Brain Mets Sisters
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Joining you guys as a new Brain Mets Sister. Just diagnosed Saturday with brain, lungs, breast and eye. Still waiting to have biopsies done to get more info. Will definitely be coming here a lot of advice in the future. Heartened to see that so many have Dx dates many years ago! I don't yet have an obvious symptoms of my brains mets. The lungs and eye are obvious. According to my onc, no inflammation in my brain.
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Susan,
I don't know if it helps at this point, but, I got hit with all of those Dx's between September 2010 and late in 2011. Functioning extremely well except forbidden to drive and that's a pain the patootie!
Try to stay calm and enjoy your good days.
K
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Also a new sister. Had emergency surgery to remove a brain tumor 3 weeks ago. Had clear scans last year and had 6 months of AC/Taxol, 2/13, DMx 7/13 with immediate reconstruction, clear pathology reports and complete response to chemo, finished radiation in December.
March 10th, started with headache that progressed to vomiting and loss of vision/balance. Surgeon did say he was able to get all the tumor. Hooray!
But now I need to decide on gamma knife/cyberknife or whole head radiation. I really don't want to do WBR, but doctors prefer it due to the sudden aggression of this fast growing tumor.
How does one make decisions when you are still reeling from surgery?
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((((Hugs)))) to you All. Stay strong, and know that we are here for you!
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K-Lo, That is very helpful and inspirational to me! I'll be rooting for your continued health. Driving is stressful anyway. Don't know where you live but here in SF it's more relaxing to take the bus or Uber. I probably shouldn't drive much longer either as I'm starting to feel dizzy at times.
FierceBluebird, Sorry to hear that you will be joining us. Sounds like you are more knowledgeable than me about treatment as I haven't had any brain treatments yet, only breast. Had to google "WBR" to find out what it was.
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((( Like! )))
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Just got my pathology report back from my lung tumor and it is for sure a BC mets, ER+ which is relatively good news. Of course, the brain mets are an entirely different thing. Hoping to see a Radiation Onc next week for that. Any thoughts on what I can expect? Questions I should ask? I have a 1.7cm tumor on my brain plus multiple lesions but not really feeling any symptoms so far. A small amount of dizziness but not sure if that's the tumor or the stress!
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Hi Susan. I would ask them what spot effects what in your brain. I had no symptoms at all, just hit me in a few days time. Projectile vomiting, could not stand up, head spinning and massive headache. Once they gave me a ton of dex, I felt great, I mean really great?
I believe the amount of tumors will determine if they will do wbr or gamma knife. My Rad Onc told me, 5 and under, gamma, anymore than that, wbr. I,don't know if that is the norm but wanted to pass it along. Let us know what they say.
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I am getting worried. I have been having these headaches for a month now. These are different than my chronic migraine. And also add in some confusion at the same time and the panic sets in. Sometimes I can't sleep and I stay away for 2 days, and then I can't stay awake for anything for days, even if I've gotten normal sleep the night before. My mother thinks I am just lazy because i am in bed a lot. She is also the Queen of the River Denial. ha I fell asleep writing this. I have this weird sensation in my mouth, it just has a surreal feel to it, I guess. And I get this facial twitching, which is very annoying. I am not sure if one of my medications is causing this or what. But I am a lil freaked out. Any suggestions? I see my onc on Wednesday.
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Mzmerz,
We all know what that deep rooted fear feels like, especially difficult in the middle of the night in the dark. I'm a newbie to the brain mets thing but perhaps you should page your onc if you are concerned about the symptoms you're feeling. Perhaps at the least he/she could see you earlier.
Wish I could give you a hug and hold your hand to help you feel calmer. Thinking of you and sending you mental hugs and hand holds!
- Susan
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The deep rooted fear is the worst part of this. It's hard to stay positive and enjoy life or take care of kids and responsibilities when that fear sets in. I too have radiation appointments next week. I had one tumor removed, but because of it's aggressive nature they are recommending whole brain radiation. I'm so scared of the side effects.
Has anyone had WBR and can they comment?
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I dont have to have treatment next week, but I have my every 3 month brain scan. Scaniety has hit me like a brick. that fear is all consuming. Hugs to all of you out there.
Best wishes in treatment for those of you in active treatment.
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Just had my first meeting with the Rad Onc. First of all, I must say, she and her team are awesome! She did recommend WBR. She explained the risks, primarily of losing some short-term memory ability. In the scheme of things though, I'd of course rather be alive with ST memory loss. She also said that some people have seen a better outcome taking Memantine, an Alzheimers medication, during WBR. There don't appear to be many risks to taking Memantine so I will definitely do it. 10 daily doses over two weeks, every business day. Will lose all of my hair for 5-6 months and it may be permanently thinner afterward. Could cause some hearing loss. All not great things but at this point, I don't really have any other choice. I've got one 1.7cm tumor and at least a dozen "lesions" which are really just smaller tumors. She also said there may be many more small ones we can't see on the scan.
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Hi Susan. It certainly helps to have a good team on your side. I'm a little worried about my team. They are very cut and dry, but supposedly very good.
I see my RO on monday and will ask about the memantine. She didn't mention that to me. I had my tumor removed, but want to make sure there are not little cousins hanging about.
I'm getting my expander out next Friday and after that they will be able to do an MRI if necessary. So far they can't get one because of the metal port in the expander.
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Last night I woke up at 1am. Never a good time to be thinking about things, at least for me. I started thinking about WBR and wondering how much of "me" I will lose. They can easily measure ST memory loss with tests but how do they measure a loss of my personality, my sense of humor, my creativity, or even my higher analytical functions. Do they focus on ST memory loss only because it is easy to measure? Perhaps that is only the measurable part of what we lose. Then I started thinking, maybe it's better to live for a shorter period of time but do it as "me".
I spoke to my DH the next day and he said, "Who knows how much of "me" we lose just getting older. We are both 50 but are not the same people we were at 20. Also, he mentioned that, if I don't treat the brain tumors aggressively my cognitive functions will be impaired by the tumors.
Any thoughts on this? Would really love to hear from someone who has had WBR. This post was started with a very ominous statement about being "overwhelmed by wbr" and "being in peace now" but at least since I've been on, no one has chimed in who has had it.
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I agree. I've been wondering the same thing. Will I lose my artistic ability or enjoyment? Everything about it scares me. I wish there were more people who've been through it and could comment.
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To Susan in SF and Fierce Bluebird;
My daughter had WBR as well as gamma knife and Stereotactic. She had severe fatigue and hated the Decadron, but its been a couple years now and although she does have some short term memory loss, thats what post-it notes are for. She is still definitely herself, personality unchanged. Abilities unchanged (she does not ony her taxes but but mine too. Sense of humor almost unchanged just occasionally doesn't "get"it. She's very active, has seven kids and drives them to all school and activity events. She is cantor at her church, singing unaffected. If she didn't still have treatments every 3 weeks, I would truly forget that she has cancer. We are blessed. There are many, many whole brain radiations storys on this site. The most, of course, are on the topic Brain Mets Sisters but you can do a search in the top of this page on the blue list. Prayers are with you.
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Sbidalia, you made my day. So wonderful to hear about your daughter and how well she is doing. I hope she continues to be an inspiration for many years to come. Wow, seven kids!
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Hi ladies,
I had wbr nearly a year ago after my tumor progressed leaving me with multiple mets instead of the one (4cm) I had had previously. I SWORE I would NEVER have wbr. Same fears as you ladies: will I still be me? Is it better to live a shorter life but still be myself ? Will I forget everything? The wbr (for me) was not hard at all. It was the side effects which occurred MUCH later than my docs told me, probably 2.5 months after I finished.I was exhausted, zero interest in anything, thought I was toast (bad radiation pun, I know). Then I began to see light at the end of the tunnel SLOWLY. The me part that I was so worried about is still very much intact. Short term memory loss, yep, got that but my husband swears he can't tell whereas I'm constantly looking for it. That's the drawback to being well read on your disease, it makes you paranoid! To summarize, the risks are worth the reward, at least in my case.
Hope this helps
Love & prayers
Nicole
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Sbidalia and Nicole,
Thanks so much for posting! I'm feeling a lot more comfortable about WBR thanks to your comments. Frankly, I don't have much of a choice anyway given that I have more than a dozen lesions and two kids I need to keep living for. Still your comments will definitely help me sleep through the night.
Nicole,
This is also very helpful information about the lengthy recovery post WBR. I'm trying to figure out when it will be ok for me to return to work. How long until you felt something like normal?
Don't know what I would have done without all of the wonderful ladies on this Stage IV board!
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Hey Susan,
Glad to be of help, makes me feel like this experience wasn't a colossal waste of time! I finished radiation the end of July and was told that 3 days after my last tx was the worst the side effects would be. WRONG!! I actually felt ok for awhile. Then flew to Seattle for my brothers wedding and the fatigue came out of nowhere. That was mid october. All I wanted to do was sleep. Barely talked to anybody, it was such a relief to fly home (NY) and sleep in my own bed. My brother flew out for a work conf dec.9 and was so relieved. Apparently I looked "dead in the eyes " at his wedding and really worries a lot of people. Now Im back to my pain in the ass self. So, all told, 6-8 weeks for feeling a LOT better. Got my hair back too. Best wishes
Nicole
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These posts have helped a lot. I was supposed to start wbr next week but currently sitting in hospital with pneumonia. Not sure what this means for my schedule.
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FierceBluebird, So sorry to hear you are in the hospital with pneumonia. I find being in the hospital to be torture. They never let you sleep! Hoping you will be out soon and able to continue with your treatment.
Nicole, The extra info on fatigue is helpful. I just found out that my MO put in for 6 months on my short-term disability form so I guess she can see further complications down the road that I'm not aware of. I was thinking 2-4 months. Scared me to hear that but the fact is, I do have multiple metastasis sites though it's hard for me to accept because I feel pretty much fine right now.
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The one thing I always tell myself, especially on scan results days is go with how you FEEL. The results are just a piece of paper. The words the doctor says are only words. You're not your diagnosis as soon as somebody says it. When that day comes, you'll know it. Enjoy how you feel on this day, don't look for signs of decline or you may find them! That day may come, it may never come. Live today, you can worry when you're dead. I'm rambling. Wbr side effect? Lol
Best wishes
Nicole
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Love that attitude! I too try my best to be positive. I do believe it will help my outcome but even if it doesn't, I want to enjoy my life as much as possible and not waste it (even if I live to be 100) with too much worry and fear. Some worry and fear is unavoidable but I try my best not to wallow in it.
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I am writing to tell you that I lost my mother. She had battled
metastatic breast cancer for four years. She was amazing. She endured
about 7 or 8 different chemos. But I am not writing you this to tell
you that I don't think it is possible to live a long healthy life with
metastatic breast cancer. I believe it is very possible. And my mom
was very healthy and active until just weeks before she passed. We were
biking and walking. She was determined that she would keep living and I
believed in her.She was going to Mayo and when they gave up on
her we went to MD Anderson. We met with an oncologist that told us of a
women by the name of Helen Moss who had battled breast cancer for years
before all traditional oncologist gave up on her and told her she only
had months to live. She started her own foundation for integrated
medical research called the Helen Moss Foundation.....She lived an
additional 10 years after all traditional oncologist gave up on her.
Please read about her and research integrated medicine. Watch the
Gerson Miracle. Research your options while you are healthy and
everyone around you has HOPE.I believe my mom gave up on HOPE
when my stepfather gave up. All of us kids genuinely believed in her
and she was doing so well even after she quit her chemo. She was ready
to start on the Helen Moss path and she could have. But unfortunately,
my father was completely wore out and I believe had lost his mind from
listening to all the traditional oncologist. He was so scared to let my
mom do anything.....and it ultimately got in the way of almost all my
mom's very last wishes. Don't wait until you have no options to
research alternative methods.....I believe had we done something sooner
my mom would still be here. I hope some of you will look into
alternative medicine and Helen Moss Foundation and will benefit from her
research. It was too late for my mom.My mom enjoyed everyday,
was an amazing mother, and a perfect example to everyone around her. I
am not afraid of my turn to face cancer....I just hope I can make some
kind of impact on it for those of you battling it right now. I can't
tell you how much your blogs helped me and my mom these past four
years......never give up HOPE. I believe my mom left when she was ready
not when the cancer took her from us.I love you all....God bless you!!!
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Hope_4,
Thank you so much for sending us this message. I'm so sorry to hear that you lost your Mom. As you know, many of us on this forum are Moms too. Your message is inspirational to me in so many ways. First of all, I agree with you that hope can have a profound impact on our outcome (you can see my post right before yours). I will certainly look into the Helen Moss Foundation and appreciate the information. Perhaps what inspired me most about your message is that even if I have to leave my children, they may come out of this experience with faith in the power of hope and positive thinking. One of my biggest fears is that they would become bitter and pessimistic about their own lives because of what I have and will go through. Your Mother must be very proud of you!
Hugs, Susan
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You are not going to believe me but I believe my mom is still with
me....A week before my mom passed she sent me and my sister to Flagstaff
Arizona for a get away. My sister looked at me at 11:11pm and said
make a wish. Then a week later my mom called me to tell me that she was
not doing well. My sisters and I hopped on a plan to be with her as
soon as possible. When we landed in Seattle, we received word that my
mom was sleeping for over 8 hours and the doctors believed she was not
going to wake up when we arrived in Arizona. They said her organs were
shutting down. When we landed in Arizona, the pilot came on the loud
speaker he said it is 11:11pm. I grabbed my sisters arm and I said its
11:11 make a wish. The minute we turned on our phones my brother and
other sister text telling us our mom woke up. We have 5 amazing days in
the hospital with our mom. She was amazing. We had 8 different
doctors come in our room and apologize to us telling us that doctors
really are a poor judge at determining a persons prognosis or life
expectancy. My mom was so proud to prove them wrong once again, because
this was not the first time she had been told she was not going to make
it. 2 years ago she was told she only had a month to live and she
lived 2 years longer than the doctors predicted. Anyways, since my mom
passed I keep seeing double digits. At first I didn't tell anyone
because I thought it was just a random coincidence. It has been over a
month and about 5 or 6 times a day, whenever I check the time it is
1:01, 3:03, 12:12....it started becoming so frequent that I finally told
my husband. He believes me now....I googled the meaning of this...And
there is something called Angel Numbers..I believe my mom is sending me
these Angel Numbers and she is will me all day. I believe she wanted me
to tell you all this...And I believe you should not be scared. I quit
working 3 months before my mom passed and spent everyday with her and my
kids. I watched her pass. She was beautiful, brave, and at peace. I
think she is in a much better place now, but I thank god everyday that
she wanted to fight for all of us. She was amazing and she is still
with me EVERYDAY.Love you All!!!! Take Care- My mom had Brain Mets for OVER 2 years.
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Thanks Hope_4! I hope that my kids can see me watching over them as well when I am gone.
Starting a 20 day course of WBR and eye radiation tomorrow morning. My MO said they will not put me on steroids unless I start to exhibit symptoms of brain swelling. Hope I can stay off for the duration as the steroid SEs seem worse than the rad SEs. This topic has been very quiet lately but I'll post about my experience for those who may be on the wings awaiting WBR. I have been reading old postings on this topic to help me gather info about what to expect and it has been very helpful but also sad since so many of those who posted frequently in the early days are no longer with us.
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Susan - on Weds I just finished 15 days of WBR (5 lesions)and am tapered down now to 1/2 steroid a day and off completely in a week or so. It has not been an easy ride. I am experiencing all the se's and so want to believe that they WILL be temporary. Eyesight, hearing loss,and memory loss. Not to mention that I have blown up and look like a toad. Still waiting for the fatigue to drop me, but so far I am able to do most of my daily routine with a lot of resting in between. I am curious about 'not' needing the roids as I was informed just by having the brain masses/lesions would cause swelling?
I will check back to see how you are doing. Keeping you in my thoughts and sending positive energy your way.
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