Author Topic: FSR via Novalis - Post-Treatment Update - Issues/Steroids  (Read 22370 times)

Lizard

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Re: FSR via Novalis - Update - Treatment Finished!
« Reply #30 on: August 13, 2010, 08:26:20 am »
Cyndi,
Thank you for the update, your symptoms do seem pretty normal, but yes it impairs your everyday tasks.  Try not to push yourself too much and remember to listen to your body.  When it says slow down, try to rest.  I remember how tough it was to sit at a computer after my surgery so I feel for you, but you are quite fortunate that your job allows remote work as well as flexible time and disability.  I worked from home just as you are starting at about 8 weeks post op and went back into to work at about twelve weeks as tolerated.  It wasn't until almost 20 weeks out that I was able to work a full 8 hours and even that was pushing it, because I felt so foggy.

Hang in there and stay positive, I think keeping an open line of communication with your boss is a great idea, perhaps you can be reassigned to other projects.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

C Bourne

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Re: FSR via Novalis - Post-Treatment Update
« Reply #31 on: October 14, 2010, 05:05:46 pm »
Hello all,

Just thought I'd update since I had my 3 month post-radiation follow up appt 2 weeks ago.  Was fairly uneventful.  Met with the Radiation Oncologist (Dr. Nordal) and ARC Nurse (Rhonda Manthey).  He did some interesting tests to see if I had any facial nerve impairment (I don't, which is good) - lightly touching both cheeks with a cotton ball, tooth pick, etc.  Also did some small hearing tests (the finger rubbing thing) - I have slightly decreased hearing since my radiation treatment.  I would guess I am now at around 70% (I was close to 75% before).  He said it is still early and I may get some back over time - I'm just glad I still have hearing at all (one of the reasons I went radiation over surgery)!  Other than that they just said to let them know if anything weird happens, and that I may experience normal AN-related symptoms (dizziness, headaches, tinnitus) over the next 6-9 months as the tumor stabilizes.  Booking me in for my 6 month MRI sometime in January.

I am doing fairly well - back to work full time now.  Still experiencing some fatigue/headaches/increased tinnitus, mostly when I'm stressed or already tired.  I try to take it easy, but that is becoming difficult at work with all the projects trying to wrap up before year end, and me having more work than I know what to do with.  It's interesting, especially with radiation (since there is no real visible reminder that I had it, except my tattoo), that when you tell people (boss, coworkers) that you're back full time, they assume everything just returns to normal and that you can now return to being totally overworked.  Guess I will just have to put my foot down.  We'll see what happens.

Some good news is that I finally felt recovered enough to get back on the track with my motorcycle!  It has been over a year since I was able to do track (mostly because of the balance issues and headaches), and I was able to get back to it finally this past weekend.  It felt great and I had so much fun!  Unfortunately that is the last time for this year (end of season due to weather), so I will just have to wait until next year for more!

Hope you are all doing well and enjoying fall!

-Cyndi-
Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.

free2be

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Re: FSR via Novalis - Post-Treatment Update
« Reply #32 on: October 14, 2010, 08:03:43 pm »
Cyndi,

Glad to hear from you and get your update. Sure glad to hear things are going fairly well for you. Sounds like work may be a bit much and you might need to take a stand on how much you can handle. I'm doing better than I thought I might be 2 weeks after CK, but I can't imagine working fulltime right now...kind of wondering about that; definitely feeling the fatigue after just being out of bed 3 hours or so.

I'm glad you aren't having any facial issues. I'm feeling some numbness and so wondering about that, but suspect it is only temporary...praying that's the case.

Sounds like it was great getting back on your bike. That must feel like a great things after it's been so long. Congrats on that.

Keep us informed!

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

C Bourne

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Re: FSR via Novalis - Post-Treatment Update
« Reply #33 on: January 17, 2011, 08:30:15 pm »
Hello all!  Time for another update...

I just had my 6 month post-treatment MRI yesterday, with what ended up being surprisingly good timing, as I had an onset of treatment-related symptoms last week.  I had taken an extended Christmas vacation from work, and started back Monday Jan 10.  That night I started having ongoing dizziness, and by Tuesday morning I had ongoing waves of vertigo any time I moved my head, along with a mild headache and some increased tinnitus.  I had had a similar episode 3 months prior, and it cleared up itself after about 3 days, unassisted (except by me taking it easy).  At that time the doctor said he expected it was related to post-treatment swelling of the tumor (expected), and that they could prescribe steroids to tame the swelling and try to control the symptoms, but that the steroids could have some nasty side effects, and that it would be best for me to wait 3-4 days to see if things worked themselves out.  Luckily they did, so I had never had to take the steroids at that point.  However, this time the vertigo got worse - by Thursday (day 3) I had it constantly, even without moving, and it was starting to make me nauseous.  The doc prescribed me some dexamethasone (yes, the decacrap), but said I might want to wait one more day to see if things improved before starting the steroids.  So I went 4 days without the steroids, and upon waking the 5th day (Saturday) and not having any improvement, I decided to start them.  

He's prescribed me 2mg 2x day for 3 weeks - if the side effects are too much, I'm supposed to go down to 2mg 1x day, but if it's not doing anything, I can up to 2mg 3x day.  They said it might take a few days to 'kick in'.  So now I'm on day 7 of the symptoms, and day 3 of the dex, and I don't know if it's doing anything.  I only had 2 days of being constantly dizzy (even without moving), and have been back to waves of vertigo, mostly when moving. However, this happened the first day I started the dex, so I don't know if it can be attributed to the steroids. The interesting thing is I'm sort of getting used to it - I don't think it's any better, I'm just dealing with it as-is.

One big problem is I can't drive (and I live on an acreage, so no cabs or walking) - the dizziness/vertigo is still bad enough that I sometimes run into the walls, and can fall down if I turn around quickly. However my spouse had been driving me to town every few days for groceries and errands, and my job can be done from home.  However, the other problem is I can't be on the computer for more than about 15 mins at a time, or I get a big headache, more dizzy, and start getting nauseous.  My work is all done on the computer - so this is a big problem - essentially I can't work (it took me an hour just to write this post cuz I keep having to take breaks).  I have had to contact occupational health and they will have to reopen my short term disability case (which may have other issues, which I will find out about tomorrow).

So now my biggest concern is, since I have had 3 days of dex with what I don't think is any real improvement, do I up the dosage of dex in the hopes that it 'cures' my dizziness enough that I can work from home again (or even drive), and take the chances on the side-effects from the steriods?  Can anyone comment on their experience with dex (I have read several posts on here about the nasty side effects, and some who haven't had them)?  How long did it take to kick in, and what dosage was that at? I think this is my next step - if I don't see any significant improvement tomorrow, I will up the dosage (as per the doc's initial  recommendation).  According to occupational health, I can take off as long as I need, but I have to be following the doc's orders, which technically means I have to up the dex in order to be covered for my days off.  Thoughts/comments?

My follow up meeting with the doc about the MRI is on Jan 26, so they will be able to see if there was any significant swelling on the MRI.

-Cyndi-
« Last Edit: January 18, 2011, 07:24:40 am by tomcatt »
Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.

Anomar11

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Re: FSR via Novalis - Post-Treatment Update
« Reply #34 on: January 17, 2011, 10:08:42 pm »
Cyndi,

I had bad vertigo 4 months after cyberknife.  I was put on a decadron taper of 4 days each 12-8-4 mgs then to stop.  I think doctors think differently on how to approach this.  The vertigo did abate, but I did have a hard time with the higher dose, opposite of what many report.  I felt "zombie like", can't even explain it, blood pressure soared.  After this episode, the wonky head persisted in varying degrees, but liveable.  I proceeded with life carefully, for quite sometime after.  While the side effects can be bothersome, vertigo is hard to live with.   I had another bout at around 16 to 17 months post treatment and treated it with meclizine (antivert) and valium.  Self prescribing I know isn't recommended, but I knew my tolerance and after about 8 hours it did go away.  Valium is an old-time remedy for vertigo.  I guess I would talk with your doctor about either increasing steroid for a few days or ask about valium since what you're doing now isn't working.   I wish you the best and hope this resolves soon.  Take care.

Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

C Bourne

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Re: FSR via Novalis - Post-Treatment Update - Issues/Steroids
« Reply #35 on: January 20, 2011, 11:30:03 am »
Mona, thanks for your response - it's comforting to know that I don't seem to be experiencing anything truly weird! 

I did increase the dex dose on Tuesday to 2mg 3x/day as advised by the doc - he hadn't seen anything abnormal on my MRI report but he was going to take another closer look just to make sure.  He said he didn't want me to go to an even higher dose on the steroids yet, but would rather I wait a bit to see if it resolved at the 6mg/day level (which I am okay with). I had no real change Tuesday or Wednesday, but this morning I woke up and for the first time in 10 days did not immediately have vertigo!  It has started to set in now that the day's progressing, but it does seem somewhat lessened, and I'm taking this as a good sign.  I don't know if my AN has stopped swelling on its own, my brain has worked out the re-balancing, or the steroids are actually working - likely a bit of all three.  Hopefully it continues to resolve itself - if not I will definitely bring up the potential use of valium with the doc at my appt next week.  I'm going to see if I can do some computer work this afternoon and see how that goes - hopefully I can start getting back to work sometime soon.

-Cyndi-
Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.

sunfish

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Re: FSR via Novalis - Post-Treatment Update - Issues/Steroids
« Reply #36 on: January 20, 2011, 12:42:54 pm »
Yikes!  I've been left continuously, mildly 'wonky headed' over the past 6 months.  I run into walls about a half a dozen times per day.  No real vertigo, but snatches of dizziness when I turn my head certain ways quickly.  Sounds like you're tolerating the decacrap fairly well.  I took a moderate dose of prednisone to try and save some hearing in November, but my blood pressure just can't handle it.  Hang in there, I think I've gradually stabilized over the past 3 months, although I'm not sure I'd go so far as to say I'm that much better.  I can do just about any activity, can still work and drive.  Can't ride my racing bike safely yet, which makes me unhappy!  Keep us posted.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

C Bourne

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Re: FSR via Novalis - Post-Treatment Update - Issues/Steroids
« Reply #37 on: January 21, 2011, 02:15:57 pm »
Sunfish - thanks for the reply!  Sad/bad as it is, sometimes it is helpful to know that others have had similar problems.

I had no real vertigo this morning - just a bit of dizziness/cloudy head when I woke up.  I found that about an hour after I took my first dose of dex, the dizziness set in again.  The literature for dex does mention that it can cause dizziness (great!), so now it might be the drugs actually making it worse - who knows.  I'm thinking I might taper back down to my original dose (4mg/day instead of the 6 now), and see if that helps.  If I can get the dizziness and headaches to go away I can at least drive and work again (even part time from home).

Here's to hoping things settle down over the weekend!

-Cyndi-
Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.

Shan1014

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Re: FSR via Novalis - Post-Treatment Update - Issues/Steroids
« Reply #38 on: January 23, 2011, 09:13:40 pm »
Hello,

I just thought I would touch base with you.  It seems I am about 2 months behind you on FSR with Novalis.  I had 5 days from Sept. 27-Oct.2 .  It has been interesting and has kept me wondering what I am in for each week.  This past week I had stints of facial paralysis/spasms and twitching on the AN side.  After calling my doc we both decided to wait it out before heading back to the steroids.  I had them during radiation, then again for 2 short stints of 5 days on and 4 days of tapering.  Both times they instantly made me feel a hundred percent better.... but coming off of them the last time was not fun.  Hence, the reason the doctor wanted to wait if out this time to see if things improve on their own.  During radiation and the 1st time back on them, I was on the dexamethassone (spelling?) steriods but the last time he put me on prednisone which I had a really hard time coming off of a few weeks ago.

My AN side of my face is numb, I have quite a but of tinnitis although I have retained most of my hearing, and my balance/vertigo is still an issue.

If you are ever in need of someone to speak to, it seems we are in the same boat somewhat.  Please feel free to email me.
Good luck to you, I hope things go well.
Shannon

** moderator edit (joef) - please dont post email address
« Last Edit: January 24, 2011, 06:32:03 am by Joef »
4.1cm AN 85% de-bulked on 3/09/10
Dr. Willis & Dr. Macias- Phoenix Banner Hospital
July 2010 MRI shows fast re-growth
(FSR) Stereotactic Radiation Novalis Tx 9/27/10 5 days
Hearing loss and slight Bells Palsy Left side
Experiencing balance, facial numbness, double vision, headaches, & fatigue

C Bourne

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Re: FSR via Novalis - Post-Treatment Update - Issues/Steroids
« Reply #39 on: January 27, 2011, 07:59:19 am »
Thanks for sharing Shannon! I hope your symptoms are subsiding or at least under control for now.  Luckily I have never had any facial numbness or issues with the facial nerve other than mild twitching.  My biggest symptoms have been the vertigo, hearing loss, and tinnitus.

I had my regularly scheduled 6-month MRI follow up appt yesterday.  Doc says there is no growth showing on the MRI at all, so he thinks my current symptoms are just a result of some 'internal' swelling or that the AN is temporarily becoming more dense around the balance/hearing nerves, and that it should subside.  He thinks that the steroids are doing their job and controlling it.  The first 5 days this set in I had fairly constant vertigo and some shooting pain in/around my ear canal, which then transitioned into increased/different tones of tinnitus for 2 days, and then into about 4 days of noticeable hearing loss, while the vertigo gradually improved. Now I have dizzy 'spells' if I roll over in bed, or turn my head fast, or bend over, but that's much more manageable.  My worry now is the potential for more hearing loss - something I would like to avoid as much as possible.  The doc thinks that I should stay on the steroids at the 'elevated' rate for about 5 more days, then 2 weeks of tapering.  I'm not looking forward to it, but I think I'd rather deal with the dex effects and try to retain hearing if I can.  They've got me on the books for another MRI in 6 months, and also an audiogram - I want to see how much hearing I have actually lost since treatment and we hope it should have stabilized by then (as much as it will anyways).

The effects of the dex are annoying - headaches, insomnia, stomach issues, 'fuzzy head'.  I've found it very difficult to concentrate on things, and I just generally feel crappy most of the time.  For the first week I couldn't drive or really do much physical activity (due to the vertigo) so I was stuck at home as well, and that really seemed to just put a damper on things.  In the last few days I've been able to drive/get out, do some yoga, and have been feeling a bit better about things in general.  It's hard to anticipate and account for the emotional/mental toll this stuff takes.  I have to remind myself to take it easy and just let things happen, go with it, and not get so stressed out, because it just makes it worse.  Right now I'm actually looking forward to getting back to work - I've felt a real lack of accomplishing anything for the past month, and it's starting to wear me down. Now that I'm physically feeling somewhat better, I think it's time to give myself a kick in the butt and get back into life!

-Cyndi-
Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.

C Bourne

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Re: FSR via Novalis - Post-Treatment Update - Issues
« Reply #40 on: February 15, 2011, 09:59:10 am »
Just thought I'd provide another update.... and realized that I should really be doing this in the Post-Treatment forum, so I will start a post there, and put links in it to this and vice-versa.

Like to my Pot-Treatment thread:  http://www.anausa.org/smf/index.php?topic=14767.0

-Cyndi-

Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.