Brain Mets Sisters
Comments
-
Hi. I'm in the freaking out mode. Went in for a head ct yesterday for headaches and less than hour later was back in the dr's office hearing that I have multiple growths on my brain. I'm supposed to be almost done with treatment - my last herceptin is supposed to be in June. It hasn't even been quite a year since I was diagnosed initially. Went to radiation today for a consult and simulation for wbr. Loss of cognitive function? Seizures? More hair loss?i don't know if I'm up for this. And on top of it all, I can't stop crying. I'm freaking out my babies...that is even more upsetting.
My apologies for this post but I'm trying so hard to hold it together as much as I can, but sometimes I can't.0 -
it is reeling news? isn't it mauimom.
Hopefully treatment will go smoothly and effectively for you.. I am rather new to the brain mets deal. So far so good, tho altho I sure was freaking yesterday.. I was able to lie down and pretend to be asleep at the tv tho. How old are your babies? .. and please don't apologize. We can't all be standards of good behavior at all time.
0 -
Mauimom...no apoligies needed and truly, I know exactly how you feel. But it isn't a death sentence and a lot can be done. You won't necessarily have cognitive problems and seizures...yeah, the hair loss is a pain. Truly, WBR works and you can beat this! Here's a great site for more info: www.brainmetsbc.org.
0 -
Apple, your photo is beautiful...
Mauimom, I went through the same experience last October and remember it vividly - no warning, Stage IV from outset and it was the brain mets that hit me with sheer terror. I fully sympathise with you but all of us who hear this news eventually become accustomed to living with it and hoping that treatments will be effective. I wish you good luck with your treatment plan.
0 -
Thank you for being here. My girls are 6, 4, and almost 2...my diagnosis came on her first birthday. I'm going to focus on what we can do and try to be strong again for them.
0 -
mauimom, I feel your sadness, anxiety and most of all the hope that ties us all together..my mom was diagnosed with brain mets from the get so last year in sept, and had wbr in dec, and is in recovery phase at the moment...I wish u all the best and loads of prayers and positive vibes coming your way..xx
0 -
i sure would love to see a pic of those girls mauimom.. i bet they are beautiful - i just love the idea of 2, 4 and 6 year old girls all together. how perfect.
0 -
Hi Ladies,
I had WBR 6 weeks ago to one cerebellar lesion (3cm). Two weeks ago I had a f/u MRI that showed the met shrinking appropriately and the swelling gone from my brain. I'm having SRS today to the lesion. I have had intermittent headaches since WBR and an occasional episode of dizziness, but yesterday I had vertigo/dizziness all day, worsening as the day went on. By the end of the day I could only walk with my eyes closed. This morning it seems much better although I do have a headache.
Thoughts? Similar experiences this far put from WBR?
Thanks so much!!
Lori0 -
God that sounds rough, Lori. I'm sure I have some of that ahead (less no pun intended). But today I just wish you improvement and hope docs thunk its expected. Rough.
0 -
aah.. the terror of brain mets.. I wasn't too really worried till I got the extraordinarily "I'm soooooooo sorries'" from my doctors. I guess this is pretty serious. oh well. it's got to be something.
I've had 5 of 14 WBR zaps and except for a bit of fatigue compounded by all the other stuff i take..... Keppra, chemo, i feel good. I have a new job that involves a bit of driving.. I have experienced no preseizure incidents but am a bit worried about all that.. plus my job involves quite a bit of brainpower.. I've notice a bit of deterioration in writing skills, but not thinking really. I have been an absolute b*tch to be around for my poor poor husband.. bless his heart. I am working on that and have been surprisingly energetic since 5 this morning.. cleaning up after my busy weekend and preparing for a busy day.
Cheers, best wishes and hugs to my new sisters. Think on!
0 -
Thanks, ladies! Best of luck in your own journeys. The WBR wasn't bad itself, but I did feel crummy coming off the steroids.
Hugs,
Lori0 -
- Chainsaw - Good hearing from you! Make sure to get plenty of rest!
- Lorieg - I had dizziness but I think it was because my blood pressure was so low.
- apple - Can you sneak me in your suitcase?
- Kalaoamom - Your 2 weeks will be over soon!
- mauimom - brain mets ain't fun, but WBR, Xeloda, & Tykerb has been working for me!
- To everybody else - Sending gentle hugs and keep on hanging in there!
0 -
Loreig - mum had few episodes of dizziness as well, best to check with your onc or radiologist , thats what we did..xx
0 -
Hi Mauimom. I am new to this forum, so bear with me. First off, three little girls? Super lucky. I have two of each and I would have had a million girls. I am one of six sisters so I can never have enough girls in my life. Like you I just found out that my unwanted, unneeded cancer is now on my brain stem and on both sides of my brain. So effed up. I had my third radiation this morning. I already have some deficit due to the tumor on my brain stem. My right side is weak and uncoordinated and my speech is thick tongued. Other than that I feel good. Not too happy about the progression, but it is what it is. I have a great support system and a fabulous family. My advocate always brings me back to the present. It is all we have. I will take everyday that I wake up to see another day and those I don't want to leave. Oh I have the crying jags too. One of my doctors said that is the steroids. Trust me, I know what real crying is. This is something uncontrollable. I wish you all the best. One day at a time. Enjoy your babies.
0 -
Hi All - First I want to wish you all the very best! It's a rough road to travel that's for sure. Was wondering if any of you have been on decadron or dexamethazone long term? My daugher's been on it for about 1/5 years and has the moon face and thin skin and weakness in her hips, legs, and knees and of course is always hungry and has put on a lot of weight. Have others experienced this and if so have you found any way to cope w/these terrible side effects? She had WBR in 6/10, SRS 4/11 and a craniotomy 11/11 (which didn't bring about any improvements). She is fighting for all she's worth and I would SO love to be able to find a way to give her better quality of life. Any input is apprecaited.
Joyce
0 -
My original dx was stage 4 and I got the news just after my youngest turned 2. She is now almost 6 and I have had wbr as well. Brain mets are not an immediate death sentence that you are thinking. I have had brain mets for over 2 years now and am still going really well. I now have a almost 6,8,10 and 11 year olds. So, I understand what you are going through.
0 -
Your stories are inspiring. I start the wbr tomorrow. Keeping all of you in my thoughts. (and trying to remember the important things in life!)
0 -
I never allow my friends to feel sorry for me...support me but don't feel sorry for me. Because I can tell them, and do, about women with young children who are in the fight. And at the age of 58, at least I was given those years. pbandj bless you a hundred times for what you do! And Mauimom, good luck with the treatments. Check in with us!
0 -
Joyce4123 - Steroids are often necessary but can have terrible side-effects. After my WBR, the doctor began to wean me off steroids. Perhaps they can do that for your daughter or at least reduce it. Please keep us up-to-date.
0 -
My post above has an error in it - sorry. My daughter has been on steroids for a year and a half not 1/5 yrs as my typo indicated. And yes, we have been trying to get her off of them, but when we get down to the lower doses of 3mg or 4 mg a day, we always have to boost it back up due to swelling in the brain again. That's why I was wondering what others might recommend to help. Is anyone on Xeloda? Please let me know your success w/it. Thanks
Joyce
0 -
Joyce....you might ask your daughter's onc. about Boswellia. I know members here have used it.
It is supposed to reduce brain swelling. it is frankincense actually.
I will ask my radiologist about her experience next time I see her. I am on a rather low dose of dexamorthisone (?).. but know, know, know they are absolutely awful in a way.. there really are a lot of side effects and worst... they make you 'look' gawdawful. they kind of alter your personality and make you angry. Being angry at the housework is good. Being angry at your husband or your kids sucks. lots of pent up emotions are delivered. the weeps etc.
good that they work tho.
0 -
Sending all of you with young children love and sympathy. I have two girls (25 and 23) and often wished we had had more. Didn't want boys but who knows? If the first had been a boy I would probably have wanted more boys. Perhaps we should have had a Victorian family of 8? God knows how we would have financed them but it would have been fun.
Hope you all have a good week,
Barbara x
0 -
I have the greatest sympathy for those with small children.. how unfair it is that we should be ripped away when they need us most? I am so grateful that my youngest (girl) is almost a teenager and I got them thru their early years..
How can life be so unfair?
Boys are messy but they sure are fun and surprisingly helpful if you need some muscle. they do eat a lot. I had my first child at 38 and last at 43. I am the oldest of 9 and probably would have had more.. i just loved my babies.
0 -
Hey, all: A group called METAvivor is trying to win money to fund research in metastatic cancer. If you go to this link, you can vote.
0 -
Friends ,
MRI of brain yesterday: all tumors treated by gamma are GONE. There is a new small one which he will gamma.
he says the new chemo may stop the brain Mets by controlling the sources, which are in my chest.
Unexpected good news.
Kathy0 -
- apple - What handsome boys you have! Thanks for sharing!
- K-Lo - Happy to hear your good news.
- Everybody have a good day!
0 -
Apple: love the pic of the boys and love the quilt too!
K-Lo: great news, so happy for you.
0 -
just had gamma knife for the second time, first time august 11th 2012 zapped 4 small tumors, they are gone. six months later , 3 new ones popped up, small enough, so just had those zapped.hope it will take another six month or more before new ones show their ugly heads,getting MRI every 3 months to monitor. can,t complain feel fine, had a good run with xeloda 34 weeks, then halaven, problem w/ low blood count. going on new chemo but don.t know which one yet.
0 -
I meant aug 2011, I guess brain is not working as good as I thought.
0 -
-Apple - love the picture of your boys! Thank you for sharing!!
K-Lo - congrats on the good news!! love it, good luck with the chemo!
Maximus - congrats to you too!! I really need some good stories these days.
I'm about 1/2 through my wbr, struggling a little with the steriods and some nasty hearing loss (getting a referral to an ENT is taking too long!!). Just hoping and praying rads are kicking some cancer a**.
0
