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I could use some word of encouragement


Carleen

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Today is my husband's birthday. His 33rd birthday to be exact.

And today we received the worst present I think there could be. Our oncologist informed us this morning that he has found at least 8 mets on my husband's brain.

I feel like my world is crashing in all over again. This is my beautiful husband's beautiful and wonderful brain. I've heard too many horror stories where brain mets spell the final few moments together. I know I myself have posted to people that brain mets can be dealt with. "Stay positive, don't give up hope". But now that I am here, I just can't seem to do it. I am so scared. I look in his eyes and I see that he is so scared too. He is so incredibly scared and sad, and tells me he doesn't want to die. My heart has burst into a million tiny shards of glass and the pain is enough to kill me.

Oh my God!! brain mets... please God, no more.

I've asked about Gamma Knife and was told that it wouldn't be an option for two reasons. 1. there are too many 2. the mets are in the membrane surrounding the brain and gamma knife only does internal brain matter mets.

Surgery is also out, as they are numberous and on all sides of his head.

He is looking into WBR right now and will get back to us in a couple of days with the concensus.

Can someone out there who has had mets and made them disappear with radiation please respond to me and let me know again that it is possible. Give me some hope.

Please pray for him. I need for him to beat this. I live for him and him alone, as he is the love and light of my life. Without him I am nothing and want to be nothing. I am just in such deep despair I can't see past this pain.

Thank you

Carleen

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Carleen

I am so saddened by your news. Two people come to mind about brain mets, but I am sure there are others. GinnyD's hausband had brain mets and StandforHope's husband had nurmerous brain mets over a year ago-- he had WBR alone, I think, and just this past week end he took a 400 mile motorcylce trip, alone--400 miles each way! And he did it all in three days! He also works full time. There is hope Carleen.

Did Keith have symptoms? I looked at his profile and didn't see when the last brain imaging had been done.

You and Keith remain in my thoughts and the thoughts of many.

love and fortitude

elaine

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Carleen, so sad to read your post. This has to be such a difficult time for you. Very scary. Please keep us posted on the plan for him and how he is responding. Meanwhile you bothe are in my prayers. Donna G

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Oh Carleen, I am so sorry to hear this news. Many prayers coming your way. I know you will hear from people that have had success with WBR - please don't give up hope. I just feel like crying, you guys are so young to have to be going through this. I am pleading with God right now. Please stay with us and let us help you in whatever way we can.

Love and hugs,

Nancy B

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Carleen,

I'm in tears hearing about this news and the pain you and Keith are in. I am sure you'll hear encouragement from others in the medical sense (people who have gotten through this). I can only give you moral support and let you know you're in my thoughts and prayers.

(((((((hugs))))))),

BeckyCW

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Carleen,

First of all, I am SOOOOO glad to hear from you. We have all been worried since we didn't hear anything from you for so long. Here's a recent post I put up on my husband's brain mets. At the end of the post is the link to the whole thread and there is a lot of helpful information there.

This is going to be one of those decisions that only you and your husband can make. The gamma knife is probably the best way to go for now to get rid of the one tumor. As far as wbr is concerned, you are going to get a lot off different views. Some people do fine with it, and some don't. My husband did ok. He did get tired, got a very dry scalp and a little confused and slow to respond. The confusion really scared me, but it went away in a few weeks. It's been a year now since the wbr and he doesn't show any signs of trouble with confusion, etc. He started with wbr because there were too many mets to do gamma knife initially. Later, in Nov. 2003 he had Novalis (similar to gamma knife) to the remaining 6 mets and currently still has 4 mets, but they are not giving him any problems at this time. I forget the exact sizes, but I think the largest is 15 or 17 mm now, and the other three are very small.

I'm not quite sure what you meant by this questions:

Quote:

does it really prevent spread?

If you mean does the gamma knife prevent spread, I think the answer would be no. The gamma knife is a type of stereotactic radiosurgery (radiation) that focuses on that one met and zaps the life out of it (hopefully). It's believed the mets are spread to the brain via the bloodstream, and therefore, that's why wbr or pci is offered to hopefully kill any tiny mets that can't be seen.

If you meant something else preventing spread, I'm not sure what it was that you were referring to.

Karen, the lady that Elaine mentioned (Karen335), will probably be on here eventually and respond to you. She had gamma knife to one met, I believe, with a very good response - I think I recall that she had 100% reduction in the tumor and has not followed up with wbr, but I could be wrong, so it's best to hear it from her. I'll send her a PM and ask her to read your post.

Here's the link to the thread:

http://www.lchelp.com/community/viewtopic.php?t=10836

Also, he did just complete a 3-day motorcycle trip and chalked up 1400 miles total and is ready to go again. THERE IS HOPE, HOPE, HOPE!!!

Love,

Peggy

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Carleen, My heart goes out to you , I am so very sorry about this set-back for you and your Dear husband. David was diagnozed with brain mets yesterday so I know exactly how you feel. And, whether our loved ons are 33yrs old or 64, it still has that awful frightening ring to it! My thoughts and prayers will be with you both and I am hoping the Oncologist can get treatment going as soon as possible. Good Luck to you both. Paddy

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Oddly enough, I JUST now got off the phone with Melissa Zagon, a co-founder of LUNGevity Foundation (www.lungevity.org). The reason I mention this is because she was diagnosed 4 years ago with Stage IV non-small cell lung cancer that had spread to her brain. She had the brain mets treated with radiation, she had chemo, and here she is 4 years later.....not cured, but maintaining very nicely (and running a great non-profit organization at the same time!). (The brain mets aren't a problem anymore, the plueral effusion fluid is)

She is living proof that brain mets CAN be taken care of and all hope is NOT lost.

Carleen, please know that you and Keith are in my prayers always, continue to seek aggressive treatment and continue to keep that unwaivering faith that you always possess.

Heather

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Carleen,

my heart is absolutely broken for you. I am not sure why God gives some people more than they can really handle and right now your overloaded.

mom had 7 brain mets and all were gone after 15 wbr treatments. Dad had cancer in the lining of his brain in the end and we never tried wbr on him since his condition could not handle it.

my sisters cancer has not progressed to that point and I pray it doesn't because I could not take one more death either.

push for the wbr and I will pray for Keith.

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Dear (((((((((((((Carleen)))))))))))))),

I am a real believer in the power of faith combined with prayer. Never, Never give up hope because without hope feel powerless. . Sometimes we let doctors have too much power to rob us from that hope or we give our own power away to them and believe in only medical reasoning.. I have a lot of respect for doctors but science can't explain miracles and they do happen..

Carleen, I will pray for you and your husband. Please hold on to your faith that you will get through this next hurdle.

My thoughts are with you both, Shelly

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Carleen sweetie, I am so sad and upset about this news. Keith is way too young for this to be happening.

Earl was first dx'd with LC due to a brain tumor, one tumor about the size of a grape I think. He had surgery and then WBR. The WBR kept the brain tumors at bay for almost 2 years. With what is happening in medical research today, 2 years offers you a lot of time for new and exciting treatments to come out.

Carleen, put a smile on your beautiful face when you are with Keith. Whether you have 1 day (the Becky beer truck) or 100 years together, make each minute a happy minute together.

You are in my thoughts often and we all worry about you.

Love,

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Carleen,

I am so sorry for the recent news, my heart is breaking for you, this isn't fair, it's just not fair. Listen to Hebbie...there are people out there with brain mets that are doing good. I think I read that Lance Armstrong had multiple brain tumors...if I'm remembering correctly he had about 20 of them. I will continue to keep you and Keith in our prayers.

Thinking and Praying for you...

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If am so sorry you and Keith have to face this latest assault. Carleen, one of the options that you may want to check into for treatment is Intrathecal Chemotherapy. One of our members, gdpawel, has written what appears to be a balanced assessment of this form of cancer treatment. It isn't a benign treatment, but having cancerous tumors form in the meninges would require treatment of the cerebral spinal fluid, I would think. I'm not a doctor, but I have a single Meningioma, and I was told if it were malignant I should consider Intrathecal Chemo. We need to know the positives and the negatives before we can make balanced decisions about treatments.

I hope you will consider second opinions on the options you've been given.

I am so very sorry that you had to be given this information on your husband's birthday, or any day for that matter. And I have hope for you both that he will find a treatment plan, and that it will be successful.

You are both in my prayers, each day.

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Although the end result with TBone certainly wasn't what we'd have liked, it wasn't the brain mets that were the main problem. His original LC diagnosis was made because of symptoms displayed by three brain mets, one of which was very large. He underwent 15 WBR treatments, and actually withstood them extremely well. While the WBR didn't make the mets disappear completely, it did shrink them considerably, and he never again displayed any symptoms related to them. It was all the other mets that continued to cause problems.

I won't even tell you not to give up, cause I know you'd never do that anyway. Please express my warmest birthday wishes to Keith, and know that I'll be keeping you both in my thoughts and prayers.

Blessings,

TeeTaa

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I'm so sorry to hear your news. I wanted to add that my mother currently has brain mets- 20 of them. 6 of which were recently treated with stereotactic radiosurgery (not sure what the difference is between that and Gamma Knife) But they treated the ones that were large enough to get and left the rest. Maybe it's worth a second opinion.

My mom had WBR in 1999 and had a reoccurance in 2003 for the first time.

My thoughts and prayers are with you.

Amy

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Carleen,

I had been looking for your posts, but sorry to have found you in this situation. As tears spill on to my desk at work, I try to think of excuses for my appearance. I wish that I could make it all better for you both, and am so sorry that you two are having to endure such a burden at such a young age. But if you knew that Keith would wind up with such a horrible disease, it would not stop you from loving him the time you have. I am only sorry that this disease may rob you of the years deserved. He is a fighter, and as strong as I have seen. I pray sweet Jesus for more time and a cure.

Amen,

Cheryl

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