ANA Discussion Forum
General Category => AN Issues => Topic started by: BeJoi on June 18, 2007, 07:30:59 am
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Just letting everyone know that I started my first of 28 FSR treatments today at Piedmont Hospital in Atlanta. They're utilizing the Trilogy System and the tumor is being targeted from 6 different directions. It actually is a very pleasant and relaxing experience. I'll be going 5 days a week at 6:15 AM every morning. I'm a little headachy right now, but I think that has more to do with the lack of sleep last night than anything else. I'll be watching to see if any side effects show up from the cumulative effects of the radiation. I'll post every so often to let you know how I'm doing. Also, if anyone has any questions about the mask or the treatment, I'll be glad to answer them from my own experience.
Beverly :-*
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Hi Beverly,
Congratulations on your first treatment! I haven't been through it (yet) but I'm willing to bet the first treatment is the most stressful. Getting up that early is stressful enough. Could you at least have coffee first?
I'm very interested in hearing about your experience with Trilogy because it's one of the treatments I'm considering. According to the marketing hype, it's supposed to be better at preserving hearing. Did your doctors share any statistics with you?
Sending good wishes your way and hoping the remaining 27 treatments are as pleasant and relaxing as the first!
Betsy
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Hi Betsy,
I don't make coffee, I buy it and nothing was opened at 5:30 when I was on the road today. The hospital food court wasn't even opened :( .
I'm hoping my hearing will be preserved, but only time will tell. The Trilogy System is cool--the bed and the beam move with each new angle. Whether it preserves hearing better, who knows. I know there's a lot of hype; only our experiences will tell.
I'll keep you posted.
Beverly
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Hi, BeJoi:
Congratulations on beginning your FSR treatments. Sounds familiar.
I underwent 26 FSR treatments last fall, 3 months after my retrosigmoid surgery. I don't know if I had the 'Trilogy System' (that name was never mentioned) but my neurosurgeon and a radiation oncologist he partnered with, carefully programmed the radiation beams to hit only the remaining tumor and avoid the facial/cranial nerves. I received very low 'doses' of radiation, according to the radiation doc. I do recall the 'moving bed' and the angles, as you mentioned. Unfortunately, my hearing on the 'AN side' (my left ear) was effectively gone before the surgery or radiation and so, preserving it was never an issue, even though both the surgery and radiation were the type to preserve hearing.
Thankfully, I suffered no side effects except one day of slight nausea, a week or so into the treatment program. It wasn't quite a 'pleasant experience'...more like a boring experience...as the 5-day-a-week, 20-minute treatments quickly became routine and I would sometimes come very close to dozing off. My FSR treatments were sensibly scheduled for early afternoon, as I made it clear that early mornings were a no-go, due to the fact that it was a 45-minute ride (one way) from my residence to the hospital and I wasn't getting up at 5 A.M. to do this if it wasn't absolutely necessary. It wasn't. My 2 P.M. appointments were very convenient and didn't seem to be a problem for the staff who administered the FSR. I suspect that I might have been a favorite patient because I was always on time, never complained about anything - including the tight-fitting face-mask I had to wear - and I always had a positive attitude, as this was a lot easier than surgery and was intended to kill the stupid tumor that had given me so much trouble.
Before I knew it, it was mid-October and the FSR episode was over. The radiation oncologist said I did very well. He was totally optimistic about the chances for the tumor going into necrosis. My last MRI showed signs of necrosis and my neurological exam responses showed a noticeable improvement from prior tests (Dec. 2006). I have an MRI scheduled for June 20th to determine if there is any shrinkage of the remaining tumor. I expect there will be. We'll see.
On the whole, I'm doing very well, a year past surgery and 8 months following FSR treatments. I trust you'll have a similar experience and I certainly hope you do. Like others, I look forward to reading about your experiences. :)
Jim
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Hi Jim,
I always love reading your posts; they're so loving and supportive. I'm sure I'll get bored, but I'm a meditator and so I practice my meditation exercises while I'm there. Kills two birds with one stone, so to speak. I'm taking the early appointments because I need to work in the afternoons. I'm a therapist and all my clients know that for the next 6 weeks, I'm working from 1:00 to 6:00 and that's it. And if I have a difficult day due to nausea or fatigue, I'll cancel my appointments for the day. They're all very understanding about this, so I'm very fortunate there. I promised myself that I would take good care of myself while going through this treatment.
The mask isn't too bad. It was cutting my nose, so they loosened it enough to protect my nose. It still holds my head pretty still. I've got 6 points of entry, so to speak, and I can't tell now where those points are. They've advised me to only wash my hair every 3 days and only with baby shampoo and to make sure I cover my head when out in the sun. Other than that, there aren't too many restrictions. My ear squeaked (that's how the tinnitus sounds right now) while they were radiating me and the general tinnitus background noise is a little louder this evening. We'll see how that goes.
I'll keep you (all) posted. I hope my experience is as uneventful as yours.
Beverly 8)
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Beverly,
Gosh this brings back memories. I had FSR 25 treatment 2005. I remember them actually taking the mouth piece out of my mask because it was too tight. The daily treatments were a peice of cake. A friend gave me a St. Jude medal to hold during the treatments. I thought the techs were going to have a heart attack over that one. I mentioned it was in my hand before they started. When I initially called MD Anderson, a fellow named Rob talked with me. He was so caring and knowledgeable. During those weeks of treatment I would ask where is Rob? Everyone told me no Rob works here. So my last week of treatment I called the phone number again and he answered. He actually was the person who computed all my treatments and by computer watched them. According to all the techs, Docs and nurses I should of never gotten through to him. I guess the initial phone operator patched me back to him by mistake. Anyway he met with me, took me back to where he worked showing me my head in technicolor. He actually made copies of all the brain lab stuff including how the beams were going into my head, the AN etc. It is really cool to have in my memory file. Anyway wishing you a good outcome .
mema
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Hi Mema,
Thanks for your post. I actually saw the treatment plan and where all the colorful beams were going. It was so cool. I'm meeting with the radiologist on Wednesday and I may ask him to show them to me again. It's so fascinating.
Did you have hearing in the AN ear before treatment? And were you able to preserve any of it? I'm very curious to know. I'm glad it was a breeze for you. Hopefully my experience will be similar. Tonight, I'm very tired though. That's mostly because I didn't sleep well last night.
Beverly
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I had FSR-25 sessions last summer at Johns Hopkins. The reason I chose this was the so called hearing preservation side of FSR. I got into the AN Archives and actually called 8 people who had this kind of treatment. One lady from Las Vegas-her hearing came back too 100%. Anyhow- I am coming up on one year. My 1 year MRI is scheduled for June 26th I am not familiar with triology but a brochure that was given too me at the hospital that done my treatment said that Hearing could be affected within the first 6 to 10 months after treatment. That was for me at least right on target because things started happening at the 6 month mark regarding hearing. Prior to FSR my audiologist looked at my hearing test before and told me that I lost 26% from the initial 100% hearing before I even started. She now calculated that my hearing percentage is at 50%-so I lost about 20% between 6 too 10 months. I know this looks like 50% loss-but it is not. When my tumor was first found in 2005 I had 100% hearing but I lost 26% of that before FSR. The only way I can hear is through use of a hearing aid now. Last MRI indicated Edema or Swelling and 6 month MRI showed some necrosis. Here is hoping that this takes care of your Booger or what ever you call the darn thing. Will be thinking and praying for a good outcome from treatment. I will post as soon as I get official word on my MRI. I am aliitle bit nervous though. Thanks- Ron.
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Beverly,
I do not remember all the % and numbers they use about hearing loss. What I do remember I had slight hearing loss that I could still understand people on the phone but it was hard to. At six months post treatment the phone was completely silent. When they tested me they said I have profound hearing loss (90%). The radiologist seemed surprized that it happens so suddenly. I think they call it crash. He said I probably would have lost it over a period of years. But this is not the general rule. Many people post their hearing never changes. Lets hope your luckier than I was.
mema
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Thanks for your posts Mema and Ron. I'm feeling a little dizzy and nauseous today, and it was the second day of treatment. I haven't slept well in two nights and I'm going to ask the doctor tomorrow for an rx for some sleeping pills so that I can sleep well during the week while I'm getting treatments. I'd really love not to lose anymore hearing, but I guess I'll have to live with whatever happens.
I'll keep you guys posted. And, Ron, I know you're nervous but I'm really hoping your MRI shows more necrosis and less swelling. Can't wait to read your post on this.
Beverly
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Hi Bev:
Congrats on getting the ball rolling on the FSR. I do hope you can get something for sleeping. I remember all too well the lack of sleep from the steroids. This stuff is stressful enough without adding insomnia to the mix.
Good luck to you, Kathy
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Hi Everyone,
I'm feeling so much better today. I had a great night sleep last night thanks to Advil PM and today I got an rx for ambien to help me sleep. It's amazing what a good night sleep will do!!! I also feel great physically--so I hope that continues. Everybody I'm working with is so nice and supportive and they all take time to answer my questions about anything. It's a breeze going in, putting the mask on, and I'm out of there in less than a 1/2 hour. I spoke to the radiologist today, and he told me that I'm getting a little over 50 gy total, around 1.8 gy a day. He explained how radiation works and why we're doing my FSR this way. I think it's a good strategy--and hopefully I'll have the blessing of maintaining usuable hearing in my AN ear.
Have a great day! ;)
Beverly
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So glad you had a good night's sleep last night, Beverly. Things are so much easier to take when you're well rested. Let us know how the Ambien works. It sounds like you've planned this out very well...good for you! I think your attitude is great!
Betsy
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Beverly,
Beverly,
I am glad to hear you are doing well. I had my Trilogy treatments two months ago. The ringing has decreased and my hearing seems to be the same. The only problem that I have now is concentrating on mulitiple tasks. I seem to get stressed out very easily. I am sure you will be fine after your treatments are over. Here is a good article that I posted on the site today.
http://www.backgroundfacts.com/menieres/COGDIS.htm
If you ever want to talk, you have my number.
Cheers,
Craig
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Thanks Everyone for your support. I still feel good at the end of the today--more like my normal self. I think now that I've fallen into a routine that works for me, I feel better. And, honestly, it's good to be started with it already and not waiting anxiously for results. I'm sure I'll have my good and bad days, but that's my life anyway.
And Hi Craig. I've been thinking about you. It's good to hear that your tinnitus is better and your hearing is the same. I thought all men were bad at multitasking ;D!!! Seriously, I'm sorry that you get so stressed. But maybe you can use this as an excuse to slow down and do less.
Right now, I don't feel the need to talk, but I've got your number and will call if I need to. Thank you for being so supportive.
Beverly
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I'm sending positive, healing thoughts your way! Congratulations on starting your treatments.
Princess