Brain Mets Sisters
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hello all,
just want to ask u guys as u probably know better in terms of treatment as my mums onc has really no clue as he brushed us off earlier on saying no treatment is available after wbr..
most of the search i carried on the forums here told me that almost everyone had gamma knife with chemo as well, or maybe herceptin, but my is not her2 nue sensitive.. is there anyone who had just gamma knife..i am sorry if i am asking too many questions, but my mum's medical team is really useless..is xeloda the best chemo option..? is it usually intrathecal and the best way to deliver chemo for brain..we just dont have anyone to discuss our options with, even our gp told us point black i know nothing about brain mets, and refused to give us a referral to a new onc..in the end our radiotherpaist has agreed to arrange for a referral to a new onc..
sorry if i keep repeating myself, just wanna make sure my mum gets the right treatment and is not brushed off again..pls help if u can..
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laurie..my mum kept having flashin lights after wbr, and it really freaked her out, we got eye check up done and i think i have read your earlier posts which said that u had gone to an eye specialist and they gave u an all clear..they have subsided for my mum now, so its most propbably related to the wbr u had..she uses eye drops called systane for dry eyes and the opthamologist also recomended omega 3 as is good for eye health..(not omega 6 though)..also we have learnt that hormone therapy contributes the whole dry eye syndrome which can in turn cause these problems..hope this helps..xx
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Hi bestfriend
My onc at the Marsden said that there is evidence that Xeloa crosses the blood-brain barrier. It's an oral chemo and SE's are not too bad overall. (There's a good Xeloda thread you can check out).
I'm not sure what chemo's are available intra-thecally. Seems that HER2+ women are offered Herceptin via an Ommaya port. I'm HER2- so not an option for me.
Re: gamma / cyber knife, as far as I know, it tends to be used when there are a few mets rather than when they are widespread.
Have you checked out this site which has some useful information http://www.brainmetsbc.org/
Lx
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thanks laurie, have been there before and will check it out again to look at the options on their website, will also check out the xeloda thread xx
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Hi ladies!! Just back from the coast. The coastal air and quiet, is good for my body and soul. I am very lucky to have some where so peaceful to go. Left Tuesday, right after chemo. I always feel my best the first couple days afterwards. I should feel nice and nauseous Saturday, when we pick up our Granddaughter and her bestie, from the airport!! Nothing new here on the medical front. Supposed to see oncologist and have a body scan this month. Ask me if I scheduled either one. NO. Let them call me!! I feel good, if not sometimes, most times squeamish, a headache at least once a day ( advil) and my right side is like that of a stroke victim. No new changes. No looking for trouble.
BTW Had my 10th day of WBR on March 14th, and took my last steroid the 16th. They made my life hell. I do however have steroids with my chemo. Also, I do not believe Herceptin or Xeloda cross the brain barrier. Lots of wishful thinking. I sure wish they did. Hugs
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lots of wishful thinking back at you jodi (ala Ellen)
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Hi Apple, I missed you!! I was thinking you hadn't posted in a while. They found me!! I have a cat scan on the 30th. Darn it. I was hoping they lost my phone number. Hugs
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Hi all
Just a quick update from me (don't know if I've said any of this before so excuse me if I'm repeating myself)
I had my 4th lot of gamma knife last Tuesday - I have now been treated for 38 (!!!!) little brain mets - all less than 10mm + 1 large one (3.5 cm in the cerebellum). I am now officially the record holder for the number of mets treated at that hospital (Cromwell in london). The neurosurgeon who treated me, who has been doing GK on patients since the 1990's and has worked with the chap who developed it, says that all the studies indicate that it is not the number of brain mets that is significant but the total radiation dose. Apparently my total radiation dose is still less than half that I would had had with wbr, because the mets were mostly tiny. This time they treated 10 new ones + retreated the largest of the original ones. Of the 20+ that they treated last year only the largest one showed any activity on the pet scan. The little ones all appear to be dead :-). Hopefully the same will be the case for these new ones.
I am told that with wbr there is a reduced risk of extra mets appearing, so I might have been able to avoid this 4th treatment if I had opted for wbr in the first place but I have found GK to be very manageable with few side effects (mostly tiredness) and if any mets had appeared after wbr I would have been offered GK anyway which might have meant me ending up with quite a high radiation dose, I'm not sure what the best options are so I just let them decide for me in the end :-}
The main bad news was that the neurosurgeon wanted to do a craniotomy on the larger met as he felt that getting it out and then treating the 'edges' with GK if ness was the best option. Unfortunately my liver function is officially c**p (deranged is the word they used) so I can't have a general anaesthetic. I am now back on chemo in an attempt to get my liver function up, so I can have a craniotomy if needed - oh joy!!
I had xeloda a while ago and my onc said that it is thought to cross the blood brain barrier. Didn't work for me but then that doesn't mean it won't work for others
Laurie, I was told that steroids make very little difference to scan results but that doesn't make any sense to me. If the steroids are there to reduce the swelling and one of the things that the scans are checking is how much swelling there is then surely taking/not taking steroids can make a big difference, if you are really struggling though perhaps you could take a low dose and then make sure that everyone knew what/how much you were taking. Apparently they generally prescribe high doses of steroids because not much of it gets into the brain (99%effects in the body1%effect in the brain) so a dose of 2mg probably isn't going to make all that much difference
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Hi everyone. Looks like it's my turn. I've been reading this thread all along and am glad because you guys gave me a lot of hope today (yesterday now I guess). I had a brain mri because I was getting head rushes late in the day when I stood up. Sometimes dizziness and headaches with it. My MO agreed it was probably some kind of wierd SE from the Faslodex since it didn't startuntil thenew treatment started.
But he ordered the mri anyway just to be safe. Well when I was done the scan they had me wait in the dressing room for my disc (first clue - usually they send me to the waiting room). Then they had me go to a phone because the doctor wanted to talk to me. Imagine my surprise when it's my MO NP. She told me they found lesions and one was pressing on the cerebellum and could cause siezures. So I should go to the emergency room where they would start me on dex and have neuro look at me and decide what to do.
She kept apologizing for the way she had to tell me but she felt it was too important to wait until Monday for the MO to be in and I shouldn't be driving. So I had to wait for my DH to come pick me up to bring me to the ER (I went alone because I was sure it was nothing).
Now I'm still in the ER waiting for a room. Never getting scans on Friday the 13th again.0 -
Oh reesie
That's such rubbish news.
My scans that showed brain mets a year ago (May 2011). Life does go on :-)
I went for my scan with my daughter because I also assumed it wouldn't show anything. Knew something was wrong when they wouldn't let me go and the young chap who did the MRI kept walking past talking to people on his phone. In the end he came in and told me the results (7 little mets + 1 large one in cerebellebu) because he couldn't get hold my consultant.
I was admitted overnight and given high dose steroids (in case of fits). I saw my consultant the next day and he already had a treatment plan in mind. I have to say that he was a bit negative about my long term prognosis. Nowadays he is much less worried about brain mets and tells me that it's liver function he is concerned about at the moment.
Sorry that sounded as if it was all about me :-)
What I wanted to say was
1. Things seem much better once there is a treatment plan, but you already know this, you've been through it all before. It's just in a new place now
2. Some consultants get a bit negative when you have a brain mets diagnosis but they don't really know what's going to happen, treatments have got better, women with brain mets are living longer. Lots of us have been around for ages
3. It is always a shock (to us and the staff) when they find brain mets - not sure why as apparently it is becoming much more common because women are surviving longer with bc and the brain tends to be one of the later places that it travels to.
Take care, gentle (((hugs)))
Melissaxx0 -
I'm sorry Reesie. When I got the 'news', it was shocking. I was getting chemo, when I happened to mention seeing two of my hubby. The double vision had gone away, but they still wanted an MRI. I had wbr two days later. I wish you well. Again, I am so sorry you joined our club, where no one wants to be a member. Good thoughts coming your way.
On a lighter note, our 10 year old grandaughter, my very favorite person, will be here tonight for 14 glorious days, along with her best friend. I will be the cruise director, my daughters, nieces and sisters will be entertaining for me.
I wish I could do everything I did 6 months ago. Darn it. I will enjoy it all from my doublewide (chair and a half).
10 years old? What do they like? I have all the Ben And Jerry's you can eat. Hugs.
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Ressie,
I had to smile at your mention about the scan on Friday the 13th. (my preholiday scans seem to have crappy results also) I am glad that you got your results right away. I am bummed that they were not good news. My fingers are crossed that you next plan of treatment is successful. The fact that you found it before a seizure was a blessing (if you have to find one in this mess).
one day at a time. Thinking of you. By the way, I was speaking with my nurse about another LONG term survivor 14 years...3'x with brain lesions.
Janis
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oh my.. my dears.. that's all i can say
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Big hug and may I say that when they found my Brain monsters, they had no idea how long they had been there and that they were unlikely to cause sx? Sometimes its a blessing to find em early, hon. PLEASE tell me you're at Jeff or some other top shelf place.
Love ya jersey; you're one of the long-termers, you have way too much to do to stop for this BS.
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Aw Ressie. Sorry you're here but hey you know us all already - and you know we're a kick ass bunch of positive non-quitters! (though we still have the occasional crappy day)
Good they found them early and hope they're going to be wading in to zap em soon.
Interesting that you have the same ER/PR+ HER2- as me. I was always led to believe they were most prevalent in triple neg and her2+ just goes to show...
Hey to all the rest of the gang - knackered and nauseous on Vit X, lying on the couch and trying to conserve my energy for a family day out in London tomorrow
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Reesie - I like how K-Lo put it...you have lots more to do! Love the pic...you both look marvelous....thanks for sharing!
Love n prayers,
Sue
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Reesie, stick around!! There are some fabulous women here, who have lots of insight and info. You will love them.
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Been awhile since checking in. I have been enjoying a fun summer with my six year old son, Leo. We have been to the pool many times, Summer book clubs, sports camps, drive in movies, and just being normal. My hair is coming back after WBR and SRS. I hope it got those buggers. My hubby and I leave for Maui August 25th. My brain scans are in September but my PET is next week. I am nervous as I have a good friend my age who was declared NED from neuroendocrine cancer and it came roaring back a month later and now palliative care says she has three weeks. I am a mess. She is like me: 35 with 2 kids. Her husband called to tell me to come down. We met at our son's school because the principal thought we could lean on each other and we have, even though we have different cancers.
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Well, I've had a lot of reading to do here to catch up. Interested in Laurie's dilemma about whether or not to take the steroids before her scan.
I'm having a strange relationship with steroids, having hated them when I was doing radiation and chemo because of the effect they had on me. Then I was gently taken off them and thought everything was fine, especially with the consequent weight loss and rediscovery of my real face. However, although my body should be making its own cortisone now, there are days when I feel a fuzziness in my head and my hearing gets worse and I just want to lie down on the sofa and not have to think about cooking dinner or anything. One time I felt so without energy and had a busy day ahead so I took a quarter of a steroid (1mg) - it cleared my head in a couple of hours and I felt good the whole day, so the next day I took another quarter. At my next oncology appointment I told him what I had been doing and he said that if I felt the need, then that dosage was so small it would never cause health problems. So I now take 1mg every two days unless I have a busy day in which case I take one early morning. Sometimes I leave it three days or until I get the 'fuzzies'. Just wanted to share how my hate relationship with steroids has become a fondness.
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Thanks so much everyone. You all give me such hope. I can do this with all your support!
Kathy, I'm at Cooper for RO and Neuro. I go to Einstein for MO and BS. Cooper is part of the Cancer Institute of NJ (NCI CCC).0 -
welcome reese its a great bunch of folks. so i was dx with brain mets from get go no other mets. had appt with radonc and nuero thurs. 1st one they found is down to 4 from 11mm, second treatment of three only one is leftand its down by half yea oh and they found 2 new ones one is 9mm and the other is 4mm so back for 2 more treatments. they said they are going to stay with the cyber since it is working so well. the radonc also went over mny ct scan with me and said he thought my tumors in breast showed progession but decided to watch them since my x just got increased hope it works hugs to all
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COOPER! My Alma Mater for nursing. Outstanding medical care. They have seen everything.
How do you feel, Reesie?
Tiger, what a conflicted summer plan! Looking forward to Maui but with a PET in between.
Your friend has her own disease process and her individual immune system, don't forget. That said, i am sorry for your grief over her decline.
Love to all, Kathy
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Reesie, UGH! Sorry you're here with us. Banjo, I'm going to ask my brand-new onc about this when I see him this week. I too am an avid steroid hater but whether it's the chemo or the chemo's gift to me of low WBC, whatever.... I am a slug. A slug who is not eating much or doing almost anything. (Even my my vicoprofen with its helpful hydrocodone isn't having much effect) I have a bottle of 3/4MG steroids left and have been wondering if going back on one on particularly awful days would be ok.
Have to be getting up early this week (like 7:30) to take son to camp. Blech. Hard to believe shool is just a month and two days away. I REALLY hate getting up for schooldays. Why must it start so early?
Hope you guys are keepin on keepin on this weekend... Paula
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Some people ......
My SIL sent me an email asking how I was. I replied saying that I had more brain mets, so had needed more gk, liver function was really bad and I was jaundiced and back on chemo. I also said I was so tired I hardly got out of bed except to lie on the sofa or go to the hospital (you can tell I was feeling a bit down when I wrote it)
She replied to me to say I was a 'georgeous miracle' (?!) and why didn't I get someone to drive me over to her house so that we could have lunch!!
I'm not allowed to drive, she is. She doesn't work, has no children at home and is a 'lady that lunches'. Do you think she is just dim or that she REALLY doesn't want to see me :-))
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Our 10 year old grandaughter and her bestest friend (same age), arrived at the airport fromSeattle around 7pm. The laughter hasn't stopped. They are so fun! Spent the entire day in the pool, doing their very best tricks on the diving board. About drove our German Shepherd nuts. He really does want to protect them the entire time. It's exhausting to watch. Finally had to chain him under the shady trees, just so he would rest!! A half hour is an eternity for such a busy boy!! I sat and watched the two girls, all day. That pool has always made me a wreck. Good swimmers, but not good or strong enough for this nervous Nellie. Our youngest daughter is taking them to a kid's gym, after dinner and we'll all go for mani pedis tomorrow. Tuesday, that same daughter is taking them to 6 flags amusement park with one of my nieces and I'll have the last of my 3 week chemo. Then it's off to the coast for a few days with one of my sisters and the girls. They are here for 2 weeks, so I am grateful for the help. My family is awesome. My hubby, 'Grandfather', is taking us to the Monterey Bay Aquarium during the 2nd week. I haven't been there since 1985!!! I love sea life. Hope everyone's weekend is nice and peacefilled. Hugs Jodi
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Tilly,
I think some people just dont know what to do with our honest bad news! They ask, but if you tell them they seem to freak out and act inappropraitely. '
Lately, I just tell 'em, if you dont get a call about hospice, you can assume Im up and about. Is that wrong? I just feel like they cant handle the truth!
But if they really want to spend time with me, they will find a way.
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K Lo, you are spot on. I get sick of the drama and trauma, as though this is happening to them. My cancer advocate, told me when I was first diagnosed, this is not about you. It is about everyone else.
What happens to us, is we end up apologizing and comforting them!! I feel awful being so hard about this, but like you said, unless you get wind of Hospice being on board, everything is the same, including the fact that I can barely walk, my speech is jacked and i have zero strength. If you want to set up a time to be with me, I would love that.
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Hi, PJB or should I sing 'Hey, hey, hey Paula!' (remember that song?) I will be very interested in your oncologist's comments about the alternate day 1mg steroid I'm taking. Although I discussed it with my oncologist, I do feel he is prepared to let me do what I want to make me happy so I don't bother him - the other week I asked him if it was okay to drink alcohol occasionally with Xeloda and he said 'not just allowed, you must!' I really didn't know how to take this; was it okay or does he have an idea of how much time I have left and doesn't think anything will do me any harm in that time?
Has this disease made anyone else as thoroughly suspicious as I've become? The amount of time I spend putting various interpretations on things is incredible when, maybe, I should just let things go.
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i feel much better if i drink a beer in the evening.. seriously.
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So yesterday I have a big family day out in London at a posh hotel in Covent Garden spending an obscene amount of money on tea and cake. We are walking towards the hotel and I start with the whole flashing lights / vision going thing. Aargh! Then I remember that a friend who has suffered with migraines for most of her adult life has said that champagne is good for migraines because the combination of the alcohol and bubbles dilates the blood vessels in the brain and lessens the headache.
I have 2 flutes of champagne and what do you know - the lights stop and don't progress to a headache! I will do further controlled trials and let you know
I stayed in London with my step-daughter last night and had a liver CT and Brain MRI this morning. I'm thinking I have a week to chill until the results and them the damn registrar calls me to say she's looked over my scans because I mentioned to the nurse I'd had an increase in headaches and it looks like one of the mets in my occipital lobe has increased a little and there is a bit of swelling so can I please start taking the stroids again. (She also said it looked like one had decreased in size so hey - take the good news where you can get it!)
It was nice of her to call (and of course it shows they are on the ball) but I would have liked another week on D'Nile
We negotiated for 4mg dex in the am so looks like it's back to night sedation or else I'll be back to 2 hours sleep. They are now trying to squeeze in an appointment with the radio onc on the same day as the rugular onc nxt week so I don't have to go down again. I'm figuring this means some gamma and bye-bye 4 weeks holiday in August. Surprisingly I'm not freaking out which is good but it will be sad if we don't get away somewhere - anywhere - where the sun comes out for more than an hour, the temperature gets above early winter and the damn rain stops.
Jodi - sounds like you are having a great time with the GK's.
Barbara - You're paranoid LOL! Have a nice glass of red! I checked with my SBC nurse today about the 2 glasses of champers (I don't usually drink and am also on Xeloda) and she laughed and said that was absolutely fine and my liver and brain would cope...
Waving to all you lucky gals in the states who are having great weather and to all the UK-ites who last saw a decent period of sun in April.
Lx
And just for the hell of it, I am not going to edit any spelling mistakes...
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