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I've got brain mets - HELP!!!!


Leslie221

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Leslie,

Okay girlfriend.... its time to put your battle gear on... You have a full army standing behind you don't ever forget that.

My Dad had a brain met... actually I viewed the scans and I believe he had more than one, but the other ones were so tiny the neurologist said "these may also be brain mets" to keep us sane... Anyway, he was not a candidate for the gamma knife, so that was a no go... he did have radiation on the tumor which did shrink it considerably - not WBR, just regular radiation ... he was on decadron with NO SIDE EFFECTS.... I believe he was not offered WBR because of his advanced age... he was 79.... from what I read here, age is definetely a factor in residue affects from WBR... I know reading all the stuff on the internet can be intimidating, but, going into your meeting with the onc with a head full of knowledge is your best weapon. I will be praying for you.... Love, Sharon

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Leslie--

I was so sorry and shocked when I read your post. I know you will rise to this battle and win -- and hopefully, Mark will be home SOON to help you "battle on". I'm sure you'll feel a little better once you meet with your onc. and make this battle plan. In the meantime, I can only send hugs and many, many prayers your way.

gail p-m

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Leslie, I'm sorry to hear this news.

Don't know anything about brain mets myself, but we have a well-known actress (on TV and stage) in Holland who has LC with brain mets. She thought she was going to die. But now, after a gamma knife treatment, she is doing well and back on stage!

Praying for you,

Ellen.

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Leslie,

Just put your name with the prayer list,

Many of my friends have/had mets to the brain from

bc and are/were treated with different options

and they are all doing well.

None had the WBR.

Till Mark gets home to you, accept our

friendship and all we can offer to help

you.

Love and Hugs

J.C.

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oh, honey. I don't even know where to start. this is not fair and my heart breaks for you. I feel terrible for Mark, too. and your fears are probably exactly what ANYone would fear in your shoes. so here's the thing:

you are in the loving arms of the universe. you will always be YOU, even if that somehow changes through treatment. your heart and soul make you you, not just your words and your spelling. we see YOU, and we love you and we're here for you through this. you have a strong and beautiful spirit that can fight this.

that said, I second what others have suggested: investigate other options. here's where this place becomes not just a support group - people here can help you with treatment info.

there's nothing I can think of that I won't do to support you, so please just let me know what that is. keep us posted, and know that you are cherished and held up here.

namaste = the divine in me salutes the DIVINE in you. and there is much of it!!

xoxo

amie

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Leslie,

I am so sorry to hear of your worries. Please know that we are with you every step of the way. You are such a fighter and have such a positive attitude, I am sure you will nip this thing right in the bud. It's just going to a "pain in the butt" for a while. I am saying prayers for you and Mark.

GOD BLESS!!

Jamie

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Leslie, what a terrible shock! I am so sorry to hear this news, but with your fighting spirit I feel that if anyone can beat this you can. Hopefully, you can stay on the Tarceva since it has been holding it back everywhere else. You have always kept my spirits up and I hope we all can help you now. You will be in my prayers.

Karen H

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Oh Leslie...I just read this post. Hopefully, Mark is there with you, by now.

I am so very sorry to hear of this development, but I KNOW you will rise to the challenge. And as far as treatment changes - Amie put it so beautifully...it is all just wrapping for the beautiful soul/gift within. Your essense remains the same, if not wiser, and MORE beautiful for having endured the experience...

But, this DOES suck!!! (pardon the vernacular :roll: ) I am glad that you have researched WBR, and are exploring your options...I read an alarming post by Bill in Cali the other day, regarding that very subject. If I can be of help in researching, etc. for ya...please pm me! I'd be happy to help. (I used to be a paralegal, and have an obsessive need to research, anyway :lol:)

Sending warm hugs, prayers, and positive thoughts from your four-corners neighbor!!

~Stacey

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Hello Leslie...I am one of the brain met survivors at present. I'll answer whatever questions I can. As you can see...I was hit with a 6cm brain tumor in June...almost 2 yrs after my lung surgery. My husband and I were in shock for several weeks. Larger tumors like mine have to be physically cut out...but yours are small enough to use gamma knife. WBR is a personal decision...very personal. I had it for 10 days and I'm not sure yet if it was a wise decision. You can email me anytime at mayos@centurytel.net][/url]mayos@centurytel.net

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%@ Leslie, bugger it!!!!! I never expected this news and am totally shocked.

I just don't know what to say. You are the most positive woman and I know that is going to help you through this. Explore all of your options and fight, fight, fight!!! You can do this.

I will help you anyway I know how. If you need to speak to anyone PM me and I shall call you. I have a phonecard here and it doesn't cost much to call.

You are in my thoughts Leslie,

Sharon

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hey leslie, I took decadron and the only way I slept was with a sleeping pill. None of the docs said to not take it when I told them it was the only way I could sleep. Haven't had whole brain rad. Had the one brain met with the radiotherphy. so far so good but it is only about three weeks out. Am taking temodar. Hearing the side effects of WBR is pretty scary. I don't blame you a bit for keeping that as the last option. Leslie, will be praying for you cause this is all sudden and not good news. You and Mark can handle this hurdle. we keep you in our prayers. pammie

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Leslie,

I too am a brain met survivor. I had surgery then stereotactic radiation treatment for any left behind cells after the surgery. Surgery was April 2004 and SRS was June 2004... MRI's show necrosis now. Have two choices, low dose Decadron .5 forever or have necrosis removed. PET scan on Dec. 13th to the head to confirm.

You are strong and this was caught early. You are clean every where else in your body. As my radiation onc. said to me, since CA is no where else in my body. I am cured. Same for you. Think positive. Your body has been cleansed...

You are a strong woman and will beat this. it's just a small bump in the road. We are all here for you...

If you want to PM that is ok. I'll share all I know and my experience with you.

How much Decadron do they have you taking? I am currently taking .5mg per day. I take it early in the day and it does not interfere with sleeping. As far as your sleeping meds, ask your doctor about taking them with Decadron. Is it Ativan? I want to help you as much as I can...

Just know we are all praying and thinking about you.

Keep us posted...

Hugs,

Karen

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(((Everyone))

I've been on the giving end more often than the receiving end but now I know personally how absolutely essential all this support, the prayers, the laughs, the cyber hugs, all of it is.

When I read someone here is going through a dissapointment or a rought time, I'm always so frustrated by how impotent, how helpless I feel to anything "that really matters."

Now I know sharing your support IS what really matters. I think they could work whatever medical magic they wanted on me and I'd never feel as good as I do with all your friendship. So, thanks more than many of you know for such a wonderful gift.

Mark will be in 1/2 an hour! (YAY!) He's so freaked, so scared, so depressed - I hear it in his voice on the phone. I'd like him to start reading and postin in teh caregivers section and I will promise not to visit there so I won't read anything he wants to get off his chest. No matter hoe he distorted his name, our lacation, and other identifying things, I'd still recognize his posts right away! But he doesn't have all the support or friends around that I do and he needs to be able to unload and get support. I think he'll go for the idea.

The cyber knife and gamma knife people don't usually like to work on you if you more than 3 mets. They're going to look at my MRI and still talk about it, but they doubt their treatment would be the best choice right now.

I talked to my onc and to the radiation clinic and I feel much better about the WBR than I did yesterday. My onc has honestly not seen the kind of problems we've read about in his patients. He cited lots of studies and clinical trials and faxed them to me so I read for myself. He doesn't bs me and he know how I am and what I want out of life and treatment and he assures me he would never encourage me to take any teatment that might be debilitating. I trust him.

The radiation clinic is stat-of-the-art and the people I've talked with there inspire trust and confidence. Very friendly but also give me the sense they are very knowledgeable and skilled. I go tomorrow to meet them and we set up treatment from there. They explained the whole brain is only radiated once with a small dose and then they will target areas. Since you can only have so much brain radiation, they make sure only the areas of the initial tumors received the max now. If later tumors pop up in other places, they can be treated effectly without danger. I felt more relived and am sure to learn more tomorrow. They didn't pressure me at all to make a decision tomorrow.

So, I probably won't psot again until Friday. Don't worry if I don't respond until then, okay! I feel fine, slept like a bay last night withoug any help, the Decadron was already shrinking the swelling late last night and today everyone (including me) sees an overnight improvement in a speech problems! The radiation folks say that's a very good sign that I will probably respond well to the radiation! WOOOHOO! (Not green ink or large font yet :wink: )

Now I'm gonna look around the board and see what's happening with everyone else!

Leslie

P.S. I'm not shy - I'd love some little funny cards or some short letters from anyone who feels like it. I've PM'd my snail mail address to Katie, so just PM her if you want it

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Leslie,

I think you are in Mark's arms right now, so I won't interrupt. I'm so happy to read about the info you are getting from your doctors. You have enough history with each other that the trust is there and has been earned. That counts for so much when evaluating the information they are providing.

I'm so glad you feel better and are ready to kick those little suckers to Mars.

Hug Mark tight and give each other strength,

Will wait until Friday before pestering you again,

Lynne

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