Brain Mets Sisters
Comments
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I hope you don't mind if I post with a bit of a moan but I have been feeling really yuk the last couple of days.
Felt really pretty good on Tuesday and did some nice things (bought presses for my parents birthdays - both on same day- this Friday), went to garden centre and had coffee with a friend, cooked a couple of family meals to put in the freezer. All in all I was feeling quite pleased with myself and thinking that the faslodex might be doing the trick and getting everything back under control.
The yesterday and today I have felt really dreadful. Very tired, lots of bony aches, short of breath and feeling really 'tight' around my liver + I feel headachy and a bit sick
I already have fentanyl patches but for the last 2 days I have been topping up with ibuprofen and oromorph. I don't see my oncologist until the 26th June and I don't really think that 2 days of feeling like this warrants me asking for an early appt. I've got a pet scan to look at the brain mets on the 19th and blood tests to look at liver function just before 26th.
Is this kind of up and then (very) down thing common? Anyone else have similar experiences?
Cheers
Melissa0 -
tillycat, i'm relatively new to this whole thing, but i definitely have my ups and downs. there are days i feel like there can't possibly be anything wrong with me at all, and the next day can feel like there's no way ii'll be able to make it out of bed. i wish i knew what it is that dictates how i'm going to feel - i wish i felt like i had a choice! hugs to you.
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Tillycat, it was like that 3 months after the WBR for me. It does get better, but it seems like it takes forever. I don't take anything but 2mg of Adivan everynight, and occasionally, 3 advil. I do eat medicinal marijuana and that really helps EVERYTHING. I hope you start having better days. Try and rest when you feel yucky. Hugs Jodi
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Mahalo for the weather update, Mauimom. I cannot wait to get on my under-inflated raft!!!
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19 more sleeps.
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you sound like a native jodi - you must be so excited. i have only visited Hawaii in my dreams.
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My dad was born and raised on Oahu. I seriously think I was born to live on a tropical island. I like the slow pace and the incredibly nice weather. I have always gravitated to heat. NOT humidity. This will be my 5th trip in 28 years. Now, that was dumb. Hope it's a great day for you. Hugs Also, a MuuMuu, flip flops and nothing else, seems like what we should all be sporting!!
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Hey Brainiacs,
About medical marijuana. My brother called urging me to smoke pot. He says in addition to helping nausea and causing the munchies and giggles, it stops cancer.
(I looked. There is a study with mice that shows some positive effect.)
I told him,
A. I'm not putting anything in my lungs except Advair.
B. I don't have nausea or anorexia to any great extent.
C. I don't like how it makes me feel.
He never heard of marinol. That's synthetic THC right? He says I should use a certain strain, he could send it to me. I said I would ask my doctor, as I tell everyone who feels so strongly about the cure they believe in.
What do you all think about this "herb"?
Kathy
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Well, I'm not sure it would cure me any more than the broccoli that my mom keep foisting on me. (Last year, asparagus) but it could be more fun. The couple times I tried it decades ago, it just made me fall asleep. But if it works for some people, I say get the brownies ready!
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i would certainly like to try it... in my younger days it made me a great pianist.. I could practice for six hours!.. just one little puff.... and I'd be set for hours. I bought an ounce once and it lasted me for 3 years.
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I used to love taking a few hits. Now I can only have edibles. Smoking it doesn't sound good at all. I use all different kinds. I love being high, but it's a drag having to be one or the other. I can usually go a couple days with out it, but it gets too mental. I don't for one second think it's going to cure me. I look at it as one more way to live feeling as good as possible. It's good for my appetite and makes me less crabby. What's not to like?
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I have some made into 'herb butter' in my fridge, supplied by a friend, and used it when I couldn't eat. To be honest, I didn't notice any great effects on my mood but it did seem to stimulate a bit more appetite.
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Hi ladies! I had my last WBRT yesterday. It is definitely starting to make me for lack of a better word "wobbly". I am still dealing with the 3 hours of sleep a day. YUCK! I did take a couple of puffs last night and slept for 2 hrs, had to wake up for steroids and went right back to bed for 4 more. Can you say WOOHOO.
Mauimom- My brother was stationed in Oahu for 12 yrs. We used to visit all the time, only had pay for airfare. 3yrs ago my husband and I got married at Kakoaku, it was sooooooooooooooooo romantic. Hawaii is by far a little peace of heaven here on earth.
Apple & Paula- My stash lasts for yrs too and did you say brownie's?
Kathy- It's the sleep issues right now that are influencing me and I rather just take something natural because I m so sick of pharmaceuticals.
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Renee,
Congratulations on finishing Wbrt. Hopefully the side effects will begin to reduce soon and you can out this behind you.0 -
Wooooo Hoooooo, Renee!
The pot "cure" seems to have stopped in terms of search-able documentation in 2007.
Re balance,
I have been listing to the left occasionally. Neurosurgeon said brain tumors are too small to cause ANY symptoms. Perhaps rads to eyeballs? Maybe that's not a benign and simple thing? She did ask about nausea. Well,, if the retina is part of the brain, there you go!
Love yall
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apparently i don't have a working contact any more. I will not, will not will not, ask the son. just won't do that. I suppose i could go visit my artist friends downtown. anyway, it's no big deal.. my appetite is back with a vengeance. i ate 3 English muffins, toasted with butter and peanut butter on them yesterday.. for a mid day snack..eek (between lunch and dinner).
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oh, i think i definitely am wobblier a month out of WBR (have appt with rad onc monday). not that i let it bother me. i do usually haul my son or husband with me if i'm going out somewhere i'll be walking a lot in public, just in case. really, treadmilling every day makes a difference, even it if it's 10 or 15 minutes. losing muscle in my legs (couch potatoing, steroids) is a factor.... but tomorrow is my last day on my .75 mg of steroids!
hey, apple, i have a piano question for you. perhaps i should PM it though so as not to hijack this thread.
couple nieces coming up today to visit, spend the night then we're going to the zoo in the morning. it'll be fun, but i hope they do not want me to go kayaking or something. that's all i need is to fall out of a boat,
hope you guys are having a good day, paula
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Hi girlfriends, I am glad we decided marijuana is not the CURE. It is one more option for sleep, mood, appetite and for me at least, it gets me where I want to be mentally without drugs, just an herb. Just what the helicopter, is in all those pills?
Renee, congratulations on that yucko treatment being done and out of way. I hope that radiation got everything! It should, darn it! You girls sound like you need better edibles. Pot butter sucks, unless it's made into caramel and something chocolatey. I never get any from our kids because 2 don't indulge and one lives 2 states away. Besides, they don't care as long as mom's head isn't spinning in circles and she still only has one personality. The most I ever ask of any of them, is for ice cream, maybe a ride for blood work. They are far too busy. Just ask them. Hugs Jodi
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Paula, I want a video if you go in a kayak. If it were me, I would be on the you tube for hilarity's sake!!!
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Well, since I'm not a great swimmer, it would be a thriller! Actually, I've kayaked a handful of times and found it to be really fun and we have a beautiful river. So.... who knows? Thinking about it, the video of me getting in and out of a kayak would probably be the funniest part.
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I used to love boating. Never sick. Always thrilled. We took 15 day cruises and I enjoyed every minute. Not now. My ears and my balance say I would be sick the entire time. Sad. I will have to settle for a Luau and my underinflated raft.
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i could settle for a luau..
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Paula, grab a pina colada or a mai tai. I will get you some pork and poi.
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well girls finally got the lung biopsy result from Onc inconclusive of course they puncture my lung and still don't manage to get a tissue sample big enough needless to say neither I nor Onc. was impressed and I don't want to do it again and put treatment off any longer and Onc agrees so I start Taxol/Carbo on wed. 3 week on 1 week off any one else done this treatment and how did it go. MO seems to think SE won't be too bad.
As for the marijuana know it won't cure me (however had a friend with brain cancer that smoked everyday for years and he made it 10 years the drs. thought maybe that had something to do with it but who knows, it sure didn't hurt him) but it sure makes most days more enjoyable helps with nausea and appetite.
Jodi if my count is right only 17 more sleeps..so jealous hope you have a wonderful time!!
Renee congrats on finishing WBR when you can start to wean off the roids you will start to feel better, I hope I know I did.
Paula yippeee on today being your last day of the dreaded roids.
Hope everyone has a blessed and pain free Sunday.Love and hugs to you all!!
Jackie
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Hi All,
Well, what a week! Went to Bupa Cromwell on 30th May with the intention of getting more Gamma knife. However, MRI revealed water on my brain. Too dangerous to try more gamma. The next thing I know I'm in surgury getting a shunt put into my brain to drain the fluid. When they inserted the tube, liquid squirted across the theatre! so I did need it and it helped relieve the horrible symptoms I was having. Shunt made me feel much better. Had great treatment at BUPA so far. When all is healed I will get SRS for the two mets in my cerebellum and maybe gamma for two in front of brain.
and so it goes on. Hope not to fall off my perch in the meantime. I'm not going without a fight.
Love and hugs ro my brain mets sisters. How you all doing?
Lassman
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PJB - I laugh just about everytime i see your screen name. Surely you've heard the peanut butter and jelly song.
a few years ago, i helped my son and a couple of his buddies rewrite the song so it would sound Christian and loving, so they could sing it for the talent show with some African bongo drums.. it was absolutely funny and brilliant ( I am going to have to find those lyrics). the judges didn't think so.. apparently they couldn't hear the superb acerbity and sarcasm in those lyrics. and they were not accepted. but here is a rendition of the one of the original pbj songs..
Seriously, you can only listen this carp for about 40 seconds before going nuts.
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Lassman, what a week and what a shock to have the fluid shoot out of there. Thank goodness they saw that and took care of it! Am so glad you are feeling much better!
And Jax, you must be beyond frustrated!
Apple, I'm going to have to check out the video later.
Also need to start doing my PT exercises that I've been nOT doing since my last session. just like regular school, getting to work at the last minute.
I'd better get up and moving, lots on my plate today but all of it fun. And full of unhealthy food.
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Dearest Lassman,
What the devil! We thought we heard it all. So thank goodness you went for the MRI and i presume the neurologist has eyes like a hawk and will keep them on your noggin.
I would have been so scared. As a nurse I have seen the implanted drains, tunnled under the skin and all. That's better than having the brain contents draining into a little bag!
Oh my gosh, that tops it all.
Much love, concern, and affection,
Kathy
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I wanted to let y'all know I haven't been doing so well lately. I started getting wobblier a few weeks ago and couldn't do as much without help. Then over the weekend I had a seizure that I'm told was pretty bad. All I remember is laying down for bedtime, then waking up the next day in the hospital. I am home, feeling a lot more uncoordinated and wobbly. I am stuck in the bed because getting up is harder and I am lot more wobblier. They have me with hospice and I got to meet them all yesterday, the social worker, nurse and aide yesterday, They were all wonderful.
Jenn
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Lassman, what a trauma!! I am so glad you're ok. This is the damnedest thing. I hope everything goes smoothly from here on out. That kind of surprise is never fun. Hopefully you will lose some of the creeepy side effects. We are tough cookies!! All good thoughts, Jodi
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