I had experienced before.  I do occasionally notice a kind of "fullness" (wonkiness?) or light pressure in my head, kind of like having a head cold.  I'm not sure if this is related to treatment and it could very well be something I have always experienced but never really noted before.

So, one year down and feeling good! 

Don’t think twice, it’s alright.
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

lilith

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Well done! Keep going!

Lilith
33mmx19mm AN (Diagnosis 5.05.2016)
Radiosurgery in Mexico City: 25.05.2016
Pre and post-radiosurgery: little bit of imbalance, mild hearing-loss, wonky head.

SP

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Excellent news... thanks for sharing  ;D
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)