Brain Mets Sisters
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Good morning! I have just recently joined this brain mets tribe and wanted to introduce myself. I was diagnosed with metastatic breast cancer (mets to spine and pelvis) in January, 2020. I have done fairly well managing the disease burden with nutrition, lifestyle, complimentary therapies all in conjunction with standard of care treatments (hormone suppression and Zometa infusions. At my last oncology visit in August, my numbers, scans, treatment response all looked excellent so I was being released to less assertive monitoring.
As we moved into the autumn I began to notice very subtle, vague neurological signs…coordination and little motor planning glitches with my left hand and foot. No “classic” signs of anything really going on in my brain. It’s important to note that once it was determined my breast cancer was metastatic, no one ever took a peak at my brain…but why would they if I wasn’t showing any symptoms of anything? To begin investigating my MO sent me for CT scans followed by an MRI of my brain. The CT scans showed no real disease burden anywhere in my body. But the MRI showed a very nice sized tumor sitting in the parietal lobe over the sensory motor strip. There was no evidence of anything else beyond that mass.These results sent me to the ER. Then a wait for surgery. Fortunately I am being treated at a cancer hospital/center that is at the leading edge in terms of research and development/treatment.
On Dec. 6th I went through a process developed and researched here that results in great outcomes for just this type of situation. I first had a targeted dose of radiation to the tumor followed by surgery to remove the tumor. The way it was explained is that the radiation kills the live cancer cells to diminish the likelihood of stray cancer cells seeding other areas of the brain like fairy dust. The surgeon said that after the radiation the tumor was hard, like a gum ball, which made removing it very easy without disturbing healthy brain tissue. When you see the surgeon absolutely giddy after surgery it gives you hope!
I came home on the 8th and have been working on regaining some strength and stamina. Each day is better than the one before and I have been setting little goals to move around with purpose more each day. My body has been used to lots of daily movement, so it feels good to be able to gain some of that back. There are still sensory motor things I have to think harder about, but that’s okay! I begin working with an OT/PT rehab team tomorrow, which I am excited about. When the neurosurgeon resident asked if I wanted to see the therapists, I left no question in his mind. I told him I have things to do, like get back to axe throwing!Thanks for listening.
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Susan- thank-you and much love to you, as well.
waves - welcome. I'm sorry you find yourself here but it's a great group with a wealth of support and knowledge. Your craniotomy recovery plan sounds perfect. Just do what you feel up to each day and rest when you need to. That's what I did. I had the reverse of your treatment plan - craniotomy first to remove the tumor and then GammaKnife radiation to the tumor bed to zap and lingering cells.
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Glad to hear that you are doing better with radiation and surgery Waves. Glad you can also get services as well.
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Hi brain mets sisters! I'm sorry I've been absent after you all gave me reassuring messages on brain progression in September. I've been dealing with treatment and treatment changes since then, and wanted to let you know I'm still here (!) and still being treated. I have had the very unusual treatment of five rounds of gamma knife on up to 200 tiny tumours. I've never heard of anyone having this treatment, but I'd already had whole brain radiotherapy and the tumours had started growing again. Last week I was in the gamma knife machine for close to ten hours! I have one more session to go and then my rad onc tells me we will have got them all for now.... I have an MRI before each treatment and there have been no new lesions so far, so we cross our fingers and toes that continues as I'm not sure how much more radiation I can have...I am currently on Xeloda as well but it's either not working or not working in the brain as each treatment my tumours in the brain have grown a little bit compared to the last scan. I have body scans this week and we'll assess if I need to change systemic treatment - I really would like something that works in the brain so will be asking to try Trodelvy (I'm TNBC).
It wouldn't be a post from me without a stress about something, so I've now worked myself into worrying about leptomeningeal mets in the spine. Does anyone have experience of these and the symptoms? About a month ago I started getting pain in my left hip and leg, it felt muscular (a dull ache) but I worried about neurological. About a week later I got a dull ache in my mid back and worried even more. I spoke to my rad onc but he said my tumours were small and the meninges clear in my brain scans so he didn't think this pain was related. About a week ago the back pain magically stopped, but the left hip/leg pain remained and it's got me on the codeine every day. I am having a bone scan this week and a spinal MRI next week so we'll get some information but does this sound neurological to you? Should I be researching treatment options? Or am I over-reacting?
Solidarity ladies - it's hard what we have to face
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Phet, you've been through a ton of rads and treatments. That in itself is a worry. Muscle pain can be many things,, arthritis, overuse etc or even drugs we take for our disease or for something else. In this case, listen to your onc. I'd be more worried about muscle weakness to be honest than pain.
Let your mind deal with the treatment you are receiving now, don't add more to worry about on top of what you are dealing with. You need rest and exercise if possible to relieve that stress, keep up appetite and rest for your treatment. I would not yet google the lepto stuff unless your onc mentions it.
It is amazing that the brain allows for WBR and yet can tolerate a 2nd focused dose of rads as well. I had WBR then more rads to a couple of spots in the original tumour site but my radiation onc said she would radiate again if called for a 3rd time as she said my brain is healed or consider surgery again.
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Phet,
So sorry that you are going through this. I can't imagine lying there for 10 hours. You must have an amazing rad onc. I don't think many would gamma knife 200 tumors. I agree with Mara. Don't worry about LM if they don't see any.
You have an incredibly strong will. Whatever you're on next has a better chance of working right after radiation since the BBB remains a little porous. Trodelvy is a great drug.
Sending positive vibes your way!
Hugs, Susan
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Well my scan results were not that great. I have three spots that have grown by a millimeter. My MO said I have options. I can stay on current treatment and we can scan sooner next time. Or I can switch to Enhertu. She talked to the RO and he said we can "re-radiate" those spots. I don't know what that means but she said it was not gamma knife. She will ask him why not gamma knife but we think it is because the number of original Mets to the brain. I HATE this disease.
Phet- so sorry you are going through all that. Where did you go to get 200 treated? I have never heard of that here in the U.S. My doctors are also going to check for lepto as well, even though the brain MRI did not show any evidence. I guess it is because of the sheer number of original mets
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Kikomoon,
A millimeter of growth can just be measurement rounding. I don't think my MO would consider that progression.
Hugs, Susan
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Wow Phet... 200 spots treated - nice. I personally know one woman who had 15 spots treated, then another 15 spots after 2 months, and then another 40 spots treated after 6 months. She said it all is possible, simply the planning for gamma-knife is crazy, and if you have dedicated personnel who agree to make planning for days and days, you can treat almost as many as you want if they are small enough not to cause significant SE in the brain. 200 is amazing though...
Saulius
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Hi wonderful women. I was diagnosed with stage 2 in 2014 and was declared cured after mastectomy and chemo. fast forward to 2021 when i presented with a right eye choroid met and acute sight changes. Staging shou bone, ? liver and lung mets. MRI of brain normal. My oncologist was shocked. Had biopsy which showed HR positive. I took Verzenio for 3 months and an AI. I had response in fact the tumor metastasized aggressively and sent me into respiratory distress. A ct in the ER showed marked worsening of lung, liver and bone. She immediately started paclitaxol and I did great, labs normalized lung mrs and liver mets improved. Feel great. No neuro signs, but insisted on f/u MRI. Of corse small diffuse brain mets. Am starting whole brain radiation this week, and meeting with my third oncologist- other ones retired. Don’t know what will happen with chemo.
Of course this has left me shocked. Feeling good and beat my personal best with my rower. would appreciate any thoughts.
thanks much
Donna zeiter
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Well, that is certainly a lot to deal with all at once. I am sorry you are dealing with it. The rower is going to be an excellent tool for you, keep it up all the way through the whole brain radiation. The biggest issues I dealt with were fatigue and not feeling hungry for a few weeks but once I was active again, it helped with that. Treatment of brain mets has improved a lot, I was originally given whole brain radiation and had another spot treatment two years later. I have dealt with brain mets coming up on 6 years. Stay active all the way through as much as possible, eat high protein meals, even if small to make your energy level stay up and talk to your docs re chemo or what they might put you on. I am not familiar with treatment of ER+.
The most encouraging thing I noticed in your post is that you are still feeling in shape and doing well physically. Keep your strength up as much as possible, keep the stress down and we will be here to encourage you all the way through.
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Donna,
I had a similar experience. I was eight years out from my second stage 0 diagnosis and an Opthamologist saw the tumor in my eye. First mets diagnosis included eye, brain, lung, bone, breast. Went through WBR right away for 12+ tumors. I'm still alive almost eight years later though my quality of life has deteriorated over the last year. Hoping to turn things around again so I'm on a clinical trial.
Sorry to hear that Verzenio didn't work but glad that paclitaxel did. I am sure you will find a lot of wonderful advice and support here.
Hugs, Susan
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Donna, sorry for all you’re going through. Ihad no symptoms but MO wanted a brain MRI which showed “innumerable” tiny Mets, so WBR for me last March, 10 sessions. My biggest problems were an excruciating headache after the first session only, then fatigue, nausea, and no appetite for awhile. My appetite has never fully recovered although it is much better. I have to actively try to eat small amounts all day. Like Mara said, try to keep active. Walking seemed to make my head swell during and a few weeks after but it went away. Good luck!
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posting on behalf of my mom, who can't speak English but is looking for some advice:
We found out that she had a 4cm tumor in the brain in October that required immediate surgery. Afterward we had another MRI scan showing that she had 8 visible new lesions, and the doctors recommended WBR. So in December, we went through 10 rounds of WBR. She handled it fairly well, a bit of insomnia, fatigue and skin peeling but no nausea or dizziness. We had a follow-up scan done four weeks after her last session, mainly to check on the surgical site. Turns out that some lesions grew and more appeared, for a total of 10 visible spots. Her oncologist is very discouraged and said there's two options: chemo or hospice. He says chemo is tough and doesn't think it'll have that much of an effect, and is pushing for hospice. He hasn't set up any new appointments for treatment plans.Reading this thread, it seems like WBR works for weeks and months afterward, and usually scans are done maybe 2 months or more after treatment. Does anyone have insight on the tumors growing more before shrinking, or the WBR not stopping progression at all?
We're just baffled that he thinks there's no way she can fight this, considering she's never had chemo and we've only tried one combo treatment so far of Ibrance+Letrozole. She's 62, and while dealing with bone and lung mets and potential lepto (MRI looks like it but 3 spinal taps still are inconclusive), she's able to walk and eat and has full cognitive function, with occasional headaches and a little shaky hands. She hasn’t needed painkillers for her symptoms since the radiation
She's very discouraged herself by what the oncologist says. Hoping I can tell her she's not alone. Thanks
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I’m sorry she (and you) are going through this and while I haven’t had WBR, I understand that it usually works better than this and I’m sorry for that. Tumors appearing larger after radiation is not unheard of but having new ones pop up so soon is uncommon and troubling. Radiation typically works better than chemo on brain mets, so I do see why the doctor is concerned. I wish I had more wisdom, perhaps someone else can provide additional information and experience.
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Chipotle,
Sometimes, radiation can take a while to work but I have not heard of getting new tumors so soon after WBR. Perhaps they're not new but were missed on a previous scan. You should ask the Radiologist to take another look at the pre-WBR scans.
I'm so sorry this has happened to your Mom. After WBR, your blood/brain barrier is more porous than usual so treatments that do permeate that barrier will be more effective. You should talk to your Mom's Oncologist about this.
Also, I would find another doctor. Sounds like your current one is too quick to give up.
Hoping you find an effective treatment soon.
Hugs, Susan
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Chipotle, totally agree with Susan on this. New mets popping up so soon is different but since the brain can be treated twice in the same spot and there are many drugs that cross the blood-brain barrier. You need to ask that doctor why he is giving up so soon and what his reasoning is. Unless she is on the verge of death which she is not, she could be treated again. Locally for the new spots with rads and drugs to slow down growth. Especially if she is functioning cognitively, physically and eating. She is nowhere near the point of giving up on her and I am angry for you and her at that doctor stating as much. Please seek a second opinion and find a doctor who is willing to treat her and not write her off so soon.
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Hey Mets Sisters, I'm posting on behalf of my mom who is 58, turning 59 02/28. My mother was diagnosed with stage IV breast cancer back in 2016 and at the time she was very weak and had lost a lot of weight. Luckily after having a Mastectomy and going through Chemo she got much better, her blood work and tests began looking very good. Up until recently she has just been on maintenance chemo and has been doing great. However about two months ago she began having trouble moving her right foot, unable to bend it (foot drop). Her toe would drag when she walks and its made it difficult for her to get around. Up until this point my mom has always had full functioning mobility. Then about 3 weeks - a month ago her right arm started bothering her and losing movement. At this point her hand and arm isn't able to do things like write, brush teeth, etc. So she goes to a doctor that says it could be arthritis and prescribes some medication. They refer her to physical therapy and a neurologist. Took her weeks to get to the neurologist and after some tests and her previous medical history he told her to go to the emergency room the following morning and be adamant that you need to be admitted at the hospital. My mom went and the doctor was great he called her cell phone and started yelling at the the hospital workers to admit her ASAP. They did and they did an MRI that revealed a lesion on her brain. This was Saturday 01/22/22 and they wanted to do surgery asap but the surgeons would not be in until Monday. So on 01/24/22 my mom had her surgery and they said they removed at least 95% of the tumor. She recovered in the hospital for 2 days and was just moved to rehab yesterday. We are waiting on the biopsy but we are sure that its brain mets.
I guess I'm here for two parts, as an only child I really hope her arm and foot mobility can come back. They said it happened because of the swelling and pressure in the brain, so maybe now that it is gone her movement will come back, and we really hopes it does. The doctor after surgery told us they consider it a success that her mobility won't get worse but it may not get any better. It worries me because my mom has an amazing attitude about life, she is literally my angel. And I know when she was originally diagnosed she was very sick but she was able to move freely, and I worry if her movement doesn't improve she will be really disappointed. The second part is now my mom needs to fight this, I'm happy they removed most of the tumor but any advice would be helpful either in terms of the treatment for mets or for her mobility after the tumor removal. Thanks in advance! - Joe
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Thank you Mara, Susan, and illimae. I told my mom what you guys said, and we've decided to get a second opinion and also consider switching oncologists. It's reassuring to hear that we're not wrong for thinking there's more to be done. I'll see what happens after that! I've already told her about the ladies in this forum who are in the same situation as her and are still fighting every day. I wish she could see it for herself...
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I was told in 2016 when a 10 cm brain met was found that I should plan for the end very soon. They were wrong, had surgery, whole brain radiation, more treatment to another spot. I am still here and in good health. There are many treatment options as I said. Your mom deserves someone who will fight. Especially since she is there mental and physically.
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well we talked to the RO and another MO today and they said that my mom's cancer is so rapidly progressing (new lesions in the brain in a month, even if they may have appeared before WBR) that we might've missed the safe window for chemo. The second opinion consult is set for two weeks from now but if we want to start chemo (again, not really pushing for it but just saying it is an option) they say we should start NOW. Now it's two more doctors saying its a bad sign. Are we in denial? She's terrified of the side effects of chemo but is willing to try it, and I don't want her to put herself through that pain if the doctors don't feel good about it. If there's a better thread to ask about this, please direct me!
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Chipotleaddict, I always believe in something to hope for, so this is difficult for me to write. While I hope more consultations provide additional options, I also understand that radiation generally has the best success with brain mets and since that did not stop new spots from developing, I get why the doctors are so concerned. I can’t imagine that chemo is going to help enough in the brain to get your mom to a stable place but I really hope I’m wrong. I wish I had more encouraging things to say but I’m at a loss with this scenario, I’m sorry. It feels kind of wrong to not be helpful but wrong to not respond at all too.
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Chipotle,
Is your Oncologist telling you scary stories about chemo? I hope not. Not all chemos are the same. Some are very strong, some very mild. The harsh ones are usually given to Stage III people who are treated the most aggressively. On the other hand, Eribulin, for example, is well tolerated by most. I had no side effects at all on Eribulin. Some are delivered in targeted ways such as Trodelvy or Enhertu so they are even less toxic. Some are oral like Xeloda. The old-school super toxic chemos are generally not given to Stage IV patients. Since your Mom is ER+, she can also take estrogen-suppressive drugs instead of chemo. I also don't understand the thing about how you "missed the safe window for chemo".
I'm not understanding the "new lesions even if they appeared before WBR". If they were there before WBR, then they aren't new. The distinction is very important.
Your Mom is relatively young and healthy. There is no reason to give up at this point. She is only beginning treatment. There are so many options at this point. When I was first diagnosed Stage IV, I had mets everywhere, my eye, brain, lung, bone, breast, lymph nodes. Almost eight years later, I'm still alive. Find another doctor who is going to do their best for your Mom.
PM me if you want to talk more. I'm happy to get on the phone with you if that will help.
Hugs, Susan
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I am fully on board with what Susan says as she has also had WBR and your Mom is currently still healthy. I also agree with chemo for Stage IV not as strong as with earlier stage cancers. There are many drugs that do cross to the brain as well. They can also do a cross arm approach of radiation and drugs. Chemo may also still pass through as the brain does allow drugs through for a while after a while. Abemaciclib, ribociclib, and palbociclib are the three CDK 4/6 inhibitors currently available. These drugs have shown high efficacy in the management of ER positive metastatic breast cancer [59] and recently there has been an interest in exploring their potential role in patients with ER positive BCBM well. Do not let that doctor make you think it is not possible to try to treat. Get that opinion so her window of time does not close. I also think talking to Susan would be a good idea. Source of the drugs listed is in the below link. I know there are others that I do not know about too.
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Chipotle, I remember your mom's story from the other thread, and after seeing your updates here I'm wondering...have the doctors you've seen speak the same language as your mom? Are they men or women? I'm wondering if there is some combination of racism and sexism going on here. Sadly, is it common and well-documented that people of color and women have worse outcomes, especially with male doctors. It is very strange to hear them basically throwing up their hands and saying there's nothing they can do for a relatively healthy woman who wants to try available treatments!
Maybe it would help to find a female doctor who can speak directly to your mother to give a third opinion?0 -
I am adding a few extra things to my diet. I have reintroduced eggs will be adding different things to the eggs such as black beans and spinach, bran and whatever seasoning. This morning I scrambled 3 eggs in a mug, added a handful of beans, beefless ground, sprinkle of bran for fiber and taco seasoning. Put a dollop of sour cream in too and cooked it, stirring frequently. They came out well and were really good. I felt full too. After that I did an hour of walking. Took a couple 30 min sit/stretch breaks. I also am free to go grab water as needed which is nice. Outdoors, I plan to likely just stick to shorter walks as those will be safer. I am building strength in my legs and have decided to make myself get up from the floor at least once a day. I can do it with a stepbench that is not super high so that is progress. Keeps me able to get up if I fall.
I did my day differently today and decided things when it comes to exercise. I am starting a bodyweight strength training along with my own equipment, dumbells and the like. I am also handling my meals differently as well since white bread has entered my diet, any meal involving white bread, toast or english muffin must have an hour long walk. Done with marching steps since that is typically how I walk outside to avoid tripping. The amount I walk will depend on the types of carbs. Beans are not a high index so I could probably get away with 20 mins. I am also planning to sell my treadmill as well. Since I am pretty well marching, it does not work for me. Once spring rolls around, I will be bussing to a nearby mall and doing some mall walking, if I go to the grocery store which seems to be Walmart at the moment other than shopping with DB, I can walk the aisles and get some extra length in my stride. I feel safest doing indoor walking. I plan to also take the walking poles both to the park as well as the mall to build endurance and speed. I don't use the treadmill and my place is tiny, it would give some well needed space.
In short, hoping this will help me recover muscle, tighten up and keep me safe while minimizing the distance I walk outdoors. I really only need to be able to walk for half an hour at a time and be able to lift my legs.
Sorry for the verbal diarrhea. Cross posted to other threads I am on as well.
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hello again, I have some updates about my mom and wanted to share/get input:
We finally were able to get a second opinion from someone at UCLA, and he confirmed some of the doubts I had about our current oncologist. He says that because my mom has suspected lepto disease in her spinal fluid, we should get started with intrathecal chemo right away (more urgent than the brain mets), but only if we want to be aggressive with treatment. It could only extend her prognosis by a few weeks, so if we wanted to preserve quality of life we should also consider hospice. Our current oncologist isn’t willing to try intrathecal chemo because her lumbar puncture results have been inconclusive so far (something is suspicious but it’s not confirmed cancerous cells), even though MRI scans and results point to there being lepto.
Additionally, my mom’s type was ER+ PR- and HER2-, but only around 5% positive for ER. This new oncologist says these days that would be considered negative, and her type now would be considered triple negative; this is good since there are more treatments we can try but also bad since the Ibrance and letrozole combo she’s been on has been doing nothing for her.
If anyone has any insight about treating lepto or triple negative, we would be extremely grateful!
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I have no advice but I'm so glad to hear you've found a better oncologist!
There's a forum here for triple negative folks that might be helpful if you haven't seen it yet: Breast Cancer Forum: Triple-Negative Breast Cancer
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Chipotleaddict, for triple negative, I’ve heard that some immunotherapies are beneficial but I don’t know if they cross the blood brain barrier or can be given by port (Ommaya is a type of port in the head). For lepto, WBR is usually the first option but since your mom had that recently, an intrathecal option may be available, unfortunately it can be difficult on the patient depending on their general condition. I’m sorry that my knowledge is limited on this situation, I hope you get some good info from others.
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Chipotle,
Glad you were able to get a second opinion.
There's a thread about LM: https://community.breastcancer.org/forum/8/topics/880843?page=1
Hasn't been active lately but if you post on it maybe others will see it and respond. Illimae was the last to post on it. :-)
I don't have LM but I've read that intrathecal treatment has extended some people's lives by a year. In a year, maybe there will be some breakthrough treatment. Having MBC is all about staying alive long enough to have access to the next new treatment.
Hugs, Susan
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