Brain Mets Sisters
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I have not had skull mets. But I do believe that they treat them with radiation. Brain mets are usually treated with some sort of radiotherapy. After, they might change your meds. Each case is different. Sorry about the new diagnosis, but there are treatments for your situation. Hopefully someone who has had the same diagnosis will post for you. hang in there.
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Hello all
I've just joined this community and it's been a lifesaver. Nice to know there are people (too many perhaps?) who are in the same boat as I am and understand my plight. Initially diagnosed in 2011, initially Stage 2a, had two periods of NED but since January the little buggers have decided they're out there to get me. Have numerous lesions to brain, bone, liver and lymph nodes. Have had SRS (June) and WBR for the brain lesions, SIRT for the liver lesions, took an Xgeva shot for the bones. Am not doing any treatments at all now, bec liver function not good and onc wants me to get stronger - I lost so much weight with the WBR because of the constant cycle of nausea and vomiting. Am nervous that the nasty cells are out there multiplying whilst I am in this weakened state. Sigh... Once I am better, onc will put me on Affinitor and Cisplatin. Had molecular profiling done on lesion samples and these two were top of the pile.
Anyway, just really hoping for words of encouragement - sometimes I find myself with some pretty dark days....
Thank you all, hope to hear from you.
Love and light.
Chinot
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Dear Chinot, sorry you are here but glad you found this Forum.
There are, as you said, sadly too many with problems like yours, who will come and give you advice and empathy, as you've had a tough time of it. We hope you are getting a quality diet of foods to build you up and strengthen your system. You'll find others on here who have fought and are still here, so keep up hope (it is a very powerful fighter) and take each day at a time.
All our best in this fight, and we hope you respond well to the next course of treatment.
Keep everyone informed on progress.
The Mods
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Welcome Chinot my friend! I'm glad you found this thread, it is so helpful, any news on when you might restart chemo? Thinking of you. Clare
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hi Calre
Found it because of you - so thank you!
I'm hoping to start chemo next month, but to be honest, don't think it's going to happen as I'm still so weak. I'm 5'3" and weigh 98 lbs! And certainly not a teenager!
Fingers crossed it will happen soon. Had a coughing fit last night, and ended up spitting in blood. I think it may have spread again :-(
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Hi all - got the results of my brain scan today and it is good news!!! The 6-8 mets visible on my June mri were barely visible this time and the docs do not think my meninges is involved. It was hazy on my last MRI but the radiologists did not comment on it on this mri and my rad onc said she does not see anything there. She said it looks like the xeloda is working and that the met that was zapped in July looks stable and is probably dead. I'm short of breath and have swollen ankles but am so happy about this news and wanted to share. Clare
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Fantastic news Clare!!! Thanks for sharing. I'm wondering, were your brain mets cystic tumors or solid tumors? After my last MRI I found that mine were cystic and my RO said they could also think about draining the biggest one with a needle if it started growing. Has anyone else had this done?
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Dear all,
I'm posting probably in the wrong post and I apologise but need some advice. Last year, I had a IBC scare and all the removed tissues (I went down the breast reduction route trying to get some answers because biopsies were inconclusive ) came back B9.
THerefore, this question sounds way of the charts. Fast forward to this year, and I started having 24/7 headaches, went for an MRI and all they could find were a few white spots (no idea if they were there before (nothing to compare with) but they appeared on T2 and flair images but T1 Gallodium (dye) they didn't show up). I know this might sound mad to you as it does in part to me but did any of you have white spots turning up as mets?
It would be extremely rare and bad luck that something turned up after B9 results, but after 3 months of ongoing headaches at night and in the mornings, no idea what to think, was something missed somewhere or am I just mad. Next MRI in 3 months!
THanks from the bottom of my heart
Alicki
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I went to see the brain doctor about cyber knife surgery. They found one spot in the balance area. I have been slightly off balance. I also have five skull mets.
The talk with the brain doctor was sobering. He said if they find more than 3 or 4 spots (improved MRI) that they will abort the cyber knife surgery. He said then the only solution is whole brain radiation. I said no wbr. I've friends who went from bad to worse with that type of surgery, and reading stories of others, who have had wbr, I've decided that is not for me. I will do the cyber knife.
The brain doctor said once cancer gets in the brain (breast cancer) that even with wbr that the odds of survival is 7.1 months. It isn't a lot more...maybe 2 years if lucky for wbr. If I do nothing with active brain tumors, I have perhaps 1 to 2 months to live. Well, not so good news.
I am trusting my timing is in God's hands...not the doctors. I don't know my future, but pray no more brain mets.
I know there are those here who survived wbr and would give me promising years to live. I wish I could trust but so far all the odds for me since first dx has been not so good. I usually fall to the negative percentages. I don't want to take chances that I will be housed after wbr. I don't want to be a burden to family. I read a story about someone who took care of her mom after wbr...dementia and all. She said, seeing what her mom went through, if she was dx with it, she would never do it. I want to end my life strong...not dependent. I also known a few people who had wbr, who both did not do well...became a burden...and one even died a few months afterwards...because he lost function of a few areas in the brain, and never left the hospital.
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hindsfeet,
I am sorry that you are dealing with this. I wanted to address something you posted earlier on this thread because it made me very sad. You are welcome on bco! Regardless of your position on tx at an earlier stage, every women who is fighting this beast has a place here. Yes, alt tx provokes controversy but those who "opposed" you did it out of concern (although things got heated and ugly at times). Regardless of the tx path you choose none of us wants to see anyone progress or suffer. The choices you make are ultimately, yours, and although not everyone may agree with them, you still have our support.
Caryn
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Caryn, when I posted a few years back I was stage 0 to stage 1a. I mostly posted on the alternative boards in making decisions that had to deal with my diagnosis, not someone else. I did the surgeries, and Herceptin for stage 1a. I felt friends and I were attacked then for our choices and research. I unfortunately happened to fall into the low percentage of a recurrence after the mastectomy that ended me into stage iv. The nodes in question that weren't checked after mastectomy were under the sternum that ended up being the culprit that brought about progression.
When... I have gone back to her2+ threads with questions, I have felt ignored and somethimes even on stage iv. I do not feel at this point the support I need in answering questions I have for all the tumors I'm fighting. I guess, I do not feel a connection here but then why should I? I mostly come here to read stories for encouragement as I sometimes do on another forum. I'm a little lost in the stage iv and still adjusting to being late stage breast cancer. It is hard to believe that I jumped from a stage ia to stage iv. Right now, I'm dealing with life choices and it is a little bit much when you are thinking through bone mets, spinal, lung, liver, femur and brain mets.
Thanks Caryn for getting back with me. I do appreciate being open and talking about my feelings that made me uncomfortable with bco. BCO is helping some people and for them yes, I see there is support.
I do have alternative friends, I met years back, who do both conventional and alternative, who I am still in contact with. We have become life long friends.
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Hi All! I just wrapped up the 5 radiation treatments to my brain, followed by 15 more to my right hip, on Mon. Tues., I felt like I hit a wall. The only way to describe it is I don't feel well. I feel unwell. I didn't have radiation with my first dx, so, I am thinking this is a result of cumulative buildup of the radiation treatments....??
I just want to feel well again. Normal. This is the suckiest disease ever. I'm tired of feeling like crap and always being in pain. I try to put on a "rally cap" every day and get through, but this is a lot for anyone to contend with every day, day in and day out, day after day.
I read about women who are stage 4, hopeful, working out, and seemingly doing well living with this disease. I'm trying to get there, but I feel like I'm slip sliding. Gawd cancer sucks.
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skylotus,
So sorry to hear the radiation has been so tough. I actually felt worst a couple of months afterward (20 days of WBR and eye radiation). The effects, both positive and negative, can take a long time with radiation. Are you able to rest when you need to? I did a lot of sleeping but I didn't mind it since I'm on leave from work. I'm now several months out from treatment and feel pretty much back to normal. I'm hoping you will be able to feel better soon.
Hugs, Susan
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Hindsfeet
I'm so sorry you've joined us here..I just remembered you after your last post on this thread. I don't think you should worry about feeling unwelcome - your questions may not have been answered simply because we have missed your posts in the sea of threads. I only saw your posts today. Well, I really wish I didn't have to see you here but here's a warm welcome to this part of BCO.
I don't have brain mets but there are ladies doing well with brain mets both here and in HER2support forum. I trust you are in good hands of your doctor and the double Her2+ agents and anti-hormonal are a potent treatment combo. Some ladies here have had good control for many years.
Hard as it may be, please do not dwell on the prognosis statistics. I don't have the benefit of anti-hormonals and have been on chemo treatments with Her2+ agent, and am going into my 7th year of Stage IV with liver met. We just have to bite the bullet but there will be still be good days ahead. Take care.
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Hi Susan! Thank you for reaponding. I decided yesterday that if I need to lie down and take a nap in the middle of the day, that's what I'm going to do! And I'm not going to feel guilty about it! I didn't really know what to expect with this treatment and it helps to hear someone else say, yeah, that is normal, or that happens. Rest is healing to the body, and I am lucky to be on leave from work while I am contending (I like the word "contending" better than "fighting" or "battling") with this stage 4 "trickster" (cancer). This really is one day at a time.
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Sky lotus
I think you can expect to feel tired for 2 months or so after WBR - at least my onc said fatigue peaked at about 6-8 weeks after WBR. I agree with napping and have been doing a lot of it! But my Onc also says some daily exercise important - gentle swimming or walking.
I like the word "contending"!
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Clare my love so so happy with the results of your scan. I hope I get good results too - although I won't find out for another two months!
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Skylotus
In July, I did WBR, quickly followed by SIRT (v radioactive treatment - was not allowed to see my children and everyone who walked into my hospital room had to wear one of those protective suits). I'm still suffering from the side effects of both treatments, but most esp the WBR. Am tired and weak, and go through pretty bad bouts of nausea and vomiting. As a a consequence I've lost over 20 lbs in a month, which is pretty devastating since I was already tiny. My doctor says that sometimes the effects of WBR can go for as long as six months after treatment, which sucks. I hope you feel better soon - just remember to be gentle to yourself, and as you said, just lie down in the middle of the day because you want to!
Take care and much love,
Chinot x
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hello ladies. Can I jump in? I started wbr this week and have 3 treatments down. Found out on Sunday that I have 6+ lesions that are wide spread in size and location. Obviously so scared about all of this. Although I've spent nearly every moment of the last year worrying about every ache and pain, this really hit me out of the blue and I am in shock about how quickly things have gone so bad since my stage IV diagnosis. Or rather since being told I was NED just a couple months ago. I was having excruciating headaches and nausea for two weeks. The headaches are much better since being on the dex but I am beginning to have bad episodes of uncontrolled motor functions in my legs. It is scaring the hell out of me. I've been trying to focus on anything that may lead up to these episodes to try to prevent them but can't really pinpoint anything. Maybe fatigue? Not really sure. Does anyone have any insight on that type of experience?
I feel an intense rush to get my affairs in order and am cursing this holiday weekend! Thanks for listening to my ramblings.
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hi Bosco, Chinot and Delirium,
I had to just "sit" with this "met" after I found out too. It seems the brain is a very precarious place for it to be. That's our neuron center, our "computer" if you will, controlling so much more than thought, like motor function, everything actually. Then, it takes time to know if this even worked, the treatments, and every day is...or can be, fear based, leading to more what if's or questions looming large of what might happen next. It's enough to make one crazy sometimes...fear of the unknown. Which is why it's so important to stay focused on simply one day at a time. I got my "affairs" (wrote that will) in order right after I was dx stage 4, and I've been purging, donating and lightening my footprint ever since. Less is more right now, for me and I'm tired of dusting stuff anyway. I don't know what tomorrow will bring, but I know I will get through, until I don't anymore. And that's not for me to say when.....
Thanks for being lights in the dark! xoxo
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The brain is our most precious organ. It was a blow to learn I have wide spread mets, but hoped it would not touch my brain. Unfortunately there is at least one small tumor in the back right side in the balance area. I also have 5 good size skull mets. Next week, hopefully, I will have the Gamma Knife surgery. If they find more than four more brain tumors they will abort the surgery. The brain/spine doctor said once the cancer goes to the brain, basically game over. Even though we are not to listen to what they say, something in you says, while you have a brain get your affairs in order. Be in charge as long as you can. I am doing what I can to get rid of stuff, put my house in order, and to make sure everyone is taken care of. Mom's ... this is our job.
The only real problem I'm struggling with is being on steroids. My daughter says it is "steroid rage". I'm not that bad, just more edgy, and emotional. After the Gamma Knife and radiation I'm now on, I won't be on steriods. Also, hate that my throat, for the neck mets is being radiated and eating/drinking is almost impossible. It hurts crazy to swallow. Food/water taste like cardboard. I am losing too much weight.
My faith in God, and seeing everyday as a gift gives me hope. I know God is walking me through this valley and He is my stronghold. Cancer is too much for most people, even for the ones we love and are close to...and for this reason, I am comforted knowing God will take care of me.
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sky and hinds you hit the nail on the head, of course. Such a surreal place. Trying to get things in order and trying to be a good patient at the same time. When motor functions that have been taken for granted are going. I can't help wonder if today is the end? Since stage IV dx I've come to accept the end is coming, but somehow I thought it would be different.
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I don't believe any doctor should say that because you have a certain kind of cancer it is "game over". Certainly, my doctors have not told me that. There are people who have gone into remission from brain cancer (read "Radical Remission") and others who lived fairly normal lives for years with brain mets (K-Lo who recently passed but lived several years well with brain mets. Tiger_Blood is another long-term survivor of brain mets). My doctors have told me they should be able to keep me going for years by doing WBR and then if anything pops up after that, gamma knife for targeted spots. Of course, they could be wrong, but they could be wrong in either direction, shorter or longer. No one knows how long they will live and we all know that the old survival statistics are meaningless. Anyone with Stage IV should get their affairs in order and be emotionally prepared for leaving this world but I don't think that having brain mets means you only have six months to live.
I was diagnosed with brain, lung and eye mets in March after DCIS 14 and 8 years ago. Had 20 days of WBR and eye radiation that ended May 23rd and wouldn't really know I was sick if it wasn't for the distortion in my vision. I go to dance and intensive yoga classes every day and feel strong and energetic. I have a friend from our MBC group here who also has brain mets and is doing very well.
I feel that I have to speak out for those who have been recently diagnosed so they can know that it's NOT GAME OVER!!!
Hugs, Susan
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Susan
You have said what I wanted to say and phrased it much more elegantly. I refuse to accept brain mets as "game over" and as with you that is certainly not the message I have had from my oncologist. He treats several patients with long term brain mets and I hope to be one of them.
But, of course, brain mets is a scary horrible diagnosis to receive and I agree putting one's affairs in order is the right thing to do. I signed my will a few hours before the last op - I hated doing it as it seemed such a symbol of despair but I also felt better that I was doing the right thing for my family. One of my friends died (not from cancer) suddenly without a will and it has been awful.
I am not going to borrow worry until it arrives. Have an appointment tomorrow with the consultant and hoping I will be back at work next week. In the meantime, I'm making plans for my son's 18th birthday next month and my cousin's wedding.
Hugs to all
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thank you for such a lovely post Susan. It has given me a ray of hope today. Always good to hear those long term examples. The RO seemed to want to make sure I knew how serious this was. Of course I know it's serious. So he told me it could be a month but didn't elaborate on a long term spectrum. I hope everyone is having a good day.
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DeliriumPie,
I don't know what in your diagnosis would cause your RO to tell you you could have a month. I believe you only have 6+ tumors in your brain. I have many more than that. Is there one in a particularly critical brain function area? Brain stem tumors can be very hard to treat as they don't like to radiate your brain stem since it controls your basic functions. How many WBR treatments will you have?
PM me back if you have some stuff you want to talk more privately.
Hugs, Susan
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Sus...apology...the brain doctor didn't actually say, game over. It is something I've heard my son say when you turn a certain age or screw up. I say it when I've thought that is what the doctor is basically saying to me. The doctor did say, I had 7.1 months to live (looked it up and it also says 7.1) life span for those who mets move to the brain. He did say maybe with wbr I might live a year and maybe two. Because I am her2+ and the chemo barrier the brain is difficult to treat. He did not give me longer than 7.1 months to live as they assuming I will have more pop up in the brain.
At this point I am fighting a lot. I can't even begin to think about mets to the lung or to the liver. Right now, we're just looking what is in crisis. I am hoping along with Perjeta/Herceptin, bone hardening shots, and estrogen blockers that it will somewhat control the tumors. I think I read that the estrogen blockers do go through the brain barrier. After radiation, I will be doing vitamin c and other alternative infusions along with conventional. Just wanting for now to be strong for those around me, and to live a quality of life.
Thanks for your input.
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Susan I'm not sure if he thought I was being too flippant, which I don't think I was. Maybe he thought I was in denial and needed to understand the seriousness. The first time around, I fought a little about having rads, so I think maybe he interpreted my questions about side effects as trying to not have wbr. It wasn't at all. I just wanted to know what to expect. I wasn't a basketcase enough for him I guess. He told me not to go and read about wbr, which of course I came straight home to do. Also looked up the 7.1 months and started counting holidays.
Can't remember if I already said it, uh oh, there goes my memory, lol. But I asked him yesterday about te likelihood of this working. He said it should definitely improve things. Then I have to address my new lung mets and chest lymph nodes (thanks for not working the first time rads). Then after that we can look at cyber knife for the left overs. So having a little future plan and feeling better today, gives me a bit more hopeful feelings. I have 8 more treatments of 14 to go for wbr. Not certain but I think maybe I hit the sweet spot for treatment today with it starting to improve instead of irritate more. My head feels a lot more clear and no motor skill problems today. Lots and lots and lots I steroids! Hindsfeet, I understand your wish for peacefulness and I hope you are able to live it every day and blow those 7.1 months to hell!
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hi Ladies! Wow! Reading through the last recent posts, I appreciate the naked honesty and soul baring sharing. That's what we are here for, and you are all so appreciated.
I'm taking one steroid a day, but still getting headaches and wanting to eat armchairs! See cancer Doc tomorrow for bloodwork and get a Faslodex shot too.
I've heard the "game over" thought process with mets to the brain and I've also read the book Anti-Cancer, the author having lived for some time with brain cancer.
One day at a time.....that's all I can do, and I'm ok with that. We all figure out what works best for us and brings us peace. :-)
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