Luigi12
11-23-2003, 06:07 PM
Hello all,
I know I haven't been posting much lately but I have been reading when I can. And I finally have some positive news about possibly getting rid of this giant cell foreign body reaction (after 21 years). I'm starting low dose radiation therapy next week. It should kill the remaining giant cells, preventing them from causing further damage--more bone growth, nerve damage, even holes in the brain. Because it works well for malignant cells, and these giant cells seem to mimic a malignant cell in many ways, the docs believe that this will work. It won't reverse any damage already present--probably won't help the pain much either. But to know that there won't be further damage is such a relief that I'm willing to take the risks that the radiation presents. (Could turn the cells malignant-5% chance; could take out the rest of the vision in my left eye-probably will. But I still have one good eye.)
I really am relieved. And a little scared. But it beats years of surgery to debride tumors, scar tissue, and biopsies. So wish me luck. I'll let you know how I do.
Stay well, everyone. :wave:
Donna
I know I haven't been posting much lately but I have been reading when I can. And I finally have some positive news about possibly getting rid of this giant cell foreign body reaction (after 21 years). I'm starting low dose radiation therapy next week. It should kill the remaining giant cells, preventing them from causing further damage--more bone growth, nerve damage, even holes in the brain. Because it works well for malignant cells, and these giant cells seem to mimic a malignant cell in many ways, the docs believe that this will work. It won't reverse any damage already present--probably won't help the pain much either. But to know that there won't be further damage is such a relief that I'm willing to take the risks that the radiation presents. (Could turn the cells malignant-5% chance; could take out the rest of the vision in my left eye-probably will. But I still have one good eye.)
I really am relieved. And a little scared. But it beats years of surgery to debride tumors, scar tissue, and biopsies. So wish me luck. I'll let you know how I do.
Stay well, everyone. :wave:
Donna
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saaraah
11-23-2003, 07:47 PM
im glad to hear that there's something out there that might help you.. i want to wish you a ton of luck. :)
im hoping that the radiation will be able to halt the destruction..
take care :)
- saaraah.
im hoping that the radiation will be able to halt the destruction..
take care :)
- saaraah.
Cymy Sue
11-24-2003, 05:15 AM
Donna,
I'm so happy to hear that you have been offered some help. I will be hoping this treatment goes well, rids your sytem of these cells and "WON"T" cause any further problems.
Hopefully, with stopping the GC reaction and knowing the surgeries you faced in the future will no longer be needed, some pain and discomfort may ease up for you.
You will be in my thoughts and I do wish you the best,
Cymy Sue
I'm so happy to hear that you have been offered some help. I will be hoping this treatment goes well, rids your sytem of these cells and "WON"T" cause any further problems.
Hopefully, with stopping the GC reaction and knowing the surgeries you faced in the future will no longer be needed, some pain and discomfort may ease up for you.
You will be in my thoughts and I do wish you the best,
Cymy Sue
Elaine
11-24-2003, 11:09 AM
Donna,
I haven't been posting either but I had to reply to your post. I am so glad you feel you have something postive to look forward to. I know things have been pretty rough for a long time. Your outlook on life has always inspired me. You seem to always find a "bright" spot when it seems things are as bad as they could ever be. I guess that is what a person calls "hope" and "faith". I have noticed that at times in my life, I felt like I was at the end of my rope. A post like yours changes my attitude totally. When I get to feeling sorry for myself, (and I do at times) I think of others who have it a lot worse than me and it seems to pull me out of the pity mode I am in. I have thought about you a lot and wish only the best for you. Please let us know how things go. My mother is in heaven and I know she is watching over us all!!!
"God Needed Another Angel To Help Pour Out The Rain". That was her song. I miss her so much! :angel:
Take care and God Bless,
Elaine
I haven't been posting either but I had to reply to your post. I am so glad you feel you have something postive to look forward to. I know things have been pretty rough for a long time. Your outlook on life has always inspired me. You seem to always find a "bright" spot when it seems things are as bad as they could ever be. I guess that is what a person calls "hope" and "faith". I have noticed that at times in my life, I felt like I was at the end of my rope. A post like yours changes my attitude totally. When I get to feeling sorry for myself, (and I do at times) I think of others who have it a lot worse than me and it seems to pull me out of the pity mode I am in. I have thought about you a lot and wish only the best for you. Please let us know how things go. My mother is in heaven and I know she is watching over us all!!!
"God Needed Another Angel To Help Pour Out The Rain". That was her song. I miss her so much! :angel:
Take care and God Bless,
Elaine
DianeTMJ
11-24-2003, 01:07 PM
Good morning Donna :wave:
Oh Donna, I am so happy that they have offered you a treatment that is going to help you. I know that it has been such a long road for you. We will be keeping you in our prayers as you begin your treatment, during treatment and post treatment. At the end of treatment, we will be able to celebrate your end result, a great successful treatment.
You have a good day :)
(((( Donna ))))
DianeTMJ
Oh Donna, I am so happy that they have offered you a treatment that is going to help you. I know that it has been such a long road for you. We will be keeping you in our prayers as you begin your treatment, during treatment and post treatment. At the end of treatment, we will be able to celebrate your end result, a great successful treatment.
You have a good day :)
(((( Donna ))))
DianeTMJ
Luigi12
11-24-2003, 01:21 PM
Thanks to all of you who responded with such enthusiasm. It means a great deal to me that I can post here and know others understand immediately the issues of pain, weariness and almost unending treatments that never seems to work. If this does work--and I hope fervently that it will--perhaps others will be able to use it as well. Wouldn't that be something?
I went thru the initial setup this AM. It was difficult but will be worth it in the end. I'll keep you posted (pardon the pun) regarding the progress over the next few weeks. Have a Happy Thanksgiving Day.
Donna
I went thru the initial setup this AM. It was difficult but will be worth it in the end. I'll keep you posted (pardon the pun) regarding the progress over the next few weeks. Have a Happy Thanksgiving Day.
Donna
CherylLynn24
11-24-2003, 06:52 PM
Hi Donna,
That's wonderful news! I'm so happy for you. Miraculous things happen during the Christmas season and I truly think that this will help you. Please keep in touch and let us know how things are going for you. You're in my prayers. Enjoy your Thanksgiving!
Take Care,
Cheryl
That's wonderful news! I'm so happy for you. Miraculous things happen during the Christmas season and I truly think that this will help you. Please keep in touch and let us know how things are going for you. You're in my prayers. Enjoy your Thanksgiving!
Take Care,
Cheryl
totallyconfused
11-24-2003, 09:06 PM
Hi Donna,
I am so happy to hear that the doctors have found something that could help. I truly wish you all the luck in the world. You are in my prayers.
TC
I am so happy to hear that the doctors have found something that could help. I truly wish you all the luck in the world. You are in my prayers.
TC
Arleen
11-24-2003, 11:31 PM
Hi Donna:
I'm so glad to hear that you've found a treatment that may help you. That would be wonderful. I will add to you to my prayers, and with so many people on the board here rooting for you, this just has to work.
Please let us know how you're coming along. Take care of yourself and best wishes.
Arleen
I'm so glad to hear that you've found a treatment that may help you. That would be wonderful. I will add to you to my prayers, and with so many people on the board here rooting for you, this just has to work.
Please let us know how you're coming along. Take care of yourself and best wishes.
Arleen
shell389
11-25-2003, 03:07 PM
Donna,
I am so happy for you that you found a treatment. I will be praying for a positive outcome for you. You are such an inspiration with your positive attitude. Take care and have a Happy Thanksgiving! :)
I am so happy for you that you found a treatment. I will be praying for a positive outcome for you. You are such an inspiration with your positive attitude. Take care and have a Happy Thanksgiving! :)
SanityLost
11-25-2003, 10:34 PM
Donna,
The news of your treatment has made my day.
In a place where too many people give up hope and feel that no one has it so bad as they... You are a true inspiration! You are an amazing woman. Fight the good fight and you shall overcome the opposition. God bless you and have a wonderful Thanksgiving!
S.L.
The news of your treatment has made my day.
In a place where too many people give up hope and feel that no one has it so bad as they... You are a true inspiration! You are an amazing woman. Fight the good fight and you shall overcome the opposition. God bless you and have a wonderful Thanksgiving!
S.L.
Elaine
12-07-2003, 03:29 AM
Donna,
I know it has only been a couple of weeks but wondering how your treatment is going? Hope everything is going ok and want you to know my thoughts and prayers are with you!
Take care,
Elaine
[removed]... this is no online contact type thing, I hope this is according to healthboard rules...If not, see ya all later....
I know it has only been a couple of weeks but wondering how your treatment is going? Hope everything is going ok and want you to know my thoughts and prayers are with you!
Take care,
Elaine
[removed]... this is no online contact type thing, I hope this is according to healthboard rules...If not, see ya all later....