Brain Mets Sisters
Comments
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(((FMG)))]
(wish i new your first name...)
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Formygirls...
Include me with the many people who are holding you in their hearts. Love to you...
Rose.0 -
Prayers for formygirls.. i hope you are improving and healing.
Lassman, i hope you are doing ok.
jodimomof four is hopefully enjoying beautiful Hawaii and sleeping there. Blessings to us all.
It is getting increasingly difficult to get up in the morningins.. no biggies,, my joints hurt, i have vertigo if i stand quickly, my mouth is totally dried out.. It should be a great day. i am going to an awesome 4th of July party...bringing a salad with ramen noodles in it that every one loves (i think it kind of weird) but it would be a great thing to subsist on on a dessert island, with greens, veggies, ramen, craisen, almonds and an oriental soy sauce.. everything you to need for staying alive.
Time for some head advice.
today i am taking my lady gaga wig to have it cut. it was the most unprofessional looking thing out of the box.. totall uneven and the bangs came down to my lips. I would normally cut it myself but i think it has a lot of p0tential.
http://www.wowwigs.com/socut.html#tabsinfo
i also ordered the most adorable headscarves.. they are huge, colorful, cheap and wrap like a crown around. they stay in place and are shipped free. I fold them in 4ths, then like a triangle and simply tie them at the neck.. they stay tied and are really really cute.
these are the expensive ones.. but they are soooooo cute. i look like an egyptian princess
and here is another.. that is 1/2 the price
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Hi ladies! Apple, I got back from Maui on the 28th. It was heavenly. Your scarves sound beautiful, but I cannot wear anything on my head. It's too sensitive for a bobby pin, if I had hair!! I have a little fuzz everywhere on my head, but down the middle. I need a comb over!
Back to chemo today after 3 weeks of the glory of none. The nurses accessing my port, freaks me out. You would think I would be used to to it by now. Big chicken. I think I'll take a few adivan. I hope everyone is having a good day. Thinking of all of you. Hugs Jodi
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Jodi - so glad you had fun and your eyelash extensions are still looking glamorous :-)
Apple- if you can see it with your magnifying glass, it's growing back - hooray! The scarves look lovely. I shall keep those links as I am not good with wigs. I used to put the scarves on my head and then just treat it like hair tying it back/up/ to the side/ in a loose bun etc with a scrunchy. Very easy and looked quite nice too
FMG - I really hope that your treatment plan works out. It sounds so scary. I had a bit of that today. It's tough.
Lassman I think we missed each other by a week. I am at the Cromwell today and tomorrow. Did you come out last week?
Came in for my GK today, don't really know what to think.
They fitted the frame as planned and did another MRI to compare it to the last PET scan. Then the neurosurgeon came to talk to me and my husband saying that having looked carefully he wanted to treat the small new mets with GK today but that given the size and activity in the original large tumour he wanted me to come back in on Friday and have a craniotomy. I think I went into a bit of a panic mode at that point. I hardly heard anything he said. My husband told me after that he said he assessed the risk of dangerous SE's with surgery at about 5% but if he retreated with GK the risks would be much higher (30-40%) I think the risks he was talking about was swelling and fits, he said his concern was that the swelling and fits could come on very fast and fits always had a risk of permanent brain damage. I didn't really take it all in as I was quite overwhelmed. I think I had a bit of a panic attack because I felt all faint and was struggling to breathe properly.
The neurosurgeon then went and phoned my onc (who was in Europe holiday, I bet he was thrilled!) at which point he was told that my liver function was not good enough for me to have a general anaesthetic. The neurosurgeon decided to do GK on all the mets including the big one afterall. (having scared me to death about it) They are going to monitor me carefully over the next few weeks. He says he's not happy about retreating the large met with GK but that given the circumstances it is my best option. So my liver function is clearly still pretty bad and my brain mets are not behaving at all either :-( I am lying here in hospital feeling really scared and quite sad. This didn't feel like part of the plan.
Melissax0 -
Hi Tillycat,
Think we just missed. I got out on Friday. I think I would have freaked as well if they had mentioned the craniotomy. On top of it all scaring you with retreatment stats! That sucks big time.
I have an appointment this Thursday to see what the next step is and how I am faring. So far after my SRS on my cerebellum my symptoms have improved. Almost walking back to normal and no more vomiting and nausea so far.
Original plan was to gamma my cerebellum mets but MRI showed it was too large and SRS would be better. Seems to have helped.
Praying that your liver improves.
Lassman
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Hi lassman
Shame we keep missing each other. What's the difference between SRS and gamma?
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Hey guys. Had chemo and saw one of my oncologists today. I guess my liver functions had been acting up in the last few weeks, but due to no chemo for 3 weeks, everything looked within normal limits, in yesterday's blood work. I gained 3 pounds!! Super happy about that. I do not need any weight loss. I think my only complaint was this damned weakness. I have a hard time changing positions in the middle of the night. My right arm and leg are messed up!!
We discussed the brain mets too. I am not having any scans on my head until I show new symptoms. I am not sure I will do it even then. I am not doing anymore s@#t to my brain. I told her, like I have told my other doctors, keep the fires out as far as my cancer in my body, and if it is the end, keep me drugged and painfree. I told her, I barely want to know her. I cannot tolerate the side effects of the radiation, steroids etc. I want to live but I do not want to be sick. I guess everyone really does do it different. It is super personal. Love and hugs to everyone. Jodi
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i'm with you jodi
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Tilly that sounds overwhelming and un- absorbable. I like neurosurgeons' bluntness. They might leave you with an assitant, though, to help you grip the new info.
jodi, i think you put it well: things will be on your terms.
Why are we so different from all the other women? Im so grateful to have you all to feel a little more normal with. But im sorry for us all.0 -
I think all of our 'conditions' are effed up and I wish we were our used to be selves. Having said that, I have "kept it lit' my entire life, and I have no intention of stopping.
On a sicko subject, how many of you have spoken to a palliative care doctor? I highly recommend doing so. K-Lo, so much of this is about the control I have. I am actually getting a copy of my DNR, (do not rescusitate) for my fridge. I don't want the paramedics doing CPR on my body to no good end. If there isn't a copy on hand, not just someone's word, they're going to put you on the ground and do the ol' pump squish. Anyway, all of my wishes are known and notarized. Great way to start a conversation with our monsters(children). I think they kinda expect me to control my death like I control my life. Bossy Bossy Bossy! hugs from the weird girl.
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jodimomoffour,
Glad you had a wonderful holiday and glad that you are doing things your way and staying true to yourself.
Barbara
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Hi Tillycat,
The SRS targets the tumours only and does not touch the surrounding area's. It can go right around the tumour edges which it could not do a few years ago. Very similar to gamma but no metal frame. You have a plastic mask a bit like the one that they do for WBR to keep you still. They tend to do this if the tumour is too big for gamma, which is why I had it.
Hope that makes sense!
Lassman
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Hi ladies,
My love, support, and gratitude goes out to all of you.
Well, if it isn't the brain, it's the liver. After two treatments with T/C, my liver mets have continued to progress. Soooo, now I am scheduled for chemoembolization on Monday. Will be in the hospital over night for observation. They only do one lobe at a time, so I will fly down to UCSF again two weeks later.
Hope it works and I hope I don't feel a thing.
Hugs, Terry0 -
P.S.
Insurance has yet to cover the gamma knife procedure. They did pay the doctor's bill so I am a little hopeful. I am sure they are going to love the chemoembolization bill. Once again, no pre- auth is required as it is out patient. "But I will be in hospital!", I said. "Yes, but we bill as a 23 hr. procedure". I feel so much better hearing that...OMG0 -
hope it works Terry.. that would be shocking news.
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Happy 4th of July. Time to give your 10 years old matches and things that blow up!! I love this holiday. NOT!!
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hiya ladies...pre chemo steriods today after having it postponed last week so hopefully chemo #3 will happen tomorra...
hope everyone is well and doing ok...xx
read you soon
all the breast
tracy..xx
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Tracy were your counts down?
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Hey Terry, hope all goes well with the chemoembolisation today and you have a quick recovery.
Lx
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hello all,
being lying low for a while and been rooting for all here..lassman read about your experience and always kept u in my prayers ..alests, jodi, apple....all of u have been in my thoughts and good wishes..
not good news i am afraid from our end, had to push for a brain scan for mum after my mum's onc told her you are "screwed" if your brain mets come back in his own words..anyways fought our way to get brain scan atleast if not a whole body scan ..found five mets and will have to fly to toronto or winnipeg to get gamma knife..she had wbr in dec'11. the flipping onc also told us there is no treatment available in vancouver..at all..which is not true we have found out there is another form of radiation available if there are 3 mets or less..
shattered and devastated once again..
cant believe this shit..please excuse my language..never thought u get treated this way if u are a stage 4 breast cancer patient with brain mets..! anger at the misinformation we got in the first place and still struggling to get a body scan after 6 months of initial scan..! wow..can u believe this..??
xx
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Oh bestfriend, that is so much to take in. Your Mum is very lucky to have you by her side. Take a deep breath, and stay in the moment. Keep trying to move up the date of the scan and keep seeking treatment elsewhere. This is a big world and you are not 'stuck', where you are. I send all of my love and best thoughts to you and your Mum. This sucks on so many levels. Hugs Jodi
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bestfriend.. i will keep you and your mum in my thoughts. good luck
wait and see.. so often things turn out so much better than what we hope.
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thank u apple and jodi for listening and for your kind words..having this support system here really helps..
can i ask anyone here with gamma knife experience to pls share what to expect in terms of side effects etc..
thank u again
xx
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best friend you both are in my thoughts and prayers. Ok so i had mri Monday to see if i have any new ones and if the cyber worked on the 3 the did. i'm so anxious. my? are how many times will they do cyber before they say wbr, the other one is since i'm her2+ which would be better to try 1st wbr or herceptin in my brain? i'm really scared of the wbr.thanks
wishing u all happy thoughts and blessing
chris
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best friend you both are in my thoughts and prayers. Ok so i had mri Monday to see if i have any new ones and if the cyber worked on the 3 the did. i'm so anxious. my? are how many times will they do cyber before they say wbr, the other one is since i'm her2+ which would be better to try 1st wbr or herceptin in my brain? i'm really scared of the wbr.thanks
wishing u all happy thoughts and blessing
chris
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braids , dont know if herceptin would be better than wbr, but as far as i know herceptin is a very good treatment option..
my mum had wbr and she did take about 3-4 months to fully recover..everyone has a different experience from it..hopefully u will get your answers soon and be more at peace..hang in there and all the best for your mri results..
best wishes
xx
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Hi fellow braniacs
Just a "what would you do" query.
I have a MRI scan to see what's happening after 2 and a bit cycles of Xeloda on Monday and get results the following week.
I was initially on steroids but because I have a 'low volume' and there was no swelling, my onc said I could wean them off since I hate them so much and they make me totally wired. I have been off them for about 4 weeks and have a headache most days (in the afternoon) and a migraine 1-3 times per week with the whole flashing lights/ can't see properly thing. So I suppose the migraines have increased since I was diagnosed and the headaches I notice more.
I was thinking, should I start myself back on a small dose of dex. before the scan on Monday or leave off until after? I think if I hold off they will get a true picture of what's there rather than swelling that is supressed by the dex.
The onc said to me I could restart the dex if I had an increase in symptoms but I don't know if I have as they're not sure if the migraines are linked to the mets or to a drop in oestrogen.
Chemo brain - I'm just rambling on now and when I type my name at the end of this, I'll have to retype it because I will have spelled it wrong! Every bloody time. Don't know if it's my brain or the neuropathy!
Laurie x
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Laurie,
I would hold off the steriods since you have not taken then for so long--just personal opinion if the symptons are not bad and dr has blessed. This way they get the true picture on Monday. I hate them and am always trying to bargain getting of steriods. I will probably be on some dose forever. I wish you all the best for Monday. Hopefully X has done its magic and you do not need any rads, that would be awesome.0 -
I would wait or call in the question because they do affect the scan. Is neurosurgery involved? They know that noggin better than anyone, of course.
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