Brain Mets Sisters
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Thanks, Hightude1, for your support. Yes, you read my mind, I am very worried about WBR, it does worry me whether I will come out of it myself or not. I guess then i should push for gamma only. Will let you know what the onc thinks. Thank you... God bless us all.
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Sorry, Jodi about being out of options. I appreciate your sense of humor and understand what you mean about being tired of it all. Starting to feel that way myself and getting settled with it all until it comes to thinking about my children and then it's not so settling. I'm sure you can all relate. Hope you have many good days ahead. All of you.
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Oh you guys hit the sore spot. I had gamma twice last year. I was so proud that my docs said, "We wont do WBR on a young(ish) person who is otherwise doing well. Its too destructive"
Hightide you say 4mm? Heba: 1.7x1.6? mm or cm? Any chance of surgical resection?
Anyway, I went in for a checkup MRI and the song has a different melody this time. 6-8 "tiny lesions" spread out, especially in cerebellum.
According to the Nuerosurgeon's NP, "They discussed my case" and decided WBR is recommended this time. Today I will talk to my trusted Rad Onc (she was out last week), to hear what she says.
Unless she has a strong positive reason for going with WBR, I'm going for "wait and watch." I'm already a mess. I just spilled my third beverage in one hour.
Plus I get the feeling that Apple and Reesie regretted WBR. I know that's a stretch from so far away. But Id rather spend last days aware of whats going on and functional.
Did y'all get that feeling that some WBR's had a terrible time with SE's?
Thanks, Kathy
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Jodi,
Sorry you have run out of options for chemo. I love your attitude and your posts always make me smile. I hope you have fun and happy times ahead with your family.
Heba,
Good luck on the decision. I Have had gamma before and will probably get WBR soon. In general, my oncs have said to keep WBR for a later date. In my case the later date is here.0 -
FMG and everyone,
Did they say how quickly these brain bugs grow? Mine are all "tiny" and would give no symptoms yet. Im thinking get MRI every other month, see what they do...... Ill ask my RO that question today and let you hear what she says.
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Kathy
I am so sorry to hear your latest news. I do not know what I will do if I am faced with the real scenario. In the imagined one, I say no to WBR and everything is good.
I had a very long discussion with my RO last visit. We talked QOL at Stage IV. She dislikes WBR and that speaks volumes to me.
I think what was so disheartening with my friends who had WBR was how quickly they experienced recurring mets. It seemed to make the experience an exercise in futility and QOL was definitely impacted; not just for them but for their families.
I just can't find anyone who has had it that recommends it. Maybe the successful stories will post...although that may make the decision harder.
Big hug and lots of prayers. Don't give up on the beverage. Set it on the table and go after it with a straw.
Barb0 -
xoxoxo
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Kathy,
My neuro onc does my brain MRI every 8 to 10 weeks. This time around I have to repeat my MRI in just 4 weeks as my scan last week showed progression and they might need to hit the WBR button but want one more scan just to be sure. I do not understand the logic of waiting as I have started having bad headaches. Is it sinus, brain mets or my chemo? Who knows?? Of all my mets, I struggle with my brain the most. I am scared of degenerating in front of my kids. I might get kicked off my chemo trial for TDM1 if I get WBR tx so am confused.....0 -
Thanks ladies again, I will negotiate gamma knife and push for it, if WBR will deprive me of QOL..
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Formygirls,
Did you have progression on tdm1? To liver? Bones?0 -
Jill,
I do not know yet. I had scans last week. My lungs were stable and most of my liver tumors became smaller but one liver tumor grew. The trial needs exact measurements of every tumor so they are still figuring out exact measurements to decide if that one liver tumor grew enough to count as progression or if I am stable. If it is progression, I will be kicked off the trial. BUt brain did show progression and I am not sure yet on the impact on the TDM1 trial since TDM1 does not cross the blood brain barrier anyway. Still waiting.0 -
Oh...and I caught your post about re-doing the MRI to be sure it's necessary to move to wbr. Sounds like all pretty sucky news actually. Sorry....will look for an update.
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I had WBR last February. I did 10 rounds and had 7 tiny small mets. What I experienced from WBR was extreme fatigue. It lasted a good 2 months. I had SRS to treat the tumors after and now they are stable. I went into WBR pretty strong. I was just on my first line of treatment after being dxed stage 4. At the time I was taking Tykerb and Xeloda. Didn't work for me and that damn cancer went straight to the brain. I dont notice any lingering side effects a year later. My next brain scan is in April. Currently being treated with Herceptin, Taxotere, and Perjeta.
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went four my 1 month post srs today find out tomorrow. i've had 7 tumors all small biggest one 11mm all responding so i just call it wack-a-mole borrowed from a friend i also am very scared of wbr.i.m on x and tykerb too and am losing my hair nowdon't know why also having tmj pain guess i'll find out tomorrow talking bout scanixity
love and blessings to all
chris
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All of your stories help fill out this mystery. Tiger, I'm impressed that you have no lasting effects from WBR. Do I understand correctly that FMG and Braids have not consented nor want to consent to WBR?
Today my RO said she agreed with the team, that the only treatment available now is WBR. Basically, no matter what scenario you go in with, they try GK/SRS 2 times. Returning or growing lesions will not be Tx w SRS. AND she also says she will do WBR only once.
She said "youngish healthy" people respond well. Anyone who has a deteriorated brain-circulatory situation, is more prone to dementia. SHE says if you get dementia, you will have dementia.
It reminded me of the chemo pushing me into menopause at 42. If I were much younger, it wouldn't have been permanent?
But she was very agreeable to wait and watch. So MRI in 8 weeks.
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K-Lo, your post has given me some questions to ask the RO and neurosurgeon I will see on Friday after my MRI, which is three months after gamma knife. I'll report back.
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Good luck, Surly.
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Glad they're agreeable to the "wait and watch", K-lo.
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good news onc says breast is stable and nuro and rad onc say latest mri showed all of the ones done in the past are getting smaller or are gone the most recent looks to be responding. so i don't have tomake any decisions on wbr yeah! wish all of you lots of love and blessings
chris
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Tiger Blood, this is off topic but how are you tolerating perjeta?
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great going,braids.
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I had my MRI this morning and appts a couple hours later with the RO and neurosurgeon who did the gamma knife in Oct. One of the spots is gone completely and the other two are much smaller. The neurosurgeon said that this is about as good as it gets. He thinks the two small spots are dead and not anything to be concerned about. They'll do another MRI in 3 months.
I asked the radio-oncologist if there was a limit to how many times they'd do gamma knife. She said there wasn't a limit, as long as there were only a few spots. But she did say that if they were increasing in number they'd probably recommend WBR. I didn't ask how many times they'd do WBR. It was all too hypothetical. I suspect it's the insurance company that sets the limit.
I had a bunch of other questions, but those were in case the news was bad, so I didn't ask them other than to tell me more about symptoms to watch for. The RO said a persistent or returning headache, especially if associated with nausea, and loss of balance (because of where one of my spots is/was).
Since I got good news, I almost bought myself a prize from the hospital gift store--a fake fur little shrug-like number you might see some "girl" on Mad Men wear out to dinner. If my PET results next month are also good and the jacket is still there (perhaps I'll hide it behind the stuffed animals in the meantime), then maybe I'll give it a forever home.
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love it Surly. Great news and you definately deserve to reward yourself
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Congratulations, Surly. It is inspiring to hear positive news.
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Sounds like great news, Surly. According to my neurosurgeon after gamma knife some people's tumors will shrink to about half the size and some will stay the same. She didn't even suggest any could disappear. But according to her, either scenario is considered a success.
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They had prepared me for the spots being bigger due to them swelling before surrendering. So I had already decided not to panic if they had all been larger. I was more concerned about additional spots. I do think they said that the spots could disappear. But mine were pretty small--2 to 4mm each. Well, those seem small to me. So maybe if the spots are larger they don't disappear because they'd leave scars? I don't quite understand how they disappear. I was skeptical in the beginning that the spots were mets. But the onc said that the location of them--near blood supply, I think--made them certain that they were mets.
Thanks for your kind words. I know it's sometimes hard to read others good news when you're waiting for your own news or are facing some bad news. Whatever the case, if anyone is hearing that you might not be able to receive gamma or SRS more than twice, you should challenge that. It's not cheap, of course, but if they didn't want to use it they shouldn't have bought the machine or developed the technology!
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Mine were all small too..three of them...and I also doubted the fact that they were mets and fought having gamma knife at the time. My first gk was last January. Had more spots..four..and just had gamma again December. Big fight with the insurance company to get it paid for. But from what I understand Medicare, that I have since January, doesn't even require a pre- auth for gamma knife so insurance shouldn't be an issue...glad for the heads up about multiple gamma knife procedures not being considered often times due to cost.
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Contributing to this conversation a little late as we were in Florida for vacation. I had WBR in November, finishing just before Thanksgiving. My balance and fine motor skills were affected by the mets. By the time I finished, I was back to normal - no cognizance issues, balance restored, fine motor skills restored and no significant SEs except the hair loss. I'm having a follow-up MRI tomorrow and hopefully it will bring good news as I am having no symptoms. I was told I had too many mets for gamma treatments. By the way, I went to Las Vegas the Friday after Thanksgiving (4 days after finishing WBR) and I was a little tired but nothing that a brief afternoon nap didn't fix.
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Good to hear all that regarding wbr, Luv. Even more glad to hear you're traveling and enjoying life!
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Congrats, LuvRVing! Very good to hear that WBR didn't slow you down. Good luck witht MRI. Let us know what you learn.
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