Brain Mets Sisters
Comments
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Hey, Melissa,
The neurosurgeon who is the director of Gamma Knife at our hospital says he feels it is best for patients to get GK if at all possible rather than WBR. Obviously there is controversy here.
Ive had at least 9 done. When he looks again, if there are any new ones, he'll do it again.
It is very labor-intensive and I imagine very expensive. I feel lucky to have it.
Best of luck and welcome to our well populated thread. We know a woman who lived near us who had brain mets for ten years........ No promises, but I like that.
Kathy
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Hi Tillycat,
Welcome - I'm English but we live in Germany and I've wondered about joining the UK site but haven't got round to it and feel quite at home here. Had WBR and hoping that if/when the mets recur, that the gamma knife will be able to deal with them. I am quite astonished to hear how many you had treated with gamma knife - usually above 4/5 they won't do it but clearly you did very well after it. Good luck with the scan.
Barbara
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It's been a while since I checked in. Went to the onc last week, no new tumors, slight growth (mm's) on two others in the brain. I am getting a lot more wobbly, tired and disoriented, but I guess it goes with the territory. What does bother me is the fatigue. I feel like I can't get done what I want to to get done. I have energy in the morning, but by lunch I'm out and ready to lay down. And.............. I don't know about you, but I don't think our family and friends understand the level of exhaustion we suffer through and feel the need to just pop in or call to chit chat whenever. Ok, I'll stop complaining I do have support and a great group around me - Just needed to vent.
I am so sorry that you joined the club Alesta. At least you know we're here for you (((hugs))) Jenn3
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Alesta, ((((((((((((((((((HUGS))))))))))))))))))))))))))). We know the shock of it all. Now is the time to find out as much info as we can and to hold on to each other as tight as we can. Nothing but love and understanding here.
On a question to the group, I thought that there are chemo's out there that do cross the BBB!!! Does anyone know, please chime in.
Tomorrow is my 4th WBR treatment. It's such a small world, the radiation techs all know my step- daughter. They were like, Lakomski, are you related to Steph? We were all so silly after that. I just want you guys to know that s/e wise. My gait is almost back to normal. Keeping as busy as you can, building a support system, maintaining it and RESTING when you have to! Is such a help.
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Renee, my wife was recently told she had 3 small mets in the brain and her new tx is avastin, carboplatin (?) and herceptin. It is my understanding that avastin is a small enough molecule to pass through the BBB. The onc said treating the rest of the mets as well as the ones in the brain was the best way to go, plus the brain mets were small and few.
Alesta, good luck for the second time.
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Renee
My onc told me that there is some (miniscule) evidence that Xeloda can cross over so she has me staying with them until the radio oncs say otherwise. At least it won't do my liver any harm to be on them.
Waiting for someone to call me with a treatment plan today and will hopefully start 'whatever' next week. What bums me out is that when I was diagnosed, I thought my cancer was the 'best' kind (OK so that's an oxymoron!) in that it was strongly hormone positive and Her2- (so theoretically less aggressive) and definitely not the Triple neg that nobody wants. I was told that it was 'very rare' for my type to cause mets to the brain - only about 5-8%. It seems I am more special than I would wish to be LOL
Had a nice email from my daughters form teacher after I explained the situation yesterday. She said that Marsaili had wanted her to tell the whole class and now they are thinking of raising some funds for cancer research. They have als given her a time out card so she can slunk off - just hoping she doesn't take advantage of it - she's not slow off the mark!
Hi Melissa - waving to you over here. At last the sun has come out after a truly crummy month so I can get the washing out and take the dogs out for a walk. I heard a rumour that I have to surrender my driving license as I have brain mets but they're not causing any symptoms and I'm taking decadron so until someone tells me to stop or if I feel unsafe, I was planning on carrying on. Hell it's nearly summer - what else are Beetle Convertibles for???
Planning on calling the pension people in the next few days to see what my options are. Cetainly won't go back to work during WBR (sounds like I'll be snoozing for a couple of weeks...) and then after... Much as I love my job, I've become increasingly frustrated working with patients who have no idea of the wonder of life. They're all just in a downward spiral of alcohol and drugs and sometimes I want to shake them.
Realistically, how long have I got? (DON'T ANSWER THAT!) We told the kids 1-2 years just to give them a ballpark to focus on but have qualified that by saying we just don't know and will continue to live life one day at a time.
Gotta go swallow the X.
Luv and hugs to all
Laurie x
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Alesta so sorry you have to join us big (((((((((hugs))))))))))
Melissa welcome wow they did gamma on 24 lesions thats great I only had 4 and they told me no had to do 10 sessions of WBR. Would of rather done gamma.
Had follow up with RO yesterday all 4 lesions had regressed by at least 50% so that was good news. Friday have to have CT guided biopsy of lung. Not looking forward to that have any of you had that done? Asked RO about following up with gamma since lesions had shrunk she said to wait and save that for when needed but I thought better chance of survival if they did both. Meet with MO next week to get results of biopsy and to see what chemo we will be starting.
Hope everyone has a wonderful day and hugs to you all
Jackie
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Blood Brain Barrier:
I was on Xeloda when Brain Monsters showed up. My Onc immediately called RO. So, I guess Xeloda is one of the possible BBB crossers, yet we went straight to Rads.
The controversy she seems to have is about the retina....
Anyway, the consensus I get is rads for the brain. Philosophies differ from center to center about how Gamma Knife will be used.
Again, 70+ year old lady here lived and looked normal in public w/ BM for 10 years. Just sayin'.... and repeatin.....
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Welcome Laurie, Mellisa and Renee.
I have heard Tykerb crosses the bbb but is only for her2 positive. I have been taking it since the brain mets dx. I have been freaking out as I have new headaches since four days. Did not call the neurosurgeon or RO as I am not ready to face more tx yet. I want to have a good summer with my kids. My entire family is coming to stay with us for the summer to spend time with me. I need to get my head out of the box and will do so eventually. I hate that a headache cannot just be a headache anymore. I have a follow up brain MRI in mid JUne and am tempted to wait till then.
Jackie- great to hear that all lesions have shrunk by 50 percent!
Klo- I hope the rads to the retina go well but understand the worry that goes with being of chemo for six weeks.
I had steroactic /gamma tx even though I had ten lesions as my team wanted to gamma if possible so i would not have to miss chemo. They did say that if the high res MRI showed any more lesions WBR was the only option as at some point the radition impact of SRS/gamma can exceed that of WBR. I think the philosophy changes depending on the team.0 -
Hi jackie
I think the advantage of wbr is that it reduces the chances of any more mets popping up later. If any of the original ones don't get completely zapped by wbr then gamma knife can always be used after.
I had 2 new mets in nov 11 which they treated again with gamma knife. Still not completely sure it was the right decision (I think that I am rather unknowingly being a guinea pig for the gamma knife team ) but I went for it because I was told that there were fewer side effects and also that wbr was always a possibility for later if I needed it
I did hear from one lady who had wbr and then gamma knife - she was doing really well 2years down the line
I haven't had a lung biopsy but I did have a ct guided liver biopsy. I told the doctor that I was pleased it was being done but very scared about the possible pain. He talked to the anaesthetist and I got a highish dose of pain killer + sedative through an iv, and felt no pain at all! - although I do have a embarrassing memory of telling the rather good looking doctor what a lovely man he was and he could operate on me 'anytime' - oh well he's probably heard worse :-)
I had a higher than normal risk of a liver bleed so they kept me in overnight but apparently they normally keep you in recovery for about 3 hours then you can go home
I felt a bit uncomfotrtable the next day but just took my normal pain killers
Good luck
Melissax0 -
Oh formaygirls that's really interesting. The prof who was in charge of the gamma knife team kept telling me about the 'total radiation dose' and then saying it was 'so and so% ' less than if I'd had wbr-----
It made no sense to me at all at the time but now I understand that he was reassuring me!!
Maybe it was because most of my mets were tiny and they had this new super accurate machine that they were able to keep the dose down even though I had lots of them
I'm so glad I joined this forum. I've learnt something that has made lots of the profs comments click into place :-)
Melissax0 -
Mellisa,
They kept making the exact same comments to me. I was very depressed about the dx and along with three doctors in my face going on about radiation dosage had me confused. I only got it as my dh was with me and he is a physist and could talk tech with them. They stressed the imp of the total radiation dose and it was a combination of the number of lesions and the size of the lesions and it makes sense to do a gamma type tx if this total rad dose can be lower than WBR. I just feel like putty when I go the cancer center with an attitude of do whatever as I really do not know what is best at this time. They have the fancy degree:)0 -
Welcome to our thread Tillycat - Melissa. Hope we can be of some help.
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Hi. I've been lurking this thread for awhile. I will give you some background. I was diagnosed with IBC 03/17/10. Stage 3c. Had 8 Chemo first, then BMX, then rads. Went three months NED then started having brain met symptoms .Had scans and showed I have 8 lesions one of them 3cm. I also had small lesion in liver and nodes in chest.I had 5 sessions of WBR in Sept 2011. Chemo started a month after that but I stopped in Jan this year as it was killing my bone marrow not to mention my digestive system. Had great news a few weeks ago that cancer in body was gone and the brain was stable but did see signs of radiation necrosis. So I'm feeling over my expiration date, it's been 9 months that my docs said I was terminal (a little pissed that I told my kids when I could have waited longer). I am still very tired and throw up mostly mornings and not every day. All I can get from oncologist is that it's effects of chemo but it's been 4 months! I think I needed to post finally because Im wondering if anyone is in the same boat with fatigue and tummy issues and does anyone feel scared just wondering when will I die, will it be today? I try to make plans for a couple of months in the future so I convince myself I can make it until then. Just feeling very anxious about "when". So that's my story, I hope that all of you are well today. Jenny
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Wow this is a lot to get your head around!
Just got off the phone with my breast nurse as she said to call her if I hadn't heard back today.
First off, they were saying that because there is a very low volume of mets and they're not causing any major problems except for the occasional flashing lights and migraine-type headache, then they weren't going to treat me at the moment. WTF? I have brain mets and you're not going to do anything?
She did say however that there was a difference of opinion when they first looked at the scans so they're going back over them with the head honcho tomorrow and she call me to let me know.
So I'm wondering, would they not treat because they're not causing problems and save WBR until I really need it? I'm assuming there's only so much radiation they can give you in your lifetime. Assume I'll be scanned at regular intervals but if I've got brain mets woun't they spread? multiply? get bigger?
Guess I have a lot of questions to store up for tomorrow.
Lx
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Laurie,
I have not heard of that where they do not treat brain mets because they are small but I am no expert. When you wrote there was a diff in opinion was it over treatment or whether these are brain mets? I did not get my SRS tx until four weeks after my brain MRI. I hope you get answers soon.0 -
Alesta,
My RO told me this morning, the reason why they do the 10 WBRT, is because they are in the frame of mind that if we can see four, there are more. So they do WBRT and then they will decide to do Conventional or Cyber. (both are probably in the future) She explained the smaller the lesion with Brain Mets, the better the treatment with Cyber. She did tell me to stay off the Internet. She got a kick out of me knowing about the acronyms, But said she went to school for 38 yrs and studied in this field and me not being in the 'real know' She said if I had any questions to take it to her so she could explain correctly to me, because there was to much false, old and different opinions out there.
My thing to get through to her was that I am not looking for palliative care. I understand that at this point we are not considered curable. But I am strong enough to fight and not lay down. Her answer to me was look your not in dire straight, your not anywhere near dying. Your strong and a fighter.
With your situation, I would really question 'waiting' wouldn't they just grow eventually? wait and see? NO!
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i did 14. I feel ever so much better Renee. The onc. said one spot remains but it is small.
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Hey. its been a while since i logged on. 5 days at the coast, An unbelievable day at the ATT park, watching Timmy Lincecumn pitch a losing game. It was 85 degrees in Sf and our seats were right behind home plate. My brother in law, the one who made all this happen, even made me the perfect PBand J. Not a fan of deli sandwiches. We went to a charming place for dinner afterwards. Brilliant day!!! Friday our baby Alyssa, graduates high school. It is going to be freezing, crowded and exceptionally boring, if history is any indication. Can you feel my thrilledness? It is the baby, and we did this 3 times before..... I had my 3rd chemo this morning. Now I have a week off!! Yay! No one touch my port!!! I see my Dr on Thursday, and I am sure those scans are coming. I still haven't had a brain MRI to see what the WBR did to the bastards!! Oh, all you gardners out there, we are planted! Tons of tomatoes. Basil, cucumbers, artichokes, pumkins, crooked neck squash, ugh, all different colored bell peppers, cantalope, watermelon etc.
And.. my token bad girl plants... Their names are Thelma and Louise.
For you sweet girls, who have recently joined our 'club, unwillingly, All I can offer you is what I am doing. I take my treatments, stay completely uniformed, and get on with my life. I limp, I am rather weak, nauseous and I need a wheelchair for great distances (games, graduations etc). I try not to be left handed ( per PT) but it is tough to do things with an uncoordinated hand. I try and have little things planned. We are going to Maui for a week in June and our son will be visiting from WA right when we get home. Even getting new linen is sone thing to look forward to.
I am pissed this HER+ has taken so much, including my longevity, but it is not getting my present and what I have left. I never thought I could ever accept change, but so much? Please take one day at a time, it's all anyone has, and every once in a whlie say a big FU to cancer. It has no value. Kinda like a tick.
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Jodimomoffour,
Well said, I like your attitude. As for the graduation, even fourth time round I bet you'll still be proud.
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Alesta- I would question them taking a wait and see when my brain mets were discovered I started WBR the very next day.
Melissa- Thanks for the info I know it needs to be done just worry because one of the complications can be a collapsed lung and that frightens me
Jodi very good advice
Jen I also have terrible tummy issues if it weren't for that I'd be feeling great. Wish they could figure something out have tried Prilosec, compazine, eat tums like candy and still have a sour stomach most days. The only thing that seems to work is a chocolate milk shake once in a while. As far as fatigue I have good days and bad days on the bad days I just sleep I figure my body needs it so I don't fight it even though I feel like I should be doing something else.
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The steroids seem, no are making me the nastiest person on the face of this earth. I can't take myself!
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Renee.. no body like steroids..we all HATE THEM with a passion.. they make you feel weird, buzzy, exhausted. but they are very helpful in that they reduce brain swelling. Brain swelling is very common with brain tumors, .. . My onc. said they are the most protective drug in her arsenal and that swelling in the brain can litterally knock you flat in no time flat. Even reducing the rate of taking them for tapering can be dangerous. they worst thing they do is make you look fat, and your face totally frumpy. like old Aunty Elsie.
Liquid forms around the tumor sight and this swelling can cause all sorts of immediated problems.. I would think the seizures would be the worst.. I had 2 and they are the most devastating, disorienting things ever. I lost part of my brain for a good 6 weeks. All I was good for was laying on the couch. I needed assistance with everything and thought jello was the best thing in the world. If I was out of jello, I thought God was missing. It was horrible.
so ..please do not avoid your steroids... just wear a tent over your head to protect the public from your face. That's what I did.. a big middleastern scarf and a huge hat.
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Renee - With you on the aversion to stroids but as Mary said, they are a necessary evil.
Jodi - What a fine woman you are! I love your attitude and hence you are my official hero of the week
Melissa - I got an appointment to see the radiologist (can't remember their name) at the Marsden on Monday to discuss options. it seems there is still a difference of opinion about whether to treat now or watch and treat later. Finding it difficult to get my head around it so it will be good to talk it through with them. My husband Trevor is coming with me to take notes and to ask the stuff I won't remember to ask!
Mary - Thanks for the reminder about the stroids. I'm supposed to be taking 4mg twice per day as a maintenance but have only been taking 2mg once which is a bit naughty but have only a small volume and no symptoms so guess I will continue to be uncooperative until Monday when I can check it out with them.
Love to all the other braniacs!
Laurie x
PS: I was trying to do a blog for my kids and sort of gave up as all the blogging software seems to default to most recent posts first which is not what I want. Found a really good piece of software called Penzu yesterday which is an online private journal and have signed up for the pro version (works about about £1 per month) I'm not on commission or anything - just something journal folk might be interested in.
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Dear All,
I saw the gamma knife nurosurgeon yesterday for a second opinion. He looked at my latest scans and agreed it was a mixed bag. He was pleased that something had worked though. The big question is which of the tumours were active, and which were just dying tumours/radiation necrosis". Hard to tell. He has organised a special CAT/PT scan of the head tomorrow. This will tell him which are active tumours and which are just dead tissue. He will give me the results on Friday and we will go from there. Wish me luck.
Lassman
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Oh, Lass, Anytime a brilliant specialist like that wants to know more makes me feel like Im in good hands! Very good luck my dear.
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Lots of luck Lassman - where are you going for the scan (you're in the UK right?)
Laurie x
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alesta29,
I am going to Bupa Cromwell in London for the scan.
Louise
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Alesta29,
Not sure where my last post went to so I am doing it again.
Yes, I am in the UK and will be going for my scan at Bupa Cromwell in London.
Lassman
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Ah the curse of the unintended double post!!!
I've got an appointment to see Dr Gill Ross at the Marsden on Monday. She seems to have a pretty good profile (looked her up on Linkedin and she's written some stuff about cyberknife and treating brain mets in stage IV. I think Melissa was treated at the Cromwell as they had cyberknife there before the Marsden.
Lots of luck with the scan - hoping it's all dead (except the good bits of your noggin of course!)
Lx
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