Brain Mets Sisters
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I'll bet she is. Nice to know its not a definite permanent hair loss for everybody.
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That is very encouraging!
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Im trhilled to hear it. Docs tell us worst case.... my MO said hair would fall out w Halaven. I look just as good as Tony Bennet!
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hi ladies ...i love reading your posts lets me know thing the docs dont know or experience..xx
luvring... i had wbr in april i also was told my hair wouldnt come back...like you i resemble an old man but i have now got stubble on that bald bit so hoping it will grow...i was also told if your on herceptin it slows the growth down..
does any one suffer bad breath due to meds?
im still only able to eat sweet food...poor kids..hee hee
hope your all feeling well..
all the breast
tracy.xx
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Tracy - I don't seem to have bad breath, but I have a serious case of dry mouth. It's hard to eat anything that's a bit dry because I can barely swallow it. I didn't notice a problem before WBR so I am guessing that's the cause. I hope it goes away soon, it's very annoying. I have stubble already pretty much all over my head and I finished right before Thanksgiving. My hair grew back really fast last fall after I finished chemo, so I'm hopeful that this stubble is a good sign. Of course, I'll soon be doing carbo/gemzar and that won't help the hair situation. But it's encouraging to know that it can grow back.
Kathy - that's great news that your hair came completely back!
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i have the dry mouth as well...no matter how much i drink..
im on tyverb(lapatinib) and xeloda(capecitabine) and a catrillion other pills to stop bowel movements and make them happen and wot ever else maybe happening..lol..i have a pill for it...i sound like a maraca when i walk.lol
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Better living through pharmaceuticals...lol!
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K-lo u much prettier than tony bennet0 -
ha ha you 2, barb.
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Hi ladies,
I am new to the pack. Diagnosed with brain mets yesterday while recovering from my liver biopsy. I was initally diagnosed in Dec 2010 with ER/PR-, Her2+ stage 3 bC. I did AC/TH, BMX, and 36 radiation treatments. I had to stop Herceptin early as my EF went down to 40%. Just now digesting that I have brain mets and liver mets. I am 40 years old with 4 small children (10, 7, 4, 2). You might have seem me post in other areas.
I have looked over the last few pages of this forum trying to gleam some information. People on Her2 drugs which ones are you on? It looks like I will do gamma knife next week for 2 spots in the front of my brain. Terms escape me as I am a little tired after the past 24 hours. What was the experience like? One long day from what i have heard.
thank you for sharing
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Leftfootforward - so sorry you have to join us here but you'll get lots of advice and we're all holding your hand as you go through treatment. I didn't have gamma knife so I can't offer any advice. All I can say is that after WBR I am fully functional and all my symptoms have disappeared.
I am triple negative so I can't help with Her2 drugs, but if you look around I see discussions on several different and new drugs for Her2+.
You are one busy lady with 4 young children, don't forget to take care of yourself along the way.
Hugs,
Michelle
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Dear Left,
What a bag full of tricks this has dumped on you..
I have had the Gamma twice and am very happy for it. The frame placement is th only discomfort and of course they try to knock you out for that. After they place numbing shots, my entire is skull is nymb for 24 hours, no pain. The rest of the day is long as they plan very carefully with the MRI images. Then placement inthe machine is just a nap for me as they do all the work. Yes it is a long day but worth it to me.
Best of luck as you participate in your care..... stay in touch. (((LFF)))
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Hi Left
My daughter is HER2+ and she started three years ago with liver and bone mets and went on a TDM-1 clinical trial whichwhich worked like magic for a year and a half. After the progression she was off the trial and on Herceptin and Tykerb. Then brain mets-very scarey and she had gamma knife with great results until there was progression and she had WBR. The brain tumors resolved but leptomeningeal mets came up and she had an Ommaya port placed and received intrathecal Herceptin w/o preservatives. Then bone mets reoccurred so Xeloda was started. Another brain mets came and Gamma knife was used again. Her last MRI this week said stable and she says she feels better than she has in years. Finally dancing with the stable boy! We know how overwhelming each new development is and pray for the right combination of drugs and doses for you. And welcome to the brain mets sisters who have truly been through it all and are glad to share with you.
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sorry i haven't been posting had tons of visitors and i'm lazy and don't go online much. i'll try to be better!!! I had three doses of avastin and then a brain mri and it's a damned mriacle....one of my tumors is gone and the other one shrank by 1/3!!!!! now i am doing OT and PT to try and regain use of my left arm and leg hugs & kisses to all of you!!!! lisa
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Hey there stranger! Glad to hear the avast in is working for you.
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Welcome back, Chainsawz! Glad you are on the mend!
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What does wbr stand for? I am starting to feel dizzy and lose balance so am looking symptoms and treatments up a and keep coming across this term.
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WBR = whole brain radiation. You should call your oncologist and get those symptoms checked out ASAP. I hope it's nothing serious.
Hugs,
Michelle
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Thanks Michelle. I can't deny symptoms and am going to onc Monday. I hope it's nothing.......
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Hi ladies. I was just dx with brain mets yesterday. I'm terrified. I have been stage IV for over 2 years with mets to lungs. I finally got a very good scan result with 30-50% reduction in the lungs. But, some abnormalities showed up on the brain. Did MRI thurs, and mets confirmed yesterday. I just had a clear brain MRI 6 weeks ago!! Those suckers grew fast! I have 3. They are 6mm and smaller. I'm thinking gamma knife, but wanted to ask for advice/encouragement. Thanks!
Deena0 -
Deenah - so sorry you find yourself here, brain mets are the pits. You'll feel better after they are treated. I can't speak to gamma knife as I had WBR - too many mets to treat with gamma knife. With only 3, it should be a viable option for you. I'm sure others will be along soon who have had both. Sometimes after WBR, there is something to "clean up." My RO said gamma knife is for less than 5 mets, so it seems you would qualify. I was pretty messed up for a couple of weeks but after treatment, my balance returned along with my fine motor skills. I was able to go to Las Vegas 4 day after finishing. I was a little tired but otherwise OK. And oh, mostly bald now.
Good luck and let us know how you are doing.
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Sorry to but in when I'm cluessless about brain mets but I want to respond to the her 2 quetion. In regards to the question on her2 meds, in the past they usually put you herceptin first but perjeta is a newly approved her2 med. You can only take that med as a first line drug. That means you can elect to try perjeta as your first her2 med or herceptin, if you go with herceptin you can never go back and get the insurance to approve perjeta untils something changes with the fda approval. It was approved as a first line tx and I guess due to costs the insurance companies are sticking to that very strictly. There are many of us that would love the opportunity to try perjeta but it is unlikely we will ever get it unless something changes. So if you have the opportunity why not try it first, it is supposed to be a very good drug for her2 pos.
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Deena, i'm going tomorrow for my 7th cyberknife treatment my biggest was 11 mm i just call it wack-a-mole it works no side effects for me hope it works 4 you love an blessings to all
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Has anybody heard of intracranial Hypotension, had gamma knife 3 times in 2 years, last Mri showed lesions shrinking, but worried about this brain hypotension seeing another specialist 12/18. so far they saying it could be either, not enough blood flow to the brain or cerebral fluid leak. anyone experience any of this. worried.
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Hey everyone! Haven't posted in weeks if not afew months. Currently doing the top 3. Taxoterre, Perjita and Herceptin. I have had 4 rounds. Skipped one cuz I didn't feel like doing it and ourGrandaughter was going to be here the following week. Tomorrow I have a cat scan, and I have some decisions to make, depending on the results. I have already decided no one is getting near my brain again. Not sure if the wbr or the tumors are the culprits, but my right side acts as though it has been unplugged. If I leave my house, it is with a wheelchair. I speak in cursive,like an old drunk man, I will not live with anything else being taken from me. A chemo nurse said you really need to weigh it out. Chemo is wicked on the ol' bone marrow.
That't enough of that. Our 2nd son is officially a City Fire fighter/paramedic. Super proud. 1st son is a contractor, making more money than he needs, 1st daughter is a server, loves it and 2nd daughter is going to school to be a Pediatric Nurse. Thank goodness their all on good tracks. Hubby is trying to give Phil Mickelson a run for his money. We're each responsible for one of our stockings. Xmas should be interesting!!!!! I wonder if our kids will ever not have Xmas lists,and if hubby will ever stop with the shopping madness. I used to do all of this. Now I sit and watch crummy TV or go to lunch with my girl friends and sisters and daughters. I am gonna get fat. Can't believe "The Troubles" started only 2 years ago.
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You have raised great kids. They seem happy with the paths they've chosen.
Good luck with your cat scan tomorrow.
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Hi, Jodi! Thanks for cheering us up in spite of your own compromises.
Love,
Kathy
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I had my first gamma knife treatment session today. I found it much easeir than the MRI testing I had done yesterday. the staff were great and I was home after about 5 hours. thank you all who had discussed it. Having knowedge before today was very helpful.
My pathology came back from my second liver biospy today as well. I am still Her2+ which was better than the fear of becoming triple negative. I meet with my MO tomorrow to see what the whole plan is. I was happy that my new RO told me that when they scan me again in two months that I could expect new brian mets. He said because I haven't had any meds to deal with the systemic cancer that they will likely be there. Better to konw ahead of time then get devestated when it comes back positive. Maybee i will be lucky and there won't be any new ones. One can hope.
Thank you for being there ladies.
Jodi- big hugs to you.
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Glad the gamma went well Leftfoot. Thanks for the update.
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That's great news, Leftfoot!
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