Brain Mets Sisters
Comments
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Lassman, Good luck with a second round of zaps - knock them flat!
Barbara x
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Lass man,
Hope you are feeling better today and you can get the gamma tx this week. It is encouraging the tx zapped out some of the rumors.
Klo-how are your eye rads going along? Do they cause fatigue, redness?
I will have a follow up MRI in early June to check if my steroactic rads worked. I am not positive as the the last two weeks I have had a constant headache. This headache is different from anything before and I feel a pressure behind one eye. Crappy news can come in its own time. I am not ready to start Tx again but will do what I have to.
Tracy,
Hope you feel better with the steroids but sounds like you are almost done with them.
Wishing everyone a good day.0 -
Whoa, Jodi,
If I'm the only Kathy in here, I must thank you, but correct the notion that I lost a Friend. My Breast Friend is doing fabulous. She is busy fixing cosmetic things like her overhanging eyelids (insurance paid for it).
She simply stopped finding BC in her body. We hope hope that she will NOT follow me to stage 4, but she knows its always a possibility. She did make some better choices than I . She tolerated Tamoxifen for the entire 5 years, whereas i said, JUST SHOOT ME, and did not take it. She had her ovaries out.
She's extremely happy in Grandma-land, so bliss may be keeping her healthy, too. Anyway, she's my first line of support should things go south.
But I would LOVE to see your place. I have in-laws in San Rafael, so if things keep going well, my DH and i will be flying out there. LOVE that climate and progressive culture.
Love y'all,
Kathy
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Lassman - my original brain mets diagnosis was after nausea, (when upright or walking) vomiting (generally when in the car) dizziness and poor balance. Seems mad that I didn't complain earlier but I kept thinking 'hmm travel sickness? That's weird, dizzy and falling over? Gosh I must be really tired, nausea? Must remember not to eat tuna, apples, crisps.... Whatever .... Again'
Anyway steroids really helped all this symptoms and I was able to carry on as normal (if you ignore fat face, mega appetite, grumpiness and depression!)
I have some swelling and I'm waiting for a pet scan - not until June 19th I'm afraid, my neurosurgeon is on annual leave. I have a milder version of the symptoms again so I'm back on steroids + taking an anti nausea tablet called cyclizine. It is apparently good for nausea caused by balance problems and it is working well for me. So much so that I have cut my steroids down to 1mg a day. I haven't discussed it with anyone as I always find that the oncologist is keen for me to take a high dose. The neurosurgeon is always pleased when I reduce my steroids, as long as I do it slowly, but as I said he is away at the moment.
Jodi - I love your thoughts and 'rambles' keep them coming! Do you mind if I pinch some if them to write in my journal? Its only a handwritten thing i keep by my bed and I promise to put them in as someone else's thoughts (i am not very good at writing stuff so no one would believe me if i tried to pretend they were my own! ) but i would not say where they came from
I went and chatted to the counsellor about how/what I say to the kids. I think that our one hour conversation can best be summed up as 'you know your own children- do what you feel is best'
It did give me the opportunity to think through what I have and haven't done re leaving memories since my stage iv diagnosis. In fact I have started lots of things - I have sorted out photo albums, started memory boxes, make a (sometimes half hearted effort) to keep a journal. I am writing letters to my children, husband, parents and friends and attempting to write a 'my life story' for my children to read.
I really think that we would all have loved to have this kind of stuff from our parents or grandparents. Most people spend their lives believing that they are immortal and never do anything to prepare for the time after they have gone. In some ways we are fortunate in that we have been given a real kick up the a**e - we know we arent going to be around forever and we have even been given time to prepare.
I have decided that I am happy with the way I am talking to the children. I haven't talked to them about dying but I did promise them both early on that I would always answer their questions truthfully and that if they needed to be worried about me I would let know.
My oldest daughter (who is 25 and a radiologist) has a very clear idea of what is happening. My husband is also very honest with them. We have told them that its ok to ask dad or big sis questions if they don't want to ask me
I have to say that my youngest two seem amazingly resilient and mostly take it in their stride.
At the moment i am a bit tired. Sometimes when I am snoozing in bed I wake to find that I have my 10 and 12 year old both sitting on the bed with me, doing homework, reading, playing on the iPad etc. my poor hubby has to make do with whatever space is left, or get on by himself downstairs equally sometimes i might be upstairs by myself while i can hear them all laughing and mucking about downstairs :-(
Hugs
Melissa0 -
Kathy, i am so happy to be wrong!!! I take almost everything back!! It's a thrill your outlaws are so close. San Rafael is about 30 minutes from us. Anyone can put anything I say in their pocket. It's more than likely stolen! I take what I like, as far as words. I really don't want what other people have. Just their smart mouth.
Melissa, it sounds like you've got it. Your kids sound awesome and your house sounds like ours. One big commune. Your family sounds like a happy one. What else is there??? Hugs.
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So silly, but what is DH? Designated hitter? Husband? Is the'D' for darling?
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Hey fellow brainiacs!
Well just got back from my appt with the radio-onc in London today. So hot and humid, especially on the tube - but this week could be 'The Great British Summer' so I should stop complaining!
So I have 'small volume brain mets' in my frontal and occipital lobes. None are bigger than 1cm. There doesn't seem to be too much swelling and apart from the migraines (about 1 every 3 weeks) and an occasional mild headache (neither of which can definitely be put down to the mets) have no symptoms, so they want to scan me again in a couple of months and see if the Xeloda is doing anything.
Asked about dropping the stroids. I'm only taking 4mg Dex per day but I am wired! Go to bed at 2am, fall asleep at 4 if I'm lucky and awake by 6. Can't concentrate on anything other than moving stuff around the house and making lists of lists! On Saturday, I got the notion to sort out my daughter bedroom and hauled her wardrobe out into the garden, sanded it, repainted it and then dragged it back upstairs. Spent all day Sunday in her room, going through 12 years of accumulated crap and ended up with 6 big bin liners for the charity shop.
Rest of today was nice as my DH (dear husband - Jodi!) and I met up with his daughter who lives in London and we had a fab Indian meal and a walk by the river.
((((((((((Group hug))))))))))
Laurie x
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Laurie, it sounds as though you are making the most of your trips to London; good idea. Glad to hear that the brain mets are small in number and size. My oncologist has told me that Xeloda 'can' have an effect on the brain but I have no more evidence than this and haven't researched it on the internet. I can't have Tykerb so am dependent on Xeloda doing some sort of job up there.
By the way, shouldn't you put a rein on Steroid Laurie before she decides the whole house needs renovating? When I was on that dosage, I was buzzing around like a frantic bee and speaking at a terrific rate - everything I did was heavy-handed and I am normally a very precise mover; I couldn't turn a tap on unless it was at full blast, I would mash potato or stir gravy so vigorously that it flew up the wall. Just couldn't control myself... It's so lovely now to be able to do things accurately and without impatience and desperate speed. Hope your daughter likes her wardrobe!
Barbara
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jodimomof four..
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So silly, but what is DH? Designated hitter? Husband? Is the'D' for darling?
Dam husband...
I guess it is Dear? correct?
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Apple, how many possibilites are there? I told you at the start, I am really bad at abbreviations. Too much thinking.
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Demented
Delirious
Delightful
Dogged0 -
Delicious
Dastardly
Divine
Domineering
Delusional
Dashing
Debonnair
Dick
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Dreamy
Devilish
Dangerous
Determinined
Dusty
Delectable
Deranged
Delusional
Dynamic
Dry
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Daft
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I love that!! Ditzie.
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We have a winner. Decent.
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'dam' works for me.. he is the best husband ever, but i swear.............. he can drive me batty. asking questions that don't need answering, leaving all his clothes around the bedroom, never rinsing his dishes... stuff like that.
i sound like such an ingrate and really he has been the most fantastic companion.
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Hey,even the best of husbands can get on your last nerve.
Cheryl (who got divorced 28 yrs ago)
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Oh ladies, I was having a brainiac moment when I said all those nice things!!
Too bad m u t e doesn't start with a D. I think I will crown him Designated Husband. As I said before, we have definitely switched roles. He is amazing. 0 -
Cheryl, they are always on Notice.
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Apple,
My daft hubby cannot even pick up a magazine insert if it drops on the floor! I just watched him look at it , walk over it, then walk over it again. It must have broke his heart when I finally got rid of it. But I must say here are his d's.
Duh (alot of the time)
Darling
Doting (most of the time)
Dangerous (don't hurt his loved ones)
Dapper! Lourdy he could dress.
Dam hot hot , ok that's enough.
Cheryl, I keep laughing evrytime I see you post, I can't stop myself.
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Dedicated
devoted
deaf (getting there)
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It is absolutely gorgeous here today. We have brand new birds and 2 baby deer that look like stuffed animals. I can hardly wait for the baby turkeys to start poking along.
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Has anyone tried Avastin or know someone who recommeds it? I start it next week, once every cycle for as long as I can tolerate it. I'm not going to lie....but....i'm scared! Maybe my reading and my Onc explaining the side effects, are getting to me...but I've never been scared before. Maybe if the Adriamycin and Cytoxan didn't cause me to have heart probems that I haven't recovered from, I wouldn't be so scarred.......IDK.....Am I making too much of this? Would like to hear what you ladies think!
Hugs and kisses to everyone!
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Sharon, talk to your doctor. There are lots of chemo. drugs. Ask her which one she would take if she were you. Such a great question. They're the ones who play doctor!! I have a good feeling about your treament. Hugs
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Sharon,.
I did Avastin along with Abraxane. It kicked ass. I did have a huge issue with my port. It ended up burrowing out of my chest and getting infected. You could actually see it. Needless to stay I got a new port and I love it. Also every time I got it a s/e was a disgusting boil, that was painful. Avastin makes it hard to heal, but I would do it again in a heartbeat. It totally kicked butt on bone mets for me I still cant believe the things that just disappeared and never to return, THANK GOD! My oncs are going to use the Abraxane again if need be. Aside from those issues it was easy, I know It sounds contradicting. The things we learn to live with and tolerate.UGH!
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Whats the status of avastin in terms of what doctors are allowed to use it for? (I don't read enough)
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Avastin/Taxol was my first chemo with mets. Kept me stable for some months (oh, but we wanted more than stable, of course)... switched to another combo (can't remember which) after the Avastin did me wrong: created a hole in the septum of my nose which is annoying and whistley, but not painful.
I'm guessing they'll keep a very close eye on you, given the attention it's all gotten.
Good luck with this tough decision. Paula
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20 more sleeps until Maui.
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(trying again - I keep getting kicked off when I try to post...so sorry if this comes up more than once!)
jodi - the weather's gorgeous and waiting for you - light showers in the mornings this week. can't have rainbows without a little rain!
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