Brain Mets Sisters
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I say find a neuro onc at a big NCI center. Is she in Rhode Island too? If yes, then you have some great options. But brain mets are tricky enough that she should certainly see a neuro onc.
Xeloda has a good record for crossing the blood brain barrier and is used for all pathology types
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Thank you Mara, Josee, Bad At Usernames for your replies.
Mara, that was my question to him asking if after the WBR would she be able to have some sort of targeted therapy should she need it and I just got a no this is all that can be done. After reading this thread I was really questioning that response.
Josee, my mom's overall health is good thankfully. Her first BC diagnosis was at 31, followed by a lumpectomy and radiaition. Everything was good until 30 years later in 2011 when the cancer was back in same breast. She had a single mastectomy and was put on a pill, I can't remember the name. Then in 2014 she had a CT scan of her lungs due to a bad cough. The scan caught part of the liver and that's when the liver mets were discovered. She started on Carboplatin and Taxol in November 2014 and after a year she was NED and was put on Femara. That brings us to last week when we got the brain mets news. She was having weakness on her left side and leaning to the left also. She ended up falling in the bathroom and hitting her head and vomited. I took her to the ER where they did the CT scan. She is ER+/PR+, HER2-. Thank you for your recommendation, I have been thinking of Boston but wasn't sure where to start. I will start researching neuro oncologists.
Bad, yes my mom is in RI also. I will search here as well. I had read on here of certain chemo options that cross the BBB, but was told there weren't any. I just can't help thinking we are being misinformed based on what I have been reading.
Thank you all for your support, Tracey
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Tre4, I'd also recommend a consult with a neuro oncologist. I see your mom is ER/PR +, has she had any hormonals? My current course of treatment was GammaKnife radiation to the surgical bed of the tumor and now I will take Arimidex (hormonal) until a progression is seen. So far, so good. Best wishes to you!
Hello to everyone else! I wish you peace and comfort as the holidays approach. Much love.
Carrie
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tre4,
Certainly look in RI. I have to travel 2 hrs to Boson but only do it once every three months or so the meet the neuro onc. I have a local onc (all cancers likely like the one your mother sees) who does most of my treatment but takes the guidance of the MGH team. I see dr Brastianos at MGH. I like her a lot. She's young mid 30s maybe and has a family history of breast cancer. She's really pioneering the genetic component to the brain tumor. She's got a lot of clinical trials and just really good. I am the same profile as your your mom. I am currently on femara, Ibrance, and get a brain MRI every three months. The chemo that has been shown to work for our type is xeloda but there seems to be some promising clinical trials. To say there is nothing left to do at the place your mom is seems premature to me.
Josee
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Hi Carrie,
Right now she is on Femara and her body and bone scans are still showing up clear, so that is good. She still has 4 WBR treatments to go and then scan 6-8 weeks after. Neuro onc is definitely our next step. Thank you and best wishes to you as well!
Josee, I looked up Dr. Brastianos and read as much as possible. She definitely seems like a great onc. I am going to talk to my mom about her. Boston is about an hour from us, so it's not bad. Do you see anyone else from the neuro onc team or just her?
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tre4,
I see her. Dr Cahill did a great job on my craniotomy. And I see dr juric for breast oncology (just once every 3 months too). They have a blood test for genetically looking at tumor cells in blood. Just a blood draw so relatively easy to do. Mine came back saying I have an overactive gene which is the same one Ibrance targets so they expect it to be effective given and the right treatment. I did all my radiation at the local hospital but did see MGH for the treatment plan. I had a single met removed by surgery so they did 10 targeted treatments to the tumor area.
Josee
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Thank you so much Josee and all of you ladies, you have been a great help. Best wishes to you all and I hope you have a nice holiday with your families and loved ones
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Tre4. You are an amazing daughter and I hope you find the answers to all of your questions. No better place to ask than here.
I finished my PCI last Friday. So far so good, a bit fatiguesdand my lovely 1.5 inches of hair regrowth is quickly going south. Any idea when I can start with Nioxin? I asked the radiologists and they didn't know. Right now my head is prettty sore, like a sunburn and my hair hurts liike when I did Taxol years ago so I know not right away or anything. I'm wearing a buff to not get hair in my food or in my holiday baking. Anyone?
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just catching up on this thread and was reading some thing that confused me. A few of you aren't getting brain mris because of the radiation exposure? It was my understanding there is no radiation in mris. I know the contrast can be hard on your liver however...
And a clean MRI can give a false sense of security? Curious the reasoning behind this one. I hope it's ok to ask these questions
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I can add that I had 5 lesions in my brain ranging from 6mm to 23mm...
I have 2 that are not visible anymore and 3 that are continuing to decrease in size and at last MRI are all at 8mm. Radiation was in May (SRS on 4 lesions) and July (SRS - 1 new lesion)...
I will be continuing MRIs every three months. I was wondering if this is also more important when you have "active" lesions although I am pretty certain it is standard protocol / best practice.
My CTs for metastasis in my body ( liver, spleen and not visible in my lungs and gastroesophageal area and also sclerotic lesions on innumerable bones) are 3months as well. It all sounds pretty drastic but i'v responded well to all the treatments so far and am just thankful for every three months I get.
I hope all of you are staying warm and I want you to know that I do peek in on the thread and my heart goes out to all of you.
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My RO said no further MRI unless I am symptomatic. I plan to confirm this with my MO as well. I am not 100 per cent OK without being scanned.
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I'll be getting full body CT scans starting in January and then every three months per my MO. Prior to this I asked the MO if when one was DX with cancer wouldn't it me a good idea to have a full body scan as part of the yearly wellness check. He said no because of the sense of a false sense of security and exposure to radiation. Also added that it would be an out of pockets expense, not covered by OHIP. That wouldn't have mattered, I would have come up with the money. Would it have helped me? Hard to say and I'll never know now
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It is standard protocol to have Scans every 3 months if you have secondary breast cancer. If you have had brain mets, then there should be a full head MRI at least every 3 months. The entire point of this is to catch anything bad early. For example two small lesions be treated by SRS easily, two large ones can't. Radiation to the CNS can cause swelling, etc which all should be monitored. There is no radiation from a head MRI.
I would absolutely insist on this.
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I had one brain met. Since it was not found until it was big enough to need a craniotomy, I make sure now to get a brain MRI every 3 months (my MO asks me what I want). I am NOT going down THAT road again!
My MO does, however, do abdominal ultrasound every 3 months like clockwork and chest X-rays about every 6 months, no questions asked.
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I am on a every 3 month schedule for both brain MRIs and neck down CT scans. My MO agreed to stretch them out to every 4 months now that I've been NED for a bit. It's ok with me as I've been having body CTs every 3 months for 4 straight years. I can do with one less CT a year to decrease the amount of radiation I get.
I will continue every 3 month brain MRIs. I am not willing to let that one g
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Hi all,
Interesting to read about folks' scan schedules. I've had so many scans since I was hospitalized for my original BC brain tumor that I think I must be glowing. My current schedule has been quarterly PET/CTs and about one to two months between brain MRIs, but we were following leptomeningeal spread for me.
My last two brain scans were in late October, showing disease stability, then early November as a planning scan for Cyberknife to a tiny temporal lobe lesion I believe grew due to lack of control of my LM. I had a spinal scan which came back clear just after Thanksgiving. Next Tuesday I'll get anotherbrain scan.
I didn't really feel a thing from Cyberknife which was awesome, all things considered. My RO earlier this year said if anything new showed up outside the posterior fossa (low back of the brain, where the cerebellum and brain stem are housed) area that was treated with partialbrain rads then we could treat it. She andI made this happen, three neuro-oncs had not suggested anything other than watchful waiting. Yeah, I'm sort of over watchful waiting after that approach almost killed me a few times.
This month I can loook back even weeks ago and see how much better I'm doing. I had no idea in September and October about what was to come, would I ever recover because I was dizzy and needed the balance touchstone of a cane for stability as holding an arm or leaning on a wall would have done. This past week I went ice skating with my boys, the day after I took them up to the mountains s for skiing lessons. I can't think of more treacherous conditions than dealing with slippery ice, uneven surfaces, hiking up snowdrifts -- and I was fine.
All bets aren't off yet for me and I have no idea what the future will hold but I am still here and doing great.
My current oncology treatment:
Intrathecal Topotecan (IT) and Herceptin administered weekly through my Ommaya reservoir
IV Avastin every two weeks
IV Kadcyla every 3 weeks
Insurance is on appeal still for the Avastin as its use in breast cancer patients is considered experimental. I had to accept financial responsibility in the meantime. My one neuro-onc has taken it through the first appeal and a peer-to-peer review, she has to do the second appeal now. I hope no one else finds themselves in this situation where two neuro-once have both said Avastin (bevicuzumab) is approapriate in my case of progression and the insurance company says no. Unreal. Here are some links about how any why Avastin is appropriate for HER2 brain mets:
"combination of CPT-11 and bevacizumab yielded a high radiographic response for the treatment of refractory brain metastases from HER2–neu-positive breast cancer. The regimen was well tolerated with improvement of time to progression and survival. A prospective study is warranted."
CPT-11/bevacizumab for the treatment of refractory brain metastases in patients with HER2–neu-positive breast cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46648...
"We observed that the combination of a HER2 inhibitor with an anti-VEGF receptor-2 (VEGFR2) antibody significantly slows tumor growth in the brain, resulting in a striking survival benefit. This benefit appears largely due to an enhanced antiangiogenic effect: Combination therapy reduced both the total and functional microvascular density in the brain xenografts. In addition, the combination therapy led to a marked increase in necrosis of the brain lesions. Moreover, we observed even better antitumor activity after combining both trastuzumab and lapatinib with the anti-VEGFR2 antibody. This triple-drug combination prolonged the median overall survival fivefold compared with the control-treated group and twofold compared with either two-drug regimen. These findings support the clinical development of this three-drug regimen for the treatment of HER2-amplified breast cancer brain metastases."
Combined targeting of HER2 and VEGFR2 for effective treatment of HER2-amplified breast cancer brain metastases.
https://www.ncbi.nlm.nih.gov/pubmed/23071298
Bevacizumab induces A549 cell apoptosis through the mechanism of endoplasmic reticulum stress in vitro.
http://www.ncbi.nlm.nih.gov/m/pubmed/26191230/
HER2 is able to become radioresistant if the cancerous cells are able to do a protective folding of the cellular protein in the endoplasmic reticulum. Avastin forces the cell to open and shut down, inhibiting this effect.
Avastin works best when given with a cytotoxic agent, in the two article links above it is shown to have synergy with topoisomerase injuring drugs -- Irinotecan and its derivative, Topotecan are isomerase inhibitors. I have felt the synergy between the Avastin and the IT treatment in my own body, weird as one often can't feel chemo working but I could due to how and where my disease spread so we are dosing Avastin concurrently with my IT treatment.
Avastin should work for at least three months my neuro-oncs tell me, usually for much longer, and sometimes, more rarely, it is enough.
I'm am still doing complementary therapies through a naturopathic clinic as well, plus I am still keeping to my low-carb, modified ketogenic diet.
I will report back on my brain MRI next week.
Ann
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Agness, so glad to hear from you. Skating with your family sounds wonderful. Glad to hear that you have stability as well. Hope you have a great holiday too.
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Ann, thank you so much for generously sharing helpful information and explanation, as well as your insightful perspective. I hope you receive stellar news after your test next week, and that you'll be one of those special patients for whom the treatment you're undertaking permanently resolves your mets!
Sending you and everyone here best wishes the holidays and beyond!
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Agnes- wishing you best on your scan coming up. I too scan my brain tomorrow and it always bring up feelings of uncertainty.
Thanks to everyone who responded with their scan schedule it's something I'm always curious about
Mara- congrats on being done with your rads too so glad your doing so awesome!! Inspiration indeed, everyone
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Happy Holidays everyone! I hope it was spent with family and friends. After a busy couple of days with family I'm chilling at home. Had plans to go out and watch the Junior Hockey game tonight but will curl up on the couch with my puppy and watch it on TV. Not sure if it's Rads related fatigue or the craziness of the week before Christmas but I am tired.
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Hi ladies,
Have been on this forum in the past. Well mom had 2 lesions which had cyberknife and complications with radiation necrosis.
Long story short she now has multiple sub centimeter lesions. One specific lesion is in the back of the brain in a critical area the RO suggested no more watch and wait. After discussion recommend WBR. 10 sessions.
She had lesions dating back to September but they have been watching it closely.
In any case she's TNBC but AR+ so bicalutamide with palbociclib have maintained everything in her lungs and bone stable.
What have been you experiences for WBR. Also what would ladies think if she were to travel???
She finishes January 16 and we had a trip planned for that weekend- flight...
I guess merry christmas and happy new year!
Had hoped this would not have progressed further but hoping WBR will do the job this time
praying....Any tips for the WBR!!!! your experiences would be sincerely appreciated.....
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Sorry, just saw this post. I had WBR back in September. I will give you my experiences with it.
My hair fell out almost 2 weeks to the day I started it. She will go totally bald if she is not already. You may want to get a wig. Keep ears moisturized, I use Glaxal Base cream, consider cutting the hair short to avoid having to lose big clumps.
She will probably get some nausea during the treatments, ask for an antinausea med. She will also probably be given steroids as well to help keep brain swelling down. She should ask how soon she can wean off.
There will be a lot of fatigue during and afterwords. Does not mean she cannot travel, but be sure that she can rest quite a bit. The exhaustion is usually due to radiation but also coming off steroids. Lots of rest will obviously help with that.
I am about 2 months out. I do not currently notice any issues with memory or anything. Sometimes there can be some short term memory loss, nothing a list can't fix. I found mine improved approx a month after done. My fatigue peaked around 6 weeks after done. I started to recover more when I hit the 2 month mark. It is not an easy treatment, but is definitely doable with lots of rest and patience with yourself. Exercise if possible, this will speed recovery.
Last thing, if there is any concern about memory loss, she can ask for a drug called Namenda. This is given with alzheimer's but has been used during WBR as well. If her condition was decent previous to this WBR then she should expect to recover well.
Good luck to your mom. It is a very doable treatment.
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Calling Becs...
You have mentioned having truncal seizures from the right paretial lobe tumor since rads. Well guess what,I have them too! They are few and far between and been correlated with both progression as no progression, since my initial surgery. What they HAVE been correlated with, ive realized, is riding something with high vibration (there's a dirty joke to be made here but it actually happens when on the jet ski or in my husband's 8-wheeler). I'm emailing both oncs today it see if I need to move my 2/1 MRI up but I'd also love to hear your experiences with the truncal seizures
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hi MammaRay,
Please don't feel embarrassed to ask about timelines.. I know for one that I too, have looked feverishly at the dates and this is what I have seen.
I have seen some people have been around a lot longer than 1-2years, and there is somebody for much longer.
My optimism did an about face when I got brain mets (4 and then 1 lesion).... but although I don't feel the same as I did before physically, I do still feel that I am grateful to be alive and I do not think in terms of for how long (?), but for the time being...
my lesions continue to shrink and that makes me feel good... (8 months now and all system mets are stable too)... and there are new treatments on the way for brain mets starting with a clinical trial where they will administer herceptin across the blood brain barrier coming up soon at Sunnybrook here in Toronto
Keep planning for tomorrow,
Wishing strength and hope,
JoJo
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Mamma Ray, none of us know how long we will go. Brain mets are scary for sure. There are mets that may mean a shorter span of time ie Leptomeningeal mets. Treatment options for us have improved immensely and the survival time is going up even for brain metsters. I consider it all a crapshoot myself and know that if I get mets elsewhere in my body, they could be responsible for my downfall. A lot more people I know of have passed away from mets in another part of the body. We live and do the best we can. I feel we can live well and I try not to worry about how long I may have left. It is hard to do, but all I can do is push forward. I hope the same for you and I hope for a long time without progression for all of us. Best of luck. May all our treatments be kind to us when it comes to SE. Makes it easier just to live life.
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Don't feel guilty about your post. This is a safe place to say what we need to. We can say the stuff that may even be too scary for our families. I am new at this Stage IV stuff myself so I am sure there will be huge ups and downs for me along the way. I love that this site allows me to take some of the burden off myself and my family. Feel free to vent or anything you are afraid of. The brain stuff definitely is scary but there are people who have done well. Some don't post often simply due to being able to live life. I hold onto that thought often and try not to worry about my time. As long as I have no symptoms, I know I am fine. Good luck, keep us posted.
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well said Mara.. and thanks for posting the question Mamma!
I too, do not post often but get great relief and comfort from reading.
Thank you.
Jojo
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When my brain tumor was finally discovered, that my bad headaches and pain in my neck and shoulder and spontaneous vomiting were not late onset occipital neuralgia from whiplash I had in 2000, I was ecstatic to still be alive. It was basically my entry into the world of mets, not dying.
Six weeks later I thought I would scroll through the posts on this group, one I had already joined, and see how long brain mets patients were really surviving -- after tracking 3 people from diagnosis to death, I had to stop. I cried and reported back to my early stage chemo group that my doctors expected me really not to survive. I decided that they were wrong about me, even before I knew of my leptomeningeal diagnosis and its awful prognosis.
I constantly go back to a few things, even as my docs and even my own health issues (aka my brain mets) have knocked me down:
- We are not statistics.
- There is no date stamped on the bottom of our foot.
- Research is based on studies often from patients decades ago and they know a lot more now. Even cutting age research is 3 years old because it takes time to collect, analyze, document and get published. Totally bleeding edge stuff might be 18 months old.
- Doctors aren't gods. When my diagnosis got scarier a year ago I didn't give up and I'm being cared for by docs at four hospitals right now and I even keep two neuro-oncs on my team, one for just consulting on my case.
- It is not brain mets that kills most often but systemic spread elsewhere in the body.
- A patient on another forum wisely said, to paraphrase, that docs don't know how to cure us so we get at least as much of a say so in our care and treatment.
- Since I started out by almost dying I actually know that things will be okay no matter what.
My team acknowledges that I am basically steering my care now, but I know that it is also because I have gathered a team around me that are knowledgeable and willing. I try to ignore bad stories for myself, from docs to medical articles etc.,and just make note of the details.
Which brings me to...
I had my brain scan this week for my leptomeningeal (LM) spread and it's working!!! No new lesions and what is there is diminished or sometimes almost gone. My consulting neuro-onc said "keep doing what you are doing because it's working." My other neuro-onc who I saw yesterday for intrathecal treatment was so happy at the news.
My LM started growing right after my craniotomy and was suspected on imaging in September 2015. It hasn't been easy at all but here I am welcoming in 2017
Ann
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very inspiring, thank you for sharing Ann!
I feel the same way... I don't think prognosis in terms of time.. I think what do we do next?
I'm fortunate to also have a closeworking relationship with my team and I ask a lot of questions and although I have a healthcare background I looked up best practices for my care and I just ensure I'm getting that..
thanks again Ann.
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Agness/Ann, You are inspiring. When I was first diagnosed, I was drawn to your posts on this thread. If (god forbid) I get LM spread, I hope that the treatments you have employed against it will be available to me in Canada. Glad to hear about the good scan as well.
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