Brain Mets Sisters
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Hi Seashine (and other newbies),
I'm sorry you find yourself here but you will find so much love and support. The initial days, weeks after a brain met diagnosis are the worst. You'll feel better with each passing day, and especially once you get a treatment plan in place. Nan has great points about GammaKnife. I had gammaknife to my tumor bed, after a craniotomy. My scans continue to be clear, 2.5 years later.
If you haven't already, ask for a referral to a neuro-onc. They are a invaluable part of your team. My MO always jokes that he takes care of me from the eyebrows down and the rest is up to my neuro-onc. The more specialists, the better!
Best of luck to you.
Carrie.
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Seashine, sorry you are here but good info has been given. If you have any questions about WBR, I can help with it. Had it almost a year ago and doing well now. I can also tell you surgery need not be feared. Let me know and sending hugs your way.
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sea shine know it's not the end of the rope. Brain mets can be quite treatable. Read through this thread it goes on for long time. You'll feel better once you have your treatment plan in place. Stay strong, cry and scream too. It sucks but gets easier too. Make sure your at a good neurological cancer center if you can be
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Pagej let us know how it goes.
Seashine, there is lots to do for brain mets, it's not the end. But where are the tumors is important to know, is it in the brain itself, which part, is it in the skull? how close to the dura etc..and how large, those issues will play in for sure how Onco will treat it, are on treatment, sometimes they want to wait for systemic treatment to help, sometimes they have to radiate. Hopefully you are a NCI center, it's best, or at least a decent place. Keep in touch.
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josey / prettyblueyes....are you still reading this thread once in a while?...with all the new sisters/brothers joining i kinda lost track of you, but i havent stopped thinking of you...you have had so many shocks, i cant imagine what it would feel like to be DX stage 4 when my child was only months old and there are other young ones to worry about....sorry i'm not on instagram (so i cant see your world ) , but i hope you have tons of support out there and we are always here if you need to vent to people who understand (and wont tell any one how you really feel, lol )....
big (( hugs )) to all my cyber sisters/brothers
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To all you wonderful people on this discussion board, I want to thank you for your collective wisdom and the beautiful spirit you possess in encouraging each of us on our personal journey with breast cancer. It has been a tremendous blessing to me. I am posting this in the threads I either participated in or read regularly due to my diagnosis. Sorry for duplication.
I've been meaning to update you all on the study I was in, but I couldn't because typing (or anything with coordination) was pretty much out of the question. I officially started in the study on May 22, and found out on May 26 that I had acquired a whole new crop of small tumors in the brain, while the one larger one had grown to more than 3 cm. I immediately began 10 days of wbr. There was a great discussion and it was decided I could stay on the study if I didn't have more than 7 days on 2mg of decadron a day. So, I underwent the radiation surviving on an alternation of Tylenol and Advil to keep the headaches down. We timed the decadron so I could have it down to the end. Really, I wouldn't recommend it, although it pretty much eliminated coming off the stuff at the end since the dose was so low.
My 40th birthday was June 25, which coincided with a low point for me. My coordination on the right side of my body gave up and I took to eating with my left hand out of necessity. I was already scheduled for CT scans on the 30th, so they added another brain MRI to go with it. End result, progression everywhere, but it's my poor brain that matters. I was immediately put on 4mg of decadron 4 times a day. What a help. I can now walk and type and slice a banana. I actually took a shower by myself a couple of days ago. But the brain gets tired and I have to remember to make allowances for it.
July 5, I went to see my onc for the actual report from the scans. I saw all the pictures and know the worst. She has never wanted to give me a time frame, but she sat there and said I have 4 to 9 weeks, and there is no way to know how many of those weeks I will have a functional brain.
There is just no way to convey how that hits. Maybe a long, long silence. In the 22 years that I have known my husband, it is the first time I have seen him cry. I know that he has, but I have never seen it. I'd rather not have.
My parents were visiting and working on our house. It was good to have them here. My older son came home from the summer camp where he was working, because he needed to be with me. That was before we knew, and he was planning to go back. He'll get it his stuff tomorrow when we pick his brother up from a week there. He does not yet know, and I dread the telling of it. I hope this week has been really good for him and that he has made closer friends with the other boys from our church that were there. He's going to need them.
I have been referred to hospice care, but we will wait on that (by mutual consent) until we return from a long drive to Ontario, Oregon to visit my big brother, who cannot come to see me. I haven't seen him in 3 ½ years. We were planning a little family vacation in August to DC. We've just changed the dates and direction. The onc said to go!
On the home front, we are making preparations while I can make decisions. I am amazed at the number of responsibilities I have to extract myself from and train someone else into. Hopefully that means I've been of some use to my fellow human beings. Yesterday we visited a couple of funeral homes in the area. It was a curious, but okay experience. We tend to be very practical and straightforward people, so it didn't seem emotionally taxing, although it must have been as we both came home exhausted. Since we have the choice, we want to have things lined up and sorted out as much as possible so my beloved ones don't have that descend on them at the last moment.
Strangely, I am at peace with all this. Back when I knew the bc had returned, I gave it all into God's hands. It was a good choice because He's carried me along and I've been happy and cheerful all the time. I probably won't be posting on this board again due to time constraints and the emotional energy involved, not to mention mental effort. However, I want you to know I think you all are the BEST!!! My beloved has offered to post on here to let you know when it's all over. That's a sample of my man!
Wishing each of you the very best. Keep your heads up and smiles on your faces. It always makes the day go better!!
With my family on June 17.
Aren't they just the best?
With my beloved on the eve of my birthday. Our church gave me a fantastic party!
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hugs and prayers this board too.
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rgc77 sending love and prayers to you and your family. What a powerful post. You sharing your experience is a gift to all of us.
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Sending you peace and love, sweet thing. You'll be close in my thoughts xoxo
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I also want to send my thoughts and love out to you and your family. You seem at peace and I am glad for that. Hope your visit with your brother provides some welcome balm for all you have been through. Your words are thoughtful and thought provoking.
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rgc77. I hope I have your grace and state of mind when my time comes to write that message. The devastation comes through but also a sense of your eternal optimism and love of family. Be as well as you can be for as long as you can and my thoughts are with you.
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i feel such a connection with you all....this just really hurts....all i can see is the pain on your younger sons face and i cant help but think......with all the horrible people to pick from, why take a young loving mother and wife?....?....? .....im sorry....
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Rgc77 thank you for sharing your experience and for taking the time to say good bye. With love to you and your beautiful family.
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rgc you were always so supportive, thank you so much for being there. and your optimism was such a force. what a beautiful family. Nan why why why??? it's the most devastating question....My wish for you is to find peace, have peace and be in peace.
Jos how are you coming along?
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rgc, thank-you for sharing your peace, wisdom, and love with all of us here. I wish you a time of peace now with your family.
Much love.
Carrie
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ok sisters....this girl is starting to worry about all of you...i have nothing to update so im waiting on you....its been a week ....rcg77 you are still in my thoughts and prayers and i pray that you are pain free...big hugs to all
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I am doing ok. Living life on a three month cycle and every weird thing freaking me out. But so far clear brain scans for which I am grateful. You all get it. Looking forward to everyone's updates and all of you are in my thoughts. I mostly lurk as it seems like such an effort to post. Glad we have this space to be honest and with people that get it. Much love as we struggle and to you RGC770 -
I'm doing ok. I'm having some trouble with my knee - not sure if its SE of arimidex or if I tore something. I see an ortho doc on August 7th. I am not sure whether to hope for it not being torn and just being a SE or hope for a tear that a surgery can easily fix. I was hoping to make it thru 2017 without any surgeries.
My appointment letter came in yesterday's mail, next brain scan is September 11th. My neuro onc said if it was clear, he'd discuss going out to scans 1x a year. Not sure if I'm ready for that or not. I hate living in 6 month increments, but it's also reassuring that it's being checked.Much love to all of you.
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Goodie just my way of looking at things, i'd ask him to wait on it, MRI does not have much radiation, and much of peace of mind. Xray for the knee?
Josie so nice to hear you are coming along, your little one must be giving you a run for your money.
Nan thanks for pushing the convo.
Awating on PET/CT results for Dani, they messed up on the report, comparing it to 2 yrs ago now there is a delay and extreme anxiety. Monday hopefully we'll know. Most importantly we need to know re: the trial if it's working. The BT are not great, so there is always room for worry! I hate end of the weeks scans, it's not a good idea, not for me. I asked RO about the edema, she said it's probably from radiation. So you damn if you do and damn if you don't. She is also waiting on these results, and then she'd be due for a Brain MRI. And so it goes...
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I haven't posted much and it is sad to report that my mom was doing amazing on her trial (bone and liver let's only) for over a year and we learned yesterday she has joined the brain mets club. She started today on targeted radiation to two areas that are most concerning, although there are other spots. I'm hoping for a lot more time and good QOL as she's opted not to get WBRT.
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hugs to you daughter. This site has lots of helpful and supportive people. Hoping that the treatment helps and you get much more time with your mo
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I hope everyone is doing ok and enjoying summer. We are scheduled to get the results of my mom's scans on Tuesday. Her last WBRT session was in Dec. 2016 and her brain CT in March showed some progression. She is also back on Taxol and Carboplatin for her liver. Her neuro onc seemed to think the Carboplatin was a good idea for the brain also. I thought chemo couldn't cross the blood brain barrier, so we will see come Tuesday when we visit her MO.
Daughter, I hope you get so much more time with your mom as I am hoping for the same with mine. I see we are neighbors....I live in RI. Feel free to message me if you ever need to talk or just need some support. ☺
Tracey
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Tre4, sorry to hear about some progression for your mom. That is scary for sure. As far as chemo crossing the BBB, my MO as well as RO have said after WBR, the BBB remains open to allow for some chemo to get through. I am not sure how long this effect lasts, but I am sure they can give that info. Hugs going out to you and your mom.
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I was told I may get more response here.
I have over 20 small brain mets that were discovered in May. One is bigger in my cerebellum. Had whole brain radiation daily for 3 weeks. I started Cisplatin Tuesday. Was told only 50% chance it would work and need to wait 3 months for scan to check.
I was just wondering if anyone could post any possible correlation between symptoms they had and if this led them to think the Cisplatin was working.
I know my oncologist would tell me if they had real links, but the waiting and wondering is going to drive me up a wall. 🙄😀 so anything..insight, guesses, etc. Are Welcome.
Right now the only possible connection I have of a tangible symptom is an eyebrow that feels numb and a shoulder twinge. Not much to go on. 😂
Thanks!
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Thank you Mara, it's good to hear from somebody else that it is a possibility....hoping for good news on Tuesday. Enjoy the rest of your weekend. ☺
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Sorry Loves Loons. I can share my SE after the whole brain radiation in an effort to help.
Biggest thing to deal with is that the radiation works over months. This does cause a lot of inflammation and in time will subside. The symptoms were different than what you describe since I had one met on the outer layer (dhural) of my brain. My main issues were extreme fatigue for approx 3 months, loss of appetite, nausea and vomiting even through the steroids. I did not receive chemo immediately after treatment so I would not be surprised if you are also dealing with SE from the chemo that can really confuse the issue of what TX is causing one thing. One thing I WILL say about WBR, once you start feeling more yourself, it does not take long at all for fatigue to lift or eating to return to normal.
Best advice I can give, rest as needed, exercise as much as able, even if walking around your house. This will help build endurance and spur fatigue recovery and appetite. Even a one minute walk around the house several times a day counts. Once the appetite returns (assuming it left you), consume some antiinflammatory foods. This will help the brain settle down. Obviously, if you are having the symptoms you describe and they will not go away, your MO/RO need to be told. I will post a link below for the best antiinflammatory foods. Good luck and hugs.
http://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation
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Hey ladies, I hope you are all doing well. My mom's scan results showed near complete resolution in the brain and significant improvement in the liver. Words can't express how happy we were to hear that news! Chemo break this week and she'll start back up next week.
Tracey
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congrats! Tre4!
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Tracey, that's wonderful news!
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yeah that's awesome news for both of you!
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