Brain Mets Sisters
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Hi ladies! I'm new to this thread and can use your support as I am scared of all that lies ahead. Here is a quick catch up on how I got here today....
A couple weeks ago my urine was getting darker and I started to just feel blah. Thought maybe a gallstone or something. By Sunday I was starting to look jaundice and went to the ER. All tests finally pointed to a tumor on my pancreas that was blocking biliary duct. My husband and I couldn't believe it was cancer. Had surgery next day to get biopsy of tumor and stent the duct. Couldn't get stent in so gave me an external biliary drain, but final pathology showed BC Mets to pancreas which is so unexpected and rare (3%). Ran tons of test in hospital. Scans and tests showed no lesions in lungs or liver, but confirmed a small spot on spine and in hip. Then they did brain MRI expecting nothing, but instead 7 lesions throughout.
Went back into hospital last week to have external drain removed and implant stent. While in hospital they did a PET scan, which showed liver uptaking glucose, but not as lesions. Said could be from inflammation, so had liver biopsy and lumbar puncture to test spinal fluid for disease. I should get those results tomorrow, and was wondering from you sisters with brain mets, did it also present in your spinal fluid? It is my understanding that the prognosis changes significantly if in my spinal fluid. Docs say they don't expect it to be, but we have become numb to such as the worst case continues to find us.
I had my WBR simulation done last week, and going back tomorrow to have them also simulate for radiating tumor on pancreas 5x. I will be starting xeloda after pancreas rads complete.
I have thoroughly enjoyed reading previous posts filled with your strength and courage, and they have uplifted me so much. I would love any thoughts or feedback as I prepare for WBR and await my results on the spinal.
Thank you kindly! Gina
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Gina- I am new this site too. Got up one morning and everything spinning. Was vomiting too. Then I had double vision. Went to the Er and had ct scan and they said it was negative. Saw mo who sent me for a brain mri. Showed cancer in the fluid surrounding my brain. Did a spinal tap and found it there too. Will continue in a b
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Sorry you are both here, DianaRose and Mama Felice. I’m also new to brain mets so don’t have much advice, just commiseration. I have not had my spinal fluid checked, but I also don’t really have symptoms. I believe it is very possible to have cancer in the brain but not the fluid. I have my first WBR late this afternoon.
Good luck to you both!
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Mamafelice, I had my 2nd batch (5 lesions) of Brain mets in April, one of which appeared to be in the fluid or on the edge of the tissue. My spinal tap was negative, so I proceeded with gamma knife SRS again. I did ask about the mets in the fluid called leptomeningial disease or lepto mets and found that some have been treated for years with it. Of course, I’d prefer none of us have cancer but new medical treatments are providing more hope, should I face lepto mets eventually.
Haven’t had WBR, some tolerated it well, some have issues, usually resolved within a few months.
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MamaFelice, I’m hoping everything goes smoothly and negative results for the your other tests. I have menigeal mets (had one solid tumor in my meninges that was removed) and we monitor it closely. The tricky thing about LM or meningeal mets is that it doesn’t have to present as a solid tumor, but just because you have brain mets doesn’t mean it’s in the fluid or tissue around the brain. It’s all very scary either way and I’m sorry you find yourself here. I’d give you a big soft hug if I could. It sounds like you have doctors who are on top of things and not taking any chances. Many ladies have done well with treatment. Also, once you finish radiation you should get to keep your mask (did they fit you for a mask?) so score for next Halloween! I don’t have any lasting SE’s from the tumor or radiation (SRS). Only have a vision issue from some ‘swelling’ that appeared after starting an Immunotherapy trial.
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Henrietta,
How did it go today? The first day was tough for me because I was so anxious but once I realized how painless and quick it was, I was able to relax completely. Thought of the machine moving around me as the healing light, which is technically what it is.
I found that I was fine through treatment but about a month later I was very fatigued. I have heard that is often the case. Though I felt good, I lost my appetite and lost a lot of weight. I was not on any steroids. If you don't have any symptoms, you don't have to take steroids. It would have helped with the fatigue and weight loss, but I didn't want the withdrawal and other side effects of steroids.
Hugs, Susan
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Hi Susan,
Thanks for asking, I was also pretty anxious ahead of time, but once I got going it was so fast and easy. I also thought of the radiation zapping my cancer. I have a little swelling, and the RO expects the radiation to cause more so hence the steroids. Maybe that’s why I’m awake at 4:45?
Any way, so far so good. Now I just have parinoa about if my head is really itchy already or not.0 -
I know this is a million dollar kind of question and I should be diligent and go back to reading through the whole thread...I am sorry if this has been discussed a bunch already.
My wife has been experiencing weird headaches for the past few days (weird because they are affecting the back of her neck all the way to her forehead) and she has been complaining about a blind spot in her left eye for quite some time. Her constant migraines led her onc to schedule a brain MRI with contrast back in August. That came back completely clear.
How did brain mets manifest as far as symptoms go for y'all? Am I naive in deceiving myself into thinking this might not be cancer related? My vision might be clouded by her low grade and oligo status or denial, that is.
Thanks for whatever answer or insight you can provide.
Daniel
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Sorry to break shitty news but I just saw on FB that Becs passed away today. We were both dxed with brain mets around the same time and had very similar symptoms.
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Dang it, that happened so soon 😢
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Heartbreaking news but thanks for letting us know.
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Another one lost. Hugs and peace sister.
Daniel, mine presented as a constant headache. One day I got a migraine that made me sick to my stomach and never went away. Each day the pain lessened until I thought I was making it up. Have you asked if eye mets can be seen on MRI? What about menigeal mets where they test the spinal fluid? I’m not sure if that kind of met would cause head pain or not. Instead of naive I’d steal a line from the medical world and say cautiously optimistic which isn’t bad as long and it doesn’t blind you where facts are concerned. Hope this turns out to just be a scare and she is able to resolve the head pains.0 -
Bad_At_Username,
So sorry to hear... my wife was DX'd at Stage 4 with brain mets in Mar 2016. We're trying Keytruda+Herceptin and only had the initial dose (elsewhere I hear it may take 5 doses before seeing results). She's in the hospital for a week now with probably a dozen drips and artificial nutrition along with high flow O2. Insurance approved her to move to Long Term Care Hospital but she's in no condition to get moved and just got MRSA... Needless to say, she's probably not going to be able to get her 2nd dose... at least not in the next week or two... sigh...
I guess for those with brain mets, make sure that after 1 year on Herceptin that you start considering that the cancer may be resistant to herceptin and start looking at treatments for that... several new treatments focusing on PD-L1... Here's a link to NIH talking about treatment options... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3471537/ and here's one talking about BCL-2... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3233239/
BTW, I see you had two radiotherapy... are those whole brain?
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So sad about Becs. I remember when I first started reading this thread, I started at the beginning. I was so touched by the relationships these women had with each other. After reading more, I realized that almost all of them were already dead. K-Lo, who created this thread, was still alive when I first started posting.
Daniel86, I had a blind spot in my right eye, went to an Opthamologist and he was shocked when saw that I had an eye tumor. "Must be metastatic cancer", he said. "No one just gets an eye tumor". That's how I discovered that I was metastatic. Might not be the case for your wife but she should see an Opthamologist. I see an Ocular Oncologist and they have all of this sophisticated equipment but my original Opthamologist saw it with just one of those small old-fashioned lenses they put over their eye to look into your dilated eye.
hhfp, So sorry to hear that your wife has MRSA on top of everything else. I think most of us are scanned every 2-3 months. Any progression means a new treatment. Appreciate that in the middle of all of that you are going through, you are sending us information about new treatments.
Hugs, Susan
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It saddens to me to read about Becs. She was one of the ones that gave me so much hope when I was first diagnosed nearly 4 years ago. May she find rest and peace now.
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We are deeply saddened by the loss of Becs and recognize just how painful this is to many of you. We are sending everyone gentle hugs.
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Thank you Susan for chiming in about ocular mets. Did they treat you locally with radiation or topical drugs (I can't remember what they are called but they get activated in your eye with certain kinds of light) or did they go with a more systemic route using chemo?
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left foot u am looking to get into that trial as well. I appreciate any info posted
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Hi ladies! Thank you for welcoming me to your group, and I am sorry for your pink sister loss. It is a blessing we all have each other to support through this.
Well, by God’s grace, my spinal fluid was normal, but my liver was malignant. Liver samples have been sent to Foundation One, and I jumped right from biliary stent surgery #2 right to WBR and rads to the tumor on my pancreas.
Had my first 3 treatments and I’m struggling immensely with constipation from all the surgery drugs, narcotics, zofran, lack of fluids and movement, etc— haven’t passed in a week— and I’m so uncomfortable. I’ve tried miralax, prune juice, stool softeners, milk of magnesia, sentacot, enemas twice, and I just guzzled a bottle of magnesium citrate as per instruction from my nurse navigator. Any other secrets out there? I was hoping to enjoy the weekend without treatments and Christmas only days away. Please share your best 💩 remedies!
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mommafelice- this might sound weird but have you tried caffeine? I avoid it all the time now but occasionally I drink a caffeinated beverage and it loosens me up.
Sorry- I can totally relate to being clogged. It’s the worst.
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Have any of you been dx with “coursing vascular tumor" in your ear and it not be Mets? Does this sound like Mets? I'm dizzy, I get motion sickness with just moving. Headaches always. Vision getting worse. Memory getting worse. Confused. Brain fog. Can't find words sometimes. Just don't feel good in general. I stay sleepy. I don't have an appetite. Had brain/head mri and they said “coursing vascular tumor" in ear?? Anyone?
So my onco is sending me to ENT
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Sorry TN, I answered on the other post before seeing this one. Possible CNS issues, did anyone discuss further testing?
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Thank you left foot forward for empathizing with my predicament. The magnesium citrate reversed my fortune and gave me a day of running to the loo, but I am glad to be beyond the C, and just need to manage things better through treatments from here.
Def no fun dealing with all of this at Christmas. My children are 17 & 14, and they have surprised me with their immense support as I have been in hospital or bed for all of December — though I don’t know where the time has gone.
I was hoping for things this holiday to be extra special since las,t year I was taking chemo, but now finding I have to stay focused on getting through my rads. It has all happened like a giant whirlwind. I take it this is how it happens..... one day just fine and the next the body has fallen victim to cancer’s outreach. I am a positive ans strong woman of faith, and certainly leaning on God’s courage and love at this time, but it sure isn’t all scary. How have so many of you managed all these emotions, along with the physical effects. I’m amazed by your positivity and so thankful for it here!
As for the WBR—3 down, 7 to go. They make me tired. The abdominal rads causing me a bit more grief as you can see. Thank you again for the support!
Gina💕
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TNMNTGAL, That sounds like a pretty uncommon type and location, however, if radiation is an option, I’d think it would relieve many of your symptoms. When will you have more info and a plan moving forward?
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illimae...thank you for your quick response. They said it would be after the Christmas holiday before they could get me in for a biopsy I guess. With something like that where it is..,I don't understand why they just don't go ahead and take it out. Are you saying that is an uncommon place for mets? Thank you for any information!
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TN, yes mets in the ear area is something I haven’t seen around here but I’m sure you’ll feel better once a plan is in place.
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illimae...thank you for the info! =
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scan day. Hoping I don’t have a huge number of new spots and that previously treated are gone or not growing. Also hoping the new ones from last scan have not grown s ton.
Really wanting to find something that controls the tumors in my brain and stood them from popping up.
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in your pocket left foot forward
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best wishes leftfootforward!
I’ve got my 9th out of 10 treatment today. Then just waiting for my scans at the end of February.
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