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

[sunfish]

Glad to hear your treatment's under way, and it sounds like it's going well so far - especially since you were really apprehensive in your earlier posts.  Take care of yourself, and keep us updated!

[C Bourne]

Well it is hump day for me - 13th treatment (of 25) today so all downhill from here... 

I have learned a few things throughout my treatment sessions:

1. The mask as it was originally made was so close to my eyes that when I tried to open them I sort of could, but my eyelids and eyelashes would get caught in the mesh.  Also they had stuck masking tape over top of parts of the mask for marking locations, and parts of this were covering my eyes (and they didn't need to be) and making my eyelashes stick.  They brought in a medical physicist who 'bugged out' the eyes in my mask - basically he heated up certain parts and reformed them, without changing the structural integrity of the mask.  This has made things 10x better!!!  I can now see out the mask (through the mesh), and can see what's going on, and the lovely printed tiles on the ceiling.  With my claustrophobia, this was a big issue, and this change has made a big improvement.  Small change = big rewards for me!! 

2. Timing of the Lorazepam - I am currently a 2mg/day - I take 1mg about 90 mins before my appt, and the other 1mg about 75 mins before. I have to leave my house 1 hour before to get to the appt in time.  I don't like taking it all at once as it hits me pretty hard - staggering it helps.   Most times this puts me during a meal (breakfast or lunch).  I either have to eat a small/med meal at least 2 hours before the session, and then take the drugs, or take the drugs and then eat a small/med meal quick after the drugs/before leaving for the session.  Once I wasn't paying attention and took the drugs while eating a large meal just before I left for the appt.  So the meal and drugs had about 1 hr to gestate.  By the time I was on the table, the drugs had NOT fully kicked in - they tried to put on the mask (which is usually no big deal), and I stood it for about 3 seconds.  I had to come out of it 3 times, with about 5-10 mins of long breathing and eyes closed stuff.  Finally I let them put it on, but could not open my eyes (I tried, and it freaked me out, so I shut them (this was before the changes to the mask)), and I had to have one of the techs talking to me constantly throughout the procedure just to keep me distracted.  About 15 mins after I left the hospital I felt the rest of the Lorazepam kick in.  Bad timing.  So now I am very specific with the timing of the Lorazepam and my food.  The changes to my mask were just done on Tuesday - if all goes well this week I'm going to try lowering the Lorazepam dose next Monday - maybe try 1.5mg total.  I hate the side effects of the Lorazepam, but I hate the terror of the claustrophobia more. 

3. They have a CD player in the room with me and said I could bring in some discs if I wanted.  Normally I was just listening to the radio, and sometimes I would sing/hum along (my mask is open over my mouth).  So being the classical/sci-fi/fantasy nerd that I am (and one of the techs is too), I have compiled 'Mask Mixes' for each session based on a movie.  Today I had a mix from the Star Wars Original Trilogy ((including the main theme, Leia's Theme, Imperial March, etc.). While I was swirling around on the table today having the machines do their thing around me with the Imperial March (Darth Vader's Theme) playing, it felt very fitting.  I may decide to paint my mask black later...    Tomorrow is Star Wars Prequels, and then next week I will work on ones for Lord of the Rings, Pirates of the Caribbean, Star Trek, and Superheroes (Superman, SpiderMan, Batman).

So far the treatments seem to be going good.  My main side effects are fatigue (partly because of the Lorazepam), and headaches - had those before, but now it is just more constant.  Taking Advil for it.  We'll see if it gets worse.  So far no need for steroids.  My head/skin is tender in the locations they are irradiating - they gave me a special cream for it.  Haven't specifically noticed if any hair has fallen out from those locations - I have a lot of thick hair, it's long, and I shed a lot, so I'm constantly pulling out handfuls normally - haven't noticed any out of the ordinary.  4/5 weekdays, I get to do whatever I want for the morning until about 13:00, then I have to start taking meds, and get ready for the appt, and post-appt, I'm pretty tired and not very useful - movies/books/nap.  Wednesdays, my appts are in the mornings because I have to see the doctor after (once a week).  Those days are almost totally a write off - after treatment I come home and either nap, watch a movie, or read a book.  The weekends are 'normal' (no treatments or drugs), so that's nice, and I find myself looking forward to them, much like I did when I was working!   The radiation oncologist filled out all my paperwork for short-term leave, and they're advising a 2 week recovery period after the end of treatment to rest up and get back to normal.  That will be nice!  After that I return to work.  We'll see how that goes.  Since stress is one of my main factors for triggering symptoms (dizziness, headaches, etc.), I'm going to really try to limit my workload to something reasonable that allows me to not go crazy.  That could be a fun battle.  Whatever, don't have to worry about that for 4+ more weeks, so I won't!!

-Cyndi-

[patt]

Hi Cyndi ---

I am glad to hear that your treatments are going well.  Sounds like you don't have many side effects from your treatments -- which is great!!

I am doing the same thing right now.  I just completed "8" treatment and have "22" left to go!!!   I have felt alittle tired at night, but nothing else.  I know I haven't had many treatments yet and more side effects could be on their way.   I am concerned about "hair-loss"  --  I haven't noticed anything yet --- I have very short hair -- so it would be very noticeable.

Keep us posted on how you are doing.  It helps all of us that are traveling on this journey.   May your journey continue to be smooth.

Patt from Minnesota

[Lizard]

Thank you so much for describing your journey with FSR.  I'm happy you were able to get them to adjust your mask and enjoy your music I'm sure that will help the rest of your treatments fly by...
Take care,
Liz

[Jim Scott]

Patt ~

We appreciate your comprehensive and informative post detailing the specifics of your FSR treatments.  As an FSR veteran (26 sessions back in autumn, 2006) I read your account with some interest.  In my case, I didn't suffer with claustrophobia so that wasn't an issue for me (no meds necessary).  I just 'spaced out' (disassociated myself) during my sessions so no music was needed (my choice).  A few years earlier, I had undergone extensive dental work and learned to, as my son put it: 'go to my happy place' when having something done to my body that I would rather not think about.  It worked for me.  My radiation oncologist directed that I receive the lowest possible amount of radiation that would be efficacious, so I never experienced any 'burns' or hair loss.  I don't recall feeling especially tired post-FSR session and I know that I had only one incident of temporary, mild nausea.  I consider my FSR experience to have been relatively easy so I'm pleased to learn that yours are going smoothly, too.   

Jim   

[Larry]

Cyndy and Patt,

You are both well on your way which is great. I don't recall anyone having any hair loss from this treatment. My FSR was over 5 days and had none.

Cyndi, watch the advil. I stand corrected but i think its an anti inflamatory. You need to be taking Losec or something similar to counteract the effects on your stomach.

cheers


Laz

[C Bourne]

Thanks for the replies everyone!  Patt - hope all is going well with your treatments...

Well, only 3 more treatments to go for me - so glad yesterday was my last early-day one because the effects of the Lorazepam screw me up for the whole day, and it is not all that fun.  I have had a couple of times where I start to think about panicking but I have been able to talk myself down, or distract myself by humming/singing or talking to the techs.  Unfortunately I have had a few incidents where I have panicked enough to ask to come out of the mask (all just after the mask is put on and before treatment actually started), so it seems 2 mg of Lorazepam is the lowest effective dose for me.  Like I said, it screws me up for the rest of the day, so I greatly look forward to weekends (when I'm not on it)!.

Last meeting wit the doctor yesterday, and he said all is going well.  Still only mild side effects so far - fatigue and headaches - the level of headaches are nothing unusual for me, and he still recommends I just use the Advil.  (Laz) I have had headaches of varying degrees for years, and have tried many things with my doctors, and besides Extra strength Advil Liquigels, the only thing that works is prescription Zomig when I have migraines, but I don't get those regularly.  The radiation oncologist said to just keep on with the Advil if that's what's working, and because it's an anti-inflammatory, if it's swelling that's causing the headache, that will help with it as well.  I don't appear to be having symptoms that indicate significant swelling at this time, so no steroids (yay!). As far as AN-related side effects, I have noticed a small worsening of my hearing, small increase in the intensity of my tinnitus, and a few vertigo/dizzy spells, all expected.  As you may know, side effects from radiation tend not to peak until 3-6 months after treatment (apparently the tumor can take a while to react/swell up), and can take 12 months to subside if caused by swelling of the tumor, which may or may not go down, and those side effects may or may not go away.  So another waiting game...  Guess I'm used to that by now!

After this, they just said to call the head nurse with the Radiosurgery centre directly if I have any change in symptoms at any time, and she'll get me in to see the doc.  I will have a reular follow-up appt with the doc (radiation oncologist) in 3 months, and an MRI in 6 months. 

They gave me about 2 weeks for a 'recovery' period until I have to go back to work.  It will be nice to have the time to get all the Lorazepam out of my system, and try to feel more normal again.  There's a long weekend in there, so I will be taking a nice camping trip.  When I return from that I have an appt booked for my next tattoo (I have 6 already).  As I am a classically-trained pianist I have been wanting a music-related tattoo for a while but couldn't decide what I wanted.  Since the onset of my AN symptoms, this part of my life has been affected in many ways.  I now find it troublesome to play with the lid of my baby grand open as the loudness causes interference in my affected ear.  I also find that listening to both recordings and live orchestra, things don't 'sound the same' as they used to - this is probably the worst 'side effect' for me out of everything, and makes me really sad at times.  However it has also taught me to take time to do the things I love NOW instead of putting them off, so I have made studying music a bigger part of my life after many years away (telling myself 'oh I'll get back to it later sometime').  Anyways, as far as the tattoo goes, I have decided to tie them together and get a 1 inch tall treble clef on my neck under my left ear - to mark my love for music, to celebrate the completion of the radiation, and as a reminder to my spouse which side is the 'deaf' one... 

-Cyndi-

[Jim Scott]

Cyndi ~

Thanks for the update and I'm pleased to learn that you're coming through the treatment in fairly good shape, even as you deal (successfully) with claustrophobia.  I'm sorry to learn about your hearing abnormalities that have affected your ability to appreciate music as you once did but I trust that this will subside and that your musical future will be rewarding.  The tattoo you're planning on getting sounds charming and perfect for you (the musical symbol, under your ear) as well as having some practical purposes, such as delineating your 'deaf' side.  Please post a photo, once the tattoo is a reality.  I'm sure it will be appreciated. 

Jim

[C Bourne]

I'm DONE!!  And no more Lorazepam!!!!  Had last treatment session (of 25) today.  Just wanted to say a huge thanks to the techs in Radiation Treatment Unit 3 at the Foothills in Calgary (Stacey, Linda, and Matt) - I could not have endured "the mask" without them!  I got to bring my mask home today - I'm thinking of painting it. 

Will post a pic of the tattoo next week after I get it.  Thanks for all of your support everyone!!

-Cyndi-

[C Bourne]

This should be my last post in here until my 3-month follow up.  Got my tattoo today (lucky no. 7)!! As mentioned previously, I chose a treble clef for 2 reasons: 1. to mark my love for classical music and 2. to celebrate completing 5 weeks of radiation for my AN! I put it on the left side as that is where the AN is, and also as a reminder to my spouse which is my partially deaf side...   Done by Rick Wilson at Strange World Tattoo in Calgary.  The lower left of the clef curve is a bit ragged - I will have to see how it heals and likely go in for some touch ups. But overall, I'm very happy with it!

[Lizard]

Love it, and congrats to you!
Liz

[free2be]

Cindi,

It have been very informative to read your story and all the steps involved in your treatment. I'm still deciding what treatment to go with and the radiation option that was so far offered to me involved a head frame that is screwed into my head! I think your face mask sounds like "Sunday drive" campared to that. Not minimizing your issues with it at all, but for me, screws in my skull...I'm having a little trouble with that. No, that would be a LOT of trouble.

I'm glad you made it through such a long treatment and certainly wish you the best as time progresses. Do keep us informed about how you are doing. Side effects and such are an important part of the decision process.

Thanks,
Connie

[Jim Scott]

Cindy ~

Thanks for the photos.  The face mask brings back a few memories of my 26 FSR sessions, back in 2006.  Although my FSR went very well (no problems) I didn't keep the mask - and no regrets.     

Your treble clef neck tattoo is unique and attractive.  Now, go and enjoy the rest of your life (but give us a 3-month update).  Thanks.

Jim 

[foodsmarts]

Cindi. Congratulations to you. As I'm slightly claustrophobic, I can sympathisize. As I had CK, I had only three sessions and for some reason they didn't bother me much past the first "clamp down". Your detailed report will be very useful for those facing the procedure. Knowing exactly what is going to happen, taking the surprises away can really smooth the way. While the professionals fill you in on the procedures, they usually don't explain the little things that have become routine to them, but can be terrifying to the patient. Good job on the report. Beautiful tattoo. Good luck going forward.

[C Bourne]

Hello all, just thought I give an update...

Things have been going not too bad.  I have returned to work on short-term disability (full salary for up to 6 mos.), and basically work when I feel able.  Occupational Health has told me to take it easy and do what feels right, so that is great!  I am in IT (Systems Admin), so my job consists of working on a computer all day, troubleshooting problems and delivering projects.  All brain-intensive, non-physical work.  You'd be amazed at how exhausting working on a computer and thinking all day can be!  The first week I was only able to do about 2-3 hrs/day before fatigue and headache would set in.  I worked from home so I could easily take rest breaks.  Last week I was up to about 5-6 hrs/day, and went into work for 3 days.   

Unfortunately this week wasn't so good.  I knew that the radiation could cause the tumor to swell, which would enhance the normal tumor side effects (dizziness, headache, hearing problems) for a period of time.  This started on Sunday evening for me - started getting waves of dizziness and pulses of a new tone of tinnitus. Monday and Tuesday I had differing pulses of tinnitus, and was constantly dizzy any time I moved (difficult to walk), or even looked at a computer for more than 15 mins, so I spent most of the time on the couch, away from the computer.  Wed it started to die down, and now both the dizziness and new tones of tinnitus come and go. I was able to work for about 4 hours from home yesterday morning, before fatigue and headache set in, so that seems to be getting back to 'normal'.

I wasn't too concerned about the symptoms at first because I expected it, but on Wednesday I finally decided to call the Radiation Oncologist's office to both let them know it was happening (as they are monitoring my progress) and see if they had any suggestions. The nurse quizzed me on my symptoms, and as I expected, said the doctor would likely want to prescribe steroids to control the swelling, which would lessen the symptoms.  Doctor was out so she would call me back the next day.  After that I read everything on here I could find about the steroids, and after discovering the nasty side effects, and the majority opinion to not take them unless absolutely necessary, I decided I would rather deal with the symptoms I currently have.  When the nurse called back yesterday I told her that the symptoms had gotten somewhat better, and that I felt I didn't need the steroids at this point.  I am assuming that both the tumor has stopped swelling, and that my brain is compensating for the balance problems - I have been trying to do some balance exercises to help. If my symptoms get worse, I will re-evaluate at that time.

Today seems to be about the same as yesterday.  I have been awake for about an hour, with a few bouts of dizziness and tinnitus, with a 'normal' headache (for which I take Advil). I will work from home this morning until I get tired, and then try to take it easy in the afternoon with a nap.  We'll see how things go.  I am fortunate that my job is so accommodating, however I find it difficult to deal with the fact that I can't work a full day.  I am currently assigned to a few projects, and am not able to deliver my work as quickly as I used to.  I feel like I'm not getting anything done, and that I may be impacting others. This week especially I have felt pretty useless.  However, that's totally my own fault, because I need to come to terms with the fact that I can't expect to just go back to 'normal' like the flip of a switch, and adjust my expectations accordingly.  When my boss returns from vacation I will have to tell him that until further notice, I am simply unable to deliver my work at the level I used to, and that I need to be assigned to things that perhaps don't have a specific deadline.  I also need to find things to do for the days when elevated symptoms kick in, so I don't feel so useless and bored. 

Hope everyone is having a good summer!

-Cyndi-