Brain Mets Sisters
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Hello,
First I want to thank you for starting this thread, and adding to it. I have not read the entire thread - this has been overwhelming - so my answer may already be somewhere in here, and I apologize in advance if it is!
I have had a very interesting past two months, and mostly with my radiologist. Rads to my spine, then to my clavicle, THEN just as I am ready to resume chemo with a new drug (gemzar) I begin getting lots of head pressure and weird numbness to half my mouth.
My initial diagnosis of mets (lungs, liver, bone) was in March of 2012. I was diagnosed with brain mets at the very end of September of this year - multiple sub centimeter spots 'small like eraser tips on pencils' - talk about unprepared and shocked. I have a couple of spots of disease on my skull, and I was thinking it was this.
At the very beginning of October I started WBR for a total of 10 treatments. I was on decadron during this time but started getting this crazy rash hours after taking it, so they weaned me off it pretty quickly, before treatment was completed, thinking I had developed an allergy to it.
I saw my oncologist the next week, hoping to start on Gemzar, but he was very concerned because I had headaches and was still nauseous. So he put me back on decadron (and started me on Gemzar a week later) and gradually weaned me off, so my last one was last Tuesday. I was feeling pretty good, looking forward to my week off from chemo, and was thankful to be able to sleep again without having to take a pill!
But slowly, over the weekend, a headache/head pressure returned (and nausea this morning) along with a couple of other things which prompted me to visit the oncologist today. They have put me back on decadron, and also scheduled me for a CT of my torso and MRI of my head to restage me. I hadn't had chemo for about two months before starting Gemzar (all that radiation!), and I know that the chemo I was on previously had stopped working.
That's a lot of info right there - sorry! - because my one burning question is about the SEs of WBR. How long were you on steroids afterwards? Could this headache be related, as I know radiation is the gift that keeps on giving (in good and yucky ways)?
Thanks for reading - oh ps:
Ears clogged - have had that since WBR, finally went away last week, but kinda back now :-( I also noticed that sounds were almost a half step lower (the phone ring, computer sounds I hear every day). My daughter said I could still sing on key though!
I have been putting warm peroxide in my ears - wow the bubbles! - and cleaning gently with a q-tip - and I'm getting lots of dead skin out of there (similar to all of the peeling I'm getting on my head/face). I don't think my ears are producing wax yet. The peroxide is definitely helping with the itching in my outer ear canal.
Ok I think I'm done now!
Leslie
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Leslie,
You've been through a lot! The main SE I had from WBR was fatigue. That fatigue peaked about 3 months after I finished treatment so, like you said, it's the gift that keeps on giving. People around me were always so keyed on "When are you finished with WBR?" but the treatment itself is not so bad, it's the fatigue later. I also have the clogged ears still and I'm 5 months out now. I had my general practitioner take a look and she said it wasn't infected so we should just wait. If it's not better in a couple of weeks, I will go see an ENT specialist.
The radiation treatments can cause inflammation which could be the reason for the headaches or it could be the steroids. I wasn't on steroids and didn't have any headaches.
At this point, I don't have any rad SEs at all, not even fatigue. My last scans showed about a 50% reduction in the size of my brain mets. All in all, I'm really glad I did it. I was really worried that I'd become someone other than myself but at least so far, I haven't noticed any change. My memory isn't great but it wasn't so great before WBR!
Hugs, Susan
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You have been through a lot. I think the MRI should answer some questions about the headaches hopefully.
I have found since I'm off the steroids I've had mild headaches especially at night but an OTC takes care of it. While on steroids I didn't sleep, got lots done. Last steroid was last Friday and I've spent the last two days in bed, and half of Sunday as well. (Overdid it on Saturday). I've never been so tired in my life.
Ears: I found putting cotton balls soaked in witch hazel helped. And maybe less harsh than peroxide? Also when I was taking benedryl that helped the ears a bit too.
I saw my onc yesterday and both she and I agreed no chemo this week since I'm so wiped. Starting on Monday again- VP16 which is etoposide on days 1,2,3 and carboplatin on day 1. Neulasta day 4. I did one before my brain mets. Gotta say its a tough one.
Gemzar was good to me for a long time and I hope it is to you too.
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Thanks for the responses, guys
Annie62 I finally asked for a sleep aid two weeks ago, and was given Ativan .5mg pills. Took one - slept 7 hours nonstop, plus two more later in the morning! A few days later I took half a pill - slept another seven hours, but was able to be napless the next day. Last week I tried a quarter pill - fell right to sleep, woke up at 2am, but was able to fall back asleep and stay there for a few more hours. They are a blessing for sure - I can't believe what a good night's sleep does for me the next day!
SusaninSF - so happy to hear that you no longer have side effects and that there has been movement in a positive direction for you, AND encouraging to hear that feeling normal is on the horizon, even if it's three months out, I am willing to wait. I hate decadron. I've had oral thrush twice since being on it. Though I love the energy, I don't love the other side effects. They wanted me to start with 4mg/day, but I asked if I could start with 2mg/day, and see if that's enough.
Hugs,
Leslie
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hi Leslie
I have been off steroids completely for a couple of weeks now. They were actually causing a lot of pressure on my face and head. Afterwards I do hVe mild headaches and pressure but the dr stas it is from the radiation, even though I, like you, am paranoid about it.
Ears still clogged. Completed wbr mid September, 14 treatments. Be careful cleaning your ears. I was nuts trying to get the peeling skin out. Finally used the round end of a bobby pin. It worked great. Then got out a buch if wax with a qtip. I ended up with a massive ear infection that I am still fighting. Be gentle and keep them dry!
I hope te gemzar does well for you.
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DeliriumPie, it has been SOOO tempting to stick something smaller than a qtip down there, but so far have resisted the urge! drives me crazy to think of all that dead skin! I try to keep these ear canal cleanings to once a week, and I'm still surprised at how much is sloughing off. Makes me wonder what the good cells in my head are doing. Poor good cells :-(
Hugs,
Leslie
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hi Deliriumpie how are you, I was very interested coming accross your post in particular as you said you came off steroids and they caused a lot of pressure feeling on your face. I had a brain tumour surgically removed and radiated but returned straight away and still growing so my steroids are getting gradually upped to cope with it. I've been on 8mg per day for couple of weeks....anyway a major thing I get is pressure feeling like sinusy or pushing on my nose, forehead, face and always thought it was head pressure worsening but could it be the steroids now in thinking?!i always found it a sign pressure was worsening in my head (though the tunour is in my cerebellum back of head) that it must be real bad to then get to the front and face. Interesting. Anyway how are you doing and coming?! And how the hell did you ever sleep on those bloody steroids?!?! X
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Cats and Delirium, I too have the pressure on my face and my scalp is super sensitive. I'm being careful but its annoying. I think my moon face is coming down a little bit.
My onc also gave me an Ativan prescription. I slept great but the next day I spent in bed as well. Decided to risk it again last night, slept pretty well and I'm up and altough a little groggy I think today will be a better day. Maybe half the day on the couch. I can live with that as long as I'm on the upswing.
Oh and witch hazel ladies - it dries out your ears (I had fluid). If its was and dead skin, witch hazel might not work). I think there are holistic drops sold (baby section) that might be helpful. Similison (sp?) used to make a thing with dimethicone for gas to put in baby bottles and I seem to remember they have an ear remedy too. Just a thought.
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thanks Annie - I will look for those holistic drops. We have a Whole Foods out here, as well as a smaller chain of grocery stores called Dave's, that carry organic and holistic products. Very thankful that they are here.
Ativan is a Godsend! Took a quarter pill last night and slept a straight 5.5-6 hours uninterrupted. Leaving today for a long weekend of adventure with two good friends. So excited! Headache is definitely on its way out, took 2mg of Dexicam this morning and no Advil yet. Praying this will be enough to kick my head stuff to the curb!
Hugs!
Leslie
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cats - Woo Hoo! Have fun.
I may take a page from you book and take 1/2 and ativan tonight. Slept great but my head is in a fog.
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I too thought the pressure was a sign of increased swelling. It took me a while to realize that te steroids were causing me so many problems. I was on a massive dose, 32 mg a day and not being paid proper attention to by my RO. eventually I was in full on decadron psychosis. I didn't sleep which didn't help matters either. I would just lay with my eyes closed and sometimes hallucinate. Lol. Couldn't shut my mind off and felt like I was dying every night. It was a bad bad time. Now that I have even off, I do get a light pressure on my temple and back of my head sometimes but supposedly that is from radiation. I like to hopefully think that it is the tumors shrinking from chemo that I can feel. I have not had a new mri yet to see what's going on. I am anxious. Hope you guys have a good day.
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Annie let me know how it works for you!
Delirium I sure do know how you feel about being anxious.
32mg/day sounds insane! SO glad you are off it!
Hugs,
Leslie
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Delirium - 32 mg is a lot. No wonder you felt awful. The most I was on after the hospital (where I have no idea how much I was on) was 12 mg a day - 2 mg 3x a day for 15 days and then they started weaning me off it. At least when I was laying awake I was making list in my head of everything I wanted to do, not having hallucinations. I'm so sorry you went through that.
Annie
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lol Annie. Oh the lists! I totally did that on the lower doses. When I was taking it with chemo way back when, I would sit on the couch and make lists and lists in my head. Then realize 8 hours later that I had not moved. Ha! I think it's hilarious that everyone makes those steroid lists.
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omg wetting myself.... I'm the same and my iPhone has about 15 lists for various things. Also my mum has been on steroids lately for cancer and she's been doing what I do....ordering lots of things from Amazon in bed at like 3am!!!
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hilarious hils. I have a terrible qvc habit that was born of steroid usage!
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omg- thank goodness we have amazon prime. I've ordered so many things to save my husband a trip to run errands. The garage was filled with cardboard boxes but that was only one trip to the recycling center. I don't feel so crazy now!
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lol. I can see why someone on Decadron would love QVC or the like! Also the list making! I loathe Decadron. Hate the moon face and weight gain particularly. I am going to remember the Ativan tho. I HATE not sleeping. It is the worst. And cranky too...very cranky!! Sigh.
DeleriumPie, I really love your name. Very cool.
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thanks Judy. :-)
I've been using amazon like crazy too since I'm not allowed to drive. Things that would normally come from Walmart. I sure miss driving. Are you guys on driving restrictions?
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Had my brain scan yesterday. Mixed results. No new lesions. hooray. The origial tumor bed treated with gamma knife is showing more swelling and has grown. Not much but enough to have the neurosurgeon come in with the radiation oncologist to discuss surgery now or waiting another 3 months. Could be necrosis after 20 months or it could be the original tumor coming back.
All you you give me such strenght as I read about how you are dealing with the effects of radiation and all the drugs that go with it. I thank you for that. I am going to wait to see the results of my CT scan to my liver today before i make a decision. How my liver goes my brain usually goes.
Hugs to all
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I am still in early stages of this but the driving thing is an issue. They asked me to stop driving but because I have no symptoms they can't force me not to. I have taken leave from work because they asked me to though. I am an electrician and they didn't think it was a good idea to be working around high voltage right now.I saw the rads guy last week and he had said he wanted this whole thing wrapped up by Friday. I hadn't heard anything from any office so I started calling yesterday morning. Seems as though my new insurance co doesn't want to pay for a neuro consult or the SRS either. I know they don't have time to call and say why they haven't called but if they had any idea what the anxiety level is like when you are first starting with the brain stuff. They are appealing it right now-I will give them today and start calling again tomorrow.
Good thing is I had asked for Lyrica for neuropathy and have waited months to get it approved-finally approved it yesterday but onc had to talk to rads guy because they had talked about Keppra for after the surgery and Lyrica is the same type of drug. They didn't want to wean me off one anti-convulsant to put me on another. really hoping for some relief from my feet.
How long after surgery did you have to take the steroids? I have only had them a couple of times prior to chemo or a day or 2 after. I already have a refrigerator full of lists-may have to clear them off to make room for new ones I guess.
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Leftfootforward - I am restricted from driving until I feel I'm up to it but a minimum of another 10 days I think. Honestly I know I'm so tired right now and my reaction time is still slow so I'm not driving until I feel able which will be sometime in November I believe.
Lilylady - glad that there are no new lesions and I'm really hoping for necrosis not re-growth in the original area for you. Steroids I took while on brain rads and I think 10 days after which included weaning me off of them.
Your insurance company sound like they are cheapskates. Hope you can get everything in and that the Lyrica is okay as a substitue for the Keppra.
I too am more concerned about my liver. I had a big progression there in August, got one round of chemo in before the brain mets debacle. Onc and I agreed I was too tired this week so next week I start again. For the first time my liver actually hurts a little bit.
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My oncologist didn't want me driving during radiation.
I was told by the radiologist to never drive again. I think it was because she couldn't guarantee I wouldn't ever have a seizure or uncontrolled movements in the future (I have never had either).
Right now I drive when I feel clear headed, and stay close to home.
Maine is cold and wet - but we are having fun!
And LL Bean and Amazon - I am in so much trouble.......
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None of my doctors ever told me not to drive. I worried about it a bit but, since I didn't have any brain mets symptoms like nausea or headaches, I figured it was fine.
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in the UK, I had to notify the driving authorities of brain surgery and was told by surgeon not to drive until they had cleared me. They have just asked for more info about visual disturbances. Think my car insurance would be affected if drove without clearance. London cabbies doing very well!
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I have been scheduled for the Gamma Knife on Nov 4. Have appointments this week with a neurosurgeon and my primary care doc for a physical. I just want to get this done so I can feel like I am moving forward.
That was my scheduled return to work date so I have to make some calls about that. For those of you working how much time did you take off, if any?
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I haven't worked since my Stage IV diagnosis. Just switched to long-term disability.
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Susan if there have clearly been no seizures, they don't stop you from driving once you feel well enough to drive.
I'm also on LTD but from closer to the onset of stage IV. I had pericardial effusions and severe plueral effusions. Never been back to work.
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I had July in hospital for surgery and treatment, August took as holiday thinking -encouraged by my oncologist - I would be back at work Sept. Neuro surgeon said this would be too soon and he was right so I worked part-time in Sept and have been back more or less full time in Oct - although if I feel tired, I can work from home.
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My CT and MRI showed NO CHANGE. What growths I have have neither grown nor shrunk (including the brain stuff) - which to me is amazing, seeing as I hadn't had chemo since July (and at that point things weren't looking to hot).
I'm calling it 'arrested' 😁
I'm still showing swelling around the brain mets, so I've been asked to stay on the decadron indefinitely - but I'm going to see if I can take an even lower dose and keep SE to a minimum. I am eating like several horses and maybe a small pony, and I want all of those LL Bean clothes I've ordered to continue to fit!
The better I feel, the happier I am with the decision I made in September to stop working. I was fortunate in that my workplace had retirement options based on longevity with the company (and not "retirement age" requirements per se), so I get to keep my health insurance at the company's group rates, which my SSD income will cover. I didnt understand what kind of pressure I'd been putting myself under for the past two years (managing mets treatment schedules and side effects while working a mentally challenging and SOCIAL job) until it suddenly wasn't there.
If any if you are in a position to even cut back hours, I can recommend and encourage it :-)
Hugs!
Leslie
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