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Brain Mets Sisters

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  • Anna11
    Anna11 Member Posts: 4
    edited December 2011
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    Met with the radiation oncologist today and starting wbr and then have another brain MRI in about a month... I've been feeling strained over brain mets but have a lot more confidence going forward this after talking it over, so I'm happy with that. I still have to meet with my oncologist and radiation oncologist before starting though, which is next week... But I was wondering if you ladies could tell me about the impact of side effects from wbr? Mostly any short term memory loss, I feel uneasy about the idea and was wondering how that is. Thanks so much.

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Anyone have problems with blood sugar on steroids. Dammit I hate them except for the manic cleaning and organizing.

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    I had to take some insulin in the hospital after surgery when I was in steroids. Bit they do impact how you metabize sugar, so it is common to have changes in your blood sugar control on steroids.

  • jintski
    jintski Member Posts: 23
    edited December 2011
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    Anna, I may not be the best person to respond as I can only give short term side effects, not long term,  I have been very lucky so far, I was also particularly concerned about memory loss and some things I have also read mentioned going senile!!! I am keen to return to my job as a teacher in January, so need to be focused mentally!  I have tried to keep my brain active (many hours on here and facebook) reading and typing.  I have read a newspaper every day and many books! Don't know if it'll work long term, but it's worth a try.  I don't know how old you are Anna, but I have also read that younger people seem to experience less long term side effects.  I am 45 - so wondering if that is classed as young!  I am more tired than usual, not needing a sleep, just lacking energy and motivation.  I am now totally bald and have a bright pink forehead.  But these seem to be my only SEs....apart from my whole body is aching...I haven't been told this is a side effect...has anyone else experienced this? (however I have missed one cycle of zometa, so am wondering if that causes bones to ache!)

    Good Luck with it! 

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Gosh, that sounds fun, Jintski! :D

  • mommydoxie
    mommydoxie Member Posts: 11
    edited December 2011
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    Hi TallM and Mommyx3:  I am about to start WBR for brain mets.  I'm curious how it affects your driving.  Has any discussed if/when they should stop working and try permanent disability.  I want to make sure I can work as long as possible, but to know when best to start a disability process if necessary.  Any thoughts?

  • donnabee
    donnabee Member Posts: 8
    edited December 2011
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    I've still got two WBR tx next week.Decadron was making my life impossible. I had no sleep for days and zero appetitite, so  I was getting pretty weak. So my rad onc let me try tapering about a week ago.

    Yesterday was the 2nd taper level. This afternoon i noticed significant weakness in my left foot that i havent felt before.

    I wonder if the tapering of the decadron is allowing brain swelling during rads?

    Or is it just the mets having a good time. I'll talk to my onc tomorrow of course. I'm just wondering if i  should go back a dose on the taper schedule, (which was part of the instructions).

    cancer sucks

    donna

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Oh Donna, nightmare on decadron street? I've been using a little more Ativan and waking up early. But NO sleep is not cool.

    Weakness too? Oy! So did you have an excercize routine you have to drop?

    I'm gonna ask about driving tomorrow. Does anyone refuse wbr? Not a really choice I bet.

  • jintski
    jintski Member Posts: 23
    edited December 2011
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    In England, we are not allowed to drive with brain mets at all and are supposed to inform the DVLA (Driver and Vehicle Licensing Agency) and surrender our licenses!  We then have to reapply if treatment has been successful and the reassessment is based on an oncologist's report.  I haven't done this yet! - it is such a big step! Losing my license has possibly been one of worst things I have been through with this treatment.  I have good friends, but feel very 'trapped' and losing my independence has been awful.  I had a femur replacement for bone mets earlier this year, so walking a long way to a bus stop is not an option....so public transport is out!

    K-Lo I was tempted to refuse WBR after reading about the side effects, but didn't dare!

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Steroid: many side effects of the withdrawal are similar to symptoms of brain swelling: headache, weakness, vision changes. Try slowing down the taper



    Driving: I had brain surgery to remove my tumor and was put on anti seizure meds. I will be on them for about 6 months. I was driving 2 weeks after surgery and have no restrictions. I just have fuzzy vision from steroids.



    WBRT: I was hesitant to do this and went to a couple docs. It seems there are different "standards" based on how many lesions you have and how/if you can locally control them (radiosurgery or surgery). I had only one lesion that was removed by surgery. I had the option to "watch and wait". However, I did choose WBRT to reduces risk of recurrence. Others may not have this option.



    It was a difficult and scary decision for me. I hope you all are doing well!



    Question: do the radiate your face or just the head? I don't wanna loose eyebrows/eyelashes!!!

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Jintski that would be so difficult, taking your wheels away.my luck always runs like this: when I don't need rides, people are free,  When I do needs rides, they just all got full-time jobs.

    Yall, the rad onc told me today she recommends gamma knife (vs WBR).  Am i right to be relieved?

  • donnabee
    donnabee Member Posts: 8
    edited December 2011
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    survivor2B,

    Ive had 13 WBR tx so far (i think Undecided) and while all my hair has fallen out, I still have intact eyebrows and lashes. Not sure how long that will last though. (1 more tx to go)

    I am waiting to hear from my onc about my droopy foot. Overall I feel pretty good today. I sure have a hard time finding anything to eat though because my throat is so dry. (i'm getting some rads to my jaw at the same time as WBR so thats a little bonus for me.)  I don't seem to be able to eat more than milk, canned peaches, Ensure and maybe some applesauce and yoghurt. Anything else is practically sawdust.

    Any suggestions?

  • Jellydonut
    Jellydonut Member Posts: 20
    edited December 2011
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    Finally I took time to read through the entire thread from beginning to present.  Chainsaw, thanks for starting it.

    Update on me:  Had brain surgery on 11/8 to remove 2 tumors, however, 4 still exist in the back of my head.

    The steroids turned me into a raving maniac!  The ICU nurse told me I was flailing in the bed so he sent me for a MRI (don't remember any of it).  Anyway, I went off the steroids after about six days, but they do stay in one's body for a couple of weeks.

    I'm at home and getting P/T 3x a week.  My leg is still weak but at least I'm walking better with crutches.  Supposesd to get O/T for my left arm & hand are weak, too.

    It's very tough to live alone & be disabled (falling & dropping things).  My friends do what they can & they are a big help.

    I see the oncologist next week.

    Hugs to all of you.

    Jelly

  • mommydoxie
    mommydoxie Member Posts: 11
    edited December 2011
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    What are most going through WBR doing about work?  When do you know when it is time to look into disability? 

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Donna Bee:  Here's a website from cancer survivor network about the side effects of WBRT.  It appears it may take about 6 weeks for your to regain your appetite.  http://csn.cancer.org/node/136178

    Here's a page from the LiveStrong website about nutrition with radiation.

    http://www.livestrong.com/article/468737-nutrition-during-radiation-treatment/ 

    I remember from chemo that food tasted different and so I just kept eating to find something that tasted good.  Now I'm on steroids and I just eat to eat! And usually carbs which is bad for my recurrence risk!  

    K-Lo:  I would be relieved too!  The only comment I would make is that I've seen a lot of posts about radiation necrosis after the SRS.  Be sure to ask your physician about it.  I think it is due to the amount of tumor and other tissue that the SRS kills.  It can be mistaken for tumor recurrence on future scans.  Anyways - directed radiation is always better than scattered!  I forgot, is this your primary treatment, or have you already had surgery?

     Andrea 

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Hey Anna this will be first voyage into my huge skull. See neurosurgery Thursday fingers crossed that he agreed with RadOnc and we do the.one shot deal. Decadron driving me to talk walk and organize watching for inappropriate behavior, biting heads off. My poor DH.....he's smart but lost in this world.

    Do you think maintenance exercise helps you stay stronger or balanced through it?

    Xoxo

  • jintski
    jintski Member Posts: 23
    edited December 2011
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    I haven't lost my eyebrows and eyelashes! The oncologist showed me the line just above my eyebrows where they treat down to!

    He is correct because my forehead is bright pink and the pink stops just above my eyebrows.

    As to a dry mouth/throat I mentioned this to my dentist who prescribed a fake saliva spray that stops dryness, apparently it protects the teeth too!

    Take care all xxx 

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    I definately feel better when I take a walk every day. I haven't started radiation yet ( do my simulation today), but I've been on steroids for 6 weeks now. It helps with the bloat and wt gain!!!

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    MommieDoxie...I drove the entire time through WBR. The only time I took myself off the road was when I was on heavy pain killers, but I didn't need those after 10 days into treatment. 

    DonnaBee...stomach issues and appetite are terrible side effects. I'd rather be in pain. I think it is steroid withdrawal and radiation for me that does it, and then I surgery to install the brain chemo port under a general and of course that didn't help. Here's what worked for me...bananas, rice, green apple, applesauce, ginger ale. Of couse toast and crackers are the pits with the dry mouth and if you can choke one down with ginger ale and your pills it's better.

    Hope you are feeling better!  

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    I think it was apple who said avocados are good and easy to eat.

  • donnabee
    donnabee Member Posts: 8
    edited December 2011
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    avocados, eh? Sounds like my next experiment.

    But  I'm afraid I'm not doing very well. I Just had a chat with my onc on the phone. She's worried, i've got new symptoms--my left foot is drooping now. And I cant seem to consume any calories (i'm hovering around 400-500/day)

    the good news is the WBR ended today. However, for the foot droop, they want to see me go back up on the hated decadron that i was trying to taper from. If that doesn't help, then my onc is thinking about leptomenigeal mets. sigh. I'm getting really tired. (but aren't we all)

    maybe i'll go take a pain pill. Sometimes its hard to say whats getting you down.

    d

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Ohh, <<<<Donna>>>>. I'm so sorry. Hopefully with treatment done you'll be able to eat more. You know your doc is there to puzzle out all the possibilities. You only need to focus on your response and that the foot drop will work out. Rest, recover and gain strength every day. You know you can do it!! All my love and prayers to you!!!
  • Jellydonut
    Jellydonut Member Posts: 20
    edited December 2011
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    Donna,

    Just learned today (from the P/T) that there is a foot brace that can be ordered through a doctor.  Possibly that will help your foot.  Even when I'm walking with the crutches, my foot will turn on its own and it's scary. 

    Sorry to hear you're going through this h*ll.

    Hugs

  • Joyce4123
    Joyce4123 Member Posts: 7
    edited December 2011
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    Anyone who is on decadron should begin to wean off of it slowly as soon as possible.  It is a terrible drug and carries major side effects esp. if you need to be on it long term.  Of course check w/your dr. and follow his wean advice, but know that some times they want you to wean off it too fast, so go slow and my best to you all

    joyce

  • Lore81
    Lore81 Member Posts: 13
    edited December 2011
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    Hi everyone this is my first post. This is for my mom. She has stage4 triple neg breast cancer (brain mets). She was diagnosed last year Aug 2010. Had a mastectomy and lymph nodes removed in Dec2010. Little after had skin mets (radiation got rid of them). Has been on abraxane which has worked fine until Sept of this year. She had really bad headaches  that woulnt go away and was vomitting and nauseous, so I took her to the er had scan and was told she had brain mets. She had 14 days WBR right away finished around oct 11. Last week she had the headaches again so onc told me to take her in and get a scan. He said it looked like there was a few more lesions but could also probly just swelling around the tumors causing her the headaches again and probly beacause she stopped the deacdron to soon. So she went home on pain med and decadron. Was fine for a week and again she  got the headache and vomiting. I took her to the onc this Thurs cause she had an appt anyway but she was in real pain and vomiting the dr had to give her morphine. Well after she was stable he took me out for a talk and basically said since she already had wbr just about a 1 month and a half ago that this wasnt looking good and there seems to be progression so soon that it was seroius and basically that this is it that I had to get the family prepared because these are signs of the end of life, of course I was in tears and really scared for my mom I love her so much she is so young just turned 47 Nov 1. I asked him if there was anything anything else that could be done and he told me that she has a very aggressive cancer and that no drugs reach the brain. He said he couldnt say if she has weeks or months. I hate to hear that kind of stuff.For all I know she could have many more years only God knows and we have alot of faith. He recomended me to take her to another hospital right away that same day. He said that maybe there they could see if she is a candidate for stereotatic surgery or more wbr. I guess they are better equipped there or idk have better specialist or mabe just for us to get a second opinion. The onc there told us the results of the mri showed alot of small lesions and a big one that is 3cm (which is probly the one causing all the pain I imagine).He too didnt give us much hope and my mom doesnt speak much english but she understands and it was so hard to get that kind of news from the dr. Im so mad because its been since Thurs and we still havent seen the radiologist to talk about her options. I had to keep asking them whens the dr coming until they called and said he wasnt gonna be in his office today so we have an appt this thurs 15 and they let her come home today (also said follow up with your reg onc to see about continuing chemo).They even gave me the cd with the mri to take that day ( which makes me think if the radiologist has even seen it to compare with the one from last week). I know its just in two days but this seems like forever to me I want her treated asap...scared the tumor could be growing. She seems to be ok right now with the decadron and the pain med which is stonger than the one before and it seems to be working shes taking them about every 5 hours or so. She walks and is up and around normally although she is weak in the legs but has been since the wbr. Idk if anybodys reading this but just wanted to post my story and hear good news! Like the people that are still here that have brain mets and like the other treatments like xeloda that might cross the brain barrier. My mom actually has some xeloda she took while she was on radiation for skin mets. Im gonna ask her onc about that when I call him back to see about chemo I just hope he really hasnt given up on my mom (I want to think he just send us to the other hospital to get a second opinion from the radiologist. I think thay actually work together its a big group idk their both texas oncology. My mom has been really strong with this happening in her life. She is not depressed at all and says she is not scared of death. I don't like it when she talks like that. She says she will not lose hope ever theres always God and he does miracles. She has aIot of support from her family and freinds. I'm the oldest of five and the youngest is my lil sis whos just 12 years old. I really want my mom to be here when she graduates from highschool. I lover so much I cant imagine life without her. I'm always with her ( I actually live right next door to her,I bought the house next door about 5 years ago). I know this is a long post and dont know if anyone acutally reads the whole thing but just wanted to share my story and hopefully get some good feedback from people that are actually going through the same situation. Thanks.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited December 2011
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    Oh Lore81, that is a sad situation you are in - your mother is very lucky that you are so caring and supportive.  I hope that in the next few days someone will find a new way to treat your mother to relieve her of her pain and give her hope again.

    Please let us know when you have further news,

    Barbara 

  • Lore81
    Lore81 Member Posts: 13
    edited December 2011
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    Thank you banjobanjo...I actually just got back from checking on her to see if she took her pain med but she said she hasnt had any pain and the last time she took it was at 5pm. So I guess thats good :). So do you also have brain mets?

  • banjobanjo
    banjobanjo Member Posts: 187
    edited December 2011
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    I think I hit the 'radiation wall' last Friday.  It was at the lowest point of my chemo cycle but this felt different - completely without strength.  I had to sit and prepare myself before I could get off the sofa and go to the bathroom because moving was such an effort.  I have not been out in the last five days, have not left the sofa, and have lost three kilos in weight.  I have been reading of other people's experiences and came across the term 'radiation anorexia' which is when extreme radiation fatigue hits at the same time as an inability to eat.  Everything tastes horrible and I have only managed to eat by literally forcing stuff down in order to avoid the terrible hunger pains if I don't. I, who have always loved food, don't want to eat at all and it is a daily struggle to swallow stuff without vomiting because it is forced upon me.  I'm trying to make things easier by drinking hot chocolate drinks as drinking is easier than eating, but how long does this go on?  I've become a complete sofa invalid and last week I had a life.  It's very depressing.  Anyone else experienced this?

  • banjobanjo
    banjobanjo Member Posts: 187
    edited December 2011
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    Lore81,

    Yes, I had about 20 and did WBR - I was doing fine until, as you can see from my post above, I'm now very much not doing fine.  I don't know how successful the WBR was because I will not be scanned for another month, I think.

    Barbara 

  • Lore81
    Lore81 Member Posts: 13
    edited December 2011
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    It might be the side effects my mom was really tired and weak also when she finished in Oct. Although she hasnt lost her appetite. I guess its the decadron shes always hungry. She also wasn't supposed to get a scan until about Jan. Dr said wbr still keeps working for a few months after but she had to get the scan due to her headaches starting again. Did you also have headaches or how did you find about brain mets.Ok sorry had to go back and read (had already seen it but had to make sure it was you). I see you didnt have any symptoms.