Brain Mets Sisters
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I'm sorry to hear Dani is continuing to struggle with treatments. She's in my thoughts.
I'm doing well. Ready to enjoy the summer and warmer weather.
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I posting here on behalf of my wife since we need help and options.
My wife is HER2+, and in april 2016 the cancer recurred stage 4, spread to bone, brain, lungs, kidney. We started with H+P+T(abraxane) and then did WBR followed by neratinib+taxol. Neratinib initially worked in body but failed to control in the brain. We did a GK and then tried Kadcyla but that didnt work. Then we were on Keytruda + Gemzar + Carboplatin.
The tumors in the brain still progressed and we did repeat WBR. Then my wifes legs became weak and 1 week ago we ended up admitted to the hospital with both legs paralyzed due to tumors in the spine. She is now getting radiation to the spine but the chemo has been held.
Given where things are, the doctors want to know if we should prolong treatment. My wife is very strong and wants to fight and I am looking for options to help her beat this. Any thoughts/ideas welcome.
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leotorbk, It certainly sounds like you have both been through the wringer as far as treatments and drugs go. You have both been through a lot and I am sorry whenever I hear that. My heart goes out to you.
The question of whether she should go on is one we cannot answer, we cannot know if her treatment will start attacking the mets.
My suggestion would be to allow your wife to direct her care. If she is wanting to keep trying different drugs, I would recommend you support her. Consult the doctors to find out her prognosis and go from there. If there is absolutely nothing more that can be done, medical personnel will advise.
My other recommendation would be to ask her if she is doing it for herself or your family. Let her know that you will support her no matter what, but when it is too much for her, you support her suspending treatment as well.
I hope the best results for you and your wife whatever you decide and please make sure there are people supporting you as well ie social workers and others to talk to. This can help share your load of the stress trying to stay strong for her.
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Hello, I don't usually post in these boards but I have had a recent scan to my Brain last Friday and the results were devistating. I have been givin -9 months. I haven't had the chance to fully wrap my thoughts around it all. I have 5 children my youngest turned 2 last Friday and my oldest is 16. This is about I can gathere from my thoughts for right now. Thank you for listening.
Josey
My instagram is Joseannaa
❤️ a light
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I am so sorry to hear your news Prettyblueeyes.
I usually hate it when oncs tell us how much time we have left. For some people, I know they like to know so they can plan for things. For myself, I have always believed that if someone tried to tell me, I would only last as long as they say.
I would like to encourage you to remain hopeful. Try not to take the timeframe as gospel. The onc is giving their opinion based on many other women/men who've dealt with brain mets before you. Treatments have and continue to improve leading to longer life. Quite a few ladies on this thread were treated years ago. They are just too busy to post much.
What type of treatment has been proposed for you. That my help us to start to try to offer our experience with our dx. Good luck and hugs to you and your family.
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Prettyblueeyes, I'm so sorry too prayers for you and your family.
As Mara said, I would encourage a lot of questions and let us know the dx and treatments that have been done.
Again, prayers and gentle hugs.
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pretty blue eyes- I am sorry you had to join us. I am hopeful that you prove them all wrong. With al the new treatments out there you never know. Ask questions and make the decisions that make the most sense for you and your family.
We are here for you
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Update
I haven't posted in a while, so I'll give an update on my wife from the beginning of Brain Mets.
Aug 15 - Solitary 4CM Brain Met. Resected. No Systemic Disease.
Nov 15 - Recurrence in Brain Met. Resected again.
Dec 15 - Conformal Radiotherapy to resection cavity.
Mar 16 - Multiple Dural Mets
May 16 - Gamma Knife to 11 lesions, mostly Dural
June 16 - Started weekly intrathecal Herceptin 105MG and Methotrexate 12.5MG. IV Taxotere, Herceptin & Perjeta
July 16 - MRI Head shows near complete response of 11 treated lesions in May, but new lesion in Cerebellam.
Sept 16 - Gamma Knife to 3 Lesions. Intrathecal treatment moved to every two weeks.
Nov 16 - Head MRI shows complete response to all previous lesions. Intrathecal treatment moved to every 3 weeks.
Jan 17 - Head MRI shows 4 new lesions. Onc feels they are a recurrence, Neurosurgeon not so sure. Also Cutaneous lesion on Skull. Intrathecal treatment back to every week.
Feb 17 - Change from Exemestane to Letrozole.
April 17 - Gamma Knife to 3 lesions. One of them a recurrence. Other area is deemed to be effects of previous Gamma Knife treatment. Start Kadcyla.
May 17 - Head MRI shows shrinkage to lesions treated in May. Area deemed to be effects of Gamma Knife virtually disappeared. All previously treated lesions gone. Cutaneous lesion has shrunk from 12mm to 6mm.
June 17 - Routine CT Scan. Results on Wednesday. Hopefully still NED.
This and the HER2 forum have helped me gain so much knowledge. Agness and Rolepaul have provided me with invaluable knowledge. Knowledge is power!
We have learnt a lot the last 2 years. The biggest lesson is to question all treatment options and always get a second opinion. We are lucky to have a great support team. We do have to go to different hospitals, but it has been worth it. I have had to fight some of the top Neuro doctors in the country to get my wife the right treatment. But I have proven to be right.
No matter how bad things look, there are options. I think Gamma Knife is absolutely fantastic. The results can be amazing and the side effects are minimal and it can be repeated. Don't settle on standard care.
Keep fighting everyone.
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Freakzila thanks for sharing, the thing is when you go to these top doctors, their time is so limited. We have a top RO, but she tries to explain, but she keeps like 99% of info to herself, we go out of the room i see her discussing the scan with Fellow but she would not take the time and explain it to us, we would not understand. It's an unspoken language, I don't have the energy to always argue and DD wants to be out of there before she even gets there. Kudos to you!
Josey dear, first one doc opinion in such a situation is not enough, and also it depends what they see. Can you give more information when you feel a bit more up to it. It is beyond devastating, but it's worth to listen to different ideas. Lots of hugs.
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Hi All,
I'm joining for my loved cousin Amy who just found mets in her Sphenoid bone and hydrocephalus in the MRI. It's a month after she found her TMs went up and pet-ct showed bone mets only. Now our entire family is very scared. I cried in the afternoon but then had to pick up myself to be strong for her. She has been having double vision for 3 weeks and had a mini stroke like 2 weeks ago. Does anyone know what treatment options she can have? Thanks a ton!
Kidman
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hi sisters...just thought i would leave a update and see if any one has some input...had gamma knife to the tumor bed last friday and finished my novel by sunday,, yea!! i thought that would take longer...so my pet scan showed progression everywhere plus spleen (thats new)....doc is gonna get me started on Halaven iv on fri june 9th and he wants to add a parp inhibitor called Lynparza...(i had a great run off chemo since Nov 2015)...from what i understand these parp inhibitors target cells with damaged dna like BRCA but the fda has only approved it for ovarian cancer and my brain cancer is keeping me from the trials...please call the prayer warriors to help get this funded (its $12,000.00 a month) i need all the help i can get right now....has anyone been on this combo? got any info on these parp inhibitors?...any and all input is so welcome right now.....mom alltt, i think of you often and i wish i had your strength with these treatment options up in the air like this and are they so far up there that i wont get access to them...you sisters are all my hero's and i thank you all for being here to listen...without you there would be no one who truly understands...keep shining bright!!
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hi kidman gamma knife is a great option for targeting only your tumor and no healthy brain tissue...the clearance on the laser they use targets within 0.01mm so it is very effective...all the best to your friend and you...i know she is thankful for your strength right now....and if they do the gamma just be brave when they put that halo on...that thing has been the worst for me so far that if that treatment didnt work so well i couldnt ever do it again but it saved my life so off you go doing things you never thought you could
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Thanks for your advice Nan812. She's seeing her MO tonight (She lives in China so it's 12 hours ahead of eastern time). I will see how the doctor would suggest. I hope it's a spot where gamma knife can reach. I think the doctor will prescribe Chemo first then if it doesn't shrink then add radiation. I'm so new to brain mets because I thought it would be years before it reaches to brain. I wish I knew more about parp inhibitors. Hope you will get some feedback from others soon. hugs!
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hi I'm new to this thread. I had WBR 12 weeks ago. Had an MRI last week and sadly there aremore brain mets. I was very nauseous for 3 months which we now think was from the brain mets. Just as I'm feeling better and have some energy I get this diagnosis!
Onc has taken me off faslodex, herceptin and starting me on trastuzumab emtansine (kadcyla) starting tomorrow.
Has anyone had much success with this?
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hi all! I'm in the process of reading this thread. Any other good resources to learn about brain mets?
I've been having MRIs for a year and the suspicious spots have been stable, but the one yesterday showed some shriking some stable and one slightly larger. So, I'm waking up from the denial that's is probably nothing to this is very possible.
Dr is going to present my case/scans to tumor board and get their input. Also going to coordinate with my MO.
My main question right now what is too small to have gamma knife? Report says main spot is 1 cm x .2 cm...is this why she's saying we might wait 2 months and scan again? Of course I don't want to wait and see! My MO is talking about the possibility of my current treatment Kadcyla penetrating the brain, but I don't know about that, if I never had treatment to the brain...do they need a biopsy before doing any treatment?
Gosh. I feel so stupid about this topic right now. It's overwhelming.
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Hi gramen, I'm sorry you have to join us, but you will find lots of compassion and info here.
My best advice is to ask your MO for a referral to neuro oncologist. Get your team together! I have a neuro onc, neurosurgeon, and MO on mine. The three work together wonderfully and I feel covered from head to toe (as my MO likes to say).
I had gammaknife to the tumor bed, after a craniotomy so I can't really comment on how small is too small, others here will be able to, though.
Hang in there, the first few weeks/months after a brain mets diagnosis are the worst. You'll feel so much better once you get a treatment plan in place.
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Thank you Goodie!
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How y'all doing?
D is on the trial, and waiting for liver biopsy. Meanwhile in her lates brain MRI it showed there is more edema than b4. So strange, what could that mean? Otherwise it's quite stable. A bit this a bit that, but since a few weeks ago Rads, it's the same,but the Edema? really? WTH???0 -
hi gramen...i'm not sure but 1cm x 2cm sounds big to me especially for your brain ( its a confined space with nowhere but more brain tissue to press into)....ask to see the pic of it on your MRI, you will be shocked at how big it looks. i had 3 that size (all gammaknifed ,2 have been reabsorbed and the other is just dead tissue).....in the summer of 2016 i had a 4mm brain met GKed so my doc didnt think that was to small....ask them not to wait and see or give you a very good reason for the delay...I think they can be unpredictable, I had a surprise craniotomy 4 weeks ago when a routine scan showed one of those lil buggers decided to grow and collect a massive amount of edema surrounding it (doc called at 10 at night to get my butt to the hospital) and I had no symptoms except I was very tired...they never did a biopsy until they actually went in 4 weeks ago and it was my exact same breast cancer....I pray your doctors take good care of you and you find all the answers you're looking for...
Big ((hugs)) for all my brain mets sisters
oh btw, i got funded for the parp inhibitor and I started it yesterday (I hope my doc is right about it)....momatt, i was worried when I didnt read from you in a while, I hope the trial goes great and thank DD for blazing a trail for others to hopefully follow...
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Nan812, I hope you are recovering from your craniotomy well! Surprise/emergency craniotomys can be so scary!!! Though, looking back, I'm almost glad there was no time for me to think or make a decision about mine. I think I would have worried myself needlessly. Lots of healing thoughts sent your way!
Mom - I hope the trial is good for Dani!
I had my MO appointment yesterday. Routine PET/CT scan last Friday and results continue to show NED. My tumor markers are also good. I'm simply so thankful.
May you all have a lovely, peaceful weekend.
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Sending positive thoughts to all of us. This diagnosis is exhausting to say the least!
Thank you Nan812! I actually took a look at the monster yesterday, dr showed me the images, largest one is 1cm x 0.2 cm...but that was June 12th, scheduled July 11th for another brain MRI and spine MRI to check for LM...so who knows what we will see after month. I'm so frustrated on how long this is taking.
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Nan812 wow you are a lucky girl, how are you feeling? How long will it take for you to feel better.
You got me worried, the last MRI they did for D 2 weeks ago, shows more edema than it was there, but they don't say how much or any more details, this was done for the clinical trial, and I KNOW they don't care much about the person, just the results of the trial. I am gonna run tomorrow with the CD's and give it over to her RO in the other Center, and make sure she does not think it's a/t troublesome.
Hope you feel better soon. So wonderful that they are funding your trial. PARP inhibitors is a very big deal. So what drugs are they giving you? And you started already?
Goodie cheers cheers!
Gramen let's hope for good results.
Thank you all for being there, and thx for your support amazing ladies.
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goodie....doing the happy dance for you (and i look really silly)
gramen....yes it is so slow, i have been on my new chemo (halaven) for 3 weeks before i finally got funded meanwhile you have no idea what is going on inside you and you just want to throw everything including the kitchen sink at it. my dear i dont know much about LE but i pray that it is not a part of your DX....I'm sorry we're all here
momatt.....i seemed to have lost track of time and when i realized that it will be a month on the 28th from my brain surgery, i think i'm doing pretty good...i finished a novel (without having to reread every other line), worked on some art (posted on page 179 of this thread) , and did some spring gardening (a few lil fairy gardens too)...it almost feels like the gammaknife kicked my butt worse (had GK done to tumor bed on june 2nd)......Regarding the Parp Inhibitor I'm taking one called Lynparza and Z posted a great summary in a new thread that I was going to try to update on if anyone was interested.....I'll try to post a link to it or if i cant you can probably search my posts
pull up your big girl pants we're heading into another week
Topic: Olaparib (PARP Inhibitor) Slows Growth of BRCA-Related MBC
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mammaray,, i dont know a thing about those but im sure someone will chime in soon....i just wanted you to know that you will be in my thoughts and im wishing you the best of luck with this treatment....i truly hope it kicks some cancer ass .....big ((hugs))
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Just saying hello and seeing who is still active in this thread. My brain mets was 40 spots in two hemispheres last year at this time. I had WBR and this year my scan is just showing three tiny spots that aren't shrinking.... just lurking there.
Hope to meet more brain mets sisters soon, Christa
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Supercw
I'm fairly new here with one lesion in my right temple/eye area. Had rads that reduced it 20%.
Some debate on what layer it's in. They first thought it might be lining/fluid, but my RO doesn't think so because my symptoms are pretty stable. Nerve wracking, but good news I guess. Just moving along hoping for more energy soon.
This is a confusing part of mbc. All I've had previously are bone mets. They are easy to understand. Brain stuff is confusing.
Hope all are doing ok. Hugs.
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I'm still on this thread, checking in here and there for positive stories and to offer hope. I'm like Goodie- continued NED from neck down. I am brain only cohort, for 15 months now. Very grateful. Some days I'm tired, some days anxious but for the most part happy. Keep moving my body and nourishing it and living life. 5th brain MRI coming up soon I'm actually hopingthe scarring has gone down some since last one.
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new here. Not happy to be here, but feeling inspired by all of you! I was diagnosed with p-/e+/HER2+ breast cancer in my left lymph. They never found the original tumor. I had chemo first TCHP 6 cycles. Then surgery, then radiation. A month ago I started getting headaches. Had an MRI scan yesterday, doc says I have three tumors. I'm really scared and reeling and feeling like my fate is sealed. Help! Where should I go? What should I be reading
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Seashine,
I'm sorry you are here, but you will find great support. I'm new here too. I've been bone mets only for four years until this past January.
A helpful basic site I was recommended is brainmetsbc.org.
Keep checking back and letting us know you and support you.
Hugs
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hi seashine.....i'm over 2 years from my dx and i knew nothing about brain mets when i was dx'....my MO sent me to a RO and a brain surgeon and they all decided that gamma knife would be my best option....i had 5 tumors all in different parts of my brain....the gamma knike can target cancerous tissue and zap it with radiation, it has a tolerance to 0.05mm so they can avoid harming any healthy tissue....it is worth looking into and asking your doc about....if for some reason that is not an option they can do whole brain radiation, i think you may be tired for longer with WBR because more of your brain is affected but i havent had it so im not sure....i've read that some chemo can cross the blood brain barrier after certain treatments , or there is also surgery but who wants that (they can sometimes remove depending on location or implant a resivouir for chemo).....i wish you didnt have to be here, i think its a scary place to be but hey, i'm always finding myself doing things i never thought i could now and i know you can too.....STUPID CANCER!!!!.....you can do this girl friend ...big ((hugs))
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