Brain Mets Sisters
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I'm so happy for you Chris! That's my motto as well...glad to be alive!!! Who needs hair anyways. Xoxo Jo
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I am two weeks post wbr and so far I'm doing pretty well. Slight balance issues but again, that has more to do with a previous neurosurgery than the radiation itself. MRI on the 23rd that I'm not looking forward to but hey, worrying isn't going to change anything, right? Prayers & love to all of us. We can do it!!! I know some of the stories sound repetitive but I am so glad for the sharing of experience: keep the stories coming! Love you ladies & I know, hard as it seems today, new chapters are around the corner!!
Prayers,
Nicole0 -
I will Jo ...thx for caring!
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Karen, thank you for the update! Now I'm not so scared. This is a relatively new building so hopefuly they have relatively newer equipment too.
And I'm with JO, definitely keep us posted on the outcome. I'll keep my fingers crossed for you!
Teri
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Karen, I've been worried about you! I hope the Baker team are treating you like gold and test results have only good surprises. When do you get your results?
Teri, fingers double/triple crossed for you too!
Sophie0 -
Just got back from Tom Baker Cancer Clinic and not good news. Three brain tumours, one 3.2 cm by 3.4 cm needs to come out asap since it could be fatal. Going to see neurosurgeon on Monday for consult for surgery. Then radiation to the other two, which are smaller, not sure yet it if will be WBR or not. Will not see radiologist until after surgery. My onc. wasn't too positive as he usually is and did till me it would change my prognosis for the worse now that it is in the brain. Feeling kind of down tonight. Any positive words from anyone that has been through this?
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Karen, just had my MRI today and don't think I'll get the results until next week. I wish I could help. Please try to stay strong.
Teri
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Karen, it must be very scary to hear this and know surgery is next. I hope others who have gone this path can soothe your fears. I would be scared too. Stay strong. Lots of folks here are pulling for you! Keep us posted. Prayers coming your way!
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Hold on Karen....Nancy came through her surgery just fine...no reason to think you won't! This is very serious but don't shut the door yet...it's not over till its over 👀. When I discussed brain mets with my onco (I'm HER2) he rolled his eyes at me like I was nuts and let's pretend it's not going to happen....right...as if it's not going to happen to me.
Your Neuro is an expert and if he is gloomy that's when I'd worry, actually get.everything.in.order. worry to be honest. Have a nice glass of wine, hell 2 if you want. We can't change anything....crap! Sending you best wishes, let me know if I can do anything. Xoxo. Jo0 -
Thanks, Sophie Jean, Terri, Rosevalley, and Joanne for all your well wishes and positive vibes and prayers. I did pm a couple of the girls, including Nancy and others. Positivity is not really something I'm hearing, so far, except from Nancy from whom I would except nothing less. So damn alarming, especially when you have no symptoms and have been stable throughout with lung, liver and bones. I will keep in touch with you all.
Terri - I hope everything turns out to be clear for you.
Nicole and Chris - hope everything continues to go well for you.
XOXO Karen
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Terri - If you had your MRI today and they didn't call you tonite or tomorrow morning... you're probably golden. I got a call the same night.
XOXO Karen
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Karen, glad they caught the dangerous one and are moving forward quickly. I'm just so sorry that you need that kind of invasive treatment at all. One step at a time - we are gamblers here, we have to be. I' m wishing you the winning hand on this one.
Hug
Sophie0 -
Thank you Sophie Jean. Hope you are doing well. We still need to do that coffee!!! LOL
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Karen sending love and hugs. This is such devastating news. But they do have a plan to get rid of the large met and will deal with the little ones too. I have no words of wisdom but Nancy can give good advise. So hard to wrap your head around this.....just sucks so bad.
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Karen,
I know of a women who had gamma knife in 2005 for 2 spots in her brain. Guess what!? She's fine. Almost 10 years later. I have to think about her all the time!
Thinking of you.“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.”
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Hey everybody. Guess I can stop posting on this thread. My brain MRI results were clean! Of course I still don't know what's causing my headaches and incontinence but it's not brain mets. Yay!
Teri
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Karen sorry for the delay but just returned your PM. DO YOUR RESEARCH ON NEUROSUGEON!!! I wound up with the on call doc who was not nearly as aggressive as I would have liked. As a result, I wound up with a recurrence, and needed a lot of PT. Make sure you discuss your goals for outcome. You can get thru this!!!
Prayers
Nicole0 -
Hello,
Just diagnosed today with mets to brain. 3 small tumors and swelling in the left side of brain. Noticed changes in my vision a week ago and just had a CT scan that revealed the demon was back. I just had a clear report from my lungs, now this. I am turning 43 in two days with a 2 1/2 year old. I am so F**king mad right now and I believe I am in shock. I will start radiation next week. Please, please, I need some supportive words right now to stop thinking this is a death sentence. When I was first diagnosed, I didn't think "death sentence", second diagonises of reoccurance in lynph nodes, "death sentence" Now...I never, ever expected it to go to my brain. I feel like I am running out of time for my baby girl to get to know me.....this is so unfair.
ps, what is WBR?
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Lisa,
WBR is whole brain radiation. I am really sorry you got this news. Sending you lots of hugs. I have been dealing with this since last summer and have around 15 tumors which have been radiated. This sucks but you will get through treatment and get through this one day at a time and I hope those days add up to a lot of time and years with your little one.0 -
Formy - Did u have web or srs.can u have both?
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Sorry I meant wbr.
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Karen,
So sorry to learn about your mets. I had SRS both times. Most oncs will not do SRS for so many mets but my cancer center prefers to do SRS if possible. If you do WBR, you will probably not need SRS. I will probably have WBR the next time I have growth. You can do WBR (recommended) only once so I am saving. SRS has less side effects than WBR and can often be done in one day without stopping chemo. Let me know if you need more info. Good luck and hugs.0 -
Karen,
First, I have had grim to cheerful reactions from experts here.... you can go on for a long time.
Second, personally, Id take gamma or surgery over WBR. I know that easy to say..... but at least they can see what they are getting.
Don't listen to grim reapers. There are SO MANY different outcomes. Like Valerie Harper said, "Lets not have the funeral until the funeral" She just started a new show with Leptomening Mets.
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Hey ladies,
Finally checking in on this thread, sorry it has been a while.
Karen - I was really scared about the surgery before, but somehow made it through and, like so many of the things we deal with around here, it wasn't as bad as I expected. One thing, leading up to those nerve racking days prior to the surgery, I tried to get as much info as I could here on the boards, but I also reminded myself that all the doctors were in agreement. Surgery was my best chance for getting rid of this particular tumor (which had been gamma knife'd but grew back). Also, the timing of it,doing it sooner than later, was criticial because it was growing so quickly. The sooner they got it out of there, the "smaller" the surgery would be and the less chance the tumor would cause worse symptoms. That all turned out to be true and now, on the other side of surgery, I'm really glad I had it. They took GREAT care of me in the hospital, I had all the pain meds I needed, I got to go home in 3 days, and aside from one day of headaches and being tired, I actually feel pretty darn great. The scar is healing well and once the hair grows over it, I don't think it will be noticable.
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Lisa from Nova Scotia, I'm Jill from Ontario. Listen, I have a 2 1/2 year old girl too. I have a son who is 4. I felt all the things you are feeling, probably. You just want your kids to remember you and know you. But hey.....guess what.....NOBODY can predict the future. I try not to get ahead of myself, but trust me....I just got myself out of a deep depression. I had SRS almost a year ago. I seem to be stable. Yes, this is scary s**t, but for some reason....we just keep going, why? well because of our kiddies. That's why. I like the buddha quote about not mourning the past or predict the future. This is the best way to a healthy body and mind. I am here with you! YOU are not alone. I let the fear overcome my body, it was NOT nice. I am more at peace now. I feel like I have years ahead of me, so lets do it together. PM anytime! Jill
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can I also say that I am so thankful for all of you and this particular thread!
You have given me so much knowledge and power throughout this past year. xo Jill
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Hi everyone - I am done with WBR and am dealing with the side effects now. The steroids were awful but finally coming down off of them and starting to do a little better, I have 3 more days on them. I was just reading some posts and I am starting to question the WBR decision that I was rushed into. I have seen a few people mention having SRS for multiple lesions, this wasn't even given to me as an option - they said I had 5 small tumors that they could see and that probably meant there were more and that WBR was the only option. I am so afraid that I made a mistake and should've done something before I rushed into it. I have been too trusting of my doctors, my cancer was misdiagnosed for nearly a year despite seeing 3 different drs, and I am paying the ultimate price for it. Does anyone have any positive stories from WBR? I could really use some, there is so much on the internet that says survival is typically only a few months after WBR. I can't stop crying, for my family and especially for my little boy. This is the first time since my diagnosis in December that I have really been scared for myself as well. Thanks in advance, continued hopes and prayers for us all.
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Sugarmagzz,
You have already been through the worst and things will get better from here. Please do not second guess your decisions. There is no right or wrong answer for WBR and SRS and both have their pros and cons. WBR is an effective way to kill all the lesions. with SRS you run the risk of missing the small ones which has happened in my case. I have seen many ladies on this thread with WBR who are doing well. Please do not read Internet stats. They are outdated. My rad onc has ladies he sees four and five years from treatment.0 -
Sugarmaggz-I have not done WBR but I too am in the brain mets boat as of recent. I too have a 2 and 6 year old. It's scary but there are people who have done what you've done and are on here years later. Hang in there sister and we will all fight together!
Hugs and prayers-Gail
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Hi Jill!
Thanks for your post. I appreciate all you have said. This thread is great as I get to hear from all you beautiful ladies and everyone hits things right on the button for me. I wil hopefully meet with the radiologist by Tuesday and find out their plan for me.
Chat with you all soon!
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