Brain Mets Sisters
Comments
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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
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Thanks, Susan. I am almost looking forward to starting Ixempra next week. I've had my first 2 yoga sessions. I think I will keep doing it in spite of the fact that all I want to do is sleep.
My MO suggested MRI end of July. I will see RO on Monday. Let's see what he says.
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anyone know about bad taste in mouth from whole brain radiation? How long does it last? Thx
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Hi ladies, thank you so much for all of your advise and thoughts on chemo with WBR. I've decided to stay on the Ixempra that I've been on. I think I'm tolerating it pretty well, and it has been helping to stabilize my lung, liver,lymph node and bone mets. My onc tried to increase my dose of the Ixempra but I thought I was going to die, so I've decided to stay on the lowest dose. It seemed to be working as I only had the next highest dose once.
I find it encouraging that so many of you are doing well after the WBR. It's pretty scary to think about. I worry about all of the potential side effects after signing the consent a few days ago. It seems like exhaustion seems to be the biggie for most of you. I can deal with that I think. Not fun, but doable.
Thanks again, and even though I don't post a lot I read frequently and am praying for all of you, and sending my best wishes. Kelly.
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I have a burnt taste in my mouth and mucas at back of throat occasionally. Has anyone else? Asked radiologist to no comment given
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bhd1, it all depends. Most get normal taste back within 2 to 6 months....others over a year. If the salivary glands were affected, it might take longer and some of the tastes (particularly "sweet") may never return completely. So sorry you're going through this.
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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.
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Thanks leggo, I wondered if my cells were growing more cancer cells rather than healing. That makes me feel better. Have you had WBR?
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Lego thx foryour response
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bhd1, it took about 6 months for my taste buds to normalize. There are some foods that are still altered. I have always loved breads. The taste is still altered to me 9 months later. Doesn't really matter what kind of bread, they are not as enjoyable.
Good luck recovery of your taste buds.
Bosco, Congrats on MRI.
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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.
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wndrwmn wow that is a long time
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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
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Smiley, no I didn't have wbr. I saw it all the time in my job (dietician). So many people who had head or neck radiation couldn't eat because of the effects. Their sense of taste and smell and saliva production just went wonky. I hope you recover quickly.
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this probably won't make sense but does anyone have an awful tasting mucusr
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This probably won't make sense but does anyone have an awful tasting mucus that is stuck in the throat and neck and won't go up or down
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Yes, I do Barb. Strength comes and goes too
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smiley
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smiley do you get naucious
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No, just weired burning taste. Do you feel bored and fed up, I'm not sure how to fill thedays with limited use physically and mentally of my general day to day living
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between wound care, lymph edema care, ot. I Am busy. Still dealing w swelling from steroids
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Hi everyone, Smiley, how are you feeling now that you are finished with the WBR aside from fatigue and taste changes? I hadn't heard anything about that until I read it on here, (the taste changes). I have a question for those that have gone through this. I know that it causes permanent hair loss, does that also mean eyebrows and eyelashes? I'm not vain at all, just wondering how bad I'll look. I look pretty bad already. I'm glad to hear some people are doing so well after tx. Take care! Kelly.
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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
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Maybe I am wrong about the permanent hair loss, I thought that is what the RO said, but boy I hope I'm wrong!! I only have fluff now anyways. I too am scared for probably the first time. Weepy. I ended up in the ER for several hours last night with difficulty breathing. I hate these malignant pleural effusions. To have the leptomenigeal mets on top of it truly stinks. I am happy that your RO spoke of things in the past tense. I hope your mets have slowed to nothing. I have heard of some people doing very well after WBR. I hope that we can have as much time with good quality of life as possible. That's my wish. Take care! Kelly0
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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.
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15 years is great.
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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.
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does anyone no about a
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can anyone tell me about a vinegar soak for fingernails? My nails are very sore from previous tx
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Bosco, thanks for the info on the hair loss. I'll be glad especially to get eyelashes back. I look pretty funky without them and am not good with makeup or false eyelashes. Sometimes you're just glad you're wrong!:). Barb, I don't know anything about vinegar for nails but I have had pretty good success keeping them really short. Leggo, 15 years is fabulous especially with other mets!!! Thanks for sharing. I love getting all this info docs don't necessarily share with you. Kelly
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