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Brain Mets Sisters

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  • alesta29
    alesta29 Member Posts: 240
    edited July 2012

    1 teeny WBR done and I have slept for hours! Guess I'll drop the sedation tonight and see what happens and have negotiated for only 2md Dex per day so whay hey!



    Hang on in there Spark - ill be coming along asking you for all your top tips soon!



    Waving to all from a slightly damp Olympic city but the buzz is great!



    Lx

  • Cathy2
    Cathy2 Member Posts: 40
    edited July 2012

    Alesta glad to hear you sailed thru first WBR, that mask is freaky! Makes me feel like some Alien project! I had my third one yesterday and have been sleeping quit a bit. They have me on 12 mg of Dex so I take an Ativan .05 at night just to make sure I sleep, sounds like I need to drop that and see how things go. I'm not working as of last week so no where to be in AM if I don't sleep!

    I bet the Olympics keep it buzzing, how exciting!  Good luck brain met sisters!

  • wannabe
    wannabe Member Posts: 3
    edited July 2012

    Hello,

    My mom had Thursday her second cure with Taxotere (after 3 EC).

    Yesterday we were at the hospital for a blood analysis. In 15min after she gave blood, she told me she's feeling sick, and then she fainted. Everything lasted about less than one minute I think, but because i was so panicked and scared, I can't remember so much details. I remember I was screaming for help and screaming at her to wake up.

    But, I THINK she had a seizure, although I'm not sure at all (maybe 1 or 2 spasms right before she woke up). And during this, she breathed like she was about to vomit. Also she did pee a little. After she recovered she asked what was happening, she felt like vomoting again. I gave her some water and then she was feeling sick again but I kept her awake and she didn't faint again and started to feel ok.

    They took her to ER. BP was ok, heart rate a bit high - 88. Potasium low and glucose high. Everything else normal. They hydrated her, a neurologist came and after a clinical exam he told us everything looks normal, and this could have happened because dehydration (she doesn't drink enough water - 1-1,5l / day), a SE from chemo or brain mets. He recommended brain MRI. He also told us epileptical episodes don't came "announced" (by a sick feeling).

    She don't have another symptoms at all.

    I'm scared. During her EC cycles, a skin met appeared and I don't want to think that this episode might be brain met related Cry

    Her onc is on holiday so we can't see her right away.

    Does this sounds familiar to you? I'm sorry for my long post and for my mistakes (english is not my native language).

    I need your advice.

    Thanks!

    L

  • spark
    spark Member Posts: 27
    edited July 2012

    This is pretty much what I eat:

    rice w fried egg. toast w peanut butter, maybe a tiny jam, rice noodle soup, yogurt w some granola and fruit, bananas, rice porridge, homemade chicken soup. 

    I am Korean and a foodie so it has been torture for me to resist eating spicy foods or just food with real flavors since my parents and my sisters have been taking care of me and they get to eat all the good stuff! but really I feel afraid of the food bc I have already thrown up 3 times, and now am fighting diarrhea. 

    2 more to go... 2 more to go... 2 more to go...

    I also cut my decadron to just 1/2 tab starting yesterday. it is tearing my stomach up. and i do take ativan at night to help me sleep. i didn't need to the first couple of nights, but at that time I was taking 4 decadron and it kicked in quickly so then i couldnt sleep. 

    Alesta, just the idea that I will be able to give someone else tips seems crazy to me bc I feel and sound so pathetic on here! I feel like I am constantly asking jodi and banjo the same questions! when will i feel better... when will i feel better... etc etc... 

  • tracy108
    tracy108 Member Posts: 45
    edited July 2012

    hi ladies.....

    .i would like to ask a lil question please....

    i am on #4 tax and #4 herceptin as i type no sickness(touchwood) my problem and its driving me mad is my stomach...i look like im due to pop...im not constipated(sorry) just swollen...does anyone else have this or had this? what did you do or use/take ? does it go down after treatment ends any advice would be greatly recieved..

    hope you are all in good form..

    tracy..xx

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited July 2012

    I kinda look pregnant too.  I don't have the muscles to suck it in.  I don't mind being a little heavier, but this weak ol'body can't pack it around.  Spark, eat whatever you want.  This part will pass.  I am so glad your family is cooking for you.  I had my friends and family deliver meals for four months!!!  I hope they have given you something for the barfs and diarhea.

    K lo eat anything.  We need food.  If it's staight up junk food, so what.  Your appetite will come back, but like my doc said, you don't eat, you don't live.  Try to stay hydrated too  This is such a pain!!!  Off to lunch with a friend.  Talk to you ladies later.  Hugs  Jodi 

  • reesie
    reesie Member Posts: 413
    edited July 2012

    Hi guys. This being tired is for the birds. I just wanted to check in and let everyone know that I've been reading just too tired to post.



    Geez, too tired to type - just goes to show how tired I am lol.

  • Tillycat
    Tillycat Member Posts: 57
    edited July 2012

    I'm with you on that reesie, I've been reading all your posts too.

    Feel like I've gone from bed to sofa, sofa to bed for a month now - and that's only because I think that walking up and down the stairs gives me a bit of exercise

    So, so tired 1 month since gamma knife, hopefully will start to feel better soon.

    I have tried to eat well but at the moment if if I fancy it then I have it.

    Little bowls of ice cream seem to be going down well, can't drink coffee as it tastes weird. Such a shame I used to enjoy it and my nutritionalist said that there was some evidence suggestion 1 or 2 cups a day were good for brain mets

    M :-{

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    So,we went to Jack London State Park, Wolf Den, if you will.  Sat on this incrediblle deck with tons of blooming potted plants.  Lots of natural and un natural shade.  There is a beautifully manicured creek, running down one side. Had a burger, fries and a beer!  Then, because I am always hungry, I had a warm caramel sundae.  Went with a great girlfriend, who is always dieting.  Bummer. My lunch was scrumptious, even if I am still starving.   Hey!!  Our 2nd son is officially a Paramedic.  Super Proud!  Just blathering waiting for the doc to call with results and new chemo.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    I was put on the latest greatest chemo, with herceptin.  It just came out about 2 weeks ago.  Supposed to knock the little buggers for 7 months or so.  Anyone know about this?

  • PJB
    PJB Member Posts: 150
    edited August 2012

    I, too, am figuring eating ice cream is better than nothing. (I can do yogurt in the morning, but nothing else really sounds good) I make sure I eat SOME fruit every day, but otherwise it's just whatever sounds like I can get it down.

     Jodi, sounds like a great day. And what is this latest and greatest? Affinitor? Oops, since I know I'm likely to start Abraxane next, I thought I wasn't supposed to take another round of Etoposide.

    Turns out I am, so I start it again tomorrow and will be about halfway through it during my next scans (brain MRI one day, liver and bones the next. Etoposide kicked my blood counts really low, but I got my counts done again yesterday and they are higher if not QUITE normal (except for the ones that are TOO high but I'm ignoring those). Can't wait for those mouth sores and to feel really tired again....

  • spark
    spark Member Posts: 27
    edited August 2012

    I wish I could eat! I have a weird taste in my mouth and this numb chin thing makes my teeth numb too so unfortunately I am unable to enjoy any food. plus, I threw up again today and just have diarrhea so I try to eat literally as bland as possible. tomorrow is my last WBR.

    my stupid jaw hurts. the 3 times they have already zapped it have made it even MORE numb. 

    Jodi, I know nothing of this new fancy chemo... what's it called?? 

    Speaking of chemo... that is the next step for me. I already did AC/T and Cisplatin. What will they give me now? with the brain mets, bone mets, lymph nodes mets... sigh... I can't believe they will get rid of ALL the cancer. is being NED impossible now?

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    The new chemo is called, T-1DMI.  At least that was it's trial name.  I tried a while ago to get in the trial, hoping I would receive that drug, but  alas, I got the comparison drug.  I failed the trial!!  I am excited to get this drug.  It looks promising, as far as keeping the fires out.  Not a cure, but might give me some more time.  Look it up.

    Spark, what is NED?  And I am so sorry about your darn chin!!  Does immodium help with the other side effect?  I think about you everyday.  I cannot wait to hear you laugh.  I didn't laugh for a while either.

    PJB, It is good to ignore things.  We have so little control.  Dammit.  Just as long as you can receive your treatment.

    Genentech and Roche are the Companies, who make this new chemo. Our oldest son will be here for 5 days, starting tomorrow.  Let the fun begin!!  All four of them?  At once?  OY.  Hugs  Jodi 

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    Great to see so many posts from you all but too whacked and wobbly headed to reply to all.



    Tracy I'd get the distension checked out as italy be a bit of fluid sloshing around - or maybe just wind!



    Jodi hope the chemo is gentle and gives you more gallivanting time out and hey congrats on another kid doing well!



    Spark I don't have the numb chin but after 2 my salivary glands seem to be drying up and my jaw hurts but then the mask is incredibly tight.



    Paula I went to one of those ice cream parlours where the stuff is plied about 6 inches high. Thing is it always look better than it tastes - think I need some jalapeño flavour to taste it!



    Cathy - 12 (Twelve) mg Dex? Jeez I'd have murdered somebody on that or would be out directing traffic in the middle of the night! I took 4 mg the first day then Paulo (cute Oz/Italian doc with great sense of humour and winning smile) said I could drop to 2mg for this week and next and then taper. I think there is always room for negotiation.



    Melissa / Marie keep chilling on the couch as long as you need to. Hope you're getting waited on...



    Wannabe

    Could have been anything like you say - reaction to chemo dehydration etc. keep calm and don't jump to the brain mets conclusion. A MRI should tell you what you need to know. Hope your mom is feeling better soon.



    Waves to Barbara and Kathy!



    Gotta get ready for my photo shoot today... Better not cry during the interview. At least I still have a little hair to style, a dress to cover the worst of the fluid, a bit of red lippy but not sure how I can hide the half arm purple bruise from cannulation when I don't have a cardi to match the dress. Hmmm so vain!



    Laurie x

  • Tillycat
    Tillycat Member Posts: 57
    edited August 2012

    Hi laurie

    So glad to hear you are doing the photo shoot/ interview thing for breast cancer care. it's good that they are doing stuff about women with secondaries.

     I am sure you will look lovely.  They can always airbrush out the bruises (!!!!) although maybe they should be there, like a medal of honour ;-)

    I was asked to do an interview for the Bristol cancer centre as one of their 'survivors' who had done the moonwalk (it was for Women and Home magazine) when i told them (over the phone, background info/medical history type stuff) I had brain mets they decided they didn't need to interview me after all - too scary/depressing for their readers? Or maybe I didn't count as a survivor any more!!

    Mx

  • banjobanjo
    banjobanjo Member Posts: 187
    edited August 2012

    Laurie, big wave back to you and hope you can post your photo on here or at least direct us to it online so we can read the interview as well.  Good luck with it!

  • formygirls
    formygirls Member Posts: 154
    edited August 2012

    Lots of updates! I am sorry I do not post much. I read religiously many times a day but am too tired to post. My fingers have bad neuropathy making typing on my IPAD a challenge. I have another brain MRI this Friday. They just keep doing MRIs. They have not started my WBR yet even though I had my fitting a while back. I am on daily 16mg dacadron and I HATE it. I cannot sleep at all even though I have tried so many sleep meds.

    Spark, you are sounding better and will soon be giving me advise on how things get better with WBRnwhen I start mine. I have had only gamma before so not excited by this.



    Laurie,

    I love your posts. They always lift me up. Dazzle them in the photo shoot.



    Jodi,

    TDM1 is a wonder chemo. I unfortunately do not access to any trials but my onc would love to get meon it if she could. I hope it works for you.



    Hugs to everyone. I have a marathon 10 hours chemo session today with SIX treatments!











  • apple
    apple Member Posts: 1,466
    edited August 2012

    the combo of abraxane and WBR made me lose 20 pounds in no time flat.  my onc. put me on megace and it helped my regain my appetite immediately.  i started eating a big lunch..  and would slowly eat yogurt and applesauce in the meantimes.. also drank soy milk, Ensure and Olvatine (yum)

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    Formygirls, it is my understanding, that drug is now availiable.  No more trials.  I certainly wouln't qualify.  Ask your doc.   Apple, so glad you're eating.  It makes you feel better! 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    I'm starving.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    My darling daughter brought me chinese for lunch.  That a gatorade, an It's It ice cream bar and a banana.  I ate almost every bite.  My hubby just called, asked if we needed anything, I told him I was getting nervous about our ice cream supply.  He laughed.  I meant it!!

    Today I had bars put in our bathrooms for safety and assistance.  I wanted one in our shower and one in our bathtub.  I now have 4 bars, 3 of which are useless.  I cracked up when I saw where the contractor put them.  Everything is either be hind me, or to the right.  My right side barely works.  Wait till my husband sees  what his handymen did.  Our kids have been laughing everytime they use the bathrooms. 

  • spark
    spark Member Posts: 27
    edited August 2012

    NED is No Evidence of Disease.

    is that a possibility when we are stage IV and have mets in so many areas? 

    I had my last WBR today. 

    then threw up and had diarrhea. 

    hard to feel celebratory. 

    for those of you that finished, how soon will i feel normal-ish??? i don't know if I am asking the same questions over and over again, bc I seem to need some reassurance, or if its bc I simply keep forgetting and it seems impossible that I will feel like myself! 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    I am so glad and happy it was your last WBR.  It was the worst treatment I have ever had.  But Spark, it's all up from here.  Hopefully, they have given you something for the belly issues.  You should not have to go through this.  Get lots of rest, and hang in there.  Don't worry about anything but getting and feeling better.  It will all still be there, when you're feeling stronger.  I really was just like you a few months ago. Lots of gentle hugs.  Jodi

  • banjobanjo
    banjobanjo Member Posts: 187
    edited August 2012

    Spark,

    Be kind to yourself and be patient.  Don't push yourself to do things unless you feel like it. Have friends round for short visits (this really cheered me up and didn't tire me too much) - coffee, cookie and half an hour's chat does wonders when you are feeling rotten.  You will feel better.  You will.  Say it!

    Barbara 

  • apple
    apple Member Posts: 1,466
    edited August 2012

    spark... give yourself a few weeks.  It took me a couple to even begin to feel normal.

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Hey, I had forgotten about applesauce.  Its wonderful, hydrating, doesn't aggravate the big D, you can warm it, spice it.  There's some in  my frig, but out of sight out of mind.

    my latest struggle is pre-cleaning for cleaners.  I know I'm lucky to have cleaning but if I don't pick everything up, they cant do it right.  BIG DEAL: ask DH to spend this evening helping me.  He will hate it but he will do it for poor ol Kathy.

  • spark
    spark Member Posts: 27
    edited August 2012

    Hey did folks lose their hair from the WBR?

    also, have people taken Xeloda as chemo? That's what my onc is considering for me.. 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited August 2012

    I have taken xeloda.  It was fine for me while it worked.  And yes, I lost my hair from WBR.  It is just coming back and I will be losing it again.  Dammit.  Having my last eyelashes extended today, along with eyebrow shaping, and pedicure.  It will be a beauty parlor day.  Kathy, applesauce sounds super good.  It is on my list.

  • tracy108
    tracy108 Member Posts: 45
    edited August 2012

    i lost my hair about a week after wbr....havent lost eyelashes yet with chemo have 2 more to get so will probably lose them soon...but am sure i lost them sooner with fec..im on tax this time....cant wait to start getting my hair back...i will wont i???....

    stomach is still swollen..:(

    tracy..xx

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012
    Tracy, when i look in the mirror, I see your avatar.     Undecided

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