Brain Mets Sisters
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celebrated my birthday today. Tomorrow is my 1 year anniversary of my craniotomy. So thankful to be here to celebrate another birthday.
May we all see many more birthdays
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Happy Birthday!! Hope you did something amazing to celebrate. Each birthday seems so precious, doesn't it?
Most of my friends and I are turning 35 this year and one was complaining that she felt sooooold. I just looked at her at said "would you still feel old if somebody told you that you might not make it to 36? Would you feel satisfied knowing you led a long, full life?" That shut her up real fast!!!
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Congrats gcirian! And Happy Birthday leftfootforward!
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Thanks for the good thoughts everyone.
I should get my results from the scans today. I'm still nervous about developing something below the head. Brain mets are overwhelming, but brain-only mets are less overwhelming (at least for a mets newbie) than multiple sites.
Speaking of that, before my scans I went to a talk with a radiologist at my cancer center. Despite being a radiologist and a Stage IV throat cancer survivor himself, he was surprised that some patients have brain mets as the first/only site of metastasis. It just shows how much education has to be done and how much we could potentially affect policy regarding things like screening. Actually if anyone had some good articles on this I'd love to send them to him - he was certainly receptive.
In other news, Aberciclib is giving me bad nausea. On the bright side, at least it's a way to lose to Dex weight. And I met a woman yesterday who had multiple sites of mets including brain, and she's been doing really well on the trial. Even had her scans pushed from six to 12 weeks. So if it's working, I will pop Zofran and jeep on trucking.
Happy birthday left!
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From what I have read both TNBC and HER2+ breast cancer patients with nodal disease (stage 3) are at an increased risk of the brain as the first site of mets for two years after diagnosis. With the success of systemic, targeted therapies against HER2 it is going to be more prevalent to have systemic disease eradication with CNS as the sole site of mets. People died from systemic disease before so this actually represents an advancement in disease management.
Here's one recent article:
Risk factors for brain metastasis as a first site of disease recurrence in patients with HER2 positive early stage breast cancer treated with adjuvant trastuzumab.
http://www.ncbi.nlm.nih.gov/m/pubmed/26801412/
(2015)
It is possible that taxanes and Herceptin can increase the risk of brain mets, perhaps by increasing some of the conditions that allow the seeding of CTCs. See:
Incidence and risk of central nervous system metastases as site of first recurrence in patients with HER2-positive breast cancer treated with adjuvant trastuzumab.
http://www.ncbi.nlm.nih.gov/m/pubmed/23463626/
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Hi, very nice to meet you all in this forum, my name is Janice and I was diagnosed with breast cancer triple positive DCIS in 2011, treated with chemo and had left breast mastectomy, after two years i was on remission, but then they found that i had brain metastases, i'm looking for people with Breast cancer Brain Mets ONLY who are taking any supplement, drug, or some kind of therapy that can also help me . I have been with the best doctors, still don't know whats the best next step . So i also want to take control of my disease and find some support here and also share what it helped and helps me.
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Hi Omri,
While I'm sorry you find yourself here, welcome! I was also recently diagnosed with brain mets and this group has been a huge provider of support, advice, and understanding.
While I cannot relate to being brain mets only, I know there are a few other members here that can What kind of treatments (surgery, radiation?) did your doctors suggest? That might be a good jumping off point.
I also saw in a different thread that you were reaching out on behalf of a friend, but in this post, you clearly say that you were the one diagnosed. Could you confirm if you are the patient or the patient's advocate? It might help others to know exactly who they are talking to.
Wishing you (or your friend) all the best as you go down this road with us.
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I'm sorry about the confusion, I am actually here for my wife, her name is Janice, i opened the account for here and we ware confused at the begining what information we want to share. I'm sorry about the confusion.
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Hi Omri, I'm a brain mets only. I was diagnosed as Stage 1A ER/PR+, HER2-. I had a mastectomy and have only been on hormonals. I also had a craniotomy to remove the met, after it caused a seizure, and then had GammaKnife radiation to the tumor bed. I had been taking Tamoxifen only, but side effects were too bad for me. I've now started on the Lupron shot to put me into menopause and my onc will introduce an AI once my levels indicate I'm in menopause. I'm currently NED. My next brain scan is at the end of March.
As far as supplements, I take Boswellia to help reduce any inflammation in my brain (or anywhere else in the body), Magnesium/Iron/Calcium combo, Co-qu 10, and Fish Oil.Please feel free to ask any questions for your wife. This board is a great resource!
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Hi, I need some advice. I was dx in May of 2015 stage iv triple positive. I finished THP in Jan and have been on HP and Tamoxifen. I have had head pressure (on top of my head...like pushing down), tingling in both temples and forehead as well as ringing in my head for some time. I had it May, it when first diagnosed but my MO seemed to think it was stress and not brain mets as I have had it for awhile. It went away for a few months while on THP but has been back the past week. I feel good otherwise. Oh, my mets are pelvis. I've had a bone scan and CT of pelvis. That's it. Wondering what you think. Any advice is appreciated. I get chemo Wed. Don't see my oncologist until April. Thanks so much for your wisdom. Dana
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Dana, I'd call and ask for a Brain MRI. There's nothing wrong with getting one to rule out mets to the brain. Don't be afraid to advocate for yourself!
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I think so too. Thanks.
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Agreed. Never stop being your own advocate. You know your body better than anybody else. If something doesn't feel right to you, push for whatever tests you think you might need.
If it turns out to be something, it's better to deal with it head on (pun intended) and if it is nothing, you'll have piece of mind.
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Hello, I have been stage 4 for 3 years now. First in my bones and now in my liver. Lately I have been noticing some pain in my head. It is hard to explain. I get like a brief pain on the side of my head. The pain is intense and then goes away. It almost feels like an electrical shock or something. It happens on both sides of my head but not at the same time. Mostly on the right side of my head. Anyone experience this before? Just wondering if I should get my head scanned.
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Hey everyone. I saw my onc yesterday and we had the talk about how crappy this last 3 week cycle was. In the end we decided on a dose reduction, a heafty dose of dex and come in for fluids Monday. If any further rash/allergic issues, vertigo etc will switch drugs. Also had a long talk about a break depending on the results of my scans which aren't until April 5.
Most of my WBRT side effects have passed and I'm left with diarrhea queasy no appetite and fatigue. Fun times !
Have any of you stopped prophylactic chemo following WBRT?
I hope you all are doing well.
And the two posters who don't have brain mets please call your dr and ask for a scan !
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Lauralind5. I am so sorry that you are having such a hard time. I pray that things get easier for you. This battle is such a roller coaster. I know that all of us just want off of the ride and a period of time where something works and we can relax for a bit. That's my hope for you and for all of us. I am starting a new chemo pill tonight and I'm very scared. I've been on this nasty roller coaster for over 4 years now.
Asking my dr for a brain scan sounds very scary. I have been though it once before. It's not a fun scan to wait on results for. I hope I didn't upset you with my post. I was just wondering if any of you had any sensations like I explained so that I can decide if I need to worry or if I should just let it go. I sometimes feel like I don't even want to know.
I wish you the best and I hope your current treatment brings you some time off of the roller coaster for a bit.
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I would not let it go - I did not follow up visual problems for a couple of months and then needed WBRT. 18 months later I had sore points and headaches and again didn't pick them up early enough so have had more radiotherapy. If it's clear you will have peace of mind
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you're right. I think part of me is blaming the pain onstress. Starting new meds is always stressful. But if the pain is still here on Monday I will let my dr know. Thank you for the advice.
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Sonya I wasn't upset at all. It's that we can't advise or comfort you because ours was brain mets. I went for s couple of months passing off symptoms in my head. Finally after a plane flight, a horrible migraine on my vacation then scared to fly home, I called when I got back got the first available MRI and the next morning planning my craniotomy surgery for a nice big cerebellum tumor. I wish it ended there but I've now had two recurrences of brain mets.
So yes. You should call !! Good luck and let us know !4
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you two, if you think you are having symptoms that might indicate neurological involvement you have to get a brain scan. They try to save the insurance company money by not scanning the brain for occult mets but the threshold is any symptoms. Don't worry, more information is better and tackling brain mets sooner provides more options.
I had an interesting conversation with a man recovered from primary brain mets, he said brain tumor patients are notoriously bad at figuring out there is brain involvement. What's worse is that based on my observations the medical establishment is really bad at identifying brain tumor symptoms that don't cause stroke-like symptoms. My cerebellar tumor almost killed me before it was diagnosed and I saw my GP twice and was in touch with him about my symptoms, my MO and RO both blew off my description of pain and a substitute GP (my doc was on vacation) just gave me a bottle of pills -- I was vomiting and couldn't drive with killer headaches. Thank God for my breast surgeon who agreed to see me -- she saved my life.
Lauralind -- that sucks that you feel so poorly. I hope switching things out can help. Have you tried taking resistant starch to help with the gut issues?
Potential beneficial effects of butyrate in intestinal and extraintestinal diseases
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC307011...
http://chriskresser.com/how-resistant-starch-will-...
http://www.vegetablepharm.blogspot.com/p/the-potat...
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I had my spinal fluid tested this week, the first since December. The sample was removed from my Ommaya port on Wednesday.
The fluid was clear and colorless and showed no debris. There were no red or white blood cells present. The glucose was at the high end of the range at 62 mg/dL and my protein was low at 9 mg/dL. No circulating tumor cells were found. If there was active LM the sugar would be low and the protein elevated -- so no signs of disease.
I will be having a bunch of scans in the coming weeks to restage me for treatment going forward. I will have a brain MRI to evaluate the effect of radiation to the posterior fossa on the cancer observed there. I will also have a repeat spinal MRI, another PET scan and a torso CT to rule out systemic disease spread.
After making a strong scientific and medical argument for the merits of IT Topotecan in addition to IT Herceptin, based on the protocol used on my friend's wife at MD Anderson and my new docs at Seattle Cancer Care/UW Medicine understood what I was saying. Targeted therapies always work best when coupled with a cytotoxic. I am likely only going to do a course of treatment over several months. It looks like I will be put back on Kadcyla (TDM-1) for a while too. Three docs now have told me that they have seen HER2+ disease in the central nervous system escape back out into the test of the body, ugh. I will keep you posted on my test results.I'm back on weekly 100 mg IT Herceptin now which has been really well tolerated. I still have fatigue, I can feel that I'm a bit less agile though I've passed two neurological assessments in the past couple of weeks. My eyes get a little tired too and I have subtle myoclonus (muscle twitching when I lay down) throughout my body (just a bit but annoying) from the cerebellar damage as it is in a larger and bilateral presentation (Not like when it was happening at the end of December and matched my disease advancement on a scan).
Best,
Ann
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Thanks Agness/Ann, we are all learning so much from you!
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Great news for you Agness! Best of luck wit your upcoming scans.
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Well I just finished my third round of gamma knife. Tuesday I get my fourth. I have lots of baby pearls in there. Too many from one dose.
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Keep on trucking Fujimama.0
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Hi, I just wanted to let you know that I had a CT scan of my brain and he said, "Your brain looks beautiful." Thanks so much for your advice and support. I really appreciate it. XO
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You've got this Fujimama.
Great news txmom! Nothing like a clean scan to relieve anxiety and remove the what-ifs!
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Fuji hang in there !
Agnes's interesting what you say about us ignoring brain symptoms. I'm kinda in the middle of that myself.
I'm currently getting fluids. This cycle seems to be a little easier. Normally i can't get out of bed the Monday after chemo. I forced myself to come get the fluids. But I made it !
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Happy March! It is always great to see the start of a new month, especially when February was one of the worst ever...I just wanted to check in and see how everybody was doing.
I've bounced back pretty quickly from the SRS. Still tired and feeling some neurological things, but that is to be expected, especially after returning back to work pretty much right away! I re-start my chemo on Friday, which I am oddly happy about. Since I know it is working (at least from the neck down), it is kind of like my security blanket at the moment. It is a known entity that I dont want to stray from. I know it sounds weird.
Hope everybody is enjoying the day.
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Becs you are so right ! February sucked. I am feeling much better today and feeling more positive than walking around thinking I was dying soon so it's nice to have some hope. it's really warm outside too and that helps as well.
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Here is to proactive patients. Getting scans, getting treatment means we are still here and all bets aren't off. Keep up the great work.
I thought this might interest those worried about subtle symptoms. Low magnesium and potassium are other causes, as is chemo neuropathy, but basically this says there is a better than average chance that cramps mean something neurologically.
Muscle cramps in cancer patients - Steiner - 2006 - Cancer - Wiley Online Library
"Cramps, or rather complaints of cramps, were the presenting symptom of recognizable and previously unsuspected neurologic dysfunction in 64% (27 of 42) of the identified causes. Therefore, we conclude that muscle cramps in cancer patients may not be a benign complaint and that they usually mark the presence of an identifiable neurologic disorder"
http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(19890201)63:3%3C574::AID-CNCR2820630329%3E3.0.CO;2-L/abstract---
I have been feeling quite a bit better this week and have bumped up my activity level. My scans were switched to a different cancer center so no news this week but after four scans on the 10 & 11 we should have lots of results to help guide us. I HATE living scan to scan and feeling okay but waiting to get bad news. What a lot we have been handed.
Hugs to everyone
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