Brain Mets Sisters
Comments
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Spark, I lost my hair from wbr and just stopped xeloda. My nurses recommended eucerin creme for my feet - it is thick as paste! But it helps...
Can anyone tell me anything about spots on my spinal cord? I'm waiting on some other test results but so far, MRI shows spots. The fun never ends.0 -
my hair just started falling out. I am devastated. they told me it was 50/50 chance and that maybe it would just thin... did it fall out bald for you guys?
i am crying, crying, crying...
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I look like your avatar too Tracy. hence the beauty parlor. I kid myself into thinking it makes a difference.
Mauimom, I know nothing of spinal cord spots. I had a cat scan Monday, but I don't want to know the results. The only thing my doc said, was some good changes, some bad and some new. I mentally don't know what to do with the actual news, so just tell me where to go and what new and exciting chemo I will be on. Just call me the ostrich. head in the sand, ass in the air. I think the news scares me too much, when I have no control. I feel better when I am making plans. Live Live Live!!
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Maui, I'm hoping its some weird benign thing, darlin'. Please keep us posted.
Jodi, you are the Queen of De Nile! I always want to know more, as if I can control it.
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Why K-lo, I think you have my number! Now, explain to me the control thing!!
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Plans..... Our second son graduates from Paramedic school tomorrrow at 10 am. Then hubby is dropping me off at a very good friend, who is going to our coast house with me. She has never been. We will have dinner at the lodge up the road. I am all but worthless when it comes to hosting. There was a time.... Then we are watching 'Love Actually" We will be coming home late Saturday afternoon. Sunday our number 1 son flies back to Seattle. Monday I am having lunch with my oldest sister. Bringing her veggies and hydrengas from our garden. At some point, Kaiser will make me an Appointment for my Mugga scan( heart test) pre new chemo. Ewww. They always seem to find me!!! Wednesday, my year younger sister will be here to lay out and get our tanorexia on. Hubby golfs on Wednesdays. That's all I have so far. Not to worry. I have always stayed busy. Nothing changed in that area. My brows, lashes and toes are ready. Quite a day at the beauty parlor with daughter number 2.
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Spark: Yes, my hair went suddenly after ten daily WBR's - gone in two days. Better than hanging around losing wisps at a time. I had already bought two wigs and so was prepared. Like the loss of my breast, it wasn't a problem as life was more important to me.
Xeloda is chemo in the form of tablets; people are given varying dosages and some people take it for two weeks and then have a week off, some take it for a week and have a week off. There is a whole thread on here about Xeloda and its side effects. These, too, are variable according to each person. You will read there about side effects and tips for overcoming or dealing with them. Some people suffer little or nothing, some suffer quite a lot. Read up as much as you can about Xeloda so that you feel informed. Good luck with it.
Barbara
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Have been told bye bye hair in the next couple of weeks but then onto Eribulin so no hair with that one either. At the the way weather is going here I will be back in bobble hats soon... Spark check out the xeloda thread - little hair loss but evil feet. Tracy my hair started to come back on my second tax- dark and spiky like a marine!
Ice cream and cornflakes - I really need to look at my diet!0 -
yeah.. you get used to losing hair, after the 3rd or so time.
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you guys all sound so... i don't know. fighting, i guess. you all have these amazing attitudes. i sound so pathetic. my hair was finally looking ok after the chemo year and half ago. and everything has happened so fast... my lower back was hurting, i was having headaches, and I actually didn't even think it was cancer. my chiro sent me to my doc bc she said my back pain sounded different and concerning. then all of a sudden - bam, i am doing like a million scans, and my onc is calling to tell me it has returned in my bones, pelvic, chest, and brain, then i am suddenly getting WBR and lower back rads in a matter of like 5 days. the nurses at the rads place told me it was a 50/50 chance I would lose my hair and that it may just thin so I guess I was hoping... and since i got thru the entire thing w/o losing my hair, I thought, whew, I made it! but literally the day after I finished, yesterday, it is falling out in clumps.
Right now, I don't feel much hope or fight. I feel beat. and so quiet. I probably "say" more here than anywhere else in real life. I feel like a victim, and fragile. like I just go here and there and people do things to me. I just want the days to pass so I can hopefully feel better some day.
My birthday is Aug 12th. I will be 41. I was first diagnosed at 38. I wanted to fall madly in love. and get married. and have fat babies. and own a house. and a dog. I am grieving, maybe. still in shock. mostly heartbroken.
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Spark,
Lots of hugs. I just lost my hair last week with my chemo. I will start WBR in a couple of weeks so will go through what you have. I hope you will be better and giving me advise on WBR. Things will be better and some days they get worse. I was dx in Feb this year and the first few months were a haze but then slowly there are days when I am able to forget the future and focus on enjoying the day. It is a cliche and I am able to do that sometimes but I try and i come to this board to get inspired. I will be 41 next month also. Hopefully we will get to celebrate a few birthdays together. I hope today is a better day for you.0 -
Happy Sunday everyone. I just came back from the coast with a fabulous friend. Felt like I was with a sister. It was beautiful and peacefilled. We watched 'Love Actually', my fave and gossiped about family, and ate nothing but junk. Our oldest son left for Seattle,(home) this morning, but first he brought me a banana split last night! I ate the entire thing. Tonight my youngest sister and family are coming for pizza. My hubby and her hubby are BFFs so it's perfect. Tomorrow, our oldest daughter and my oldest sister and I, are going to lunch. Michaela (daughter) can be bought for lunch. I need a driver. Then I have to get down to medical business. I need to see my oncologist, schedule a mugga test, and figure out my new chemo. What is new with you? Hugs Jodi
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Love Actually - my fave scene is when the kid gets into the taxi between Hugh and Martine dressed as an octopus - his face is a picture!
Sounds like a fab Sunday. I have been stuck to watching the Olympics which has been fab! My mum came yesterday and has been washing and clearing up for me which is great as I'm just about to burst with the weight of fluid I'm carrying so have been trying to lie down. Hopefully I can breathe a bit better after drainage Tues or Wed.
My son Mischa is 15 tomorrow and he's going out with friends to the cinema and pizza.. Promised him I'd dye his hair in the am...
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Alesta, I love British films. They have everything down perfect. I'm glad your mum is there with you. Hopefully, the puffiness will go down with rest. Your son's name is awesome. Happy birthday to him!! Those kids and their hair!! Thank goodness it is a renewable product! I am switching between the Olympics and baseball. I adore the Olympics and England has done them proud. We just need to reset our clocks for the duration!! Cute athletes.
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Thank you formygirls.. I really appreciate your words..
things for me have unfortunately gotten worse vs better.
I was told that I have leptomeningeal metastases. "Two to five percent of women with metastatic breast cancer experience leptomeningeal metastases (LM). This is also referred to as carcinomatous meningitis. LM occurs when breast cancer spreads to the meninges, which are layers of tissue that cover the brain and the spinal cord. Metastases can spread to the meninges through the blood or they can travel from brain metastases, carried by the cerebrospinal fluid that flows through the meninges". It is normally considered end of the line.
Rohm, if you are still on here, then it's the same as you.
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Spark,
Sorry to read this. I have leptomenginal mets also. It sucks.0 -
How do you know this? What test/scan does it show on?
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I think this is what I'm waiting to find out if I have? Waiting on cytology from my lumbar puncture to see if it's in the spinal fluid as well as in(?)/on(?) the cord itself - Jodi, my neurologist and oncologist ordered spinal mris and then the lp based on the scans.
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I am so sorry spark and formygirls. So sorry you have to deal with all of this. Gentle hugs to hoth of you. You are in my thoughts amd prayers.
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So sorry to hear about the LM mets. I asked my onc if I should be tested and he said "treatment is the same as for regular brain mets" I guess because I'm HER2- but think there are options re omaya reservoir?
Big hugs to you all lx0 -
With Leptomenginal mets, you also get intrathecal chemo through lumbar or omaha . I get it every two weeks.I just had a brain MRI today that showed more tumors. I guess I will begin WBR this month as I have not had them yet. Last time around i had radiotheraphy but this time there are too many i think. I see my neuro oncologist tomorrow. Shit never ends. Is the standard dosing 10 or 15 days for WBR? I am worried about skipping chemo but save the rest of the body or the brain???
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FMG
I guess if your liver is doin ok-ish I'd go for the brain. That's what they have done with mine. WBR wasn't too bad (in the great scheme of things)
Having said that, I'm now in hospital overnight having asitic drainage. Didn't want to have it today as its my sons 15th birthday and I'm pretty sure I'm not going to be around for the next one. Had to drive 80 miles to get here but feeling more comfortable so guess its worth it. DH headed home to rescue my mum from the kids! (she's in her 70's and copes well but think the dogs and cats are too much to handle!)
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formygirls: I had 10 WBR, that sounds like the "standard" dose. how long has it been since you were diagnosed w LM? and how was the intracathel chemo? what was the chemo name? side effects?
jodi: my onc found it from my brain mri scans. they still need to do the lumbar puncture to determine its in my spinal fluid, but reading the symptoms, i am certain that I have that as well.
mauimom: have youhad any symptoms? i had really bad headaches...
justjudie: thank you...
alesta: what is asitic drainage??? my onc said the first tx for me was the WBR bc I was in pain. I will see her on Thu to now plan for chemo...
so this is a website I found for info that you all may already know of: http://www.brainmetsbc.org/index.php?q=node/44
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Spark
Along with the liver,lung,bone and brain mets I now have pelvic and peritoneal mets. Hey it'll soon be easier to list the places I don't have them (sigh!)
As a consequence of the liver/peritoneum I have a constant build up of abdominal fluid to the point that it's difficult to move around and breathe so I have them drained (for the second time now) Hopefully they will take off around 6-8litres today. They may improve if my next chemo kicks some ass (Havalen ?sp). I had to stay off chemo for 2 weeks because of the WBR.
Feeling more comfortable and there is now room in my stomach for food Yaaaay!0 -
spark, my symptoms that caused my docs to order the spinal mris were a right hand tremor and tingling. The brain mri wasn't showing anything that would cause those symptoms as the tumors were mostly on the right side. So, they wanted to look farther down to see if anything was there - lo and behold, they were right. I'm lucky, I guess, to have doctors who take my symptoms seriously and try to figure out why they're happening. I just wish there weren't symptoms in the first place.
formygirls, I had 25 sessions of wbr - I think they said lower doses for a longer period of time than the usual 10-15; supposedly just as effective but with fewer side effects. Not sure about the side effects part - I lost all of my hair and had nausea and dizzy spells for a while.
all good thoughts to all of you -
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I had 21 WBR sessions over three weeks.
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da winner!
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Ladies, don't mean to intrude but have a question. I had a recent Brain MRI due to headaches, loss of balance, nausea, vision problems. MRI is clear EXCEPT for a small 5mm lesion that they can't say if it is a dura metastasis or meningioma. So I'll need a repeat MRI.
Did the brain mets show up for you the first time or was there ever a question and you had to have a repeat scan? I have widespread bone mets, especially bad in my spine and pelvis so wouldn't have been surprised to have found mets for certain. Just expected a yes or no - not something in between.
Thanks - Brenda
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Brenda
I had a CT way back last year and I think on reflection I had a met from the start (due to the random migraine) but it wasn't picked up.
The MRI recently showed the few scattered mets (frontal, cerebellar and occipital) quite clearly and now after 5 WBR sessions (hey gals I'm way down that list of numbers -think you won it Barbara! ) ill have a repeat in a few months to check how things are.
I guess with brain mets they go on the scans and the symptoms so a repeat would be a good thing, especially if symptoms appear to be changing in any way.
Hugs
Laurie x
Edited for 3am spelling!0 -
So, here we go again. The LP report came back with cancer cells in my spinal fluid. I'm scheduled to begin intrathecal herceptin tomorrow. Are any of you doing this? Those of you with LM (I can't for the life of me spell it out), what treatments are you doing? It doesn't seem that there's a lot of options...
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