Brain Mets Sisters
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nobody knows how long we have have out lived the stats by two years .. It is truly one day or one scan at a time I try not to dwell live Easy to type hard to do find things that bring joy
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how was the dr visit skylotus? Good news I hope.
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Doc just called, tumor markers are up AGAIN, this time to 733. Said they are going to order scans now, and not wait another month. I know a lot of women say not to worry about the tumor markers, but mine have only gone up since I found out I was dx stage 4 a year ago. So.....wait and see it is.....I guess....
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has anyone done chemo for your brain mets? Dr said ixempra/xeloda "may" cross bbb. But she was not very strong hearted sounding about any of the combo options. It was disheartening. Whatever I go with will be primarily to address the chest lymphs and lungs but I am very interested if anyone has had a chemo that crossed bbb. Thank you
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Delirium - I am on xeloda. after three rounds my brain mri looked much better. My oncologist was hesitant to say that the xeloda had crossed the BBB but my radiation oncologist said that it looked like the xeloda was working. I am hopeful, very hopeful.
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I am also being treated for brain metastases with Xeloda, combined with Avastin (after surgery and WBRT). Just had third treatment today (the Avastin, the Xeloda is given in tablet form). I have an MRI in 2 weeks time so will have a better idea then whether any of it has worked/is working.
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Tomorrow morning, I have to be at the hospital, Pacific standard time, for Gamma Knife surgery. They will do another MRI to make sure there are no more than 4 mets to the brain. We know of one in the balance area...so for sure that one needs to go. They said they would abort the procedure if more than 4 are found. Pray no more...I want it to be done and over.0 -
thank you much for the feedback Claire and bosco. So glad it's helping you Claire and hopefully boscos mri says so too. Are the SEs very bad? I'm so overwhelmed with dr giving me all these choices instead of just telling me the best thing to do. I thought it would be different somehow. Not sure how.
Wishing you luck tomorrow hindsfeet. I hope it goes the way you want.
Thank you guys for talking to me.
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side effects of drugs so far for me have been minimal - mostly fatigue but that is from the RT I think. A bit of tingling in hands and feet for which they've given me B6 vitamin to take.
Good luck tomorrow Hindsfeet
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I am on a combination of Xeloda and Tykerb for my brain and live mets. No new brain mets since treatment with gamma knife in Dec 2012 and my liver mets are almost completely not visisble on CT scan. Only one tiny one left. So this combination is working for me.
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that is great leftfoot. So happy for you and gives me hope. Did you have many brain lesions?
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DeliriumPie- I only had 2 lesions when my brain and liver disease were discovered. Gamma knife to the brain mets has worked great. My liver was rattled with lesions in all areas. So many that the liver specialists said it wasn't worth pursuing any treatments they could provide. As I said I only have one small lesion left. So the combination of gamma knife, Xeloda and Tykerb are working. Tykerb is for my Her2+ cancer. But I was told that Xeloda does cross the blood brain barrier. Who knows. I was also told that hypothetically if I have to switch to something else that doesn't cross the barrier that my treatment has taken care of the remaining cells in my brain. I don't realy buy that but it is nice to think about.
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Does anyone else out there have cystic brain tumors? My brain and eye tumors are all cystic (filled with fluid), not solid.
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thanks leftfoot. That is so great about it all and the liver wow. The RO says the wbr should improve my lesions (whatever that means) and that the ones we don't see should go away (um that's good I guess) and maybe get rid of the smaller ones and maybe shrink the largest ones enough to go back with gamma knife in a few months. Lots of speculation there but I'm really going to hold out hope to get to that gamma knife. Hoping the ixempra/xeloda packs a punch because it is going to exclude me from a brain mets chemo trial I found but it would take more than another month to qualify and I don't have time for that. The mo said I could do a differnt combo instead but I don't know what to choose. I already felt so odd with her giving ME a list of choices. Sorry if I've repeated myself. Kind of foggy this morning. Hope everyone is doing well today.
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Susan - my main tumour was solid, I don't know about the smaller lesions. The main tumour has been implanted in mice and they are now going to test different combinations of drugs against it.
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bosco they have your actual tumor in mice?
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so they tell me.
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that's amazing I hope they find the right concoction to knock that sucker out. Is this a special test or trial somewhere? I never knew you could have your own tissue tested that way.
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not a trial just expensive. My onc uses Champions Oncology - there's an explanation on their website. I have no idea what their success rate is like - whether the mice tests translate to real success.
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thanks for the info. I will have to check that out. Very interesting and would seem to be able to provide more accuracy in your findings.
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that's the hope. I forgot to say they did gene sequencing first
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I know someone who did that at a place in Los Angeles. She was able to get it done for free because of some chemo trial she was on.
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Yesterday morning, Gamma Knife procedure. They said if more than 4 tumors found they would abort the surgery. They found 4 on the new MRI so it was a go. Two were in my frontal lobe. My eyes and forehead is a little swollen. Is this normal? Steroids is making me very emotional...cry easy and usually I'm not a crier. I'm allergic to one of the pain meds and to the counterpart stomach that goes with the steroid.
I read that those who HER2+ brain tumors don't live more than months to a year. That is so scary. I had little symptoms such a slight balance. My vision is fine, and no head aches. I will have scans every 3 to 4 months MRI brain. I have read a lot and find for those who are HER2+ not much more time with wbr than Gamma Knife. The whole brain thing scares me. I've read the other can be somewhat controlled for a while with Herceptin and other targeted therapy. Once it gets to the brain there doesn't seem to be a lot of hope due to the bbb. Seems like from what I'm reading that once it hits the brain time is about up.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3528960/
I'm trying a little alternative with hope this might help.
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Hindsfeet,
It's like we always say on these discussion boards, none of us have expiration dates. If you are otherwise healthy and have top notch doctors your prognosis should be much better than the averages you see in those papers. Keep in mind that many of the people in the averages were elderly and/or had other medical complications. Many also didn't have great medical care. They also generally go back 10 or 20 years when there weren't as many treatment options. There are many women who have lived years with brain mets. I'm not sure whether they were HER2+ or -. It sounds like your tumors are few and small and you haven't had any major symptoms. Obviously, all good for the prognosis.
You might want to ask your doctor if you even need to take steroids since you didn't have any brain met symptoms before radiation. I didn't have to take steroids since I didn't have any symptoms prior or during radiation. I took a small amount for a couple of days after radiation to try to help inflammation in my eye but it didn't help so I got off right away.
Hugs, Susan
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Hindsfeet-
I am Her2+ and had 2 brain mets found in December of 2012. I had the gamma knife procedure and successfully. I have been checked with brain MRI's every 3 months ever since. So far, I have no new brain lesions and you can barely tell I had the two. I am doing well. I have stopped reading statistics as it doesn't matter to me. I live everyday to my fullest enjoying my family of 6. Everyone is different and I hope that I continue to beat the odds. It scares me everyday because I know what the literature says. But so far, I am doing better than I am supposed to. And that is fine with me (understatement). I hope that I can bring you some hope that things can go better than expected. I wish you well.
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Thanks for words of encouragement...especially that no more HER2+ brain tumors where found in your brain. The tumors elsewhere I know are controlled by the Herceptin/Perjeta and other targeted therapy.
My brain is swollen...I feel it. My head is swollen...I can barely see my eyes. I do feel brain pressure...4 big lumps on skull. I will see a nurse or doctor on Monday so hopefully I'll know more what is going on. They said absolutely stay on steroids...3 per day for a while, then two and then one. I'm following orders cause someone said brain swelling can cause brain damage. Don't need any more complications.
I am also recovering from 15 rounds of radiation to spine, esophagus, sternum, hip and femur. My whole chest spasm when swallow. Swolling water or even spit hurts. I'm in a lot of pain from the radiation...head is ok...just a lot of pressure, and a little dizzy.
Looking toward recovery and life back to somewhat normalcy.
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hang in there hindsfeet. Stay on top of the steroids. I could feel when it was getting close to time to take them from the pressure. Don't let them dose you down too soon if it doesn't feel right. I think my swelling is mostly resolved now but I keep asking them if they can tell when they xray me each week at wbr but they say they only look at the bony structures. Seems they would be able to see it. Sorry about your chest. I have a constant lump in my throat and chest from the wbr.
I hope you get some relief soon. And that they have good answers for you on Monday.
I'm also liking the encouraging words of these outdated statistics for us.
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Del- I didn't have wbr. I had 4 tumors zapped with the Gamma Knife. I'm wondering why my face is drooping. My eyes are bagging where I can hardly see. I don't have this problem so it is difficult right now seeing. From the directions it should resolve by the end of the week...hopefully.
They also said that it will take a week or so before pain is gone. Hoping it is a temporay thing...not sure I could live with eating problems. I'm so hungry and losing too much weight. Hating cancer treatment.
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sorry hindsfeet, my brain is pretty foggy I missed that. I googled the SEs of decadron tonight and was surprised to see a ton of things I have been experiencing that I was attributing to the wbr and cancer growth. Made me feel slightly better. Those ones you mentioned were all on the list. These steroids are rough stuff.
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I didn't have wbr. With all the side effects I've had lately with radiation to sterum, spine, neck, esophagus and then Gamma Knife to 4 tumors, I'm done. I'm haven't hardly eaten in 2 weeks. At this point, I don't think I could emotionally or physically do more. I am doing the Herceptin/Perjeta and hormone blockers. The cancer treatment is killing me!
Why do the doctors throw the number 7.1 months out there if it's old? Well, perhaps someone of you are the good percentage of the 30% that make it. I have no idea. Right today, I'm pretty down. My face is drooping...my eyes, I can't eat, and I hurt like crazy. I just want to eat. I'm hungry and can't swallow. Life is pretty miserable right now...and I have a lot to do, and work.
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