Brain Mets Sisters
Comments
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Did I mention i had fantastic scans results.. everything has shrunk or is stable.. Of course I was expecting the worst.
I have a nodule on my adrenal gland and a boob with activity.. both shrunk. yay!
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Big YAY Happy dance for our dear Apple.
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Can't dance at the moment but waving my arms about for you, x
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Way to go Apple
Whoopee!!!!
Lx
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Also meant to ask (although I know I have seen a recent thread). Has everyone's hair come back after WBR? I ave precisely zilch since in came out at the beginning or August. Of course it could also be the Halaven as I understand that it's a 50/50 chance of losing it. Thinking I mat have to cave in a buy a wig but have no idea where to start. Don't want to look like mutton etc but not sure I'm ready for a grey one yet...
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fab news apple...xxx
hair after wbr....i have old man hair..all round the side nothing on top but with closer inspection i can see lil blonde hairs on the shiney bit so fingers crossed....my nurse kept quiet till now and said she doesnt know anyone with hair growth after wbr..so im half proving em wrong..lol#
went to oncologist today and herceptin treatment..had to see whats next after it appearing in my spinal column..thought they was going to say sorry no more but i have been put on a pill form of chemo called capecitabine i have to take it for 2 weeks everyday then 1 week with out......anyone had this chemo and wot side effects did you get?
hope everyone is doing ok
all the breast
tracy,xx
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Tracy
There's a thread started by Lynn called 'All about Xeloda' which is the other name for capcitabine. Check it out
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thank u alesta...ill have to see if i can find it ,,i only come on this post..xx
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Apple what great scan results. Loving that news!
Alesta my rad doctor told me that my hair would not come back. Sorry! Finished rads end of July/August, still bald as a baby.
I hate that part, at least with chemo fuzzy thin hair came in!
Hope everyone is doing well!
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Alesta, my daughter's hair has gradually come back...no longer luxuriant, brown with red highlights but grey and curly. But it's now about 2 inches long and she is very grateful for hair. It's been about a year since WBR. Good luck
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My doctor said WBR might affect hair growth and might not! I ended up going a different directtion, so I can't tell you from personal experience.
Apple, good scans...yea!
I got good scan results too from the neck down so get to continue Herceptin and Tykerb for awhile longer...yea! My brain MRI was a little more fuzzy. My brain has activity right next to the one pesky lesion..looks like they're going to treat it with SRS, but we're waiting to find that out! I knew I had something goin on up there...just had to wait for it to get big enough that the docs noticed it too! I had even mentioned it several months ago, but without them seeing anything substantial they were hoping it was just response rather than more growth.
And I have never had seizure medication. My issue has been in my cerebellum, and without knowing if that makes a difference I'd ask!
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Mine started to grow after six months but has slowed down now. The hair round the edge grows smooth and silky and I have to keep cutting it because it pokes out of my wig. The hair on top, however, is like a potscourer, grey and wiry, and has a pink patch in the middle which doesnt seem to want to grow anything. Sometimes I think that instead of my normal make-up, I should paint on a great big red mouth and two black crosses for eyes - I'd look a perfect clown. I like my wigs and can't say it bothers me much, really.
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i brush my hair with temporary hair color and a tooth brush.. it dyes it nicely. It's still quite thin.. just grey and weak. my hair is like yours Banjo... like before tho, i hope it grows out nicely.
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Apple, do you mean you buy the boxed Laureal type of hair color that you generally put on for 10 minutes and then wash out? That's what I had been doing after my hair grew back to a reasonable length and thickness the first time (I stopped paying my stylist to do it bc of the cost). Now I have gone through hair loss and new growth again--this time it's much finer and I have very light coverage on the sides, especially the side on which my head usually is on the pillow. But I have enough sticking out in the back above my color (I had my husband leave an inch or so there when he shave the rest off). So I'm thinking I should color it. It would need only a couple tablespoons of dye though!
If you use something else--like henna maybe?--I'd be interested in knowing what it was.
Thanks much.
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Thank you for your responses, Marie and hopbird. My mom has a bad tremor since all of this started and I have a feeling the anti seizure meds are making it much worse. I wish the damn neurologist knew what she was doing! Pretty sure no seizure meds necessary unless she has a seizure!
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i just used the boxed temporary color from Loreal.. i just squeeze a little on a tooth brush and try to evenly comb it thru.. it works great. thing is, i don't really have any hair on the top of my hear. I'll have to buy a beret.
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Thanks, Apple. ...Do you have to toss all the unused dye or can you keep it for weeks or months and keep squeezing out how much you need?
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DEAR FORMYMOMAL
the same happened with me, the thing is new drug means more side effects.may be a neuro-oncologist would help by reducing the dose carefully to the minimum. still what is most important is the tumor ,if it is shrinking or stable,that is what counts most,beside some anti-seizures may have anti-cancer effect such as valproic acid.
hope i helped a bit ,best wishes
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Hey everyone! Thought I should check in...
I still sit with good control from the chin down, but they need to work on the one pesky lesion on the brain. Have put me back on pretty high doses of steroids, because there was some brain swelling...OK, that's a good reason! But, a week later with the procedure finally scheduled, I asked if I could take my steroids down a little because I was gong crazy...luckily, he said yes. Things got slowed up because of my husbands schedule and more the fact that the doc attended a conference and got stuck with the storm...when it rains. I guess literally. Anyhow, I'm not having the best days waiting for SRS on high steroids, but hopefully this will end in another week or so...then I can start getting normal again, I hope! For awhile would be nice!
I know there's no "path" to this, so I just try to ask questions I need answered and stay informed...ugh!
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Oh Hoppy. You are such a patient patient. Does neurosurgeon have a minion, um, NP or PA you can ask to keep dosing minimal? I'm lucky to have access to NS's excellent assistant who answers confidently and competently.
I guess I'm reminding myself that it's nice to be nice, but I am the boss! Feel better.0 -
Hi ladies,
I guess I don't even know where to start. I was diagnosed 4/2010 stage IV from go but have been doing so well for so long that I had honestly started to think maybe, maybe I would be one of the lucky ones. Last weds I had my regular 3 month PET scan, still NED again! Have been NED for over 2 years and feeling great so this was great news. I had been having some funky right sided weakness. Grip issues and my leg felt heavy & weird. Mentioned it to onc as we were going over PET results & he said not worried, let's do a rule out MRI just for piece of mind. 4 hours later I'm called and told to go straight to the ER, a 3.9 cm lesion showed up on my brain MRI. Long story short, craniotomy happened last Monday (10/29) recovery went great, I came home weds and my right sided weakness is already gone. Now here's my question. You guys are the experts and no amount of google is getting me anywhere. We've decided to go with SRS for now and WBR later if & when needed. What can I expect? I'm still NED everywhere else and you would never know that I had brain surgery 5 days ago by looking at me. My pathology came back today grade 3 poorly differentiated and they weren't able to resect the entire tumor due to location. I guess I just want some reassurance that I still have a dog in this fight. You guys are the pros, you all inspire the crap out of me. Thanks in advance.
Hugs & prayers,
Nicole0 -
Nicole, Congrats for recovering so nicely. Sounds like you have good, good care there in NY.
No crystal ball here. Ive had 9+ lesions gamma'd, so, SRS, and have nothing but a little scar tissue there now. Well, my brain is there, too.
Best wishes. Its not our grandmother's breast cancer anymore, great things are being done.
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Kathy,
Just wanted to say thank you so much for your reply. 9 lesions? That's encouraging. Can I ask you how long your time between recurrences was? I'm told to expect mris every 8 weeks. Lets make some lemonade!!! Thanks again.
Hugs & prayers,
Nicole0 -
The first scan showed maybe 5-6. Special MRI by gamma team showed more because it is more sensitive.
They hit all but one, then linear accelorator for the 9th.
next month there were a few new ones, zapped em.
Next scan and next scan, looked great. Neurosurgeon said, chemo must be decreasing the source (my chest)
Scans (MRI's now every 6 months)
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Well, it's just about a year since I did my WBR (shortly after mx and alongside my first chemo). I had some hearing loss, which I have only had half investigated because I was too busy getting through the days. My short term memory has definitely been affected but as my friends are either menopausal or post menopausal, they are the same! It has developed slowly and I was always one of those people who go into a room and forget why they are there but I have noticed recently that it's happening a bit more often. People are scared of WBR sometimes but I felt that it gave me (along with Xeloda) my only chance to extend my life as I had twenty lesions. Up until a recent injury, I've felt fine and I think I would definitely be dead by now if I hadn't done WBR.
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Barb, you summed it up. Memories, where did they all go....
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Thanks for your kind words...K Lo! There was a GREAT NP at my radiation guys call, but she changed jobs a couple of months ago! Sounds like the new one may be good too...just don't know yet! They'll be working on stuff this week and get it done early next week. Sadly, it would probably get done sooner, but this week is the worst for my husband...and while I hate every day, I really know a few days one way or the other isn't going to matter...the area isn't that big!
N Miller, two years ago I had a craniotomy and for over a year things were great! I'm like you, just had the one lesion so my doc concentrated on it. Two years later and our only problem is still THAT area..so that's what we work on! For me it's all balance...and pretty specific. The surgeons had trouble getting one area so the radiation guy did SRS...it went away, and now the area right next to it is flaring up, so we're going to SRS that. The higher dose of radiation they gave to the area didn't do everything, but the SRS seems to do a good job "finishing" it! My guess is this one has been there, just took awhile for anyone to see it! I mentioned it, but if they couldn't see it they couldn't treat it, and they did remind me I've had quite a bit going on, so it's reasonable to think there may have been other reasons.
Anyhow...this is all so subjective, but SRS does do some stuff and because I have and still do just have the one area, it's better for me, I think, then WBR. I know if I'd had more or been more spread out they wouldn't have hesitated to do WBR....
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Hi ladies, new here to brain mets and going for WBR starting today (mapping I think).I think I will be finished the Tuesday before Thanksgiving. We have a trip to Las Vegas planned for the Friday right after Thanksgiving. Is this going to be doable for me? My MO said probably not. Rescheduling with the airline, the hotel, a hot air balloon ride, a show...sounds daunting. The MO says no medical restrictions but she doesn't think I'll feel up to the trip. Any thoughts about when your SEs subsided enough to take a trip? This trip is important to me, I plan to bury my mom's ashes during the trip. I don't need to burn the midnight oil to have a good time.
Thoughts?
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hiya..luv
im pretty new here as well...i have found so helpful to chat with those in the know...i had wbr in feb and i was told id be laid up for a while...i was fine..i rested when i felt tired and recharged..suppose it depends on yourself everyone is different...your trip sounds like a dream...rest rest rest and keep yourself well ..xx
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Thanks Tracy. I was hoping for such an answer. I am normally pretty high energy
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