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...

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!

 

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.

 

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.

 

 

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!!!

 

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!

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.

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?

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.

 

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...

 

My friend celebrated her 54th birthday yesterday. She's still hospitalized til the end of the week but her family took her out for lunch and cake and showered her with gifts AND her girlfriend's daughter had her baby yesterday! So, my friend was in high spirits and feeling better. I was so happy to hear that. She was so excited that she wrote me text messages during the night, saved them and sent them to me in the morning!

 

I wish she would just go home and not stay "sick" in the hospital but this is actually her choice as she's scared to be at home since it's kinda far from the hospital.

 

Okay..so now I understand why they would just assume it's all progression for you. Timely fashion, huh? Maybe they'd like to get OUT of routine??? *sigh*. This disease stinks.

Her question is: she hasn't lost her hair. Will she lose it afterwards? She's got two new wigs waiting but no change in hair.

 

She said she will need to wait 3 weeks then they will do a follow up brain MRI and if all is well, she will start xeloda with something else..they haven't decided yet.

 

I can understand you being tired of having bc. It has gone on enough for you. You really have gotten a bad deal with it. You are right..seems like there is always something! I also pray that the chemo will work and you'll get a break from this. You are in my thoughts and my friend sends her regards to you and thanks you ...AGAIN!

 

Hang in there, Ferne.

 

My friend should be returning home today. I'll report back to her about her hair. Interesting. She may be donating wigs very soon!!!! And going to dye the hair that she has growing from her chemo.

 

She will smile at that, I'm sure.

 

Thanks Ferne! Feel good.

 

 

I told her to be patient, that before she feels less foggy she may get foggier/confused. She told me to keep reminding her of that. I feel so badly for her!

 

She knows it's the meds. I told her to be patient.

Thanks Ferne!

 

Her e-mail...it was unclear what she was saying except that she wanted me to see that she has lost all "technical language" as she called it. She didn't have one word typed correctly and she was frustrated but did say that her family has been very patient with her and she was happy to see how they were with her. At least I think that's what she meant.

 

She is a bright woman. She's a social worker and treated patients privately as a therapist until all of this. She was supposed to return back to work part time last month.

 

I know it's the rads but this is really hard to take. She is dependent on me to understand because I'm a bc survivor. I do understand. I just am having a hard time with this.

 

Ferne..did you have this problem, too?

 

Thank you so much...I'm so sorry about your friend. that must have been very difficult...

How are YOU?

 

My friend is doing okay. She's a trooper. She's having some problems with the lung mets and is coughing a lot. She was able to text message me better yesterday but when I spoke to her on the phone, along with a bad connection, she was hard to understand and she told me she was a bit confused.

 

But, she's managing. Now the cough is upsetting her.

 

Clumps of hair started falling out.

 

I hope to see her tomorrow, if I can. She lives far from me.

 

Thanks for asking...

 

I hope you are doing okay.

 

I remember being so upset and angry. So, because of this, I can relate to your relief at being back on the chemo.

 

I wish you well.

 

I did get to visit my friend. She has no voice, or barely, and this seems to be a se she gets when taken off the steroids. She's home and done with WBR and on Xeloda which has caused sores on her mouth.

 

She has little balance and walks slowly and carefully but she is a TROOPER. She refuses to be sick and wants to do whatever she can. Her doctor told her to rest her voice, she got home and CALLED me on the phone!

 

She has good support at home with her dh and family members. We are waiting til she gets to do the MRI and see if the WBR worked.

 

Her lungs were cleared out and she said she feels better than she sounds. Maybe the xeloda will help her.

 

Be well, Ferne.

My friend just told me today that she is having a hospice nurse come in to help her and support her more because she's having a really hard time. She said she can't do anything at all. She sleeps mostly. I send her text messages on her cell so that I won't bother her and just to let her know I am thinking of her. Then she calls when she feels like it.

Can I still tell her she'll see the light at the end of the tunnel??? She's scaring me...