Brain Mets Sisters
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Mara, glad you are home. Take care of yourself
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I don't have brain mets (yet), but I just received this Medscape article and thought participants on this thread might be interested:
http://www.medscape.com/viewarticle/867268
Tina
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Tina2,
Because the article sits behind a membership wall, for those who do not want to sign up, use this google search link and click on the third entry (or whatever shows up displaying www.medscape.com/viewarticle/867268).
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Agness thx for the link. I had heard a whole conference that this doc spoke she is very good.
3Mom321 sorry you have to join. Are they ready to give you Keytruda?
Mara hope for a quick recovery. Good for you for going about and doing what you like.
Maryk so young and you have to go through so much. Hope you get answers soon.
Bad at user my daughter's Onco did not even mention TDM1 now, she had taken it already. She is ER+PR+HER2+ also. They did mention the other mixes. I see from this thread a lot of ppl are on Xeloda. For her she can't have Xel/Tyk bcs she was on Tykerb by itself and I don't think they would cover it now. That's how it works. Those are clinical trials I think. So she is on Herceptin/Navelbine. But I do think Xeloda is stronger. I don't know. For some reason only one is on Navelbine also around here.
Tina thanks for posting a link, people that are not in the medical field could register? It asks what's your practice?
Giovanni sorry but I did not understand, can you explain how one could access it. It's so special your dedication and love to your wife. I am sure she well deserves it.
Found out today from another RO that there is much thickening to the Dura (hmm yeah so?) and they are so scared, but they are still saying we could and should hope for the tx to take effect. Waitng till I must tell you, I am so scared for Dani.
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momAllTheTime,
Sorry, I thought my link would work, but apparently it isn't. Open a google search window, and search for "medscape article 867268". One of the search results (the first one in my case) should take you to the article avoiding the sign up process. I hope this helps.
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Mr C I got it. Thanks so much.Very interesting. There is hope, I just hope it comes real soon.
Tina love your avatar, oh it brings me back memories!! Thx for the info.
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mom, TDM1 is an option because I'm an unusual case. It's not often an option for brain-only disease because it is unknown whether it can cross the BBB. In my case, we know that my body stayed clear on TDM1 when I took it on trial. Now as I never had a brain scan before my mets dx, we will never know when the suckers started growing. But that I only had my first symptom of the mets a full four months after completion of the trial indicates that TDM1 might have been holding this crap at bay - and it wrecked havoc because I had stopped the drug
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Thanks momallthetime for the welcome. I started WBRT yesterday Day1 with only some headache and lightheadedness. Also started on Memantine (Nameda) to counter cognitive loss by this drug usually given for Alzheimers. Anyone have experience with this drug? I am not candidate for Keytruda, still in clinical trials,was told not proven for breast cancer yet although helped with Melanoma brain mets (President Carter). When first dx with stage 4 to liver in 2012, Xeloda helped put me in NED but I stopped due to Hand and Foot Syndrome SE. All the best to dear caring members of this forum.
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Hi 3Mom, glad you made it here. (Edited to add- as I saw your other thread, not because I'm glad because you have join us brain mets folk!)
Interesting you were offered a drug to counteract any cognitive loss- I wasn't. Hope I don't lose too much!
Maybe you can go back on xeloda, as it crosses the BBB? It failed me last year, so not an option for me. I hope to find out which chemo I can go onto next week. I hope the rest of your radiation goes well.
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Hi 3Mom,
I have been on Namenda for more than 2 years now, ever since I started WBR. The study was only done for a 6 month dosage but I thought, why not continue it? I don't experience any side effects from taking it and maybe it will help me to avoid getting Alzheimers. I think it is quite expensive but so far my insurance has covered it since my RO keeps prescribing it.
I also recommend drinking the tea my Chinese medicine doctor prescribed to me. You can find the recipe on my earlier threads or PM me and I will send it to you.
I hope you will do well on WBR and that it will get rid of all of your brain tumors! It's been more than 2 years since I finished WBR and my brain is still clear (knock on wood!).
Hugs, Susan
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Hello everyone, especially kt1966 and SusaninSF,
Thank you for the well wishes with the WBRT ( 2nd session today). Just mild HA and lightheadedness. I was told to use moisturizers on scalp but don't know about type and logistics. Any advice regarding how to make it through next 2 weeks would be helpful and appreciated. Radiation oncologist prescribed Namenda (normally for mod to severe Alzheimers) as a preventive for possible cognitive deficits down the road based on a single trial (google memantine and brain metastasis)generic name for Namenda. Reassuring to know SusaninSF had good tolerance since reviews by Alzheimer caretakers have been more negative than positive. kt1966,I will not likely to go back on Xeloda due to peeling of skin in hands and feet SE (Hand and Foot syndrome) even though it seemed to work well. for the liver mets.
Best wishes, 3Mom321
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Susan, it's hard to find hope in all this sometimes. And having just been dxd with brain mets (only) it's been rough. The Internet will readily tell you it's a death sentence. The fact that you have been free of brain mets for two years post WBR gives me the hope I desperately need in all this. I'm on a clinical trial but WBR will be next up. How many met spots did you have before WBR?
Elizabeth
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Hi Elizabeth,
The internet will tell you that pretty much any symptoms are a death sentence. We always say, "Don't listen to Dr. Google!"
I had 12+ brain mets, an eye met, a bone met, and a bunch of lung mets including one that was 4+cm. All a surprise since it had been 8 years since I had Stage 0 DCIS. My RO told me that she could keep me alive for years. Just clean everything out with WBR and Cyberknife any spots that come up after that. Before she told me that, I figured I had about a year to live. More importantly, I've been able to enjoy a pretty much normal quality of life. I really can't think of anything that I could do before but can't do now except for have a stressful job! :-)
Hugs, Susan
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We saw the Neuro Onc today, not the normal one though. He is unsure about the 4mm area. He said the radiologist got confused when looking at scans, as the surnames were different on the scans where we had got married. How this can happen I don't know, but after the last year I'm not surprised.
MRI scan again on Tuesday, then go from there. If it's bigger then we know it's not good. Will keep you all updated.
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rather than going through 158 pages looking for someone in my situation, i'll just ask the question that i was hunting for. i am triple negative with brain mets that seem to be galloping along. New ones seem to show up on every scan. are there any chemos from which any negative girls have benefitted that can cross the blood/brain barrier?I'm currently on xeloda, but can barely keep food down much less the big xeloda tablets. I gag just looking at them, and they immediately come up as soon as I try to swallow them. I've tried taking them with pudding, applesauce, ice cream, and haven't been able to keep them down. Suggestions? Or am I out of options? I've already had WBR and several gamma knives and brain surgery.
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surf dreams/ I know there is an Iv form of Xeloda (5fU I belueve). Perhaps you could ask to change to that. Same stuff just metabolized differently. Xeloda gets turned into 5FU.
I noticed that there is a thread about triple negative People and the use of Xeloda. Perhaps you could look there for some insight or help?
How long have you been o the Xeloda? I will tell you that it upset my Gi system very badly the first few cakes. After about 4 cycles it started getting better. So maybe there is help for you.
Are you on te 25 on 7 off cycle? Maybe ask to try a 7 on 7 off. Some people do better in that.
Sorry you don't feel well. Hug
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Can you help me? I was sent here by a friend. I am 3 years out with triple negative breast cancer and 2 years out with mets to my brain. I had the Gamma Knife for a total of 6 times for 11 different mets. All seem to be resolving and I understand that once they die they won't come back, right? I do not have disease anywhere but in the brain. It is now only in one spot left and that is dying and my neurologist said it won't come back. But in its place I have radiation necrosis. I have MRI's every 6 weeks and on my most recent one, it shows increased swelling and increase in the necrosis. My doctors told me that the necrosis is nothing to worry about , that it is the tumor dying, that I will always have seizures from it. Because of the seizures like I said I can't drive. The question that I keep getting different answers to is can I fly. I live in Arizona and all my family lives in New York. I have multiple seizures and can no longer drive. My anti-seizure medications were just changed once again. I do have a lot of swelling in my brain. Now I am started on steroids which I hate. I have been told that yes I can fly and others say that it would be too dangerous because of the swelling in the brain. do any of you have experience with this? My children are livid that I would attempt to want to fly. But I want to visit family and friends and not everyone can afford to come to me.
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Left foot forward - thanks for your response, and I'm sorry to look stupid but can you tell me more about SFU? I did a gppgle search and didn't find anything. I'm not naseaus, I just can't keep much of anything down. but I have no appetite either. so that doesn't bother me except I'm losing a lot of weight.I see a gastro doctor in a couple of weeks to see if there's a problem with my esophagus that's causing this problem. I'm on a 7 on and 7 off cycle, I know they're not to be broken or crushed. but that's what I'm doing as otherwise. they go down and within seconds they're back out.
Why did that happen 2- I just flew back and forth to florida last week. and had no problems. but my seizures are well controlled. I hope your new med control that, but then. you should get an OK from your Oncogist.and Neurologist. Good Luck.
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surfdreams- it is 5FU not SFU so that could be the trouble. I hope that helps
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SurfDreams,
5-FU is an abbreviation of 5-Fluoracil. Please click on this article, or this other article.
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thanks all for your input!
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surfdream and whydidithapen can't really give you advice, but warm hugs and best wishes.
I spoke with NP of Radio Onco on Friday, becs Dani tells me she does not feel the major lesion getting smaller, if anything it's bigger.
So when NP called, she was telling me about the extensive disease(I don't like that word), that they discuss Dani on the tumor boards, and that being there is so much going on (extensive liver and bone mets), they would only radiate the lesion for "palliative reasons" Hate that word, becs she tells me it's gonna be coming back. The Dura is getting thicker, but they cannot avoid IT really getting into the Brain. And being that it's extensive bone mets in the skull also, they kinda think it's unavoidable. Aghh. Really? Now, do we radiate, knowing that according to them, hair will not grow back. I think it may be worth it so Dani feels better? At the same time, she so did not want to loose her hair. SO confusing. She is scared that that particular lesion could be causing some numbness on the side, that Rad Onco said it's possible coming from that lesion.
She is on Navelbine and Herceptin, really trying to get her to get something stronger, but they are thinking of keeping her QOL good?? What's with everyone, why are they so pessimistic?? This is a major place, Onco specialized in Mets, I can't believe that they think she is so out of reach. That's what I can't wrap my head around.
Mri is scheduled for in 2 wks, we have to at least try to give this tx a 2nd cycle. Who knows?
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whydidthishappen2 - ask about treatment with Bevituzumab for your radiation necrosis, it has proved helpful in clinical trials for brain necrosis.
"Bevacizumab is effective and safe for the treatment of RN after SRS for brain metastasis. In this context, bevacizumab offers symptomatic relief, a reduction in steroid requirement, and a dramatic radiographic response."
http://m.neuro-oncology.oxfordjournals.org/content/early/2013/06/26/neuonc.not085.abstract
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So it turns out I have bony skull mets and brain mets (on pineal gland and other) as well as the LM & spinal cord tumour. The Lumbar puncture couldn't give any useful info re receptor status and my onc thinks it's too hard & not worth biopsying my liver to check
So I'm starting vinorelbine (navelbine) next week- every week. There are trials for a new drug- but can only get on to it if the tumours in the brain grow, & mine shrunk thanks to WBR.
I certainly hope vinorelbine is effective. I don't know what other options I have....
I hope it works for Dani too Momatt
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Good luck to you kt1966 with the navelbine. You too Dani. I hope it can help slow any more progression and keep stability for people.
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agness..my radiation onc tried to get Bevituzumab for me but insurance denied.
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hi everyone, I'm hoping that you all can talk me down...my onc appt was wed he ordered the usual pet/ct and echo...he usually says my labs are good, but this time didn't say anything. When I called for my echo today I asked his nurse and she said my labs were good but that my tumor markers were up. Then she said that that's not unusual because mine were up in June. I think my last scan was in July around the 4th and I was ned. But I just can't shake this terrible thought now. If they are up is it possible to get them back down? Everyone that I've told us treating me like I'm so fragile now. Of course they dont have cancer. Uuuuggghh
Any words of wisdom
By the way I just realized my info below is not showing my newest stage.
I became stage 4 mets to the brain in February 2016
Now er/or negative her2
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Hi Jen. Welcome to the club that nobody wants to join but had the best members!
Have you received the read on the scans yet? While labs and TMs are good indicators for some people, mine have never been indicative of what is really going on internally.
Also, did your CT scan include your brain as well? Usually pet/CTs only show things from the neck down and a seperate MRI or CT is done for those of us with brain mets.
Waiting for the results is always the hardest part but we are all right here waiting for the best possible news with and for you
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Hi everyone. Im new to this thread but i have posted on bone and liver threads occasionally. I have extensive bone mets and mets in liver, eyes skin and now they have found five lesions in the brain. My lungs are still showing ned. Ive been stage 4 now for almost five years and have enjoyed a good qol. I have had very little pain, my mobility has been good and my immune system has been fantastic. No trouble with bloodwork at all. My onc has suspended chemo while I get WBR andthen we are going to try another older chemo MMM. Ive been on Taxol for the last 11months and tolerated it really well. Like all the rest it stopped working for me.
This site has been my lifeline. I visit every day and I have gained so much knowledge and the inspiration from all you ladies is phenominal. I am a very positive person but this brain episode has knocked sideways. It was my worst nightmare. I am feeling really vunerable for the first time since my initial dx in 2006.
Any feedback on side effects from the radiation and how to manage them would be appreciated.
Wishing you all pain free days and good results. X
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Hi mutherflush, I remember you from the taxol thread
I'm sorry you find yourself here too - it is definitely a bit scarier having mets in or around your brain, I can totally relate (I have LM and some lesions in the brain itself too). I finished WBR about 3 weeks ago, then had 5 radiation treatments to my spine (tumour on cord at T10/11).
Fatigue is the main thing I find, as well as sleeplessness from the steroids and my digestive system is a bit mucked up. At least my headaches from the LM are gone. I have a few niggles from pressure on nerves I guess, but am otherwise good. (Oops, my memory is a wee bit affected too, which can be annoying
I hope you find it doable too.
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