Brain Mets Sisters
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Nisa-
I would put in small to let them know what is going on. Lots of things can cause vertigo so hopefully the mess will work. Your onc can review the scan they took of you.
Hope you feel better soon
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Nisa - They used no contrast and for a cancer patient were merely looking to rule out a stroke?
Having been a misdiagnosed person with a huge brain tumor you need to probably get another scan done. it seems like the brain MRI was not definitive for someone who has had cancer and you should probably press them to rule it out.
I was shocked when I learned that my issues were not occipital neuralgia, a painful and debilitating condition of cranial nerves. What was worse though was realizing that I had seen both my RO and MO and told them both I was having pain in my neck and shoulder and I didn't know why and having them blow it off. Never was it suggested to me that with a PCR to neoadjuvant chemo that cancer cells might have escaped into the central nervous system and been untreated. How they could possibly excuse themselves for overlooking that possibility, and never suggesting it to me still disgusts me. I was very active in my care and saw muktiple doctors and still they almost killed me. The gals in my chemo group were in horror to see that in spite of trying to be on top of it that the medical establishment can seem to blow off the risks of progression in breast cancer patients. Another gal in my group passed away earlier this year and it took 6-7 weeks before they gave her a scan, she died a couple weeks later with acute ascites from liver mets - we still don't understand how she didn't get prompt care as a cancer patient (she was stage 1 a year before and we suspect she she was misdiagnosed from the start or chemo was very wrong for what was going on in her).
I think anyone lurking on this thread or not who is concerned about the risk of brain mets should be aware that the threshold for brain MRI is supposed to be lower for us -and- that it is acceptable to lie and get the scan done if that is what you feel you need. Definitely don't downplay your symptoms at any rate but if you need to embellish the truth feel free because standard of care is dictated by insurance companies and sometimes tests are held back for financial reasons not because it makes for better patient care. Not everyone needs a brain MRI but if you are worried about head and neck pain or associated hearing, vision, balance, or cognitive issues beyond mere chemo brain then say what you need to.
I do hope that your vertigo goes away and that it isn't brain mets Nisa but we are here for you either way
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Malcols,
Sorry to reply so late to your questions on 10/15. I've been super busy and haven't had time to check in.
First of all, that MD Anderson article doesn't apply to us. The study was done on patients with one to three brain tumors. It makes complete sense to me that those with so few mets should go with gamma knife or other targeted radiation treatments. However, for those of us with multiple brain mets, I had 12+, WBR is our best option. My RO also said, they could count 12+ tumors but there are also likely smaller ones that they can't see. By having WBR, I'd be able to start with a clean slate. Then they would use gamma knife if spots came back. So far, 1.5 years later, my brain is clear.
I have been doing on-line brain tests from before I started WBR and still keep them up so that I will be aware of any deterioration. I have had absolutely no loss of my higher-level cognitive skills. In fact, my son took the SAT recently. I'm happy to say he did well and got an 800 on verbal reasoning. He got only 3 questions wrong. My husband and I did the questions he missed. I got all three right and my husband got all three wrong. My husband has a Ph.D from Stanford so he's no intellectual slouch. I teased him that, even with brain radiation, I could beat him! :-)
My short-term memory is more challenging but it hasn't been good for a long time, well before I had brain mets. Thank goodness for smart phones! By using the calendar and notepad apps, I try to minimize my reliance on short-term memory. Small sacrifice for a tumor-free brain!
Don't know if it's helped but I've been taking Namenda since I started WBR. The study, using Nameda while undergoing WBR, was only over a six month period but I told my RO I wanted to stay on it indefinitely.
BTW, I just finished a fantastic book called "Dying to Be Me" by Anita Moorjani. It's a true story about a woman who was within hours of death and in a coma with widespread Lymphoma and organ failure who came back and was remarkable cancer free in a matter of weeks. Her experience is so completely in line with my beliefs. It's also a quick, easy read.
Hugs, Susan
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Starting WBR tomorrow afternoon for 15 treatments (weekends off of course). Ready to get moving on this yet a little nervous as well. I have been totally without symptoms and am wondering what I may expect to experience over the next few weeks...do side effects show up quickly or more over time? I understand there will be increasing fatigue. What are the othe rmost common effects you have experienced? RO says no problem with me driving if I feel up to it (someone will go with me the first few days just in case) to and from treatments. I am on a steroid since the mets were found (2 weeks ago) to prevent swelling.
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good luck tomorrow. I will be thinking of you. Fatigue is number one and hit after I finished tx. About two weeks later. Other Se I have but tolerable: dry mouth, wobbly legs, on and off headache. I just take my time doing things and drink water or hard candy. None of the Se I've experienced to date are show stoppers.
Love
Maureen
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Bourscheid,
Let us know how it goes. For me, the first one was the hardest, I was worried about moving and felt claustrophobic with the mask on. From then on, I tried to think of the radiation as "the healing light" which is really what it is. That helped me to relax. I tried to think of the radiation cleaning out all of my tumors as it moved around my head.
I was able to drive the whole time, but I really slowed down my driving and tried to be less aggressive. Traded in my stick Porsche for an automatic soccer Mom car. :-( I only went on steroids for a couple of days but it didn't seem to do anything so I asked to get off and they let me. My RO said, if I didn't have any SEs I didn't need to take them.
If you look back in the thread I posted some foods and a tea that my Chinese medicine doctor prescribed to me that I believe really helped.
Wishing you the best!
Hugs, Susan
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Thank you for sharing your experience. I love the "healing light" ! I will visualize that for sure and will look for the foods/tea llst, too. glad to know I can have a few more days before the fatigue sets in and will definitely take my time doing things and thinking things through. Lists will become my friend even more!
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Apart from fatigue, hair loss was my main side effect. Wished I had shaved it off at the outset as they wouldn't let me shave once WBR started. Hope all goes well for you.
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From SRS I lost hair in the treated area. It was around two weeks after the first dose. It makes your scalp hurt terribly before the hair falls out and it can last a while until the shedding is done and a little after. Not one bit of fun in that, pretty lousy experience.
Good luck with WBR, do we have two people here now being treated with it?
My naturopathic onc, who did part of his residency in radiation oncology, he was firm that he wanted me off iron and CoQ10 supplementation during brain rads and on either ProOmega or DHA supplements which are supposed to be protective of healthy cells and increase stress on brain cancer. The DHA gel caps tasted of strawberry and didn't give me awful fish burps which is why I took those, I was also doing a water-based fasting and calorie-restricted, ketogenic diet during treatment so fish burps would have been awful.
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You shouldn't shave your head with a razor but my hairdresser used electric shears and cut my hair as short as possible. Probably 1/8 of an inch or so. It took awhile but it looked so much better than the patchy stuff. I felt empowered afterwards.
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Susan
Thank you for your insight. Coincidentally, I am also HER negative and my name is also Susan. Right now the Xeloda seems to be working, however my eye met is 12 X 16 mm. So I may have to do something soon. Also thanks for the tip on the book - I will definitely check it out.
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Update
Surgery was performed yesterday. All of the tumour was removed. There was a cyst in the middle which was drained. The tumour was around the edge of the previous one, so cells were probably left after the previous resection. Last time they only did a CT after resection. This time they did a MRI with Contrast. That confirmed complete excision.
Plan now is to get the Gamma knife boost ASAP. They said within 4 weeks. I want two weeks. Surgeon has already been hassling people about it, even though it isn't he's remit which is good. Usually I make such a pain of myself that things get done. Tomorrow I will be on the phone for an update.
Hopefully we are back to where we were 9 weeks ago.
Thanks for everyones positive messages.
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All went well. In and out in 10 minutes. Felt nothing and drove home just to prove to hubby I could. I am already bald from Ixempra so hair loss won't be an issue.
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Glad you got through the first day without any trouble, Lori. Hoping it continues to go smoothly for you!
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great news Lori
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Lots of good reports today. I'm glad everyone is tolerating treatment well.
I had a neuro-onc consult today about my weird MRI last week. They still aren't sure what it is: either atypical early leptomeningeal spread or atypical inflammation post-rads. If it's LM it is very serious but if it's not I might be healing and turn out fine. Since it isn't bad news I will take it as favorable news. The fact that I'm not nauseous, sleepy, staggering, having numbness in my extremities, no sensorial disturbances with sight or hearing, or having a stiff neck all points away from LM.
I had a lumbar puncture today (#3) and the initial lab is all normal ranges for protein, glucose, RBC and WBC. The cytology is due back later this week.
How about them apples?
Here's a useful article about symptoms, disease presentation patterns, and some standard treatment approaches for brain mets. I found the part about leptomeningeal disease fairly helpful.
Neurologic Complications of Systemic Cancer
http://www.aafp.org/afp/1999/0215/p878.html
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Susan, Forgot to add that they were able to radiate my eye at the same time as the WBR. My eye had some complications. Fluid built up under the tumor and caused my retina to detach. It took about a year for the eye tumor to completely disappear and the fluid build up didn't dissipate until the tumor was gone so my retina was detached for about a year. This caused permanent damage to my retina. Not a huge deal but my vision in that eye is distorted. My Ocular Oncologist tried a few things like injecting chemo directly into my eye (did nothing and made my eyeball swell up like a big red golf ball) and zapping some of the vessels attached to the tumor with a laser (maybe helped a little).
Lori, So happy to hear that your first treatment went well! Go easy on yourself. Take naps when you want. You may notice that your taste buds become dulled during treatment (not a permanent thing). Food didn't taste so good and I lost 30 pounds (actually a positive since I was 30 pounds overweight). Kept my nutrient intake up by drinking a lot of Magic Mineral Broth (Rebecca Katz's recipe).
Hugs, Susan
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I couldn't see how to add text after uploading an image. The shading in the lower left, next to the tumor bed, is new. My lumbar puncture came back normal. They are going to repeat the MRI in a month
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good news on the lumbar puncture. If I understand correctly, they will rescan to evaluate the change, if any, to that area in a month?
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agness, your LP is clear, that is wonderful news, I am so relieved. Do we have a better idea of what that is?
I had an LM threat last year due to double vision, 8 days waiting for the LP. I know how especially terrifying this has been for you and I am so happy you made it through.
I also want to thank you for the insightful answers about IT Herceptin. I need to pursue all my options. I have an appointment with the BC specialists next week and I am trying to see Germany's BC brain met guru as well. I refuse to take this without a fight.
Freakzilla, I am so happy to know the operation went well and that they got everything. How is she feeling? Please give her our love.
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Good morning. Yes, the plan is to do another brain MRI month later and if the area has stabilized or not grown then that is good news. My lumbar puncture came back normal, but with elevated lymphocytes consistent with swelling which my neuro-onc says is consistent with their current thinking, particularly since I have no neurological symptoms.
About Lumber Punctures and Leptomeningeal Disease
Hen you have a lumber puncture it is done by an interventional radiologist using a type of x-ray to help guide access. I've had to lay on my belly and they clean my back off with betadine. The IR first does local anesthesia and then goes in to get the sample. I've had two vials drawn each time which I think is pretty common for looking for CTCs, I think meningitis patients get less (because of their type of sickness it is easier to diagnose), but I know someone who had four vials taken when she was having acute symptoms and they were concerned -- hers also came back negative.
For those that don't already know, there are two parts to the results for cerebrospinal fluid analysis from a lumber puncture. The first part is looking at protein and glucose levels to see if there is evidence of brain metabolism changes consistent with LM. They review color and characteristics of the fluid, and lastly they do a cell count. The second part is the cytology where they study the cells in the fluid, looking for circulating tumor cells that are indicative of cancer having spread into the leptomeningeal space.
LM isn't a good diagnosis as it means that cancer is disrupting metabolism and function of the brain and it's everywhere. It isn't something that can be irradiated to beat back as the area is not confined. Chemo drugs can help beat back the disease if they work, sometimes for quite lengthy periods. Usually LM happens later in the course of disease and I've read the prognosis is typically 3-6 months. LM most commonly presents with pretty severe symptoms of nervous system disruption, though in autopsies it has shown up more than was diagnosed.
HTH0 -
If I don't have LM, and I don't have any symptoms indicative of such advanced disease, then it is probably atypical swelling caused by radiation.
I found this article, not about brain mets but about SRS caused injury to adjacent areas in primary brain tumors. It can show up soon after or later and it can sometimes take years to heal.
Radiation-induced changes in the brain following stereotactic irradiation evaluated by sequential MRI
http://www.sciencedirect.com/science/article/pii/S...
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The changes to my tumor bed came almost 2 years after my Gamma knife procedure. I was happy it was only scar tissue but it taught me that things can change even years later.
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agness, how are you feeling? Symptoms? Are you on dex or other meds for this?
Your CSF protein/glucose/etc were within normal -- YAAY!!! So we can be confident in clean cytology -- otherwise they would poke you again, and they didn't. That's a good thing! And as you said, lymphocytes point AWAY from LM. I know you know all this already, but these are solidly positive signals. Focus on that. Rad-induced inflammation definitely sucks but it's still your escape from LM. I am glad you made it this far and I'm rooting for you all the way.
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I'm feeling okay. I have a little headache but I think it is from my lumbar puncture. I'm not on any drugs (no dexamethasone, only for twelve days from diagnosis until I weaned down 8 days post surgery), though I did take a Tylenol this morning. I'm just on my regular Chinese herbs and targeted nutritional supplements, plus Boswellia Serreta.
You have no idea what a relief it is to have you guys telling me that you aren't seeing LM either. I think only one outside neuro-onc, not told of any facts about my treatment, when asked to review my imaging said that it looked like new tumor. My neuro-onc and neurosurgeon both have a strong hunch that it isn't progression either.
I'm going to shift back to a brain-healing regime with daily afternoon naps, increased omega-3s, regular exercise and qigong, bone broths, continued extra zinc to push out extra copper in my system (under guidance of my naturopathic onc), and CoQ10 supplementation. Hopefully in a month my brain is feeling a lot better.0 -
Good news about the CSF agness! May we all have quick healing! So far so good! Not too tired but the dexamethasone affected my blood thinners like crazy so have to adjust those. Not a big deal, just have to keep on top of it. #4 today!
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great news all aroun
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Susan - Thanks for the note as it is the eye that is the biggest cause of concern for me right now. I was told by the MGH specialist, the chemo wouldn't get rid of it entirely, though I did read there is a 30 percent chance in a ASCO clinical trail report.
I am not sure if WBR will get rid of my eye metastasis. I suppose I have to re-visit my Georgetown radiation oncologist. It sounds like WBR did work for your eye though with complications. You've been through a lot, but still have a great attitude.
I do know that the radiation oncologist is worried that if they do stereotactic now, that WBR later on may cause me to go blind in that eye.
My sister got cataracts in her eyes from the radiation to her brain. So this may be a source of eye blurriness for you as well.
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Update
It was decided today that either Linac or Tomotherapy will be used to boost the resection cavity.
Planning will be done on Thursday and treatment will start within a week of that.
They feel the area is too big for a Gamma Knife boost, but the end result. is the same Instead of one session it will be 15.
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