Brain Mets Sisters

Brenda,

Sorry to respond so late as I've been traveling and not checking in. Not sure why your doctor wants to wait for another scan before treating your brain. Is that the RO who suggested that or your MO? Luckily, you only have one small spot. I would think they'd want to just gamma or cyber knife the thing while it is still so small.

Glad to hear you are feeling generally well! I'm still dancing and doing yoga, however, each Xeloda cycle seems to leave me more fatigued. I try not to plan too many things on any single day.

Hugs, Susan

anyone know about bad taste in mouth from whole brain radiation? How long does it last? Thx

I have a burnt taste in my mouth and mucas at back of throat occasionally. Has anyone else? Asked radiologist to no comment given

Smiley, sorry I initially missed your post. That taste will likely be there a while. This is going to sound gross, but try to spit that mucous out instead of just clearing your throat and swallowing. That mucous is part of the healing process.... Your body's way of getting rid of the yuck. Hope you feel better soon.

Lego thx foryour response

I had my 3rd of 3 Cyber Knife procedures today. It was delayed by 2 hours because the machine was being worked on when I arrived. It wasn't calibrating properly. A bit disconcerting to consider working on my brain w/ an instrument that was having problems. Fortunately the machine was fixed. This was the most difficult of the 3 procedures. The two largest lesions were treated for the second time. It took an hour and 15 minutes to complete. I was exhausted by the end.

I was able to see the doctor today. I have had pressure headaches w/ the treatment. He put me on a taper dose of dexamethasone. My head feels better already. I have also developed a shallow cough. He told me it should clear up in a couple weeks. I am scheduled for a followup brain MRI in three months to check for progression. Time to play the waiting game again. Three months will mark one year from learning of the metastasis to my brain. An extremely challenging year. In the meeting, 9 months ago w/ my oncologist, when I asked, the impossibly difficult question I asked how long did I have to live? She told me six months to a year. I am getting closer to the year, I am still here. For that fact, I am extremely grateful.

Oh calico cat I also have limited use of one arm and the other hand has neuropathy it is very difficult .my husband has to do a lot of stuff for me

this probably won't make sense but does anyone have an awful tasting mucusr

Yes, I do Barb. Strength comes and goes too

smiley do you get naucious

between wound care, lymph edema care, ot. I Am busy. Still dealing w swelling from steroids

Didnt Think it meant permanently for hair loss, i havent lost mine yet. Slowly coming off steroids. Just saw onc and realised she focused the meet on hair colour and weight loss and spoke of my cancer in past tense. So scared so unprepared on how to deal with this. My only hope is radiation has slowed it

I know of a young lady who's had brain mets for 15, yes 15 years!!. If any of you would like to read her story, or maybe you already know of her if you're Canadian (she usually makes the papers), pm me and I'll send you a link.

Edited to add, she also has bone, liver and lung mets...still kicking.

I lost my hair twice, once through chemo, once through WBR. Grown back both times although weirdly different. First time was straight and mostly white, second is curly and dark grey! My friends tell me it will normalise in a few months more. Eyelashes and brows grown back although brows fainter.

can anyone tell me about a vinegar soak for fingernails? My nails are very sore from previous tx