Brain Mets Sisters
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momallgetime-
I had brain and liver mets in December 2012. I am ER/Pr negative, Her2+
I had gamma knife to two left frontal lesions but they were in my brain not skull.
Was put on Xeloda and tykerb. Stayed on that combo for over 2 years and reached NED. Then in July 2015 had solitary met in liver. Had liver resection. Tykerb replaced by herceptin. Stayed on Xeloda. Herceptin discontinued in March 2016 due to decrease in heart function. Stayed on Xeloda. Stil on Xeloda today. I am NED as of last scans.
So I don't have skull mets but Xeloda and other her2 meds have kept me stable. I am not currently on a targeted therapy for Her2. Xeloda seems to be keeping cance at bay for now.
Hope they find something that works for your daughter
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MomAllTheTime,
My wife had skull bone mets, and eventually they developed into brain metastases. Coincidentally she was on Xeloda for a year and a half, and the brain mets started developing when she had to take a vacation from Xeloda. I think it is correct that dura mater mets are not brain mets; however, from dura there is a higher probability that cancer cells migrate to the brain.
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gciriani thanks for the quick response, I am really anxious about it, the left frontal lesion is really protruding out onto the skull, we will only know on Friday what they want to do about it. Other Neuro Onco wanted to operate but was uncomfortable due the whole bone mets status. I thought so about the Dura, that really bothers me.
leftfootforward thanks for your input. She hates the idea of going back to Xeloda. It's Chemo right? did you have loss of hair. She was on Tykerb already, so I wonder what their take is of putting her back on it. She said she felt better when she was taken off it. And then there are all these new txs options. Thanks. I'll get back here when I know more.
I did read about WBR and the net is not so kind towards it, it says there is much cognizant deficit post WBR if I understood correctly.
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Momallthetime-
Xeloda is a chemotherapy agent. I have not lost my hair on it. It has been much kinder to me that the other chemo I have been on. There are SE, but I have learned to live with them. I should also say that the combo of Xeloda and Tykerb made those SE much worse and less tolerable. Being on just Xeloda has been much kinder to me.
I wish you and your daughter all the best.
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Momallthetime- I start my 2nd cycle of Xeloda tonight. I am on a 7/7 schedule (one week on, one week off) and my MO considers a cycle a full month (so two 7/7s). I hear it is easier than a 2 week one/1 week off schedule. I would ask your daughter's doctor if this is a possibility.
After cycle one, I had very little symptoms, maybe just some mild tummy issues. And to try and avoid the hand and foot syndrome I have been slathering myself in lotion.
It also doesn't cause hairloss and my hair continues to grow back in after my gamma knife in February. I am just waiting until next week, after my follow-up MRI to see if their are any issues, before I stop wearing my wig to work.
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leftfootforward thanks -
Becs thanks. Yeah, i head in this site about the week on and off. About Xeloda i guess some ppl say there is loss of hair and some not.
Let's see what happens tomorrow.
GN!
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hi Bad, I love the unicorn analogy! I will take it!
I started the Abemaciclib trial today. Yikes! Fingers crossed.
What trial are you doing now?
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Elizabeth, My MO manages me from the neck down and my neuro-onc manages my head. They confer regularly. I have also been told that I am a very "unique" case in that I only had 1 brain met, no nodes, and am also ER/PR+. My BFF calls me a freak of nature...said with love of course. Here's to being unique and beating odds!
Carrie
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Hi I'm Christa. I'm on wbr 11 of 15 today. I look like a mix between Firemarshall Bill and Annie Lennox lol. 40 small leisons in two hemispheres of my brain and also speckled all over my lungs, three spots on liver.
i am taking a homeopathic drug called X-Ray which is supposed to help get the radiation out easier. I am taking rick simpson oil (medical marijuana) which is helping with the dizzy/throwing up/nausea, and also doing weekly IV of artesunate (malaria drug to try help the liver/lungs while we radiate my brain). drinking lots of water lots of water and keeping spirits high listening to music that gives me goosebumps, sitting outside when I can, eating from earth (no animals or processed foods)
i have battled depression since before this illness - and I know anyone that has been through that knows this can sometimes feel like a blessing more than a curse. an "honorable" way to go. i fight with this even more now that we've started the hormone therapy. i'm on fluoxetine 60/lexapro 10 daily to try to sidestep that beast. trying to spend as much time enjoying the little things, understanding spirituality, force myself to be around people, and not think about the fact that i never married or even got a boyfriend because i was too busy enjoying the crap out of my life
now i'm doing this alone. well, with you guys i hope. 
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Dear Christa,
Welcome to the BCO community. We are so glad that you reached out here to tell your story. We hope that you will find support and information as you continue to make your way and that BCO can add some ease to your journey. Please let us know via PM if we can do anything to help you to connect here. We look forward to hearing from you and learning about you. The Mods
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen, Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday particularly for the skull METS. Wanted Xeloda. But not now. Will get back to you after Friday.
Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone.
Christa IT sucks!! But you are not alone here, for sure!
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goodie- how was your one met treated? Gamma knife? When was it done? Are you NED now?
My current MO (at a major cancer hospital in a large city) is managing my mets right now and I have a radiation onc even though I'm not doing rads at the moment. My MO said that their neuro-oncs only see pts with primary tumors not mets. I found that surprising given this is a significant research hospital. I am definitely going to travel somewhere else to see a neuro-onc as I'm not ok with just being managed by a MO.
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Elizabeth, I had a crainotomy to remove the met. It had caused me to have a seizure. I then had GammaKnife to the tumor bed about a month after surgery. I've been NED since then (March 2015).
I really appreciate my MO's approach to working with my neuro-onc. I like everyone knowing his limitations and calling a specialist in, when needed. My MO is at my smaller, rural hospital and my neuro-onc at a city, university hospital. I'm very pleased with their care. It's so important to be comfortable with your docs and your care plan.
Small update on me...I have surgery scheduled to do a total hyster next week. My MO sent me to a oncology gyno to do this surgery robotically. He will use the da Vinci method, if possible. My MO doesn't believe there is any cancer, but this surgeon has a lot of experience with gynecological cancers and thus will be prepared to take nodes and anything else if he suspects cancer during the surgery. I'm praying that the extensive endometriosis they found during my failed ooph doesn't prevent them from completing the surgery robotically.
Lots of love to my fellow brain mets sisters
Carrie0 -
Carrie lots of luck your way. My daughter had it done laparoscopically, for her it went very well. She never complains out loud, so it's not so easy to gage, but she was able to drive the week after and took things in stride.
Elizabeth I think for sure you should go to a NeuroOnco that knows about Mets. They will look at things in a different way and then be able to advise you accordingly. We are waiting to see on Friday what the deal is with the Rads to the skull, and then we will hear about being followed by a Neuro Onco.
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I am in my 30s and brain only too... One met had SRS about 2 months ago. Hope it's shrinking the tumor
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I whole heartily agree with seeing a mets-specific neuro onc. They know what they are talking about, either good or bad. And offer solutions to things that other docs might not know about.
I actually met with mine yesterday. He is a neuro onc who specializes in seizure disorders caused by brain mets. I mean how much more specific can you get?!? I've been having a lot of issues over the last few weeks and he calmed my fears. He said he is pretty confident that there hasn't been any tumor regrowth (I guess I'll know for sure when I am scheduled for my MRI next week) and thinks that I may just have a small seizure disorder now. Apparently one of the lesions was located in a seizure epicenter and caused permanent damage. So he said now it is just a matter of tinkering with the meds to get the right combo, and he yelled at me for not drinking enough water during the day...
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hey question about hair regrowth after radio surgery. How long did that take? I'm 2 months post and still waiting
luckily it's behind ear and I can cover it up quite wel0 -
Pages - It took around 3 months for my hair to start regrowing both times.
Hey all, so sad to see new folks joking our posse here. Welcome, I hope we can provide some comfort to you.
Question : has anyone here had pseudoprogression post rads? How was it handled? What else do you know that might be useful to know?
My scan yesterday, 3rd since finishing partial brain rads, showed new areas of enhancement in the treated area. My neuro-onc and the radiologist had just barely any time to review the imaging before my consult so no one has time to go deeper yet, to see what other tests might show.
The really good news is that there has been no enhancement in the areas outside of the cerebellum; my partner and I were right to decline WBR as it would have only hurt me and for nothing.
I'll keep you posted. It all just so weird. Thankfully I have three teams of oncologist's to work with on this at four hospitals.
Stay well,
Ann
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Ann,
What are pseudoprogressions?
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I think it is brain damage but not necrosis, which would be dead tissue. MRIs pick up active scar tissue as well as active tumor.
This article says that PET can help with diagnosis of non-tumor. My recent PET didn't show progression which is good I guess
The Diagnosis and Treatment of Pseudoprogression, Radiation Necrosis and Brain Tumor Recurrence
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4139817/I've found other references that say systemic immunotherapy agents are associated with an increased possibility of pseudoprogression.
"the combination of sunitinib and whole-brain radiotherapy may be associated with a radiologic response that mimics tumor progression on magnetic resonance imaging scan. The pseudoprogression effect persists after whole-brain radiotherapy. This may be misinterpreted as disease progression and lead to erroneous treatment decisions. Second, sunitinib's adverse effects may be potentiated by radiotherapy for brain metastases, and this interaction should be considered when evaluating treatment-related toxicities."
http://m.jco.ascopubs.org/content/28/25/e433.fullMelanoma Brain Metastasis Pseudoprogression after Pembrolizumab Treatment
http://m.cancerimmunolres.aacrjournals.org/content/4/3/179.abstract
This one even states to not do immunotherapy at the same time as brain rads. I did that myself based on how awful my skin reacted to chest wall rads and I didn't want to take the risk with my brain. Studies of systemic Herceptin and WBR are showing an increased in survival but my Herceptin was much higher via IT so I wasn't going to take a chance.
Of course my treatment is non-standard so it's all very grey and uncertain right now.
-Ann
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Hi There,
I am curious about hair regrowth as well... I had SRS to cerebellum and right temporal lobe. Radiation to three other areas (Brain Stem and aqueduct regions).. total 7 treatments in all. My hair has always been short but I now have a huge vertical bald spot going down the back of my head and two other big spots just hiding on my sides.
Im wondering if anyone has ideas on best haircuts to get... I watch a lot of baseball and Im noticing all the guys have heads shaved on bottom 3/4s and tufts of spiky or long hair on top.. I feel I might be able to get away with a cut like this however bald spots would still stay bald compared to shaved areas...
Does anyone know of some good short cuts to get to try to hide as well as possible the radiation spots?
I didn't shave my head for radiation bc I noticed I feel good when looking in the mirror (looks almost the same).. but then my friends are all on duty to remind me to wear a cap when I go outside!
I am new to Brain mets (stated May 2016, day before I was to go on month long holiday) and I will watch this board to help with my anxieties in dealing with this.
I wish everyone good hope, strength and luck!
JOJO
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Agness- I had a similar thing happen to me ( i think). We watched it via brain MRI for a few cycles so maybe 6 months. After 6 months they weren't comfortable saying that it wasn't cancer. That is what led me to have my craniotomy in Feb of 2015. It all worked out for me in the end as it was just scar tissue. So it was a bit to go through to find out it was nothing, but it was definitive. I have had no problems since the surgery to check on the status.
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In my wife's case the wording that was used at 3 months was: "Multiple foci ... consistent with multiple metastatic foci, which have increased in size and number". The radiation oncologist was pleased, explaining that it was the signature of a successful WBR; the increased number was consistent with metastases that at the first MRI 3 months before were too small to be detected, but that nevertheless had died and generated scars. Next MRI is due on Monday.
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Good luck Giovanni. I hate these scans as much as anybody but at least they give us more to work with.
Leftfootforward - crazy, 6 months eh? I don't think they can biopsy it without causing me massive brain damage.
Jojo - check out undercut hairstyles; us brain rads gals are very en pointe for fashionable cuts this year. Welcome to the club no one ever wanted to join
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Jojo you comment is apropos to Dani's situation now.The only problem is hers IN the front!! She is quite upset about it.
There is much extensive disease involving the Bony Calvarium(over 20 lesions) . But their biggest concern at the moment is one particularly at the Frontal Cavalrium.(it kept growing, she had Gamma done a yr ago nearby, but this one…) Another MRI is set for this wk,( bcs Dani had another Pet/Ct done this past wk) the last one was 4 wks ago, she had it redone, bcs doc felt something on her body, anyway so they are concerned that things moved ahead on the skull area too.
We had a discussion with Rad Onco on Friday, she would very much want to do Rads to the area, if anything to keep it from growing (they will wait for this next MRI). Anyway it's in the front, and there would be a big empty spot if Radiated, at least 4x4, and Dani almost does not wanna do it, bcs HOW can one cover that spot?? Hair will not grow up, Rad Onco said. Hmm, any ideas?? She said maybe (depending on this next MRI), if it did not grow much from 6 wks ago piro MRI, she would work with Dani and wait to see if new systemic therapy will do something, BUT if it grew a lot, like much of the rest of her body, I am not sure she wants to wait.
Any ideas?So hard to convince her to do it.
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Today is my no 5 of 10 WBR sessions. It seems to be going ok so far. I still have headaches, but not quite so bad, although that may change. Sleeping is a big problem, being on 8 mg of Dex a day, I'm getting sooo tired
I was wondering if any of you here were diagnosed with LM right off- or do most of you have actual lesions in the brain itself?
I'm feeling very alone in this diagnosis (read only 2-5% of MBC people have it - & that it's end stage stuff) so feeling scared as well. I haven't had a chance to talk to my oncologist yet...I'll try and make a private appt with him (usually see him in public system here- short appts, so want a more in-depth discussion)
Any hope? Has any one dealt with this for a while?
Thanks for any advice etc!
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kt1966,
My wife was diagnosed with two main lesions and LM at the same time. Both must have been there for some time, but the oncologists couldn't tell us which was first. Possibly the LM, because there were bony growths, which were part pf the bone mets before. Headaches were not a problem. We tapered out of Dexamethasone very gradually from a 8 mg dosage.
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Thanks gciriani.
I'm waiting to hear when my appt will be, but oncs nurse is on to it now
Time for sleeping tablets too I think (I'm looking forward to weaning off the Dex once rads are done!) It will be good to have a really long in-depth discussion re where to from here. I am encouraged that your wife is doing ok, and for so long.
kt
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Was looking through the Angels thread and saw that nancyh and fujiimama both died. Hadn't checked it in a couple of months. So sad.
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