ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: patt on May 20, 2010, 08:06:27 pm
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Hi --
My name is Patt. I was diagnosed on March 22, 2010 with a Right 2.7cm acoustic neuroma. I have been on this forum since that time and have gotten so much good information and met so many wonderful and caring friends. What a great place to come when you need a question answered, to vent or just to visit. All of you have been just great.
I researched for many weeks -- met with several Drs. I finally made my decision to the treatment that will KILL this tumor. I have always had a loss of hearing in my Left ear. When this happened to my Right ear, I was very upset. Since then and being on a very large dose of steroids -- I have most of my hearing back. For that reason --- my Radiation Oncologist has decided to treatment me using "Fractionated Stereotactic Radiation". That means treatments 5 days a week for about 5 weeks. He is hoping to save as much of my hearing in that ear and to be gentle to the healthy tissue around it.
Today, Thursday - May 20th ----- I was fitted for my mask, which helps in positioning during my treatments. That procedure was very easy -- went well. Had a CT with the mask -- that was to help with the mapping. Had another MRI, which is another tool to help map the treatment area. I told all the Drs that I could hear better out of my RIGHT ear than my LEFT ear -- had another hearing test today and YES, I was right!!! My heariing has come back!!! I was right!!! I have to understand that with the Radiation treatments -- there is the chance of losing some of my hearing. I have faith that this treatment will KILL my tumor and that I am going to have quality of life after my treatment.
It has been very helpful reading the posts from all of you, so I am going to share my journey with you. Now, I just have to wait for the call from the Radiation Oncology department telling my when my treatments will start. I will keep you updated.
The hardest part is over!! I feel very relieved and ready to move on!!
Thanks again --
Patt from Minnesota
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Patt ~
Congratulations on coming this far and sharing your journey with us. I'm pleased to learn that the ANA website forums have helped you. I'm sure your FSR sessions will be unproblematic and ultimately successful (the AN dies). Enjoy your hard-won serenity :)
Jim
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Patt,
I'm so happy you have made your decision, now just sit back and enjoy the ride...hopefully your hearing remains well in your AN ear throughout the FSR and after. Please let us know how you are doing and feeling!
Take care,
Liz
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Hi ---
I am having a good weekend --- first time in a long time. Now that I have made my decision for treatment -- the first load if off my shoulders. I find myself thinking about other things --- not which treatment to go with. You were all right -- that was the hardest part. Now I have been thinking about the side effects from the "FSR" --- but I am going to think positive thru this whole thing. This forum will help me too.
For those of you that are still in the deciding stage -- good luck -- you will find the right fit for you -- it may take awhile, but if feels really good when you do!!!!
I hope sometime at the beginning of the week I will hear from Radiation Oncology ---- I will let you know!!
Patt from Minnesota
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Patt, hope you just received my reply to your message earlier. I had FSR ten years ago by Dr. Gil Lederman. He can be contacted at Radiosurgery NY - 212-246-4237. Lederman pioneered FSR for AN and has treated many AN in the 3 cm range.
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Plan to be a bit tired. I have been doing the treatment for 9 times. !7 more to go. I don't know why but 15 mins of radiation sure makes you drained...good luck
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Good Morning ---
I want to thank all of you for wishing me well --- Jim, Liz, oceansorcas and tichinose. This forum means alot to me and I will continue to update during my treatments. I know that there will be ups and downs, but with all of the support that I am getting --- I know that I can do it and "I WILL"!!
"tichinose" --- wishing you well during the rest of your treatments. Keep us posted how you are doing. Hope you had a rested weekend, so you can start another week with your treatments.
Just waiting now for that phonecall that tells me to come in and start the treatments. I had all the prep work done last Thursday --- they said that they would start sometime this week. I am hoping!!!!
I did have a good weekend --- did alot of outside work -- keeping my mind off this thing in my head!!
Patt from Minnesota
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You will be fine. Much, much more is known about FSR today than was the case 10-15 years ago. Also, the technology and machines are greatly improved. I do not believe radiation makes you tired - I had no side effects whatsoever. Good luck.
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Hi Friends ---
I still didn't get the start date for my "FSR" treatments. So, I called the Dr's office and I won't be starting until atleast June 1. Right now, I am very upset. I wanted to get this going. I do have a headache this morning --- could be from stress or most likely from "AN"!!! I have been pretty lucky --- haven't had headaches --- more pressure today than a headache. Not a good day.
Thanks for listening. This isn't a fun journey that we have to travel.
Talk to you soon ---- Patt from Minnesota
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Hi Patt,
I'm glad you came to a decision for treatment that you feel good about. I understand the frustration having to wait. I was diagnosed Memorial Day Friday of '08 and couldn't get my first consult at Mayo Clinic until July 27, then for a number of reasons didn't get treatment until 11/08. You will be just a little over 2 months before you start. Since there's nothing you can do about it, try to step back from thinking about it (although I know this is easier said than done), try to keep busy with friends family or do something nice for yourself. The time will go quickly. All the best.
Mona
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STARTING DATE!!!!!!!!!!!!
I got the phone call that I have been waiting for. I will begin treatment on Tues, June 1st. I am anxiously waiting to start --- but I am alittle nerveous about the effects that I will have from the treatments ---- duriing and after.
We are leaving for camping this afternoon --- won't be back until Monday afternoon. We will be with wonderful friends --- I know that we will have a good time. It should take my mind off of what is ahead of me next week and the 5 1/2 weeks of treatments.
Thanks for all the wonderful messages from all of you. I will be back on Monday to visit!!
Patt from Minnesota
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A starting date! What a relief! I'm jealous of your camping trip - I've been thinking I want to get out and do some camping soon - it's good for the soul.
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Patt from Minnesota ~
I can only relate my experience but I never had any problem during or after my 5 weeks of FSR treatments. No nausea, headaches or anything unusual. I drove the 60-mile round trip each day without any problems at all. I'm sure you'll do just fine. Now, enjoy the holiday weekend and the camping trip! :)
Jim
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FIRST TREATMENT OVER ----
June 1st --- and I have started my "FSR" treatments!! I was told today that I will have 30 treatments -- the machine will move around to different target areas -- there are "6". It went very smooth -- very easy. I was on the table for less than 30 minutes. They told me that it would even be shorter from now on --- first time takes the longest. I am ready to "KILL" this thing!!!
Now I will be counting down the days until that very last treatment. I will also be waiting for some side effects to begin -- I hope not, but I will be ready to deal with them. Hair loss is something that I was told that I will have to deal with too. I will share with you my experiences.
This site has been very helpful. I hope others find this site as they need it. What would we do without all of you??
I will be back tomorrow to tell you how I did. I will see the Dr after my treatment. I am anxious to find out from the MRI if my tumor had changed in 3 months.
Patt from Minnesota
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It gets to be routine...I have had now 15 treatments with 11 to go. It goes by quick. The tiredness hits after a few treatments. I actually think some nerve problems feel better. We'll see..good Luck
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Patt great news, please keep us posted!
liz
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Treatment #2 ----
Just got home from treatment #2. Very easy - takes longer to get there than the treatment itself. I am getting into a routine - very nice staff that is taking care of me.
Every week the Dr has a visit with his patients -- more often if needed. Also, a visit with the nurse in the department to go over meds and if there are any problems with your health. Before my treatments started, to help with the mapping, I had a repeat MRI. The good news was that there wasn't any change with the size of the tumor --- let's hope that it stays that way!!!! The Dr said that I will start to feel tired --- that is the biggest effect of the radiation on acoustic neuromas. Rest, but don't forget to get out and move around. The nurse encouraged me to keep cream on my neck and watch out for the sun --- cover as much as possible or just stay out of the sun. Better to be safe than sorry later on.
I have been writing my experience down in a journal everyday --- it is hard to believe what we go thru with a tumor like this. Believe me, it has been a journey --- and it isn't over yet!!! I just keep traveling.
Patt from Minnesota
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Patt ~
Thanks for the daily update on your FSR treatments. My daily round-trip drive to the hospital cancer center also took longer than my radiation treatment. The pre-radiation MRI (I also had a CT scan) are standard so that the doctors can 'map' the radiation accurately. I don't recall feeling unusually tired while undergoing the FSR sessions but its been four years and one forgets such things. I do know that I never had any 'issues' such as hair loss or nausea. I trust that your FSR experience will be similarly uneventful and that your journey remains smooth and successful.
Jim
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Hi to ALL of YOU ----
It is the weekend and I am enjoying the time. Went out with friends last night --- friends sure can pick you up. I finished my 4th treatment --- 26 more to go. They are very good to me at the Clinic, but I will be very happy when I am done.
I really don't feel any effects from the treatments. I am waiting for the "tired" to set in, which the DR said I would experience. The last couple of days I have noticed a metalic taste in my mouth. Feel good, so really can't complain.
Hope everyone is having a good weekend -- I will be back to keep you posted as to how I am doing.
Thanks for everything --
Patt from Minnesota
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Good Afternoon to all my "AN" friends ------
I completed another week of treatments without much discomfort. I was alittle tired a couple of nights, but that could be my age catching up to me. I felt alittle nauseaed one morning, but that passed quickly. NO hair loss yet, so I am very happy about that.
Today was treatment #9 so that means I have 21 left to go. I can do it --- I will do it.
I have to tell you what my daughter did for me. Made me a Radiation calendar. Each day that I have radiation, I have a page to read that was written by a friend or family member ---- I have had alot of tears, but tears that are helping me get thru this journey.
Hope everyone had a good day --- Have a good weekend too.
Patt from Minnesota
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Patti,
You daughter is a real sweetie!!! Good luck with the rest of your treatment.
Anne Marie
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Hi Everyone ---
I haven't posted for awhile. I hope this finds everyone going thru surgery or radiation finding help with their journey. A journey it is!!!
I have "6" more treatments and then I will be done. I have really done pretty good. One of my concerns was losing my hair and so far the hair is NOT falling out -- I am keeping my fingers crossed. I have had days when I have been really tired - not everyday. So, on those days I find myself resting alot. I was told to listen to my body. If it tells me to rest -- I will rest!!! I have been very weepy during this time too. Doesn't take much to make me cry. Again, what a journey!! Today I have noticed more pressure in my head -- NOT a headache, but right between my ears -- pressure. Have any of you experienced anything like this?? If so, what was it??? I notice that my hearing is alittle different because of this too. My Dr is back this week, so I think I will be talking to him. Hope it isn't swelling -- if it is -- I may have to go on a steroid to get the swelling down.
I have NO regrests that I picked "FSR" for my treatment. In another week, I will be done and put this whole thing behind me. I will move on with my life -- and will be a stronger person. I do pray that when I have my recheck -- not sure when that will be --- that this tumor is DEAD!!!!! I have been so lucky to have such wonderful family and friends to help me thru this whole thing. I hope that I can be as supportive to others like they have been to me.
To those of you that are still in the process of finding your right treatment, I hope you find strength to get thru that process. Once you do that ---- things will get better. It did for me. I was told that was the hardest part of this whole thing -- I have to agree!!!
I will return in a couple of days and update you as how I am doing. I have good thoughts that things will continue to go well. I have a wonderful staff at the Clinic that I go to for my treatments. They are my cheerleaders -- they keep telling me how well I am doing and that I can continue --- I know that I can and I will.
Later ---
Patt from Minnesota
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Hi, Pat ~
I'm so pleased to learn that your FSR treatment is progressing nicely. Do keep us updated - and know that you have a cheering section here, too. :)
Jim
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Patt,
I was wondering how you were doing, almost at the finish line and doing well...always great to hear. The pressure you're feeling can be any number of things, but swelling is possible. Just talk to your Dr and please report back.
Take care and yes this can also be a VERY emotional journey so let yourself feel and it will help, even down the road when you look back at where you started.
Look forward to hearing from you soon!
Liz
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Hi to All of my AN Friends--
My treatments are done!!! I went for my 1-month follow-up yesterday and I am doing well.
I had 30 treatments. During that time, the side effect that I noticed was that I was tired alittle more than usual. I still did everything that I normally would during the day. I would notice a metallic taste in my mouth every once in awhile --- I was told that was normal. I did NOT have any headaches nor was I nauseated from the treatments. I did get a thinning of hair at the site of treatment. Would you notice it??? NO!! I had to show people.
How do I feel today??? I feel great that this part of the journey is completed!!! I do still have a fullness in my head every now and then. My Dr said that is still from some of the irritation around the tumor site. It will take awhile for that to simmer down. I didn't lose my hearing -- but when I have the fullness my hearing is different.
Now what??? I will be having a repeat MRI in October --- that is 3 months after my last treatment. Will we see a difference??? We may see the tumor alittle larger --- that could be the tumor swelling before dying. It's a waiting game. His plan will be to have another repeat 6 months after that --- hopefully more info at that time.
I want to "THANK" all of you for being so supportive to me during this journey. You were all right --- the biggest part is to decide on the treatment and be comfortable with the treatment that you decide on. Once you do that --- you are on your way!!!
If there is anything that I can do to help any of you out there, please feel free to send me a note. I sure will take the time to answer you ---- the help from this forum got me thru this. No one knows what we are going thru --- other than the ones that have traveled in these same shoes. We have/had a very strange tumor that many haven't heard of, so we need each other for support. I will be here for you!!!
Thanks again and good luck to all of you ---
Patt from Minnesota
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Patt,
You sound like you are doing great, how exciting for you! Great attitude, and I'm so happy everything is working out. Don't be surprised if you still don't see any tumor death at 6 months, it can take a while for the booger to shrivel up.
Look forward to hearing more great news from you soon. Support is what we are here for and thank you for sticking with us and offering to share your experiences with others.
Take care,
Liz
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Hey, Patt ~
Congratulations on successfully completing your FSR treatments! The 3-month MRI may well show a swelling-related increase in tumor size but that should resolve within another 3 months. I did for me, anyway. May your AN be on the way to 'Necrosis town'! :)
Jim