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Brain Mets Sisters

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Comments

  • Surly
    Surly Member Posts: 73
    edited January 2013

    Congrats, Tiger Blood! I have my first follow-up MRI in two weeks (had gamma knife in mid-Oct) and am holding my breath. Yesterday my onc said she really didn't think there would be new spots bc the original three were quite small and found incidentally. Still...

    So do you get scanned again in 6 months or how closely do they watch?

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited January 2013

    I get scanned every 3 months. They watch me pretty closely. I have 7 very small mets in my brain. I had a PET last month and had progression so I was so sure that I would have progression in the brain. I was Pleasantly surprised!

  • Segolene
    Segolene Member Posts: 8
    edited January 2013

    I am posting here as I am very worried for my mom. She has stage 4 BC. She has been on pertuzumab+herceptin+taxol since July. She had been doing quite well on this combo until Christmas. The scans were becoming better and better. 

    But mid-December she started to vomit, have headaches and problems walking. They discoved brain mets (quite a few I think). They stopped everything and started Xeloda+tykerb right away. The thing is her general state is not good right now. She sleeps all the time, barely eats, seems confused. 

    Could she that sick from the medication itself? Or is it the brain mets?

    Thanks so much for your help

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2013

    Segolene - it's hard to say whether it's the chemo or the brain mets causing her problem.  Has she undergone whole brain radiation?  The radiation can cause side effects but it also helps to relieve the effects of the brain mets.  The vomiting could be either brain mets or chemo, the confusion and trouble walking are most likely brain mets.  What are they doing for the brain mets? 

    Can you accompany her to her oncologist appointment and discuss this with her doctor?  She should be getting some treatment specifically for the brain issues. 

    Hugs to you and your mom,

    Michelle

  • Segolene
    Segolene Member Posts: 8
    edited January 2013

    Michelle, thanks you so much for your response. 

    No she hasn't gone through brain radiation. I am not sure why. Besides Xeleda and tykerb they have given her steroids. But that's it.

    I live 10,000 miles away from my mom, so it is hard to know what's going on. She is so tired that I can't even speak to her on the phone any more. I know she is well taken care as she is surronded by family, friends and doctors. She lives in France. The doctors there seem good medically, but very bad at communicating. It seems pretty hard to get a straight answer from them.  

    I don't understand how her state has deteriorated so quickly. I visited her last month and she was doing great.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2013

    Segolene - I can tell you that I went from "just fine" to a wobbly confused mess in a matter of days when my brain mets were discovered.  The steroids should help relieve any brain swelling and I was told that you don't normally do chemo at the same time as brain radiation.  The radiation oncologist likes to have 2-3 weeks between chemo and rads.  I was lucky that I had been taking an oral drug and was able to start immediately on radiation once the mets were discovered.  Then I waited 4 weeks before starting IV chemo.

    Can you send an email to a family member with your questions?  Someone who will accompany your mom?  That way you can get some specific answers to your questions.

  • Segolene
    Segolene Member Posts: 8
    edited January 2013

    Thank you Michelle for your post. Your explanation makes sense.

    I really would like more info from my family. But they are "old-fashioned" and a little crazy Laughing. They don't do internet, email, even texting! 

  • tracy108
    tracy108 Member Posts: 45
    edited January 2013

    hi segolene

    im also on xelode and tykerb for brain and spinal tumours...they made hate food and diarhea was a nightmare was even on a drip for 36 hours before xmas as i was wasting away (lack of food) they lowered my dose and so far touchwood i have been ok....just a bit tired at the minute as i have just started them again

    hope all goes ok for ya mum..x

  • Segolene
    Segolene Member Posts: 8
    edited January 2013

    Thanks Tracy108 for sharing your experience. I think that my mom is/was in the same boat as you: food has became her enemy. She has been on a drip, at night only, for the last week as she was so deshydrated. Hopefully they can adjust her dosage. She sees her oncologist on Wednesday, hopefully they can make some adjustements then.

    Thanks for your kind words.. It is just so difficult to be so far away from her. Hope all goes ok for you too.

  • Segolene
    Segolene Member Posts: 8
    edited January 2013

    I got more news for my mom: she will have a brain MRI on Thursday. If there is progression she will have radiation next week. Her condition seems somehow stable, not worst but not better either. It seems that the doctors are pessimistic. But they are always pessimistic in France! So it is very hard to know what's going on.

    I am wondering now if I should go back and visit her. I know that my dad would like it and would welcome the company, but I also know that it would really scare my mom.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2013

    I wouldn't worry about scaring your mom-you can always fib and tell her it was a good price for a plane ticket.  Or the timing was good for work or whatever...  the important thing is that you'll see her and you'll know what's going on.  All doctors tend to be a bit pessimistic about brain mets.  But there are women who live many years after being successfully treated, so don't lose hope.

  • Formymomal
    Formymomal Member Posts: 6
    edited January 2013

    Hi all, Just wanted to give you an update on my mom. She just finished perjeta/herceptin and taxotere and is now just on perjeta and herceptin. Her scans are much improved. She started with 25 tumors and now is only left with 3 from brain radiation. Her short term memory isn't great but overall, she's ok after (it's been almost 6 months). Here are some quick blurbs she typed up:

    Food tastes better if eaten with plastic utensils, at least at the beginning of the treatment. I have a port and although I only used it for 3 chemo treatments I will need it for follow up infusions. The surgical preparations are scarier then the actual port. Lemon candy is good for metal mouth. My scans show great improvements except 3 pesky brain tumors. I started with 25...so that's not bad. I have been left with a lousy tremor in my hands. I have consulted an amazing onconeurologist and we are reducing the anti seizure meds very slowly. It could be trom the brain radiation, chemo, or any number of little things mixed together to cause the tremors. Stay away from me if I am eating hot soup. When I was on heavy steroids I told my husband to NEVER ARGUE WITH A BALD WOMAN ON STEROIDS:
  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Tiger...    congrats on a clean brain. baby.

    Surly. keep up the positive thinking.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    OK, YO:   Need quick summaries of those who had WBR and felt ok or that it was worth it.....    you get my drift.   Im planning to just say no, but would love to hear from yall.   thx     If you dont mind, rate first, second times?

  • formygirls
    formygirls Member Posts: 154
    edited January 2013

    Kathy,

    I have the same question. Have been told to get WBR next month. I have many brain mets since April but have not been given WBR since they did not want to impact QOL. However, they grew again last week so neuro onc thinks time to do it. Wants me to repeat MRI in 4 weeks and then do if it has grown again. I have way too many for gamma. I want to get it done(not really but..)as I hate walking around with so many tumors in my head that just keep growing but everyone in my team has said no so far because they said it would just grow again and my QOL would be bad. I have been asymptomatic with widespread systemic disease so they have focused on that.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    FMG,

    Okay, so, most of your doctors say "no" to WBR but someone said its the thing to do?   Or do they all suggest waiting a month or two?   How did you get a Neuro Oncologist?   Im at a big center but I never hear this term.   Im happy for you to have one, my friend,

    That's a bit the opposite for me except that this time the opinions are filtering thru the NS's NP who wasn't part of my initial team.  When I first presented to Rads Onc, she said she and NS agreed that they should not use WBR because its destroys too much, etc, and this is a chronic disease, etc.    So they did two rounds of Gamma, no new mets popped after that and we were all happy.

    I kind of SENSE that No one would do Gamma Knife repeatedly.     But until I talk to my Rads Oncologist, I don't think I will fully grasp this.   And I will not take WBR.   We've had such miserable symptoms coming from our sisters recently, no thanks.

    Still I want to hear from as many who will drop a quick opinion based on THEIR own experience.    If its too much trouble I'll search and weed thu the notes.

    K

  • formygirls
    formygirls Member Posts: 154
    edited January 2013

    Kathy,

    It takes a village to treat me:) I have my regular MO, Rad Onc and a Neuro Onc. I go to a NCI cancer center and it has two neuro oncologists. I see the neuro onc every month. They all have been anti WBR since I got dx in April because of QOL issues. I had multiple brain mets. I got some gamma tx then. Since then I had had MRIs every two months and new mets keep popping up. Sometimes the scans are stable. They have given me intrathecal chemo for six cycles. Kept saying that WBR would not be helpful. Last week, scans showed growth again. Now the neuro oncs are saying it is time to do WBR. But they still want to wait for 4 weeks and scan again before they decide. There are more details that I have skipped over but so far have stressed the need to focus on systemic disease control vs WBR. That was possible because I did not have symptoms. DH is opposed to WBR but I do not think I have a choice anymore. My team had said that they would rather do gamma repeatedly but I just have too many mets now. They may change again after the next scan. Sorry if I am not coherent..hard to explain all the issues.

  • Surly
    Surly Member Posts: 73
    edited January 2013

    I'm also curious about WBR because I think it may be in my future.

    Formygirls, if you're getting WBR, do you have to halt other systemic treatment while getting it? If you do WBR, have they told you how long your course will be? 10 days? 15? 

    I'm so sorry that you have to walk around with all those mets and wondering/worrying. I think I'd feel the same way, that I didn't have a choice about treating. I had thought that WBR, while it can have a lot of unfortunate SEs, can also be sort of preventative, whereas gamma is only going to get those that are visible. While I had three that were 2 to 4 mm in size and gamma zapped, I wonder how many I had (have?) that weren't visible because they were a small fraction of that size. 

    Good luck with your decision. Check back.

    K-Lo--so have you had gamma knife or some other stereotactic(?) procedure but have not had WBR? Are you on the cusp of needing to choose a treatment?

    S.

  • alesta29
    alesta29 Member Posts: 240
    edited January 2013

    I had 4 small mets diagnosed last June and had 5 sessions of WBR which was very doable. Have had a few headaches and flashing lights again over the past couple of days and fear they may have returned. I know they won't give me WBRvagain but hope for some targeted therapy for symptom control.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    So interesting, ty FMG and Surly.  Yes I had gamma twice and another type of targeted radiation with the intent to "avoid damaging other brain matter"     As I said, I wont be sure what to think until I hear it from my super-brilliant Rads Onc. 

      I believe we should all have that village, FMG.   We are complex!

    You know, if you hear of a bad outcome, you fear the specific tx related to it.  Ive heard thru the grapevine that 2 of my fav people here went down-hill directly related to WBR.   But we're too smart to think that way, right?   I know there have been others who did OK, its a little tuff to search their stories here....

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Alesta, I missed your post:   why do you think they would not use WBR again?

  • Surly
    Surly Member Posts: 73
    edited January 2013

    Alesta, would the targeted therapy be some other radiation?

    K-lo, that is scary to think about the connection between WBR and decline. The only thing I've ever been afraid of in my life is "losing my mind." I'm actually not that afraid of that anymore--or don't fret about it--but there is something evilly poetic about the prospect of that happening. 

    Thanks for starting this convo; I hope others share some experiences. 

  • alesta29
    alesta29 Member Posts: 240
    edited January 2013

    The radiologists I spoke to at the Marsden said that due to the possibility of permanent brain changes (eg Alzheimer's etc) they only ever give WBR as one series of treatment and then would treat symptomatically (eg if there was one or two mets causing specific QOL issues then threat those with cyber knife)



    Oddly since my WBR the only thing I have noticed which has gone is my ability to estimate the passage of time so if I fall asleep on the couch, say, when I wake up I have no idea if I've been out for 5 mins or 5 hours! When it happened last night, I asked my husband the time thinking it was around 9pm - it was 5.30!

  • sbidalia
    sbidalia Member Posts: 25
    edited January 2013

    Chiming in to share my daughter's experience with WBR. She had many tumors which had appeared very quickly and so was treated with 15-20 treatments, I don't remember. It did cause great fatigue for awhile but she did rebound. After four months she had leptomeningeal tumors and she received an Ommaya port for IT Herceptin which she still gets. Then there was a finding of 3 more small tumors and Gamma was received. Then, for the first time since all this cancer business started, her last scan showed that she was stable! She has resumed a very busy lifestyle managing all that 7 children need (driving, school work, school and sports transport) as well as singing in choir, going to Costa Rica, etc.) There are very small differences since her WBR, the main one being that her memory isn't quite the same. She also has trouble planning ahead and multitasking like she used. But she is just as bright and analytical as ever and her personality is unchanged. To see her and talk to her, unless you know her well, you wouldn't notice any change. God's blessings to all you going through this.

  • Linda54
    Linda54 Member Posts: 509
    edited January 2013

    Just wanted to let you all know that apple passed away on Sat Jan 12th.  She last posted here on Dec 16th saying that she was not doing good.  I heard this from Esteep.  She lives not far from apple.

    I do not know any details. 

    God bless each of you

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited January 2013

    My heart is broken for Apple's family and friends.  She was so entertaining and full of life.  May they all find peace in her passing.  

    I have some news from my neck of the woods.  They no longer have any viable chemos for me, and radiation is not an option for me.  Leave my head alone.  So, next step is palliative care and Hospice.  The only drug I am on is 1mg of steroid.  I feel pretty good other than i have no strength.  I feel like I'll probably come back as a snake with all the slithering I do.  I use my left side to move and kinda drag myself around.  I do not like snakes and I don't want to eat rodents!!

    Dr says less than 6 months.  What does she know?  I am super happy to not have scanxities and blood work ever again.  I am tired of this entire process.  I love my life the way it was and tolerate it this way.  Thank goodness I had a fabulous turn with this life.  Born pretty, educated, loved, beautiful marriage, and really nice, good children.  Well,for th most part with the kids!!!

    Again,  I send warm,loving, peacefilled thoughts to Apple and her family and friends.  xoxo Jodi

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Hey, Jodi.   Your words lift me up as you keep your humor in spite of all.   Wish I could give you a hug and keep you company.   kathy

  • Surly
    Surly Member Posts: 73
    edited January 2013

    Jodi, I'm sorry that you have no more viable chemos. But thanks so much for your post. I have read other posts of yours here and there over the months and marveled at your deliberate life-loving optimistic outlook. Going through all this with such humor and grace is no small thing. Best wishes to you and your family. 

  • Heba
    Heba Member Posts: 3
    edited January 2013

    Hello ladies, your stories are truly inspiring. I need your help, going thru a crossroad, onc are split on the decision of whole brain radiation or gamma directed radiation on the 5 brain mets seen in MRI!!!! Friend doctors advised against WBR due to side effects and change of personality, but other onc say it is the best treatment. Largest of my mets is 1.7x1.6 - quality of life is really important to be with my girls and not be a vegetable! Need your input and experience here whether I should go for WBR or gamma knife, whenever neededand leave WBR to last resort. Thank you ladies, keep the strength and power to move on and live our lives to the max. God bless you all.

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    Heba

    I had 5 brain tumors last Jan. largest was 4 mm. My RO started with gamma knife. My tumors responded and completely resolved. My RO does not like to start with WBR due to side effects compared to gamma knife which has a better SE profile.

    I have had 2 friends who had WBR and they struggle with balance issues and short term memory issues. I know it has helped many people but I remain afraid of it.

    For me gamma knife was the best solution and it can be done repeatedly if needed.

    I had a new tumor treated last spring and recent MRIs have been clear.

    Good luck with a very tough decision.

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