Brain Mets Sisters
Comments
-
Hi all-
My mom had WBR that ended 3 weeks ago. She started on taxotere/herceptin and new drug perjeta for her mets. She has been weaning off the decadron and has been having alot of trouble with balance. Have you guys had this from the WBR? I wonder if it is due to the wean of steroids or s/e of WBR. I'd appreciate any comments. Thanks.
0 -
Formymomal, I had multiple, long lasting effects from wbr (finished in April), including exhaustion, balance and headaches. My quads were weakened from the dex. And now, I'm not sure what's from the dex and what's from my spinal/fluid involvement. But, the wbr effects last a long time - longer than I expected, at least. I also had mine over 25 treatments so that may be different too. All the best to you and your mom.
Eireanna, welcome - not a place you want to necessarily join, but as you've seen, the folks here are amazing and supportive and have an uncanny ability to provide what you need when you need it whether it be hugs, humor or just a virtual ear!
I'm holding all of you in my heart. I may not post a lot, but I'm reading and trying to keep up. Hugs.0 -
Hi ladies,
it's me, Ana, I'm back and thinking of giving you a bit of an update.
Obviously, I'm still alive. For now
Yesterday, Friday, I finished my 7-th WBR session. 3 more to go.
Side effects, so far : all in all, not as bad as I was expecting. But I'm aware of the fact that things will go worse in the next few weeks.
The headaches have almost completely disappeared. There is no vomiting. Balance seems to be OK. I can walk by myself, I can talk, I can hear and my vision is as bad as it always was. I haven't suddenly started speaking Chinese
My main problem is the taste in my mouth, the constant, absolutely constant nausea. I know it's not vital, it's not killing me per se, but it makes my life miserable. I can't even drink water and there's a lot of struggle to eat anything at all. I tried your suggestions and more, and nothing works. The horrible taste won't go away.
I think I have to resign to it and try to live it over, give it a few more days-weeks time for my taste buds to come back and nausea to go away.
Hopefully, I'll get there.
Another problem, (nothing to do with you, or worry you, you will never have to deal with it), is my growing ovarian cancer. It's painful and on the rise.
Fatigue, so far, is bearable. I crash 1-2 hours a day, after WBR, and then I wake up feeling a bit better and more able to do a few things. Not much, but at least clean my room, wash a few things.
Mentally speaking, I have arrived to a point of some peace. It's not easy, it's never going to be, but at least I have a plan. I know what I'm going to do, I know what my options are and I know that up till the end I will still have a bit of control over my life. Cancer, not even that much cancer, can't take that away from me.
I don't necessarily have to wait alone and in pain for Nature to take its course. I don't trust Nature that much, and look at what Nature did to me! Not much to look forward there
I'm seeing a psychiatrist at the hospital, she's trying her best, but I have a rational mind and I understand that there are no 'happy pills', no easy solutions. Her goal is to take me away from the constant thought of death, and give me a few more monts of reasonable life and a few moments of enjoyment. She is asking me to go for a walk, for a movie, a concert. These are all lovely, but I'm incapable of that much effort. I'm too sick. She's also suggesting reading a magazine, a book, watching TV. I'm trying but it's difficult to concentrate. The best news is that I have truly stopped crying.
And yes, I have watched a movie. The whole thing. I've seen it a few times before, 'Kramer vs. Kramer', but it's still good and it had helped taking my mind of WBR and all the cancer crap.
No point in crying anymore. I have a plan, I'll stick to it.
For the ones interested, the ones that will be coming, a few more medical news:
- in my case, due to the ovarian cancer growing, things are a lot more complicated. However, for most of you ladies, WBR as frightnening as it it may be, it is still a viable possibility. A very good chance of beating the cancer and having at least a few more years of good quality life. No reason of losing hope!
No depression, no crying, no giving up! There's WBR, but there's also SRT and there's also Gamma Knife! Who knows what will be available in 3 more years from now?
You go for it ladies, fight it as best as you can, love your life and enjoy your days! It's not just wishful thinking, it's a reality available to you, well worth all the trouble
Friday, (yesterday), I was once again told that my chances for 6 months are realistical and I will most probably get those months. If I, with so much cancer, have a chance, you have it a lot better.
One more thing I wanted to tell you is that I asked a radiologist (not a doctor, just a technician) :
- 'Do you think I will be able to make to 10 WBR? Without dementia? Will I be able to finish it?'
His answer was:
- 'I have worked here for 10 years. I have never seen anyone getting dementia or having to stop the treatment. You will make it too, no question about it'.
If I can make it, so can others. WBR is terrying, but it's not the end of life.
I want you to keep on smiling and enjoying life. Clearly, WBR it's not the end!
On another note, any movies you would like to recommend to me?
What should I watch? Anything interesting? Foreign movies, subtitles OK with me
Looking forward for suggestions, I am now thinking of trying an yogurt with a few blueberries.
I've just heard from someone that blueberries should only be eaten if organic. If not organic, to stay away from blueberries altogether. Sounds a bit strange to me, (it's something to do with pesticides), and I'll just wash them well and eat them anyhow. After all, what can a few blueberries do to me? Give me more cancer?
I'll take my chances, and go for the yogurt
Talk to you soon, hope you all have a lovely weekend, keeping you in my soul and thoughts,
thank you,
ana
0 -
Dont wanna speak for anyone who's not here, but I think it was Apple who felt deteriorated on WBR> Ill buzz her in.
Will they not debulk the Ovarian CA? I wish you could get started on whatever will shut that down.
((((ana))))
0 -
ana.. it sounds like you are doing better.. only a few more weeks.
as far as movies.. i'd see the Sound of Music, Mary Poppins and some musicals.
0 -
Seven Brides for Seven Brothers has always been my 'cheer up and get on with it' movie. To see Jane Powell go into that filthy cabin, nearly overwhelmed by shock and disappointment and then roll up her sleeves and get to work, has always worked on me. Plus the sublime dancing and singing, together with dialogue that seems surprisingly cool and sarcastic considering how 'sweet' movies often were then. Completely uplifting; just wish I could join in! And I agree with Apple, TSOM and MP are good singalong feelgoods.
Pleased to hear you're getting things into perspective and becoming yourself again. I wish you well.
0 -
i found these little (EXPENSIVE) strawberry and rasberry mints that do wonders at keeping that horrid mouth flavor at bay.. they are not hot - called Icebreakers Duo. they really are wonderful... for Ana.
just a spoonful of sugar........ good luck ana.. you can do it! (i wish you could hear my son #2 say this. it is hilarious.
0 -
Apple whats your latest tx plan?
0 -
Random query. Anyone had extreme hand cramping with brain mets?
I was crying with the pain last night and my hands curled up and went spastic.
Soaked in hot water which helped, took an Ativan and then wrapped them in hot pads and it went away but still getting occasional twinges.
Lx0 -
Hi Laurie, how are you? We've missed you. Hope you're feeling better apart from the hand cramps - how's the infection?
0 -
Not had any cramps - I've had weird sudden movements (eg I filled a bowl with milk and cereal the other day then did a big sudden jerk ad literally threw the contents across the kitchen, hit the dog and everything!)- I have assumed its the brain mets or the treatment,
don't know if that means that hand cramps/spasms could be caused by brain mets
The only time I had cramps was when my liver function was bad - has it been checked recently?
Love mx0 -
I am switching to a new chemo tomorrow - Gemzar. I actually do not want to know too much about it. I do much better if I am unaware of potential side effects.
I went to the dentist yesterday and will again tomorrow - i have small cavities on the sides of my teeth.. they need to be filled. All it all it wasn't that bad. I was pretty irritated by the time it was finished tho.. shudder. I really like my dentist.. altho I just had to make some snarky remark that he needed to rev up the itensity of the back ground music and lose some of his reassuring calmness... introduce some drama or something... maybe some 1960 musicals like Oklahoma. They must have a tape of soothing elevator music. I am so aware of those things. i was about ready to scream.
0 -
Molasses has really helped me with cramps Alesta.. a spoonful a day.. I really like it so i just drink a tablespoon straight but it is delish mixed with hot milk or water and drunk like tea. the magnesium and potassium is like magic and it has plenty of iron and other minerals. i am surprised they don't MAKE cancer patients take it. (who knows, maybe it is slowly killing me). actually i think you'll notice an immediate difference.
0 -
I love very few movies. Thelma and Louise, Big, Animal House, and Love Actually.
0 -
thanks for reminding me of the molases its also high in iron I have my appt fri w/radonc & nuro to go over my mri any one else have a mri after only month? ok trying not to strss. wish everyone calm love and joy
0 -
Hi everyone,
I have been posting over in the stage iv caregivers sections but thought I would post here too.
My mom was diagnosed 2 years ago with stage iv off the bat. Her2+ ER/PR- mets to liver lungs and bones.
She has been on numerous chemos. About a month ago she had to quit chemo because it was too hard on her body and she was in the hospital all the time.
So she was taking a break. In the mean time she had more symptoms, headaches, dizziness, etc. They did a scan and found multiple lesions on her brain. The biggest is 2.5 cm.
They are on the back of the brain and brainstem but not in the mengis. They are still not doing chemo or Herceptin but are doing 15 rounds of radiation to try and relieve some of the symptoms along with decedron.
She is very very weak and can not walk. We do see some memory issues or word finding issues. I am so concerned because she has been off chemo and I am sure the cancer is spreading everywhere. They told us that the point of radiation is to give her a better quality of life for the time she has left. But of course they don't give you a time and I am not asking for a time frame, but it sounds like there isn't much more we can do. I am just looking for answers of what to expect. Does WBR work most of the time? I know a lot of you ladies have been living years with them, but have you been doing chemo while you are getting WBR?
I asked about gamma knife and other options but I guess they were not options and I am not sure why.
Any input or advice is greatly appreciated.
0 -
Ima,
From my perspective, it sounds like your team is either not communicating well with you or you're not completely hearing what they are saying. (No one can grasp such heavy news all at once)
If you do have Palliative Care services, calling them in may help. If not, perhaps you and any other close family need a long sit down with the primary oncologist. Have they mentioned Hospice?
Best wishes, Kathy
0 -
Hi all my mum was diagnosed 13/8/2012 with Lung and brain Mets she passed 9/9/2012 and although breast cancer consumed her body she is still fighting her battle through us she lived every day with hope strength and fight keep fighting ladies please
0 -
Hi ladies,
It's me, Ana, I'm alive
, and back with an update for those interested. Yesterday I finished my last, 10-th, WBR treatment.
First good news, I haven't yet started speaking Chinese (Won-Ton Soup, Szechuan Chiken and the likes
, and I do not believe that I am married with George Clooney. Unfortunately, I am well too aware of my misery Side effects so far:
- a bit of dizziness, very slight headaches, some nausea, woobly feet, shaky balance, but not much else. No pain whatsoever. I am however definitely slower. Slower in everything I do. Talking, thinking and typing are all a lot more difficult.
The most troublesome side effect in my case was (still is, still here) a terrible, terrible taste in my mouth. Can't get rid of it, no matter what I try. I just learned to live it and hope that it will one day, go away.
Another good thing is that although this is only anecdotal, no scans, no tests, as a patient, I can tell you that whatever 10 WBR did to my brain mets, they are definitely not growing and are definitely not happy. Something has already affected them. I am not saying they miraculously disappeared, or even shrank, but they are not growing and are somewhat under control.
The pressure in my brain is definitely less.
For now, of course.
What bothers me the most at this point in time, and it has nothing to do with you and it will never happen to you, is the ever growing, very fast ovarian cancer. My belly is swelling up with each passing day and I am in pain. The nurse called me today and I told her : 'Clodagh, I'm just so terrified and clinging to life. I went to 10 WBR and I am terrified that I did all that just so that the ovarian will kill me in a month. It's not worth it and I hope we can control the ovarian for a few more months as well.'
Once again, over the phone she reassured me that they are looking at at least 6 months of liveable life.
I am going to cling to that hope and fight as best I can to get my 6 more months and finish the things I still have to do before I go away.
I will see the doctor (oncologist) next week and chemo will (hopefully) start in the next 10 days or so. She told me : 'You *need* to have at least a week break between WBR and starting chemo'.
However, for those interested, even this opinion is somewhat confusing.
I asked the Radiologist (doctor): 'Have you ever had people with brain mets having WBR and chemo at the same time?'
The answer was clear : 'Yes. We do that all the time. Patients can receive both WBR + chemo at the very same time. It's common and we do it often.'
Problem is, him, himself, wasn't going to order chemo. Chemo must come from an oncologist, and mine wants at least 1 week - 10 days break. Reason? Fatigue will be terrible, it will wipe you out completely. 'Hold on to the ovarian, it's slow growing, you have some time, it will not kill you now'.
What can I do but accept their decision and try my best to stay alive until chemo.
All in all ladies, taking into account that WBR side effects are supposed to get worse in the next month, so far, comparing 10 WBR with IV chemo, WBR has been easier. Chemo's immediate side effects were a lot worse on me.
Hold on tight ladies, (the ones that are thinking WBR in the future), WBR is not that bad! Keep up the courage and the hope! You will get through it!
yes, you are not the only one! Those fingers / hand cramps happened to me too! My fingers curl suddenly, can't move them and they are painful. Definitely, a side effect of WBR. Can't move my hand, can't do a thing, but it only lasts for a few minutes at the most. So far I just tried to relax the fingers and waited for the cramps to pass.
Are you still having them? Hope they will go away soon, no reason not to. If they are that bad and don't even let you sleep, will you ask the doctors? Maybe they have a solution for that. Hopefully though, the cramps story is only temporary and you will get rid of it soon.
Good luck
I understand you are not really looking for any kind of info regarding Gemcitabine (Gemzar), but I won't shut up
I want to give you a bit, a bit of a good news I won't go into details about Gemcitabine, but please keep this in mind : Gemcitabine is a bit of a special chemo drug. It's targeted and it doesn't affect normal cells so much.
Apple, compared to other chemo drugs, Gemcitabine is easier
It is, I mean it
One thing to keep in mind is that it can affect blood counts. But they recover soon enough, not much of a problem there either.
You will be sailing through, no problems, and the best news? Gemcitabine works! It does, it's a lovely cancer fighter, well worth the try!
Wishing you all the best Apple, I know you will get great results!
Hugs aplenty to you
please read above. There is info about WBR + Chemo, and it seems that in some cases it can be done. Her doctors will know exactly what the best option is, but in the meanwhile, try to keep her as strong as possible, eating, drinking, and don't give up hope! WBR is not the end of the road, and many, many ladies have survived for a lot longer than a few months.
She can do it too, let's just make sure that she stays healthy enough to go through all the treatments.
Wishing you both all the best,
Hugs to all and thank you, thank you for allowing me to unload my story and for reading it
Ana
PS Thank you ladies for the movies
7 Brides - lovely! Sound of music (know it by heart, love it too), let's go back to the musicals and all that magic!Thelma and Louise - loved it, thank you for reminding me!
Today I am thinking Woody Allen's 'Midnight in Paris'. Anyone seen it? Anything else to try?
Let's get a sing-along and celebrate 10 WBR finished!
Will be back later, hugs
Ana
0 -
Ana - you are delightful - I'll be singing along for the 10 WBR completed
0 -
Ana
Good you are feeling so positive. I was told a weeks break between WBR and chemo which was fine as I was so tired and had the horrible mouth tastes.
I asked my onc about the cramp and spasms and we've put it down to a combo of low calcium and dehydration. Finding it difficult to eat and drink and have been prescribe some fortisips which are high calorie drinks by Gp.
Big hugs
Lx0 -
Hello Everyone, I am new to this board. One of the members at Inspire sent me the link and it looks like this is a good place for me. I am a single female, age 60, live alone, and was informed yesterday that I have more than 10 pinpoint spots and one 9mm spot on my brain. I am scheduled to start whole brain radiation next week. I have no symptoms and my breast cancer is otherwise confined to armpit and collarbone. Dr. said i will not need steroids as spots are so small. He plans to give me the dosage over a three-week period. He doesn't want to give prognosis until we do a new body PTscan; last one from 3 mo ago was NED. However, my tumor markers had been climbing up to 140 so oncologist had me on xeloda for last couple of months.
I was i dx with breast cancer in 1997. Did mastectomy, chemo, radiation, tamoxifen, femera and had recurrence in 2008. Again, local-regional, no distant a. I had tomo radiation, NED for a year and then recurrence. I have been on and off of chemos since then. Several months on a chemo, then NED for several months, then back to chemo. I can deal with this. The brain metastasis has obviously thrown me a curve.
Wondering what to expect as side effects. Dr said fatigue, baldness, ears plugged, scalp irritation. Said I can drive myself to and from treatment and that there is ~10% change of longer term side effects. I've been reading the threads and see taste as an issue - I can deal with that. Anything else I should prepare for? Would love to hear any words of wisdom. This seems like such a good group of people.
0 -
i am really surprised that after WBR, that admittedly was a pain (going in every day) that I seem as normal as I ever was. those brain mets seem to have dissappeared. - I guess I am grateful that treatment seems to have worked. The onc. and radiologist were always confident. I cn't really say that anything is different than before.
best of luck to you uoppal..
0 -
Hi Uoppal
Sorry you're here, but welcome to the group
I guess you have already read my post and know that I only finished 10 WBR 3 days ago. A bit too early to have a better idea about long term side effects.
I don't know much about WBR (still learning), but there are a few things I can share.
I read your post and it looks to me that you have a really-really good chance at killing your tiny brain-mets dead, for ever or at least a very long time.
The cancer in your body is localised and under control. It's not killing you and that's great news.
Your brain mets are very tiny, much easier to completely erradicate.
There is no brain swelling, you do not need steroids. That, in itself, it's a great relief! Trust me, steroids can be nasty and it's wonderful that you will avoid them. Medically speaking, this is also great news, well worth celebrating.
You already know all about my symptoms, (earlier posts), and seem well prepared to deal with them.
One thing I want to repeat is that as scary as WBR sounds, it is not that bad and you will sail through it. No reason not to. Your case is special, well controlable and your chance for many more years (forget about months or ugly prognosis! not your case at all!), is very high.
Well worth the fight, well worth the trouble
Stay strong, keep up the treatments and you will get though them in no time at all.
It will be OK, I know it!
Wishing you all the best, backing you up all the way, let's get on with the job and kill plenty of cancer cells. Dead, forever.
Hugs,
ana
0 -
Compared to chemo, WBR is a breeze and I didn't find it at all scary. I noticed I was a little tired and as for taste, could be chemo or WBR.
Have a bit of dulled hearing but not deaf or sticky.
Biggest change was pulling my hair out in handfuls so bald again but in the great scheme of things, a minor inconvenience!
Good luck!
Laurie x0 -
Thank you all for your responses - so reassurring. I have been feeling well and now have hope that I will continue to feel well. Yeah, pulling the hair out in handfuls is traumatic. Mine has just grown back enough (while on cis/gem & then xeloda) to look like real hair. I bought some clippers and will give myself a buzzcut to avoid the handfuls. I'll keep mty status posted and am so glad to do you are each doing fairly well. I intend to keep fighting and it's nice to communicate with positive women in the same situation.
0 -
Apple...I took Gemzar for almost 10 months. It did a great job with me...and no hair loss! It does lower your white cell counts. If you go every week, don't be alarmed if it's held a lot. My oncologist said that happens a lot with that drug, and I still had good results...like my lesions went away! The only reason I stopped it was because I told my oncologist that with that, and Tykerb, and Herceptin and the additions of steroids I couldn't tell what was going on! Because I'd had three good scans she stopped the Gemzar, at least for awhile. I've been off the steroids now for awhile...still trying to get everything back to normal after that...and my next scan will determine what they do to me next!
0 -
I am CERTAIN that my MO woud never give me a chemo break.
Why cant i have it if the other kids can have it ????
0 -
I just read on her blog that Rohm passed away last night. This is so sad. Hate this disease.
0 -
FMG - thanks for posting. guess we all knew it was looming. Hope things were peaceful for her at the end.
Lx
0
