Brain Mets Sisters
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Hi Ladies!
Thank you for posting and sharing! I have a brain MRI scheduled for Monday, Nov. 3. So far I have had mets in the lining of my left lung, T5 and 3 left anterior ribs. Last Saturday, one day after Abraxane infusion, I had my very first episode of extreme vertigo. I could not get up, sit up let alone walk. The Friday before this I had a glass of wine and a few hours later (for the first time) 2 Ativans. I did this in the hopes of falling asleep. The Friday infused steroids guaranteed no sleep on Fridays. That night was going to be different. I was going to sleep.
I'm hoping that it was just the meds (and a little wine) that made me lose all equilibrium on Saturday. My balance is perfect now, seven days later.
Of course, I am praying for nothing in the brain in the form of mets, but I am so scared out of my wits and driving myself into a worried frenzy. Should I be? Is vertigo the number 1 symptom for brain metastasis?
Hugs,
Brenda
P.S. Hi to SusaninSF!!! Fancy seeing you here!
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Hi Brenda,
Hope you won't be joining us here! :-)
I could join the bone mets thread too now as they found a bone tumor on my hip (lower trochanter) last week. :-(
Hugs, Susan
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I had my Gamma Knife yesterday. Unfortunately the preceding MRI found 6 lesions instead of the 1 that showed on the regular MRI. They told me that they will now do the procedure with up to 10 tumors. Instead of the 10 minutes they had planned I was in there for 81 minutes. I fell asleep so hard they had to shout thru the microphone to wake me up to tell me to take deep breaths. My O2 stats were falling into the 70s. She also informed me that I snored and she had tape to prove it!!
The tumors were scattered thruout 4 different lobes. The neuro guy said more than likely there are ones in there that are too small to see. He said it is almost better when they are located in 1 lobe. I will scan again and see the rads guy on Dec29 to see how good it worked. I follow up with the neurosurgeon in 2 weeks. The only steroids I have to take is a Medrol dose pack-which I have done many times before for poison ivy so it isn't enough to give weight gain or wild mood swings. The Keppra anti-seizure is for 2 weeks-if I haven't had any problems when I see him we will stop that.
So other than being there all day and finding out it was way more widespread than they thought it went really well. We stopped and went shoe shopping and Chinese on the way home. The holes in my forehead aren't even noticeable but the ones in the back have some pretty big scabs. I guess there was way more pressure and manipulation on the back screws. I had the same nurse all day and that was really nice. She stuck to me like glue. They only do 2 people a day and you each get your own nurse. Cincinnati only has 1 gamma knife machine in the city. I was surprised by that.
The only thing I wonder about is the 81 minutes and fatigue. It is actually more radiation than I got back in the beginning over 25 25 visits. it made me tired for months-hoping that doesn't happen.
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lilylady,
Glad you made it through all that. That's wonderful that you were able to sleep through some of it! A friend of mine had radiation for an hour and was in tears by the end. Once you start getting clautrophobic thoughts it's hard to relax and get them out of your head.
Did you have WBR previously?
Hugs, Susan
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No WBR. That is what they wanted to do but I refuse to even consider it. With the list of SEs and going every day for weeks if it comes to that I will let nature take its course. I am hoping that yesterdays treatment got what they could see and that they are wrong about there being teeny ones in there. Have to wait til Dec 29 for follow up MRI.
I also need for my Ixempra to work. Cancer got a big jump over the summer so I am fighting it on both fronts. Will probably scan at about the same time. He wanted to get 3 treatments in before we check. I only have a couple of chemo options left.
Thinking hard about retiring for the first time since I was dxed. This whole brain thing is such a game changer. Maybe they are fixed and I will never get another but finding out there were 6 instead of one and they are scattered everywhere makes me think maybe it is time. I will be asking the hard questions at my next onc visit. I have been tp Social Security and have filed paperwork to access my life insurance. That would give me a proper savings for back-up. Yikes-just too much to think about
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Lily
Everyone needs to make their own choices but I wouldn't write off WBR as an option. I had it this summer. Fatigue was bad but I think I'm over it now, hair loss is a pain but really that - touch wood - seems to be the worst of it. Possibly a little hearing loss. I'm back full time at work, don't think my cognitive ability is affected - and it seems to, at least for now, have erased the lesions.
On a different note, I saw my breast surgeon today and he, perhaps trespassing into the oncologists territory, said I should have my immune system tested for natural Killer cells and how to boost the immune system. He says they are seeing interesting studies coming out of Germany. Has anyone else heard this. He also said he was going to talk to onc about adding Iscador to my treatment as an immune booster - has anyone else tried this?
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Lily,
I agree with Bosco19 about WBR. I went through it in April and the only SEs I had were fatigue, hair loss, and loss of appetite. Generally, treatments are 10 days though mine were 20 days because I also had to have my eye radiated. Each treatment only takes about 10 minutes and it's painless and easy. By the end of August I was back to my usual self in terms of energy level and appetite. My hair started coming back in after 5 months or so. More importantly, my brain tumors all shrank by about 50% on my last scan. I had over a dozen with the largest over 2cms.
When I had early stage cancer, I didn't take Tamoxifen because I had heard so many horror stories about the SEs. I was on it recently and had no SEs. Maybe if I had taken it, I wouldn't be Stage IV now. I have since vowed not to scare myself out of a treatment because of what others say about it. My experience could be better or worse. Reactions are so different. Same with Xeloda. Some people have had horrible SEs but others I know said it was like a chemo vacation. I just started taking it but so far I'm only a little fatigued, fingers slightly more sensitve, some intermittent sounds in my ear. All easily tolerated. My first time on any kind of chemo.
Like Bosco19 said, we all have our reasons for our choices and I'm not criticizing yours just want to share my experience.
Hugs, Susan
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I definitely hear what you are saying about not turning down the WBR but I have real strong reservations about doing it. For now I am hoping that the 6 tumors they found are all that's there. They are thinking there are more but it is a wait and see for now.
It does seem some do really well after WBR but the length of the recovery time just seems so daunting when you are this far into this crap. I am running out of chemo options and just really tired of the whole thing-I know other feel the same way.
Thanks for the encouragement and hopefully I won't have to cross that bridge for a while.
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Lily my WBR was in the very beginning of September. Here we are two months later and am doing and feeling better as far as anything to do with that treatment goes. It's not anything I would look forward to repeating :-) but if I had to do it again I would. Also Iscador? - this sounds interesting. Going to see if I can find any journal articles on it.
Susan I have so lost track of what side effects were associated with which chemo - is Xeloda the one that can cause blistering on the feet? Because yeah - that happened. That was unpleasant.
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so happy to hear your good news. Just finished 14 WBRT on 10/24. Fatigue has been brutal. On 11/3 started taxol,perjeta and herceptin for mets in spine, neck, liver and lung. My cancer when it came back spread very fast.
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In case anyone wants to look at this further, now got doctor's letter. He has suggested biological study (through a blood test) to measure natural killer cells activities against cancer cells and then assessment of possible stimuli such as Iscador and thymus extract on the activity of NK cells. Sounds interesting. The study can't do any harm even if I decide not to proceed with stimuli.
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littlecatsfeet, So happy to hear that you are already feeling better! And yes, that's the hand and feet blistering/cracking one, Xeloda. So far I'm fine but only just started a week and a half ago. When did the blistering start for you?
Lkott921, Congrats on finishing WBR! Sounds like they are treating you aggressively so that's got to be fatiguing. Sending positive energy your way that it will reverse that spread! Rest and eat well.
Bosco19, Will definitely ask my MO about the NK cells. She's Head of Clinical Trials so she should have the scoop. Next week she is giving a lecture on immunotherapy that I will attend.
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Hello Der ;
I read your psot and want to reassure you that the SRS radiation is comfortable and painless. It may have some side effect alike ear damage later but that is minor. wishing you good luck in this procedure.
xx Marcia
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Hi, for those who want to share how big were your brain tumor? What was the corse of treatment? I have two lesions and am worried. If you could please share your thoughts that would be great.
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My brain tumour was about 2 cms, at the base of the occipital lobe, plus several smaller lesions scattered about. My onc was the most worried I have seen him (particularly as I had clear scans and a clear CTC blood test only 6 weeks earlier). He said he wanted to treat it aggressively so I had a craniotomy to remove the main tumour about 2 weeks after diagnosis followed a week later by whole brain radiation (5 days) to deal with the other lesions. Main side effects were fatigue and hearing loss.
I then went on to a combination of Xeloda and Avastin. They have neen fine except for low white blood cells/neutrophils so I am having a break from Xeloda this cycle (just taking Avastin). Scans in Sept were clear. Next ones are in Dec.
Sorry you are suffering with this but you can keep on going.
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How long did it take your "screw holes" from Gamma to completely disappear?Mine looked great for weeks-now all of a sudden 3 of the 4 are raised, itchy and just not right. I see the doc on Tuesday to get his thoughts on it. Seems really odd that it has happened so long after the procedure.
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can anyone tell me how brain mets were discovered? How did you feel prior to diagnosis etc. headache, lightheaded,dizzy......etc. thanks.
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Lilly, Sounds like you may have an infection? . A little itchy with healing is normal though. Mine were tender for a few days after each time.Lonnie, I had shaking (thought it was thyroid) A few twitches, went to put on eyeliner and my arm wouldn't go where I wanted it to go. Then a seizure. Problem is, symptoms vary depending on location. What are you feeling?
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I had two weeks of the most terrible headaches I have ever had. So bad they made me nauseated. Sometimes felt as I an elephant were standing on my face. Lots of pressure. Balance issues a few times. Hopefully you have something else. Lots of things can cause headache and light headedness. Dehydration for one.
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Hi, ladies, I guess now I'm an official member of the brain mets club. At the moment I have no symptoms, but I sure have a lot of questions. I haven't read this entire thread, so I hope I don't ask questions that have been answered a million times...
-It looks like I will likely have to do WBR since the cancer, while it has a few solid tumors, is scattered all across the brain like sand, and onc wants to treat it aggressively.
- How long is WBR? I mean, is it like other rads where it's 10 days with weekends off? Or is it longer?
- My onc has me off chemo for the moment. Really, there is no chemo that gets to the brain with any certainty, and while I have mets to other areas, he is mostly concerned with the brain.
- Do any of you have cancer cells in the meninges? My fluid has been negative so far, but apparently if it becomes positive, the decline is fast and furious. Makes me really nervous.
- My onc once told me, years ago, and kind of in a joking manner, that WBR "lowers your IQ by 10 points from the start." Do you feel that's true? I was on methotrexate through spinal taps for 6 weeks and by the end I felt like my cognitive functioning was near zero. I was tripping, dropping things, had a hard time reading, couldn't type without every word having a typo, etc. Is this what I have to look forward to?
- Are any of you months or years past treatment? Or is this a last attempt to buy me a little time?
I don't mean to sound all gloom and doom, but I'm still overwhelmed and I don't want to scare myself witless with Dr. Google. I'd like some real people who have been there to hopefully provide some answers and support.
Thanks so much. Any comments or advice would be greatly appreciated.
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sorry about the brain mets dx raro. I completed 15 treatments of wbr in September. I think 10 is a more typical dose though. It is daily with weekends off like other rads. I felt a little dingy somedays but I honestly think that was from the huge dose of decadron that I was on and not the rads. Some fatigue at the end. Overall it was not a terrible experience like I expected. The most unpleasant part was my forehead peeling afterwards. But now my skin is baby soft. I too wonder about long term survival. Hopefully someone comes along who can give you those examples. Good luck
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Lonnie - I had visual disturbances - flashing zigzags. Treatment was aggressive and described in my earlier post.
Raro - I had WBRT, (5 days). My RT professor categorically assured me there was no evidence to connect WBRT with cognitive decline, and that no worsening of neuro cognitive test studies was demonstrated in large research studies. I returned to work after 2 months in Sept and have been working pretty much full time for the last 2 months in what would generally be regarded as a fairly demanding job. I think we can all worry ourselves into seeing things which aren't there. Worse for me has been fatigue and a partial loss of hearing.
My MO put me on Avastin, a targeted therapy which is thought to reach brain.
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Rebecca - I did 15 WBR treatments and finished in October.My mets were small and spread around and with slightly bigger ones. The biggest SE I had (have?) is exhaustion. At first the steroids had me up all night I got lots of stuff done. Lately I just lay around pretty much all day. I am back on chemo thought after a break for rads.
My symptoms - I realize now over the summer I had flashing zig zag lights that lasted a few seconds. I thought it was the heat. One night in September my whole right side started 'buzzing' like pins and needles. Went to the ER and they did an MRI.
At the beginning my memory was shot but its back now. Could help DD with simple math at beginning but back to normal now.
Oh and only read back a few pages - a lot of stuff is repeated.
Sorry you are here with us, Annie
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Hello, I am New to the brain mets club. First mets confirmed in Thyriod, lung and lymph nodes in my neck in January. Did chemo and radiation and my CT scan show all that is gone or at least stable. But the lagesg scan picked up a mass on my cerebellum (bottom back of brain). I had heaches and dizziness for 3 days and at first they thought it was dehydration. Now they think its this mass. On steroids which are helping anf waiting for brain mri. Onc says to expect surgery or radiation. Feels like time is standing still while I wait for the mri appointment.
Kelly
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Huh. I think that is what has my onc a bit stumped...that I have all this growth from nothing 3 months ago, yet I'm not experiencing side effects. No headaches, no dizzy spells or flashing lights, etc. I do have horrible cloudy vision, but it's cataracts. I will have eyeball surgery (as my kids call it, ewww) in January. My onc said it's due to long-term chemo. I'm grateful that I'm okay so far.
I was reading on line about how the hippocampus (which is apparently where memories are processed, etc.) almost never is infiltrated by tumor, and that it is worthwhile to ask the RO if the hippocampus can be spared in order to reduce side effects. Has anyone heard of this? It was in a government (NIH) paper, so I know it's not some crackpot idea. I'm just curious if anyone has heard of or had it done?
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raro and keldel,
Sorry you are joining us here. I had 20 days of WBR plus radiation to my eye which is why it was spread out over so many days. I was really stressed out beforehand that I would not be myself after WBR but after speaking to others who have been through it on this board, I felt more comfortable that wouldn't be the case. So far so good. For better or worse, I'm still myself. I'm not sure about losing 10 IQ points. I doubt it. Kind of makes me mad that your MO would even joke about such a thing. My memory is not great but it wasn't great before WBR. My RO said that memory loss comes later, a year or so after treatment. She also said that once memory loss happens, short-term memory loss, it is permanent. To help combat that, she put me on an Alzheimer's medication called Namenda. There have been some studies that show that it helps memory for WBR patients. It has no side effect so I figured, why not? You don't have to worry about losing higher cognitive functions, just short-term memory.
A friend of mine here has had brain mets for many years. When something pops up, they just gamma knife it. She's very healthy and even climbed Kilimanjaro a few days after gamma knife. Some of the women who started this thread are still alive too. I wrote to one who confirmed she is still alive and kicking! I also have a friend who has Leptomeningeal disease. It used to be a death sentence but isn't anymore. I ran into her in the MO waiting room and she said the Leptomeningeal stuff has gone away! She still has spine mets but was looking good. We have a metastatic breast cancer group for younger women (45 or younger at first diagnosis) and there are 3 of us with brain mets. All doing well and physically strong.
Hugs, Susan
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Hey gals,
I haven't checked this thread for a while since my brain mets have been behaving themselves for the past 18 months, but good things come to an end and one lesion started growing again. They zapped it with cyberknife yesterday, which only took 40 minutes and no side effects.
Raro - sorry to hear about your brain mets. To your question about WBR, to quote my neurosurgeon, she says it has a chance of making you "dumb", but that is just a risk, not a certainty (just like all the crap we put up with, there's a chance of having negative side effects). Anyway, my med onc says she has lots of patients who've had WBR who have done really well.
Keldel - one of my lesions is in the cerebellum too. I've had cyberknife radiation to it twice. If it grows again, they will take it out surgically. I had surgery on a different lesion located in the front of my brain, near the optic nerve, last summer and it has remained stable.
Best wishes to you ladies!
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The thing that I have noticed about brain mets ladies here and in other places: They are all super duper smart to begin with! Your I.Q.'s are probably very, very high in the first place.
No, I don't have brain mets (yet). Gee, that's like admitting I don't have a high I.Q.
Take care everyone!
Love,
Brenda
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so I had the immune System test results. Normal range for a healthy person for efficacy of Natural Killer cells against cancer cells is apparently 20-30%. My baseline score came in at 27% - which really surprised me. However the test centre then retested my cells after adding various stimulants. Result is that adding Iscador improves efficiency by a further 13%. Who knows whether this will have any effect but I figure it can't do any harm so I'm off to see yet another doctor to discuss. Scans next week too so that dreaded period of anticipating the worst.
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Joining you guys as of 3 Hours ago.. I have one 11m spot in left lobe.. They are recommending Gamma Knife ASAP.. I am on a clinical trial that is keeping the rest of me clean.. so they were all very shocked when I asked for an MRI and it came back with this.. Need it done in the next few weeks to be able to stay on a trial.. Here is my issue.. I do not have a local Onc.. My trial is in Indiana, I am from Illinois.. Trying to get appointments with 2 Rad Oncs asap..
My question is.. How urgent is it to get treated as I need to be back in the Trial within next 30 days to stay on it and it's keeping the rest of me NED.. Also, how long is recovery from Gamma?
Scared and freaked out as this is so new and unexpected.. any advice and or doctor recommendations greatly appreciated!
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