FSR via Novalis - Post-Treatment Update - Issues/Steroids

[C Bourne]

Hello all, I have been lurking on here since I was diagnosed with an AN (about 8 months ago), and have found it a tremendous source of information, and a great community of people!  As of today I have finally made my decision on treatment, and felt that I wanted to share some of my experience in the hopes that someone else may find something I have to say as useful as I have found all of your contributions to be.

My story: Jun/07 I experienced sudden hearing loss in the left ear while at work one morning.  I all of a sudden noticed that when I answered the phone I couldn't really hear the person on the other end.  I couldn't think of anything that might have triggered this.  I immediately when to the Occupational Health office at work - they did a hearing test and confirmed that I had a 60% hearing loss in my left ear (at certain frequencies).  I had been suffering mild hayfever symptoms that week, and they suggested that I may have fluid in my ear, and it would likely go away.  So I waited.  After about a month it had gotten 'better', but it still didn't seem 100%.  I went back to Occ. Health for another hearing test, and they confirmed my hearing was better than the original test, but definitely degraded from my last hearing test from 2 years ago.  They suggested following up with my Family Doctor.  Over the next two years I went back to her about 4 times - each time she suggested it was allergies/fluid, and that antihistamines or nasal sprays should make it go away.  I tried it all and nothing made a difference.  I starting having vertigo spells, and getting bad headaches, and noticed prolonged periods of tinnitus.  My Family Doctor refused to refer me to a specialist, and finally just said that since I had hearing problems I could get a hearing aid if I wanted, but that was about it.  I went back to Occ. Health at work and advised them - they were able to refer me to a specialist.

I met with what would turn out to be the first of many doctors (ENT) in April/09.  After logging my symptoms he mentioned that there was a remote chance I could have this brain-tumor thing, and that he wanted to send me for an MRI first to rule that out.  2 months later I had the MRI, and the day after I got a call saying they had a "cancellation" and wanted me to come in - I should have known....     I was diagnosed with a 14mm AN in June/09.  The ENT explained all of the treatment options to me, and due to the size of the tumor, the levels of my associated symptoms, and his recommendation, I opted for 'wait&watch' with a follow up in 6 months.

After this followed 6 months of researching and reading anything and everything about ANs - as I mentioned, this site has been a very valuable resource.  During that time my symptoms gradually worsened (tinnitus is constant, more hearing loss), and I had come to the decision that as of the next MRI, even if the AN hadn't grown, I wanted to 'do something' about it.  The 'watching and waiting' just wasn't working for me.  In Dec/09 I had my follow up MRI - there was some growth (3mm), and after discussions with the ENT her referred me to a Neurosurgeon for consultation.  I met with the Neurosurgeon just before Christmas '09, and had a great discussion.  He explained both the surgery (I was a potential candidate for 2 of the 3 types), and the radiation (both single and FSR) options.  Based on the size and location of my tumor, and given my age and medical condition, he recommended radiation over surgery, but would do whichever I decided.  I asked him to refer me for a radiation consultation.  For the next two months I researched as much as I could on the radiation options.  Today, I had the consultation with the Radiation Oncologist and Nurse.  They explained everything about both the single and fractionated radiation treatments, and answered all of the questions I asked.  Nothing they told me was a surprise (I had done my research well!), and I felt very good about the discussion.  I also felt prepared and ready to make my final decision then and there, so I did!

Due to the fact that I still retain serviceable hearing in my affected ear, and based on the recommendations of both the Neurosurgeon and the Radiation Oncologist, I have opted for FSR by Novalis.  I will have 25 treatments over a 5-6 week period. The dose for the entire treatment will be 50 GY.  According to the nurse, I should have the appointments for my planning MRI and CT, along with the creation of my facemask, sometime within the next 6-8 weeks, followed by 3-4 weeks for planning.  This means I should be able to start treatments in 3 months or so.  This puts me in the June/July timeframe, which will be nice - I plan to take the entire time off work (I am covered by our Short Term Disability program), and this will be a great time to be off as summer is my favorite time of year.  

One thing to note is that I am very claustrophobic, and have phobias related to being restrained or restricted in movement (the thought of a straight jacket scares the ever-living-crap out of me).  This has been a problem already with the MRI, and I had been given a fairly high dose of Attivan to deal with it (which seemed to work well - I don't remember most of that day!).  I got to go in and see the Novalis today, and that will be fine.  However, the whole "facemask/eyes closed" and "being clamped to a table 25 times" thing will be a problem.  After discussion they decided I should stick with the Attivan, and they will give me a script enough for the MRI, the CT, the making of the mask, and all of my treatments.  However, since Attivan can become habit-forming (but is apparently not a narcotic), I will try to use some relaxation techniques and meditation to overcome my restraint phobias, and see if I can wean myself off the Attivan once I start the daily procedures.  We'll see how it goes...

So I am glad to have come to the point of making the decision, and am ready to move on from here.  Now I just have to wait for the next appointment (the MRI)...  there seems to be a lot of waiting involved in this...  

FYI, if you're interested here's my info/stats:
Female, Age 32, no health issues
AN on left side
Live in Cochrane, Alberta, Canada
All Doctors/procedures at the Foothills Medical Centre in Calgary.
ENT:  Dr. Justin Chau
Neurosurgeon:  Dr. Yves Starreveld
Radiation Oncologist:  Dr. Robert Nordal
Radiation Nurse:  Rhonda Manthey (Alberta Radiosurgery Centre)

-Cyndi-

[lori67]

Hi Tomcatt and welcome to the forum!

It sounds like you really have done your homework and are very well informed.  That's great!  And I'm glad you were able to come to a treatment decision that you are comfortable with.  Sometimes that's the hardest part!

I'm sure the doctors are very used to treating people with claustrophobia, so I'm sure they have certain tricks of the trade that will help make you comfortable.  I'm sure by the last treatment, you'll be as cool as a cucumber!   

Good luck to you and keep us posted!

Lori

[Jim Scott]

Hello and welcome, Tomcatt ~

As we always note, we're sorry you've been diagnosed with an acoustic neuroma but glad that you've found the ANA website and the Discussion Forums.  I'm especially pleased to learn that you've been reading the posts here and found the information useful.  From the account you gave of your doctor consultations, your research has been rewarded and you've been able to make the all-important treatment decision with confidence, which is the only way to approach it, in my opinion.  At this point, you seem to be all set for your treatments and almost looking forward to them.

As an AN patient that underwent the FSR treatment (26 sessions over 5 weeks) I have to mention that your claustrophobia will be an issue because the process involves wearing a tight plastic 'facemask' (molded to your face for a perfect fit) during each 40-minute procedure.  You'll also be strapped onto a metal table that moves.  I didn't have a problem with these but as Lori mentioned, I'm certain the technicians and nurses have medications and perhaps other methods of alleviating your claustrophobic reactions, so I would definitely alert the FSR staff to your claustrophobia but I wouldn't be overly fearful of the FSR treatments.

In my experience (autumn, 2006) the FSR sessions were uneventful, totally painless and I did not suffer any effects other than a tumor that showed necrosis (cell death) within a year.  As an example of the relatively benign nature of the FSR sessions, I drove myself to and from each treatment session, a distance of over 60 miles, round trip.  This was happening 90 days after my AN 'debulking' surgery (June, 2006) which went very well with no real complications.  I trust your FSR treatments will be uneventful yet effective in destroying your ANs DNA.

Jim   

[C Bourne]

Lori, Jim, thanks for your responses!

I should clarify that I had an extended discussion with the Radiation Oncologist, Nurse, and 2 Technicians today, specifically about my claustrophobia and restraint issues.  They took me into the room with the Novalis and showed me exactly how it works.  I don't believe that part of it will be a problem because it's all open.  They also showed me the head restraint and how it works, explained in detail how the mask is made (this one is kind of a white mesh), and let me handle a test mask that they had (hard but flexible, kinda like a hockey mask).  That will definitely be a problem.  They had put a head restraint on me for the MRI as well, so I have some experience with that (although I had my eyes open - they had this angled mirror thing which let me see outside the machine), and knew that a high dose of Attivan worked to alleviate my anxiety (ie: send me to la-la land).  We discussed and they recommended I use the Attivan for everything - I will take it for both my MRI and CT, as well as for the creation of the mask.  I will keep using it for the treatment sessions (I will have a driver with me daily), unless I decide I can do it without.  The process of creating of the mask will definitely help me to determine how bad this will be for me.  I think the biggest problem will be the fact that my eyes are force-closed shut by the mask, and I can't open them even if I want to...  

I'm going to look into some relaxation/meditation techniques to practice before that (I've done some in my yoga classes), in the hopes that I can eventually wean myself off using the Attivan in the treatment sessions, but we'll see how it goes.  I'd rather not be drugged for an entire 6 weeks, but am not sure if I can do it otherwise.  Won't know till I start treatment!

I am looking forward to frying this thing and getting on with my life...  

-Cyndi-

[C Bourne]

Update:

My planning MRI is scheduled for Apr. 19, with my CT and facemask creation Apr. 20.  I have been told I should start treatment 3-4 weeks after that (as soon as the plan is ready) so about mid-May.  Assuming I will get an updated schedule after the tests.

I am both excited for and dreading the treatments - excited to get it done and hopefully stop the progression of my symptoms, but dreading the whole mask thing.  I'm actually dreading the creating of the mask the most, because that will take longer than the actual treatments with the mask on, and I can't get them to take it off halfway through because it's drying.  Oh well, nothing much to be done about it I guess.  At least after the mask is done I will know what to expect for the treaments (wrt wearing the mask).

-Cyndi-

[Jim Scott]

Cyndi ~

Thanks for the update on your FSR treatments.  As you now know, the face mask creation can be a bit tedious and takes awhile.  I had to have 2 sessions because they didn't get it right the first time.  I hope your face mask creation session will be easier.  As you've probably been told, the back of the mask is bolted to the table so you cannot move your head.  I assume this is standard procedure.  It was explained to me that because the radiation beams have to be precise, any head movement could be problematic and mess up the trajectory of the beams, which have been carefully calibrated to hit the tumor.  In my case, my neurosurgeon (I had a partial resection prior to the FSR treatments) worked closely with a radiation oncologist to 'map' the radiation.  It took them the better part of a day but was worth it because the FSR sessions were pain-free and more importantly, effective, as I trust yours will be.

Although I understand your anxiety regarding the mask creation session, I think you'll be surprised at how you adjust to something you know is both inevitable and, ultimately, beneficial.  Besides, you'll have the Ativan to help get you through it.   Keep us informed as you find out your treatment dates.  Thanks.     

Jim

[Larry]

Cindi,

Congrats on your decision for FSR.

You may want to check with the crew as to the GY dose. By memory, my TOTAL GY dose was around 23 odd which was spread over 5 days. 25 treatments of 50 GY seems to be incorrect.

The level of GY,the skill of the tecnicians at the machine and the up to dateness of the software in the machine are the three most critical things you need to research and be comfortable with.

Please do some research on the GY levels 

cheers

Laz

[sgerrard]

I'm pretty sure that 25 days with a total dose of 50 Gy for the whole period is about the norm for FSR. There is some math involved, whereby the total does goes up when you spread it out over more treatment days. Something something squared...

Best wishes, Cyndi!

Steve

[ppearl214]

Best wishes cindi and know we're here to cheer you on! 

Phyl

[C Bourne]

Thanks all!

I'm pretty sure that 25 days with a total dose of 50 Gy for the whole period is about the norm for FSR.

Sorry, you're correct - I meant 50 total (I'll amend my original post).  And yes, I was told the total for FSR is higher than the total for Single-shot (they explained the whole math thing, I just don't remember the specifics).

Although I understand your anxiety regarding the mask creation session, I think you'll be surprised at how you adjust to something you know is both inevitable and, ultimately, beneficial.  Besides, you'll have the Ativan to help get you through it.

Jim, I think you're right on the mark there.  Having had 2 MRI's already, I find myself not particularly dreading the next one.  I will have the Ativan, I know what to expect, I know it's necessary, and I know I can get through it, so it's not so bad as the first time.  I think the thing with the mask is that I haven't done it yet, and don't know what to expect (ie: my reactions), so that makes it more terrifying in my mind.  I did know that I would have to be bolted to the table (both for the creation and each session), and both the immobility and the mask covering my eyes is what really freaks me out (I get anxious just thinking about it). Unlike the MRI, I can't ask them to stop partway through.   

Once the mask creation is over with, I'm sure I'll be much more prepared to wear it each day.  I will have Ativan for the daily sessions as well, but I'm hoping to wean myself off it - I don't really like the idea of being drugged daily for 6 weeks...  I'm going to try to prepare for the mask making with some relaxation and meditation practices - hopefully that will help.

-Cyndi-

[C Bourne]

Hello all - another update...

Just went for my planning MRI (Monday) and CT, as well as the creation of my facemask (both Tuesday).  I took the two days of the tests and today off work - sort of a mini vacation.  I knew I'd be drugged up (Ativan) for the first 2 days, and just wanted a 'recovery/me' day in there too... 

This time I took 2mg Ativan for the MRI.  They told me it would be a bit different than the last 2 - it would not be as many 'tests/passes', but they would be more detailed.  This time they did 2 (last time I think there was 4 or 5).  I asked for the mirrored/glasses thing so I can see 'out' of the MRI machine, to help with the claustrophobia.  The Ativan made it much better this time, along with the fact that it didn't take as long, but there were still a couple of times when I started getting anxious, and almost asked to come out.  I talked myself down though. 

I'm going to explain the facemask part in detail, as much as I can remember (the Ativan makes things a bit fuzzy) - hopefully this might give other people who are concerned about this part a bit more information, as I had trouble finding details before I went.  I knew the facemask was going to be an issue for me, and based on the previous day's experience with the MRI, I decided to go with 3mg of Ativan for the second day.  The actual making of the facemask ended up not being all that bad.  It was quite warm (almost hot), and kind of felt like when you get a facial, or make a paper mache mask.  First they did the piece for the back of my head.  I had to pull my long hair up into a 'Pebbles Flintstone' ponytail, and just lay down on the bed for the Novalis machine.  It was just one big piece of mesh, and they fit it around my ears. That took 5 mins or so. The top was done in 3 pieces.  They put vaseline on my eyebrows and above my lip, so that the pieces of the mask would not stick.  First they layed a piece that looked like a wide strip on top and a narrow strip on the bottom, only connected at the ends.  The wide part went across my forehead, and the narrow part went across my upper lip, under my nose.  These pieces were solid (no holes/not mesh),  The next piece was sort of a big triangle that covered most of my nose (solid too) - this joined the upper and lower pieces.  The final piece was a big piece of mesh (looks kind like expanded metal, or the 'jackets' that asian pears/apple pears come in) that they put over everything - it covered my whole face from the forehead piece, down to the top of my lip.  Mouth was completely open, but eyes and nose were covered with mesh.  That was when I though I might freak out, but it wasn't too bad.  Breathing was totally fine - my mouth was open, and I couldn't even tell there was mesh over my nose.  I could still open my eyes (well flutter them a bit), and the mask is not pressed down over your eyes, it just covers them.  So I could sort of open them, and sort of see things through the mesh, which was the biggest thing. That helped my chill out a bit. Then they added the clamps - I don't even remember that part. Creating the top part took about 7-8 min.  Then they covered my whole face with frozen towels to set the mask - this only took a couple of minutes.  That whole process went much better than I expected - the only times I even thought about being anxious were when the towels were covering me, and it was dark and I couldn't see.  But that was only for a few minutes and they talked me through it.

After the mask was set, they took it off, and showed it to me.  It looks kinda like a white goalie mask.  I hope they let me keep it when the treatments are done - it would be fun to freak people out with...    I asked them how many of these masks they make - they said about 1 a week - that's not just for AN, but everyone who needs one, so mostly cancer.  I'm hoping to get a picture of the mask at some point during my treatment - if I do I'll post it up.  Mine doesn't seem to look quite like all of the pics of masks I can find on the internet, but this one is close: http://farm2.static.flickr.com/1030/844406388_788d0ed73b.jpg.

The next part is a bit blurry - either they took me to the CT room first, or they told me they had to do some measurements while still in the Novalis room - I can't remember which.  Anything, next thing I remember, I had the mask back on, bolted down, and they started putting a bit glass jar-looking thing over my head.  That was when I started freaking out (I'm actually surprised it took me that long!).  I asked if I could come out.  They unbolted me a took off the mask - I mostly just wanted to know what was going on, so they showed me the big glass jar - it has all these holes/tubes all over it that they use to stick measuring devices in to know where my head is in the space (or something like that). I asked them a few questions about it, to calm myself down, and asked them if they could just please talk to me and tell me what they are doing while they do it, because that helps.  They were great about it.  I got bolted down again, glass jar on, poked in the head, glass jar off.  This is where it gets fuzzy again - either I was already in the CT room, or they then took me to the CT room.  Then they put a cage on my head (like the one for the MRI), over top of the mask.  That was a bit freaky too, but I talked to them, and the CT was quick (maybe 10 mins), and not at all claustrophobic, so that was fine.

That's it, all done!  I talked to the RN that was helping me with everything, and the head tech who made my mask, and asked if I could get a more specific date on when treatment would start, since I have to make some arrangements at work.  They asked if I was in a big hurry, or if I had a particular date in mind.  I asked if I could start the Tuesday after the May Long Weekend (that would be May 25 - 5 weeks from now) - that would be the best timing for me both work and personal-wise, and give me a nice relaxing long weekend before I start.  They said that shouldn't be a problem at all (lots of lead time), and that they would talk to the lady assigned to my case.  I will follow up with her this week to confirm.

So... one more step down the path.  I've decided I really don't like being drugged up for several days.  The Ativan makes me tired and well 'meh' (which is the point), but it makes me that way for several hours, if not the whole day, and it also seems to have a bit of an amnesic effect, and I have trouble remembering things I did, even hours after I took it.  All of which I don't really like.  But I'm a big wuss, and can't take the mask/confinement thing.  I noticed that things were better when I had people talking to me while I was in the mask, and kept fluttering my eyes around - gave me something to focus on and keep my thoughts away from the mask.  Not sure if this can happen during the treatment, but something I will ask about.  I'm also hoping that over time I will just 'get used' to it, and can scale down (or even eliminate) the Ativan - we'll see.  Another question I'll have to ask is how long I will be in the mask for each treatment - the time will definitely be a factor. 

Anyways, that's all for now.  I'll update more when I get exact dates.  Thanks for your continued support!

-Cyndi-

[sunfish]

Hi!  I just finished CK, and it sounds like your mask was much, much more involved.  My coworker's brother is a radiation oncologist, and he said that the multi-session FSR Novalis thing is a great way to go.

I took plenty ativan my week of treatment too, although I don't have much claustrophobia.  One thing I would change would be to have had someone stay with me after I went home, not just drive me home and drop me off.  I kind of minimized how "drugged up" I was on the ativan, don't remember hardly anything about that week, and think I should have had a more responsible person around to double check my aftercare/followup recommendations, make sure I was taking meds right, call doctors with some of my concerns earlier, etc.

Good luck! We'll be thinking about you!

[Jim Scott]

Hi, Cyndi ~

Thanks for the update.  You offered a very clear description of the FSR 'masking' process and it brought back a few memories of my experience that, frankly, I hadn't thought about in years. 

I'm sure many AN patients considering FSR will benefit from your detailed explanation of the MRI and CT scanning procedures and the making of the FSR mask.  I was fortunate to not require any drugs to get through the MRI, CT and FSR treatments but I've always thought that had I needed any, I wouldn't hesitate to ask for them.  Why suffer? 

As for the length of each FSR treatment, that is a pertinent question - for your doctor.  Mine were approximately 40 minutes each, but I'm sure that varies with the size of the AN and the doctor's preferences. My radiation oncologist said that I received the lowest amount of targeted radiation possible that would still destroy the tumor's DNA.   Apparently, it was successful, as I'm sure your FSR treatments will be. 

Jim 

[C Bourne]

Just got the call from the radiation department at the Tom Baker Cancer Centre in Foothills Hospital - the plan is done and I will officially start treatment on Tuesday May 25!  This is the date I had planned for and asked them to work with, and they delivered, so I am very happy! 

Also, since Monday is a holiday here, I get a long weekend off before I start.  We are leaving to go camping after work today - I am looking forward to a relaxing weekend before embarking on the next step of this journey.  I will try to keep in touch with updates throughout the treatment.

-Cyndi-

[C Bourne]

Hey all, just a quick update. 

I have started treatments - today was day 2.  Good news is they're not as bad as I had expected, and am able to start toning down the Lorazapam/Ativan.  I am only strapped down to the table in the mask for about 20 mins now (first day was more like 35-40 because they had to do a bunch of measuring) - strap me in, line me up, do some xrays, then 5 'arcs' with the novalis machine.  My bed moves around a bit between the arcs - it's kinda cool.  The fact that each of the arcs takes less than a minutes, and I'm doing a bunch of moving (well the table not me), I can flutter my eyes a bit in the msk, and see vague images on the ceiling, and there's people talking to me and telling me what's going on helps A LOT!!  I know I would be completely terrified otherwise.  I'm hoping to be able to eventually not need the Lorazapam, because I really hate the side effects.

So far I've been feeling okay except for tiredness/fatigue, and my neck's a bit sore from being fixed into the mask.  Also, I normally see a physiotherapist for deep tissue massages of shoulders and neck/head due to my line of work (computers) and have been going regularly twice a month for several years.  However the nurse at ARC told me to hold off on it, because it can aggravate the tissue that is being affected by the radiation.  So, no nice massages for me for a while - instead I plan on making great use of my jet tub.  Since I've also decided to take the entire time off work, I have lowered my stress factor considerably, and that is helping immensely - I even sleep better!

I'm planning to attend the Calgary ANAC meeting this saturday, and hope to see some of you there.  Ciao for now!

-Cyndi-