KathleenC Posted August 23, 2004 Share Posted August 23, 2004 My mom was told she had brain mets, no specific number. I see that alot of people here have brain mets, but are functional. My mom is highly confused, can't walk very well on her own. Definitely could not use the computer. Is this how mets affect people? She stopped taking Dexamethasone a week ago and has gotten much worse. Nothing is consistent. I'm sure she will never be "normal" mentally again. Has anyone had an experience similar to this? I know I ask alot of questions, but I really need to know.. She has stopped all tratment except Morphine at this time, and will not be getting any more radiation/chemo. Quote Link to comment Share on other sites More sharing options...
MJ Posted August 23, 2004 Share Posted August 23, 2004 my mom to was diagnosed with brain mets earlier this month, and she is started wbr today (for 3 weeks/ 5 times a week). my mom gets a bit dizzy, especially when she sits down and stands up again, so i make sure that i walk with her. i've heard that a common side effect with radiation is that people can get really disoriented and confused, but the degree varies from person to person. but i have also heard that the symptoms do subside, more for some, less for others, but it's really not predictable. i have also heard that it often takes some time for the symptoms to subside. you may want to talk to your mom's onco about her condition. he may have better answers for you. as for the dexamethasone. she was weaned off of it, i'm assuming. you are not supposed to cut that out of the med regime all at once. i pray that your mom's condition gets better day by day, even if it may take some time. i definitely know that she is not alone in this and that her symptoms are not uncommon, so don't feel alone in this. please take care. God bless, mj Quote Link to comment Share on other sites More sharing options...
karen335 Posted August 23, 2004 Share Posted August 23, 2004 Kathleen, I had a brain met and it was removed surgically in April 2004. I was on Decadron, the same as your mom. It reduces the swelling in the brain and also gets rid of the nausea. I dodn't know how much your mom is taking as far as dosage. I was on 2mg per day. I also had a hard time walking, I kept loosing my balance and was sick to my stomach. I was on the Decadron for five months and you have to be weaned off of it, you cannoot just quit taking it. Talk to your mom's doctor. Try reducing the dosage, it may help her. It worked for me. Doctors want to give you higher dosage because they say that is protocal, well this is my body and I know how I feel and how a medicine makes my body feel. It's easier to increase a dosage if necessay, but if you take a higher dosage, it's harder to get it out of your system. Start low and go higher if needed. How many mets does your mom have? I had stereotactic radiation after my surgery. You might want to check into Cyberknife also. Check with the radiation oncologist about these procedures. Check out all options before deciding on treatment. Hope this helps you a bit. I have added your mom to my prayers... God Bless and many prayers for her, Karen Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 23, 2004 Share Posted August 23, 2004 Kathleen, I may be wrong, but I thought people stayed on the steroids at least until the WBR is finished. Why did they take her off of them? That doesn't sound right to me. Symptoms of brain mets depend on location and of course size so there are a myriad of possible scenarios, but you might want to call the DR immediately and find out about the steroids. Brain swelling can be fatal. elaine Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted August 23, 2004 Share Posted August 23, 2004 Kathleen, my mom had about 6 brain mets that I knew of. They were taken care of with WBR. Dad got cancer in the lining of his brain, no "met" spot to speak of. Dad never got to have WBR but his symptoms were very confused, forgetful, walked unsteady. and really high fever that could not be brought down. Moms only symptom was she could not make a fist. i guess it does depend on where they are. Is your mom choosing no more treatment or are they stopping until the medication starts to help her symptoms?>? Quote Link to comment Share on other sites More sharing options...
NowakowDA Posted August 24, 2004 Share Posted August 24, 2004 Mom was on 4mg of Dexamethason twice a day for a month. She had two brain mets. The location and size of the mets are real important. Mom's were in the back of her brain. One was stable but the second one was still growing. When they started her wbr. Her Dr said it was important to treat the brain mets first. She had 14 wbr treatments. The bigest side effect she had was the fatigue. I feel that the steriod aggravated her condition. She got to the point where she slept most of the time. When she was awake she was barely conscious. She had a blank look on her face toward the end of the treatments. She was confused and disoriented. She could not feed herself. Her balance gave out about the time of the 12th wbr treatment. By the end she had lost control of both her bladder and bowels. There was a variety of opinions about what caused this. One Dr. thought it was the tumors in her brain. Another thought it was the combination if steriod and radiation. Her pcp (primary care provider) thought the tumor in the lung had reduced her lung capacity to such a level that her brain was starting to suffer from oxygen starvation. Don Quote Link to comment Share on other sites More sharing options...
stand4hope Posted August 24, 2004 Share Posted August 24, 2004 Kathleen, I agree with Elaine. They don't usually take you off decadron while you're getting the radiation. They normally gradually wean you off after wbr is finished. Do you know why they took her off? I think that is something very important to ask. Keep us posted, please! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 24, 2004 Share Posted August 24, 2004 Different parts of your brain control just about everything, personality, memory, logic, how to move your leg, arm, reflexes, breathing, heartbeat. Where a tumor is in the brain will dictate the symptoms that are possible. So as you can imagine, the possiblilities are nearly endless. With treatment , and shrinkage however the symptoms should diminish also. Donna G Quote Link to comment Share on other sites More sharing options...
J.C. Posted August 24, 2004 Share Posted August 24, 2004 I don't know about brain mets, Just want to add some prayers for your mother. J.C. Quote Link to comment Share on other sites More sharing options...
berisa Posted August 26, 2004 Share Posted August 26, 2004 Kathleen, Did your mom stop taking Decadron on her own decision or instructed by doctor? Decadron is steriod that can't suddenly stop taking and must be taken according to what doctor tells you. Decadron will ease the headache much which caused by the brain mets. I know it will be horrible if not taking Decadron bcoz it will make one suffering from heavy headache. I suggest to consult with the neurosurgeon or oncologist. Take care and you must be strong to support your mom. Quote Link to comment Share on other sites More sharing options...
KathleenC Posted August 26, 2004 Author Share Posted August 26, 2004 She was weaned off by her doctor, in 5 days... Shes taking some pill now that will hopefully bring her feet down to normal size.. Quote Link to comment Share on other sites More sharing options...
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