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Brain Mets Sisters

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Comments

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    thank you alesta...im the same if iim on me knees i cant get up ...sometimes i even get a feeling like my legs are getting pushed from under me and have landed on my bum :/...

    i had a call from my nurse and i have to go in on thursday to chat with doc as far as i can make out they havent found anything just want to discuss????

    thanx again.

    .tracy..xx

  • uoppal
    uoppal Member Posts: 12
    edited October 2012

    sbidalia - so sorry to hear about your daughter's new tumor.  I'm glad they did the rad so quickly and I hope they find the right chemo for her.  

    tracy108 - I've had problems with my legs/ knees too.  My knees are shot.  No such thing as squatting anymore.  Don't know the exact source of the problem, but interesting to hear that so many others have experienced the same thing.  To top it off, I have neuropathy in my toes and balls of my feet from Abraxene - makes balancing interesting sometimes!

    dearjilly - my brain mets was found in sep too.  I'm finishing my 3rd wk of wbr this week.  I totally understand the sense of bewilderment and getting adjusted to the idea.  I actually got a xanax script and that helped me through the first week of rads.  What is your treatment plan?

  • dearjilly
    dearjilly Member Posts: 73
    edited October 2012

    Tracy.....I blame it on the steroids too. Today I couldn't lift my knee. So painful.

    Uoppal, I take ativan to help me sleep with the steroids. It helps, but my little one won't let me sleep. Good thing my momma is here to help! :-) I just had one treatment of radiosurgery on October the first. Now it's a wait and see how that worked, type of thing. I go for an MRI in two months.

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

    yeah... my legs are really weak.. i used to always bound up stairs two at a time.. i can hardly walk up now... i can but i need a handrail.

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

    We age faster.

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    hiya ladies.....had appointment yesterday to go over my scan results and another today to go over treatment as the reason the weakness in my leg is small tumours showing up in/on my spinal cord...:/....i am having rads on monday even though the doc says she has no evidence that it will work ..i asked if it was like 50/50 and she said no much less eeekk...so we are going to do it any way...and apparently chemo doesnt work there either,,at this point my head went blank and all the questions i had bolted out the door and i just sat there..to scared to ask what i really wanted to ask..

    do any ladies on here also have it in there spinal cord and have any advice or ideas on what sort of treatments i could have?....i am currently having herceptine once every 3 weeks...and a pill for me bones...

    thank you

    tracy.xx

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

    (((Tracy)))). I bet it works. Try to get good sleep, darlin.

  • formygirls
    formygirls Member Posts: 154
    edited October 2012

    Tracy,

    Sorry to hear this. I just went through six cycles of intrathecal chemo for leptomenginal mets. They are given in the spinal fluid. Is that an option your onc mentioned? They do a spinal tap every time they give the chemo. Some hosp give through a port in the brain but my onc likes to do it through the spinal tap.

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    thank you k-lo and formlygirl

    i will make a note of that chemo you said FG and ask about it next week with my oncologist,,,xx

    can you live a while with this? i was scared to ask..kinda got use to it in me bones and it being managed by meds and even when i was told it was in my brain i got through it and became positive with all you ladies here...just need something to work on stay positive with...if ya know wot i mean...

    thanks again

    tracy,,x

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    formly girl where abouts in the world are you?....im in uk means i could use it when im asking?

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

    I know tracy im frustrated that no one will come up with eye mets to keep me company! But my wonderful Palliative Care doc offered hospice early this year. Now im stable w ned in brain and eyes. Hang in there.

  • formygirls
    formygirls Member Posts: 154
    edited October 2012

    Tracy,

    I am in CA (San diego). Intrathecal chemo is given everywhere with leptomenginal mets. The drugs they give vary depending on the onc but I know it is widely used in Europe. As far as prognosis, I did not ask my oncologist. At this point, since I have brain, liver, lung and bone mets already, these mets are yet another thing and you can die only once:)

    I try hard not to think beyond today and just hope that I can stay in tx as long as possible. I just go through the day and focus on mundane things on eating, reading and TV. If I think about my family, life and kids, it gets too overwhelming and I can spiral down quickly.

    I hope you start to feel better.



  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    formlygirl i have it in all the same place apart from lungs....how long have you had it in these places if it ok to ask.......

    i to sit at night and do all the omg wots gonna happen to my kids...im blubbing now just typing that...

    love tracy..x

  • formygirls
    formygirls Member Posts: 154
    edited October 2012

    Tracy,

    I was dx stage 4 in Feb this year with lung, liver and bone. Brain in April and spinal mets in June or July. I do not recall the date. It is all a blur. Hang in there. Hugs.

  • Hopbird
    Hopbird Member Posts: 25
    edited October 2012

    I'm going to say this again for anyone that may have missed my post this Summer.  My radiation oncologist (who prescribed the steroids) didn't tell me, but my medical oncologist did...you probably already know this but...

    Steroids have their biggest effects on the thigh and shoulder muscles.  That explained a lot for me.  My oncologist recommended that I do stuff (exercises) designed to make them stronger!  They will affect standin up, going up stairs, etc.

  • Tillycat
    Tillycat Member Posts: 57
    edited October 2012

    Hi Tracy108

    I know that spinal mets are not necessarily the same as brain mets but I was diagnosed with mets in cerebellum + lots of other places in brain in 2010. I have had gamma knife treatment and I'm still here 2 and a half years later. Lots of the ladies on here have had brain mets for some time. Maybe you should file your spinal mets away under the heading 'CNS mets'. Then you are the same as the rest of us and therefore you could go on for years. The cns mets were diagnosed after mets in the liver (2009)then bones and lungs (2010). I am a bit up and down recently but health wise I am doing ok at the moment.

    I have heard of the spinal thing for chemo - i think they do it at Kings College hospital in london (+ lots of other places probably, its just thats one i am sure i heard mentioned)

    I'm in the uk and planning on going to the BCC secondary breastcancer awareness day in London next Thursday - apparently there's going to be about 28 of us there, any chance you could make it?

    Hi to everyone else on here. I'm still reading all your posts, I just haven't been doing much so haven't had a lot to say :-). I've been out of hospital for about 3 weeks and feel pretty good. I think I'm getting the hang of doing the blood thinning injections - dont get big bruises any more anyway

    Hi Apple - sorry to hear you can't do your stairs two at a time any more, I think that has been beyond me for a while :-) I took my son Toby to visit a potential secondary school last week they had a lovely chapel, the music teacher demonstrated and then let toby have a go on the organ there. He absolutely loved it and now wants to go there because it's the only school that will offer him organ lessons, fortunately the school seemed to have lots of things that I liked too. The organ looked incredibly difficult, how old were you when you started to learn?

    Cheers

    Tillyx

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    thank you tilly ...im trying to look things up and know i shouldnt...but i think ill do wot you said..for how ill i am ment to be i feel very well have only lost power in my left leg and am somehow managing to cope...im going to have radiotherapy tomorrow to the spine although they reckon it wont help there is always a first...im having 5 treatments in one and have been warned it could wipe me out for a few days...:(

    i would of loved to have met up but im actually in northern ireland so not exactly a bus ride..sorry...

    all the breast

    tracy..xx

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    morning ladies....had my 5 doses of radiotherapy yesterday and was achey yesterday but seem to be ok today still a bit wobbly on the legs but then i didnt expect miracles..:)

    did get a slap in the face though..asked my nurse to send me (text) what the name of the cancer i have now is so i could do some research..OMG PEOPLE SAY DONT GOOGLE EVEN ME....WOT A NUM NUT...

    so im here again to try and get some possitives ...i now have    leptomeningeal metastases...does anyone on here have that...heard of that or anyone that has it...im at my wits end by what i have read i'll be gone before christmas.....help please..

    tracy..xx

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    formlygirls i have just seen we have the same again..xx...wot have they told you?

  • sbidalia
    sbidalia Member Posts: 25
    edited October 2012

    Hi Tracy

    My DD, Suzanne, also was diagnosed with leptomeningeal mets back in about January 2012. And she had just finished WBR. Like you, she also had mets to the bones and liver. Like you, I googled it and also was told by doctors that she had just a few months. She was sooo sick, hospitalized and hard to rouse. The wonderful doctors at UCLA really jumped on it and the same day she was given a spinal injection of methotrexate. She didn't like that so off she went to surgery where they installed an Ommaya reservoir and ever since has been getting Herceptin through it every 3 weeks. In addition she takes Tykerb. And here is the miracle part...no further sign of lepto mets and she is doing very well today. (they did just find a regrowth of a brain tumor that hadn't got completely zapped before but they just did gamma on it). She manages a household of 7 children, cantors at her church and is a treasurer there, gets the kids to football, cheerleading and gymnastics...in other words almost normal except for some short term memory loss and afternoon fatigue (who wouldn't with 7 kids?). So have hope, Tracy. Those statistics don't account for new drugs and procedures

  • formygirls
    formygirls Member Posts: 154
    edited October 2012

    Tracy,

    I do have leptomenginal mets. I know it is bad news but my neuro onc and I do not discuss prognosis. When it happens, it will happen. I try to treat it like another met. My onc has patients he has been treating for a couple of years and when I see him we just discuss side effects and treatment. My neuro onc is very agressive and will not discuss timelines and i do not push this topic. I just completed six cycles of intrathecal chemo for leptomenginal mets. They have decided to hold off treating my brain mets since it would only be palliative and would affect my quality of life. They will only radiate if I start having symptoms. I have scans every few weeks. So I have learnt to not think about my untreated brain mets and leptomenginal mets and just go about my day. My regular organ mets give me enough to worry about:)



    I hope you and I will be here for Christmas this year and many more after that. But if not, I cannot do anything about my expiration date and am struggling to give up any perception of control I have about it. Do you remember this song from your childhood? I used it sing it a lot...



    Que Sera, Sera,

    Whatever will be, will be

    The future's not ours, to see

    Que Sera, Sera



    I do have moments when I shed rivers but mostly I am numb and like a robot and try to be in treatment mode. I stay in the world of TV shows ( thank god for netflix and iPad).



    Please do not google or research this. It serves no purpose but makes the present much harder. Please Pm if you ever want to talk. I am a basket case many days. it is always easier to give advise! now i need to take my own :)

    ((Hugs.))

  • acia
    acia Member Posts: 1
    edited October 2012

    My mum was diagnosed with ILC and leptomeningeal metastasis was only side of recurrance (then also bone mets were found). She was treat with WBR and intrathecal chemotherapy (ara-C, MTX and dexamethasone). Intrathecal chemoterapy was given by repeated lumbar puncture. She was treated 2 years. She was without pain and headaches and has almost normal live until her dead in March. I miss her so much...but now I have an angel....

    All the best...

  • dearjilly
    dearjilly Member Posts: 73
    edited October 2012

    Hello everyone,

    Did anyone experience some tingling in the brain after the radio surgery treatment? Once in a while I get the tinglies here and there. I'm hoping it's the swelling going down. I am tapering off the steroids, so that could be it too?

    Jill xoxox

  • banjobanjo
    banjobanjo Member Posts: 187
    edited October 2012

    No, but I remember a couple of times I got chattering teeth just afterwards, a kind of electrical reaction when I closed my jaw.  It went away in a few minutes but was a bit disconcerting.

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    morning ladies....

    after a week of blubbing and falling over i have decided to kick meself up the butt and get on with things...like FG has said it will happen when it happens...feel really well so i suppose thats a positve straight away...need to move house again so not really looking forward to that job but i cant do the stairs here so unless i want to use a bucket i need a down stairs shower etc...have read some positive stories which has also helped..

    i have a extreme dose of rads on my back on monday and so have been stuck in the house for the week and im going stir crazy..walking is very slow as im trying to stay upright and im now shuffling up n down the stairs on my bum so i dont fall down them..never thought id be scared of the stairs....

    does anyone just drop where there legs go from under them?

    well thats me lil ramble for now...thank you all for your advice it has really helped

    all the breast

    tracy..xx

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

    Darling Tracy, what a positive attitude



    I did have rads to back. Can only say that if you get T12, L1, you could feel nauseated. They told me I would get diarrhea but nausea caught me off guard. Report SE's- they can slow down the dosages.

  • dearjilly
    dearjilly Member Posts: 73
    edited October 2012

    Tthanks, Banjobanjo :-)

    I guess we all experience some weird feelings here and there. I am just having trouble with my body aches now that I'm off the steroids. Decadrone is one powerful, awful drug!

    Jill

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

    By the way, my photo <  in avatar was taken on the way back from MBCN last year.   I had a tall guy take another this year.......Foot in Mouth

    Oy my eyes look 40 years older.....   well, they are older but i think the edema from rads really funked them up.   Oh well maybe it will go away.  the only other eye metser I know of told me she went to the lymphedema clinic and they helped a lot!   She had to force her Onc's hand to refer:  ADVOCACY!

  • Formymomal
    Formymomal Member Posts: 6
    edited October 2012

    Quick question for you ladies. My mom was put on anti-seizure meds to "prevent "seizures even though she never had them. She has had some side effects from them and they have switched her from keppra to vimpat and now lamictal. I work as an NP and from my knowledge, unless shes had a seizure, she doesn't need anti seizure meds, especially with side effects that alter quality of life(gait issues, intention tremor). What's your experience ladies? Would appreciate the feedback.

  • marieibrahim
    marieibrahim Member Posts: 52
    edited October 2012

    dear formymomal

    i agree with you ,anti-epileptics are not given in precaution,unless the brain tumor is located in a high risk area,such as the temporal lobe,,also the anti-ep drugs cannot be stopped easily if you had them for  quite atime, may be a  neurologist could help,

    wish your mom allthe best ,and you the strengh to be with her,god bless you

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