Brain Mets Sisters
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makmak,
So sorry you are joining us here. It took five week from diagnosis to beginning radiation for me. I think that was longer than average but they had to coordinate and design treatment for both my brain and eye so things got complicated. I don't think they'd ever done it before.
I had WBR, not gamma knife so someone else will have to get back to you on that one. As I posted earlier, I have a friend here who climbed Kilimanjaro days after getting gamma knife so I suspect there's not much if any recovery.
Do they think you've had this brain met for a long time? Is this the first brain MRI you've had? What trial are you on? Is it something that should cross the blood/brain barrier?
Best, Susan
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I'm in MM302 and it does not cross the BBB.. No clue how long it's been but my nurse said she is trying to get me in to a dr in the next two days.. I don't know if it's bc I have some edema or just because they want to make sure I can stay in the trial.. My Onc is in San Antonio with the rest of them at the BC conference so I have to talk to my poor nurse who is in shock over this..
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Makmak just read your posts. Praying for quick, correct answers and treatments that will allow you to continue in your trial.
Leslie
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Hi there, I'm new to this thread too - found numerous lesions affecting both sides of the brain, largest is in cerebellum at 2,6cm.
Shit, this has really knocked me for six - what a mind blow (polite). I had a lung and abdomen ct scan on the 4th and abdomen is clear - tumors in my lungs have grown slightly but there are no new ones - "good" news, I stopped chemo at the end of October, couldn't do the 6th cycle, my body took such a beating!
Have been having headaches plus more than my share of regular migraines (had them for ever), been dizzy, walking crooked, bumping into things, trouble with vision, trouble writing - and yes, typos in every sentence. Sometimes I look at what I've written and can't read or make sense of it. So it's nice, at least to say, ah, ok, now I know why that's happening. But getting mets to my brain has always been my biggest fear.
Doc says 3 - 6 months without any any treatment. He says doing the tx can extend this by a year. So I'm starting on cortisone tomorrow to bring the swelling down, and most probably WBR after. But there is always that question - you get more time living, but what is the qol going to be like - if the wbr doesn't mess you up too bad (I have precious little short term memory to start with!!), is it going to be worth it to extend my life. What course will it follow? How will I get sick, what's going to happen - I'm actually quite terrified. When do you start saying good bye to people, when must I organise another home for my dogs???
damn, blast and bugger this disease, it is a monster
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Sorry you new folks are joining us. I had a 2 month follow up (normally would be 3 but they coordinated with my CT scan of my liver),, and all lesion shrank so that was good news. Of course my liver got worse so on to Halaven.
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I have a meeting with my radiation oncologist on friday to get the mri results and discuss treatments. I am so scared of what my quality of life will be. My husband is so supportive but I want for him to have the best memories possible of me. I am trying hard to hold it together until I see the dr.
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Carolben,
We know each other from the lung mets board. So sorry about the brain mets. We definitely need to weigh out the qol costs and survival extension benefits of every treatment. It's a difficult decision to make given that we don't know how we will fare on any new treatment. WBR wasn't too bad for me and I was back to my old self within three months but it was my first treatment after diagnosis so I wasn't already weakened by numerous chemos, etc. Keep in mind that It does seem to work, though you probably won't see signs of improvement for the first 6 months or so. Also, it is not at all painful and the treatments are quick. You lie down with a mask on for 10 minutes or so. Generally, treatment is 10 days every week day.
Like with other forms of radiation, the primary side effect is fatigue. That fatigue peaks a couple of months after treatment (my experience and many others on this board). Also, loss of appetite and taste (could be an issue for you since you are already very thin). Hearing can also be effected, sometimes permanently (I had a small amount of this but it went away). Oh yeah, and hair loss (from your photo, probably not a big factor for you :-))
Not sure if there are complications that your tumor is close to the cerebellum. They usually avoid radiating the cerebellum because they don't want to endanger motor control functions.
PM me if you have questions.
Big hugs, Susan
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Hi, ladies,
Well, I saw the RO yesterday, and I'm a bit nervous about decision making. I would love your input. I have two main lesions in my brain: one near the top of my head, and one right over my right eye. And several skull lesions, as well.
So the RO says gamma knife is out (too big of lesions) but said maybe we could do stereotactic rads. I thought that was the same as gamma knife, but he explained the difference. He is of the opinion that we should do SRT. My regular onc is of the opinion that I should do whole brain rads. My onc's theory is that if there are any cancer cells in the rest of the brain that can't be seen yet, it would zap them, too. My RO says that it's possible, but we could do SRT first, and if any new lesions pop up, we could always do WBR then. Apparently, you can do both of them without overloading the brain with radiation.
I have tentatively agreed to SRT because it sounds easier, but now I'm having second thoughts. Has anyone of you done both? It seems like the side effects are similar. I tried looking on Dr. Google, but it just confused me...what is the difference between gamma knife and cyber knife?!
Anyway, it was kind of funny because my onc kept talking about how he is more concerned with the brain mets, since they were absent (but "concerning") in August and now they're several centimeters and lit up on the PET scan. But I have NO side effects from it (no headaches, blurred vision, balance issues, etc.) and I DO have severe shortness of breath, so I'm currently more concerned with the lung mets! What good is a brain if I can't breathe?!
Anyway, just thought I'd update you...the latest installment of the soap opera, "As the Stomach Turns..." :-)
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sorry - I only did the WBRT so can't help, other than to say it seems to have worked so far. Scan today showed brain still clear which was today's good news. Less good (but unrelated to your question) was that I have a 2 cm lesion on my right hip so it has spread despite the last few months chemo, although MO thought it might have been there for some time and been missed - which would be rather upsetting. He doesn't seem too bothered by it but is adding Zometa to my drugs. Roll on the holidays.
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Mri results today. Two masses in celleblum and a number of small lesions throughout. Going with recommended wbr, 10 treatments, hopefully starting next week. Also increasing steriods to 3 x5 mg daily.
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Keldel - good luck with your rads. I found I was up half the night with steroids and got a lot done. When done and off steroids I crashed and slept for weeks. Just a 2 month follow up (1 month early to coincide with my ct of chest/abd. and they shrank. Yeay. Of course the liver is worse.
Raro-sorry you have to make these tough decisions. I know you can only have WBR once so may SRT is the way to go, then in future if necessary WBR and after that you can always get SRT or gamma or cyber (sorry don't know the difference) on individual lesions. My onc said if they are 'innumerable' they do WBR, but that mean more than 5 in lab report speak.
Annie
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Raro,
I am certainly far from expert-I am new to this also but I had gamma knife in early Nov. I was told the difference between the gamma and the cyber is the accuracy of the beam. You also don't have to have the metal frame screwed to your head for the cyber so it is probably easier to tolerate. I had no symptoms but they found 8 tumors scattered across 4 different lobes. They advised WBR but I opted for the Gamma. They told me they had recently changed the protocol for how many they would do at 1 time. it used to be a maximum of 5 but now they will do up to 10. I had 91 minutes of radiation at one time.
I had no SEs at all other than slow healing of several of the holes they drilled for the frame. I had the procedure and stopped to shoe shop and eat Chinese on the way home. Walked the dog, and cut part of my grass. Easiest thing ever. No fatigue.
Back to work and doing well
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Okay, now I'm really freaking out. I have an appointment this a.m.to go over the procedure. Do they really screw the mask/frame thingy to your skull?! Does it hurt? Are you awake through it all?! For my lung biopsy, because I have sleep apnea they automatically gave me full sedation. If I'm going to have screws or bolts in my head, I'd rather be out completely! I wonder if this is why the nurse prescribed ativan to take an hour before the procedure and made it extremely clear that if I needed more, they would have more there.
Can anyone enlighten me on this? As much as I like my onc and rad onc, I'd rather hear it from ladies who have been through it. Thanks!
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I didnt have a mask at all for WBR I just had to lie still xx
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I had WBR and no mask they don'tdo that at my centre just lay really still and they adjusted me slightly for the other side which wasnt everytime x
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Just got the call. Will be starting tommorow
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I had a mask but its not bolted to my head. I was shaped to fit me and marked. Then it was attached to the table. It didn't hurt and unless you are very claustrophobic I think you won't find it a big deal. I just closed my eyes and it was over in less than 5 minutes.
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Well, thanks for the input. I had a really terrifying experience today. Went in for the mask, and they placed this hot fabric over my face, saying it would dry in 30 minutes. It was connected to another part in the back (think Man in the Iron Mask). When they put it on, there was only a small hole for my nose to breathe.
I was blind and unable to speak because the mask covered everything but a tiny bit of my nose. I was terrified that I would cough and aspirate something. My back started spasming and I was in agony on that thin metal board (WHY don't CT, PET, or MRI machines not have memory foam on them?!), but I couldn't tell anyone. All I could do was moan. My daughter held my hand and whispered encouragement, but there wasn't much we could do. I never want to go through that again. No wonder the nurse strongly advised me to take ativan before coming!
I get to go back tomorrow to be sure it fits, and then next week do the real thing. Gee, what a Christmas present for me! Not. Sigh.
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oh raro I'm sorry. I know that part is awful. It doesn't help that the thing smells like a wet dog. I felt like I was suffocating. Promise it isn't as bad when it is dry. It isn't as heavy then. I thought it would bother me but it didn't. My techs moved quickly and would always take the mask off first thing when they came back in. I hope you are able to feel comfortable.
Got the results of my follow up brain mri today. THe one no one wanted to five me because they said all looked good now. I still have give visible lesions. 3 of them have grown since 10/31 scan. One of which doubled in size and the other two nearly doubled. RO says only option is cyber knife and wants to do that ASAP. Nervous but at least I have some option. Meanwhile started abraxane today for my lung, chest and liver. Xeloda failed me there but I wonder of it could have been working on my brain? MO says abraxane won't reach brain.
Does anyone know of other drugs that may cross the BBB? I am triple neg so no tykerb for me.
So tired of this new reality I am in. Hope everyone is feeling well.
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When I went in to make the mask, the tech told me, "It's just like getting a facial." That was really helpful because I felt so relaxed. I really was able to convince myself that it was like being in a spa. The light was low, the mask was soft and warm. I fell asleep. For those who haven't done it yet, I hope you can use this trick.
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Raro- sorry your experience was so terrible. I was in the hospital when they did mine. I think I slept through it so maybe i just don't remember.
Delirium Pie - so sorry to hear about the lesions growing. I think etoposide (VP-16) might cross the barrier. I was just on it with carboplatin - didn't work for me and it was a tough combo. Not sure which drug though - maybe it was the carbo that was kicking my butt.
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Well...Had my first wbr treatment today. 9 more to go. Feel tired but no nausea or headaches (than before) radiated once on each side of head. No mask. Was comfortable and quick. See RO on Monday and will get more specifics on how many lesions. Using a cane on doctors reccommendation to prevent falling. He thinks I am a little wabbly and doesnt want me to break something and end up in hospital. Appetite is good and had a nice reiki treament at end of day. Hoping for a better sleep tonight now that I am feeling less anxious about the treamement
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I went in today just to be sure the mask fit. It did, but it was so tight! I was more worried about the back pain. Maybe they'll let me bring in a flat pillow?! I was traumatized just putting the stupid thing on, and the nurse said to double the amount of Ativan as well as oxycontin, and hopefully I'll be loopy enough to just relax and go to my happy place. I'm not holding my breath, sigh. I asked my DIL, who was in the room with me, if the mask looked as creepy as it felt. She hesitated, then said, "Yeah, it did. I don't know how you can stand it." Well, at least she was honest!
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No mask for me either when I had WBR
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keidel,
So happy to hear that it went well your first day. I had a hard time the first day because I was worried about having a coughing fit during treatment. I have a bunch of lung tumors and enlarged lymph nodes in my chest that were causing me to cough a lot. They also had to reboot the computers midway through so it took twice as long. After that first day, I still worried about the coughing, but I was fine. Did they put you on steroids? Since I didn't have symptoms, they never had to give me steroids. I was so relieved because I had been so worried about the side effects of steroids. Even read an entire book (recommended early on in this thread) about how to cope with steroids. That was a big waste of my time!
Hugs, Susan
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Have now had 3 treaments. Taking 3 x 4 mg steriods daily. Doing pretty well. Very fatigued. ..a bit headacy..a bit wobbly but manageable. Have a reiki treament ghis morning and ghen another wbr. Then a break till monday.
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Oh Kelly, thanks for updating us! 3 treatments down. You can do this!
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Thanks Brenda. Your support means the world to me. Finished number 4 today. 6 more to go.
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Found out brain mets over Thanksgiving. I finished 10 WBR treatments and tried Tykerb but rash was terrible. Tapered and stopped Prednisone 2 days ago but still have a lot of weakness and joint swelling. Any advice how to manage? Walking is really difficult from the weakness. Anyone not able to take Tykerb and on something else? Any interesting trials? Feeling desperate. Good news is the Kadcyla is at least working from the neck down.
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Priscilla - I was off chemo while on WBR. I will tell you I was tired and had wobbly legs for a long time. Longer than I thought. Take it easy and try to sleep as much as possible. Good luck, Annie
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