ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: C Bourne on February 24, 2010, 03:31:26 pm
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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.... :P 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-
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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
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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
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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-
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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-
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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
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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
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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
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Best wishes cindi and know we're here to cheer you on! :)
Phyl
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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-
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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... :P 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 (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-
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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!
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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
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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-
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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-
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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!
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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! :P 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-
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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
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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
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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
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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
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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... :P
-Cyndi-
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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
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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-
(http://www.spotco.ca/stuff/mask1.jpg)
(http://www.spotco.ca/stuff/mask2.jpg)
(http://www.spotco.ca/stuff/mask3.jpg)
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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!
(http://www.spotco.ca/stuff/tattoo7.jpg)
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Love it, and congrats to you!
Liz
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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
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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
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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.
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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-
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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
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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-
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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
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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-
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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
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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-
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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.
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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-
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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
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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-
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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 (http://www.anausa.org/smf/index.php?topic=14767.0)
-Cyndi-