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It wasn't just a headache


TAnn

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Many, many heartfelt thanks to all of you great friends. I didn't sleep much last night, even after taking an Ambien. Just kept thinking that I have so much to do, in case the WBR zaps the good cells too. But like you all said, maybe I will respond well since they are so small. I hope so. Didn't know about the mask thing, kinda makes it even scarier :?

I'll let you know what the radiation onc. says tomorrow. Maybe he has a better alternative than WBR. (Wishful thinking!)

TAnn

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So sorry to hear this news. My mom started WBR about two weeks ago for brain mets. So far she said the only side effect has been extreme fatigue (she naps a lot during the day). The actual WBR itself only takes about 5 minutes so she is in and out of the clinic and back to her reclinder! Her onc plans on doing 25-30 treatments. I'll be thinking about you!

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TAann

although i'm new to the board i have had the pleasure of reading several of your posts. i'm so sad today for you. this disease is so terribly unfair. i pray for strength, both mentally and physically for you as it seems this is a war of the mind as much as the body. good luck sweetie.

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Hi TAnn,

I didn't have WBR, I had stereotactic. I only had one lesion. Maybe since they are so small, they could do the stereotactic. Didi the doctor mention where they were located? I would thinkk since they are so amall and hopefully in the same area, they could so the stereo on you. I did very well. I also had the one lesion surgically removed. The only side effect I had was extreme fatigue and slept about 12-14 hours per day. I am over that though. I had surgery April 6th, 04 and did radiation June 4th, 04 (just one treatment instead of several like WBR.) I also had to do the mask thing, theye gave it to me after my treatment. Good Holloween mask. HAHA!!! Praying for you, please keep us posted...

God Bless,

Karen

Our Dx is very simular, you can PM me if you want.

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Karen,

My doc said that the lesions are all over. Not in one area. And they are so small (2-3mm) that stereotactic (gamma knife) would not be able to "pinpoint" them and get a good aim. And of course there are too many. So, nothing went my way there!

TAnn

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Tann - Please know I am thinking of you and praying for you. Daddy is starting his radiation tomorrow, but not WBR they are just zeroing in on the one met. From what I have read on the boards, the main side effect seems to be fatigue. I wish you well sweetie and please, please keep us updated. Love, Sharon

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TAnn-

Of course I'm a day late again!

I am sorry to hear about your brain mets but thankful that they are small. You have been so kind to me over the past several months....I'm feeling pretty crappy from chemo this past Monday and can't come up with anything witty to say, but please know that I am thinking of you and praying for you!

Keep your chin up and spirits high!

:)

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TAnn,

I have been off the board for a few days so I'm a bit late, but no less heartfelt in my concern and care for you. I didn't have WBR, but I did have 14 treatments to my forehead and I found the whole mask thing of comfort...it took away the nightmare thought of moving my head at the wrong time. They zapped me twice each session and it took about 25 seconds each zap, so I was in and out. Unfortunately I had to drive 35 miles each way. My prayers that this will be a successful treatment for you and that side effects will be limited or, better yet, non-existent. When you bring your fears to the board, we all know exactly what you are talking about.

Margaret

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Tann-

I am sorry to read about the brain mets and can only imagine the range of emotions that you are feeling right now. I have been treated twice with the gamma knife for 3 isolated small lesions. After the second gamma knife, more lesions were found. After two months of debating, talking with doctors, and enjoying family time, I started wbr on Monday of this week. I know in my heart that I really do not have a choice in this matter.

A couple of things that we said to me that I found encouraging:

. because the new mets are small it is more likely that the wbr will get rid of them completely

. because I basically asymptomatic (some headaches which could have been cause by a variety of things), I should handle the treatment and long term side effects well

. because I was young (46years old), the impact to my short term memory would be minimal

. If I could keep up with my eight year old now - I will manage the fatigue fine.

One word of caution. I tried to do the procedure without taking decadron- my most hated drug. My doctor and I agreed to this and I would try to manage any headaches with advil. Appartently, I am very sensitive to the treatment. Well Monday night, I spent a good part of the night in the emergency room with a severe migrane headache and vomiting. Needless to say, I am on decadron now and the evil short tempered Maureen has come out. My husband and I both agreed this is better than the emergency room. Lets see what he says in 3 more weeks.

I wish you the very best in your treatment. If you have any questions, please do not hesitate to email me.

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TAnn,

I'm so sorry you had to join the little brain mets group (talk about a club no one wants to join :( ), but want to give you some hope too. I have posted a lot about Steve's brain mets (you can check some of my old posts). I would try to get a second opinion from a neurosurgeon at a Specialized Gamma Knife surgery center before making your decision.

We definitely did not want WBR. The chief G.K. surgeon at USF did feel that WBR had to be done first, but Karen seems to be doing fine without it. Our neurosurgeon in Sacramento felt that you could do G.K. first and then only do WBR if necessary later, but should not do WBR prophylactically. Ultimately we were forced to do the WBR and, while it wasn't a "piece of cake" for Steve, he did get through it and seems to be doing well now. I also know someone who is 4 years out after WBR who is back to work and sees no major problems other than some short-term memory stuff.

I'll be thinking of you and praying that all goes well with whatever path you follow.

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TAnn,

Sorry to discover the little bunch of spoilers....

WBR is the most likely choice to deal with them.

They are still very small.

Honey, don't be scared.... wrap the love from this board all around you, and it will keep you warm and safe .

Hang in there,

XOXOXOXOX

Prayers always,

MaryAnn

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TAnn,

I'm sorry I am late in responding to this--and even sorrier that you discovered that you had brain mets. However, I am so glad that you were proactive and had your "non-symptomatic (?!?!?) headaches" checked out so that you discovered these blasted things while they were still so small.

I'm in SJAS' camp--just maybe see if you can get a second opinion about the stereotactic approach. It just gives you more options down the road, should you need them (when they do WBR, they want to wait a good, long time before preforming any other radiation on the brain). And then you'll never second guess yourself.

However, if you do require WBR, as terrifying as it does sound, all I can share is Geoff's mom's experience with it. We were PETRIFIED upon first learning about her mets (anything with the words "cancer" and "brain" just SOUNDS so scary!!!). We were stunned to watch Geoff's mom go through the treatment without a single, scary hitch. She was a little tired and eventually lost her hair (THAT was the hard part, for her). Other than that--she was fit as a fiddle--and fully functional. Nor has she exhibited any signs of mental confusion as a result of the WBR. It was a piece of cake physically, for her, compared to the radiation to her chest. She had 12+ mets with NO symptoms (a "look-see" scan discovered them). 8 of them "resolved" after WBR and the remaining 4 were still shrinking months after the WBR (scan taken just a few weeks ago).

It seems that mets to the brain are a much easier beast to treat than PRIMARY tumors to the brain. We have all heard of people with primary tumors up there--and frequently they are not pretty stories. Mets SEEM to be different (although, as I am not a doctor, I cannot explain if that is actually the case or why).

Nonetheless, any new met is scary news--I'm just glad it was discovered so that it can be treated.

As you are in everyone else's thoughts and prayers--you are in ours. Please keep us posted so we know how you are doing.

Melinda

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