Brain Mets Sisters
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Wow. So much going on with everyone. I hope the new week brings good news and good rest to you all. Has or is anyone taking keppra? I just started and feel exhausted and just not right. I can't tell if it's because of the keppra though or if it's just me and the xeloda not getting along again. Any insights would be appreciated...thanks, guys.
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Hi Mauimom, I have never heard of keppra before now. Xeloda and i got on just fine. I don't know what chemo i am on now. I dont care. I told my onc to put me on something easy on my already compromised organs, and something gentle on my feeling overall. Nothing is touching my brain, which is where the real problem is. We're just keeping the body fires out. Trying to live well, while I am here. Hopefully, another 10 years or so..
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Sorry - see my noggin's out of whack! The keppra is an anti- seizure med. I've been shaking and tingly on the right side.
Hugs to you, Jodi.0 -
Those 'helpful" meds, always come with side effects. Dammit. Try to rest, and be super careful. My goal in life is to NOT fall. I hope you have lots of help with your growing family. Mommy cannot afford to be hurt. Hope allis good otherwise. Our oldest daughter will be in Maui tomorrow!! It's her turn. She's wayyy overpacked, but I'm not carrying it!! She is staying where hubby and I stayed. Should have a blast! Aloha Hugs back.
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Taxoterre (sp) was the only chemo that kicked my a$$. Ruined my nails, made me sick, and ruined my bloodwork. All that after one dose.
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Seriosusly ladies? From where we are, all the junk we have allowed to be put into and done to our bodies, we are worried about drinking? I am not too worried about what I ingest. I consider anything a calorie.
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My former onc told me to remember I'm not just a patient, I'm a person and I should treat myself like one. So alcohol (in moderation, of course) was one of his top recommendations.
I miss him.... Banjo, I'll let you know what the new guy says about the steroids... Now, champagne for all!0 -
Laurie - can't see the NHS giving you a prescription for champagne as a migraine cure but if the reason it works is the combination of alcohol and bubbles, would a gin and tonic do the same? Rum and Coke? One of my daughters gets migraines and I used to but not any more. We both agree that sometimes a glass of wine helps and sometimes it makes things much worse but we never had the bubbles. Assuming that a German Sekt or even cider might do the trick as well?
We could have a lot of fun doing the trials on this...
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You don't need a prescription for booze. I can't drink because my stomach is repulsed, but i would love an IV full of red wine!! I smell hubby's at night, and I could hurl. Still, would love the buzz. Dammit.
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When I was in hospital a while back there was a woman in the bed next to me who they diagnosed as having 'steroid induced psychosis'
They couldn't get hold of her husband and her son said he would get there as soon as he could but it might be a couple of hours (as you can tell there wasn't much privacy, I could hear everything). Anyway turned out she had been diagnosed with brain mets that afternoon - nice of her family to all go off and leave her- she didn't have psychosis, she had gone home and got completely plastered, she had been found by a friend, apparently she smelt of alcohol but they all assumed one glass not 2 bottles.
I have sympathy with her, I'm amazed that the doctors think we are all so sensible that after that kind of news we would go home and sip just one glass!! Who can blame her for getting completely plastered. Wish is done it myself before my liver started to shut down and made it impossible for me to keep alcohol down. Watched a programme about British sparkling wine (apparently it tastes as good as champagne). I SO wanted a taste!!
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I drank whenever and however much I wanted, until these creepy brain mets. I had stage 4 the entire time, was diagnosed at that stage, and guess what? It's always been in my liver. Next stop, my spleen. Guess I will find out if my traveling gypsies went anywhere else on the 30th. Scan. Tillycat, I cannot believe anyone would do that to anyone. My family can be a pain, but that is plain ol' mean and inhumane. Hugs.
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mauimom.. i still am on keppra. my neurosurgeon thinks it is the best drug ever. I don't notice the side effects too much and try to get extra rest.. I took it with Xeloda tho.. and that kind of knocked my on my behind.
Still alive. In fact the surgeon said i should keep an extra keppra with me and chew it if i had indications of seizure activity, lights in my eyes, strange noises, unusual balance issues. and drink a couple glasses of water.
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thanks Apple.
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I think that story is funny about the 2 bottles of wine! Sorry, but I could see me doing that!! I had a bottle of wine and burger and a smoke with I first got my news of my mets dx.
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Fitziwins, I am with you. What's going to happen? Are we going to get cancer? At this point, no one but my self is telling me what is best for me. I don't have that kind of time. (My favorite line)
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I say that too, I don't have time to wait!
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Got my third treatment today. If everything goes well and I'm doing okay I get to go home tomorrow and do the rest out patient (they want to observe me for at least three days of treatment due to the location of the one lesion).
I want everyone here to know how much inspiration you all are to me. I know that "long" term is possible thanks to all of you.
The only good thing (if you can call it that) is that since radiation is the best shot I didn't have to change docs. I get my RO who I like and trust very much. She's really into gammaknife and cyberknife so I know the WBR is the right decision (and she explained fully why).
Thank you again everyone.0 -
heres the link to the article on viagra hope i did it right http://www.scientistlive.com/European-Science-News/Medical/Viagra_may_enhance_herceptin_delivery/24491
still waiting on appt for new mask anyone come up with creative ideas to do with them?
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Braids3, that link made me laugh, but anything that will cross the blood brain barrier.. Especially if it causes 4 hours of......
As far as the mask? I almost threw it at the radiology team, when they asked me if I wanted to keep it. I am a crab when it comes to radiation. I have never been so sick even though I am sure it worked. I didn't ever want to see the mask again. They even gave me a diploma, I promptly threw in the garbage. Sicko
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hi ladies. my mother has brain mets, 2 lesions to be exact and is having a tough time with the nausea and vomiting. do you have any suggestions that might help? she's also not eating well. What are your diet like? Thank you so much.
My heart and thoughts go out to each and every one of you, everyday.
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Ovaltine, rice pudding and applesauce help with my nausea as well as dry toast. I keep a cup of nuts around to munch on... I just don't eat much.
I am doing pretty well right now. my onc. said take a Zantac at the first time of acid reflux.. i do ok with tums too, but Zantac pretty much works all day (genereric name Ranitidine) it's a pretty tolerable drug. I can always tell when the hiccups start, that nausea is not far behind.
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I'll try the Ovaltine and rice pudding route. Do you guys have any suggestions with regards to her vomiting? She's puked 5 times today.
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oh dear.. that is awful.. maybe she could call her nurse. that shouldn't happen.
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Call the doctor/nurse. Have Pedialyte available at her side to drink. (I do better with room temperature.) and I drink more if I use a straw. see if the doctor can prescribe some compazine suppositories. Lots of hugs and best wishes.
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I'm with apple and scuttlers. Call your Dr, nurse or your oncology pharmacist. Throwing up is always something to be concerned with. I wish your mom the best. Hugs.
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and btw.. my appetite sucks. my doc put me on megace which perked it right up.. it's an old cancer drug. I had lost about 25 pounds and was able to put 10 back on.
remembering the days when losin 2 pounds was a victory.
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@Diza: I strongly agree with the others...let the doctor know. Not being able to keep anything down is a medical emergency. My daughter was vomiting like that and became dehydrated rapidly which brought on a blood clot in her leg and she was very confused. We raced her to the ER and they tried all kinds of nausea drugs but none worked until Megace. Turned out they found leptomeningeal mets which are classic for nausea. That bought her an Ommaya port and she is doing very well now. Megace is a wonder drug for us, along with Herceptin. Hope your Mom finds whatever drug works for her.
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There are so many things to take to counter nausea - please call the doctor. there isn't any reason to suffer unnecessarily. they probably think i'm a big pain in the neck (or another place...) but i call my oncologist's office all the time...i've got zofran, compazine, ativan and fenergan going on right now for nausea.
just had a c-spine mri yesterday for weakness in my hand. waiting on results - hoping it's just weakness related to the mastectomy last october?
all the best to all of you.
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hello all,
sorry i always have questions, but here is mostly where i get my answers from..
mom was diagnosed with recurrent mets on 9th of july after wbr in dec 2011 , 5 spots, she has been finally approved for treatment in winnipeg for gamma knife which will be on the 9th of august. she is not on chemo or anything else like herceptin to help stabilise brain mets, only on femara which does seem to have any effect on them..
am i being really impatient or 5 weeks is a long time to wait for brain mets which have reccurred, she landed up in ER after 1 week of diagnosis due to confusion and slureed speech, so that was a fun day..when we called up the radiolgist office on monday ( could not get thru on friday as offices were closed after she was discharged from ER) to tell them that she had these symptoms and what was the status for winnipeg, they were like we have just put all the paperwork to gether , we want to make sure we have all teh right paperwork and will send it to winnipeg tomorrw, so they took a week to get papaerwork sorted...and then the doctor prescribed 4mg dexamethasone twice a day (which i have been made to believe should have been given to her anyway after diagnosis) am i being unreasonable..cuz my mum seems to be getting a very casual approach each time..
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No personal experience with your situation, but keep fighting and being a pia for her. The squeeky wheel is the one to get the grease. You have to be your own advocate and push until you get an answer that you can understand.
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