treatment for brain mets |
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3neg 
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 Topic: treatment for brain metsPosted: Feb 06 2008 at 5:37am |
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Help!
My friend, a BRACA TNBC, who has lung mets, was diagnosed today with brain mets. She was to start xeloda. Tomorrow she meets with her onc about this new event. Any advice? What is done? What can I tell her? She can't wrap her head around this one... She was on a trial and took Carbo and Taxol with Avastin. Knowing that more was growing in her lungs, they were going to give her xeloda next. Now this new mets...
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fd411
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Posted: Feb 06 2008 at 5:46pm |
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I just finished whole brain rads for my brain mets. I guess the treatment depends on her mets. How many, where they are, etc. If it's a few areas they can target, they might just concentrate on that area. If there are alot, they might do whole brain rads.
The first thing would be to discuss the pathology report to decide what the best course of treatment is for her. I'll be honest. This treatment for my brain mets has been the hardest so far for me in my treatment so far. Worse than any chemo I ever had. It just made me really foggy and weak. The decadron that they had me on for inflammation messed my body up. I'm getting my strength back, but I still get really tired and foggy. It won't last forever. Today I felt like I'm starting to improve. I was going to start Ixempra but got brain mets and had to take care of that. I'll start that chemo later this month. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 07 2008 at 10:41pm |
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I just spoke to my friend. She asked about side effects and her onc didn't answer her. She's on the decadron already and not liking it. I knew there were side effects and promised her I'd find out more so that she will be prepared. She honestly thought it would be easier than chemo and I told her I didn't know exactly.
Just that..when I was doing breast rads I saw others getting wbr and I saw that they were not all that comfy...
How long are you out of the WBR? Like..about how long is it taking you to lift the fog?
You sound so great, Ferne. I hope you continue to heal and the next chemo treatment will be good and easy for you.
Thanks so much Ferne!
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 08 2008 at 1:50am |
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Hi Deb,
I'm still foggy, but I'm still working full time too. I just have to take breaks more often while I'm there. I'm really puffy from the decadron and it makes my skin hurt when you touch it and my joints are pretty achy. My last treatment was January 24th and I fiinished the decadron on Feb 5th. I'm still having headaches, blurry vision and wobbliness and I still get confused sometimes, so I have to wait a week to see if it gets any better. If it doesn't, they want to do another MRI. Some days, your friend will be so tired, and then there will be these spurts of energy and clarity...it's kinda unpredictable. Then there are times when I don't even have the energy to even talk to people. It's just too overwhelming to try to comprehend. I guess the fog lifting depends on the person. I hope your friend has a better tolerance fror the treatment than me. My body always has tolerated chemo fairly well, and always became weak from rads. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 08 2008 at 6:56am |
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Thanks Ferne..
What are the rads themselves like? She asked me. She goes in on Sunday for her first appt. She wants to know what to expect. They told her nothing.
Your information and experiences will really help her and others. Were you prepared for what was going to happen? She asked but they gave her no information.
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 08 2008 at 8:16am |
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Hi Deb,
I first had to do the measurements of my head. Then they molded the mask I had to wear for the treatments. It covered my entire face and clamped into position on the bed. It was very tight fitting and uncomfortable. They actually asked me if I wanted to get started with my first treatment right then. As I got through the treatments, my head became too swollen to put the mask on, so they marked me and I had to stay really still. The rads itself didn't take long at all. I remember I would smell Iodine when the machine started. The tech told me it was ozone that I smelled. I had a total of 10 treatments. I was totally clueless as to the procedure. I didn't have to change clothes, my hair fell out (what was left of it from chemo), At the place I go to, I saw the nurse and doctors much more that I did with breast rads. I saw someone almost everyday They also told me not to drive when I was getting the rads. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 09 2008 at 1:13am |
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Wow, Ferne. Sounds pretty difficult. I am going to forewarn her so that when they talk to her tomorrow she will have heard some of this and it will be easier to absorb...and she'll understand that this is how it is when she's doing the rads.
She knows her hair will fall out This will be her third time having hair fall out so she humored herself and just bought 2 new wigs...
I will tell her this about being watched carefully. I already told her she needed somebody there with her every day but she's not driving anyway right now.
Ferne..thank you so, so much. I will keep you posted about her. I so appreciate you sharing this with me.
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 09 2008 at 4:40am |
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Yes,
Please keep me posted. Olivia on bco completed wbr as well and we've been pm'ing each other about our experience with it. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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sunbearz
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Posted: Feb 09 2008 at 7:48pm |
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There are chemos and radiation that can knock it out.Trust in what we have to battle it.There is proof that it works. Were all here for her.
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Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
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3neg
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Posted: Feb 09 2008 at 10:48pm |
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Thanks Jill.
Ferne..thanks! That's good that you can share your experiences with Olivia as well. I want to tell you that I told my friend all the things you said. I copied it all down and called her up. She is extremely appreciative of all the info. Thanks so much..from her and me both.
I will hear from her later. She should be there now getting set up as I write. Have had sleepless nights. I'm worried about her but I spoke to her yesterday and she is in good spirits. She's probably doing better than I am!!! Edited by 3neg - Feb 09 2008 at 10:50pm |
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Laughter is the sun that drives winter from the human face.
---anonymous |
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BrendaF
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Posted: Feb 10 2008 at 5:48am |
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3neg, you are a good friend. Are you a BC survivor yourself, or just posting on behalf of your friend?
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fd411
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Posted: Feb 10 2008 at 9:10am |
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Hi Deb,
I just wanted to let you know that aside from the weakness in my legs from the decadron, I'm starting to get my energy and strength back. I still have some headaches, but I can take Tylenol for it and most of the time that works fine. I've had so far 2 good days in a row. That's a first. Please tell your friend that I'm starting to see some light at the end of the tunnel, so please be encouraged that it will not last forever. Edited by fd411 - Feb 10 2008 at 9:11am |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 11 2008 at 3:11am |
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Great news, Ferne! I'm glad to hear you are beginning to "see the light"!
Brenda..I am a BC survivor. I was diagnosed in 2005 with triple neg. I met my friend online when she was looking for help with her mets to her lungs and learned she lived about an hour from me. We've been friends ever since.
She has had 2 WBRs. She was hospitalized yesterday after the first treatment because she was feeling really bad. They thought that it was either from her lung mets which seem to be causing a lot of chest pressure in recent weeks and she has had progression there, or it's the decadron. Whatever it is..they are keeping her under watch for now until they can figure out what is causing the problem. She had a bad night but was in good spirits this morning and said she was feeling a whole lot better. She has lots of visitors and I'll be there tomorrow morning. Too many people pounced in on her today...
Ferne..keep feeling better and better. I'll report that to her tomorrow!
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Laughter is the sun that drives winter from the human face.
---anonymous |
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3neg
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Posted: Feb 12 2008 at 5:54am |
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Ferne..I visited my friend today who told me to tell you THANK YOU for all your help and when she gets home and back on the computer, she will personally thank you.
She had her 3rd WBR today. Still hospitalized. She feels safer in the hospital. She's got family with her round the clock. She's very nervous. Side effects right now seem to be pins and needles in her hands. Her doctor said he'd try her on something against what seems to be neuropathy. She's suffering from it. Her head aches a touch and she is very tired. But she's eating! She seems to be okay...just kinda needs people around her all the time to get her through the emotional part of it. The physical part doesn't seem to be that bad...maybe the worst is yet to come.
That's the update today...
Ferne..hope you are doing well today.
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 12 2008 at 9:33am |
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Hi Deb,
I'm glad your friend has lots of people around. I bet it provides some comfort. Like a dummy, I worked through it. If I had to do it again I'd take the time off!!! I also have a weird kind of neuropathy. Still have it although it's better now. My feet would get very hot and I would not be able to feel them sometimes. My hands would get a little tingly too. An onc nurse told me to take Vitamin B6 when I had it from chemo, but it didn't seem to work so well for the wbr neuropathy. Your friend will eat!!! The decadron will make sure of that. I couldn't stop eating, but that's calming down now thank goodness My head ached too (still does) and I became exhausted as the treatment went on, but I must honestly say I felt the worst after the treatment was over. So it seems like what your friend is going through is kinda normal with the side effects. Please send my regards and tell her to hang in there! |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 12 2008 at 9:53pm |
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Thank you, Ferne! Hot feet, huh? hmmm....
She just text messaged me that she had a sleepless night and hopes to rest this morning.
Did they give you anything for the neuropathy and if so, what? The doc said that the neuropathy is normal because the rads affect the nerves. But that should resolve itself over time. So...that's good...for you, too!
She's eating but not stuffing herself. Of course, she's in the hospital so she doesn't like the hospital food and hasn't yet requested any cravings as she is afraid to eat too much because she thinks the steroids are giving her gastro problems.
Oh..I see you wrote Vit B6. It didn't work though..but I'll mention it to her anyway. She said that sometimes if she takes something it psychologically works for her so....
I told her you worked straight through and she has no idea how you did it. Me neither!
I will send your regards to her. She already knows your name!
Be well and hope you are feeling better as the days go by...I know you said it seemed worse after the treatments but...
Have you started the chemo yet?
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 14 2008 at 12:59am |
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Hi Deb,
Your friend should be almost done right? No rads on Friday and Saturday? The B6 worked for the chemo (taxotere and abraxane) related neuropathy, but not the rads neuropathy. The decadron messed up my sleep big time. There would be a period of about 3 hours where I'd be close to unconsciousness, I'd be so tired, nothing could wake me up. Then when I'd wake up, I'd be awake for a long time. I'd be really tired, but not able to sleep. It was really annoying, but my sleep patterns are returning to normal. In general, I'm doing much better than I was 2 weeks ago. I see the onc on the 22nd, but I know I need to start chemo soon because I'm having symptoms and pain in the lung and skin area again. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 14 2008 at 3:11am |
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Hi Ferne...
Actually, this is her first week of WBR. She will be off of it Friday and Saturday and then back on for the second week. She sent me a text message this morning that she was feeling yucky. I understood she didn't want to talk to me because I sent her a text back and she didn't answer it. Maybe she got some sleep. I hope so. I'll try her again later.
Yes..I understood about the B6 but maybe it would work for her..ya never know!
I'm sorry you are getting pains again, although it sounds like you are recovering well from the WBR so you will be strong enough for the chemo. At least you've got one thing that seems to be progressing in a positive light, right? Keep smiling, dear Ferne. I'm rooting for you!!!
Question...you have your mets listed in your signature with "more nodes". What do you mean? What nodes are getting affected? Do they see the nodes in a PET scan?
Feel good, Ferne.
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Laughter is the sun that drives winter from the human face.
---anonymous |
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fd411
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Posted: Feb 14 2008 at 4:26pm |
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Hi Deb,
Yes, I understand feeling yucky. There were times when I didn't want to talk to anyone. I just wanted to lay down and not be disturbed. I so glad I'm feeling better. It would be horrible to feel that way and have to do chemo. I don't think I could handle it. More nodes means that there was progression in the mediastinum and paratrachael nodes; They increased in number and size, then lumps popped up in my neck nodes and collarbone, and in December, I got a bunch of enlarged lumpy nodes under the non bc arm while on Abraxane. But the most recent CT scan shows that the Abraxane shrank the lung mets and reduced the size and number of the mediastinum, paratracheal, neck and collarbone nodes. That's weird that some nodes would shrink and other ones would pop up at the same time. All of the nodes could be felt except for the ones in the chest and lung areas. Those were seen by CT scan. |
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Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
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3neg
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Posted: Feb 14 2008 at 9:47pm |
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hmmm..that IS weird that the chemo would shrink others but more popped up. It's sometimes so mysterious.
Is it possible that they aren't cancerous but rather fighting the treatments or I don't know...
My brother, on a routine chest x-ray found an enlarged node. They did a biopsy and it was some non-cancerous condition that doesn't need to be treated. He was happy about that but when they did the biopsy they injured his vocal chords and he can only speak in a whisper. He's having a prosthesis put in to stimulate the vocal chords at the end of the month.
That is O/T but your nodes reminded me of that. I guess with mets, though, they assume it's the cancer...
I am also very glad you are feeling better and can get on with the chemo treatments, which I hope go well for you.
Keep us posted, as I'm sure you will...
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Laughter is the sun that drives winter from the human face.
---anonymous |
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