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Brain Mets Sisters

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Comments

  • justjudie
    justjudie Member Posts: 196
    edited January 2013

    Dear Jodi,

    what a brave lady you are. I can understand a feeling of peace about no more blood work, scanxiety, pain, drugs etc. I hope you will continue to feel better all the time now that you are off drugs except a steroid. Hope you have a long period of feeling well and happy with family and friends. I am thinking of you, Jodi. Please do keep us all posted on how you are doing. Many gentle hugs to you

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

    Surly, ty for the fact finding.  

    Jodi, what can we sy, but we love you and your unique spirit.

    Im confused   i want my magic bullet!    What about intrathecal just for plain old brain mets to bypass BBB?

  • sueopp
    sueopp Member Posts: 238
    edited January 2013

    Kathy, I have been lurking on this thread, mostly because I care about you and about the others who I have come to know by their posts and care about (hope it's OK - no brain mets for me -so far).  A guy named Marco has been posting about his wife's excellent success with intrathecal treatment, although it was with herceptin, and also was being done outside of the US.  I am a computer boob and don't have a prayer of figuring out how or where to find his posts, but betcha you could find them.  Sending good karma your way - SUE

  • sbidalia
    sbidalia Member Posts: 25
    edited January 2013

    Mario (Marvess) posts under the thread "Intrathecal (IT) Herceptin for Brain Mets. My daughter gets Herceptin thru an Ommaya port. The doctors at Cedars Sinai in LA give it to her for control of leptomeningeal mets she had. When she had a new brain met we asked if they could increase the dose but they clearly told us that IT only treats tumors of the lepto meningeal and cerebrospinal fluid but not the tumors in the brain tissue. But it sounds like Mario's wife is having sucess with regular brain tumors. So it is somewhat confusing to us.

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

    I had the brain MRI today then treated myself to a hot fudge sundae!  That MRI was brutal - 45 minutes of pounding plus the contrast injection and they wouldn't use my port so the stick was a little painful as she tried to hit the vein.  And then I was waiting for the CD so I could play RO but they were having a problem with the CD writer so I have to wait until tomorrow to see what I can decipher.  I have an appointment with the RO next Tuesday.  Luckily the rad center is co-located with Dana Farber in Londonderry so I'll get the CD in the morning.

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

    Aww, Sue, thanks.   You're my ol' Baltimore pal right?

    I will check it out and thanks  Sbidila.

    OMG  LuvRv.   treat yourself  to your favorite junk food, junk TV or booze!

  • SusieMTN
    SusieMTN Member Posts: 43
    edited January 2013

    Had my first Radiation treatment for brain MET's yesterday.  Radiation treatment went fine but I had THE worse back spasms ever and so was in awful pain by the time it was done.  So next treatment more pain med's and muscle relaxants are in order.  Tomorrow's treatment should be shorter as it is only one area. 

    Susie

  • sueopp
    sueopp Member Posts: 238
    edited January 2013

    sbidalia, thanks for making the connection re: the IT Herceptin for brain mets thread - all I can say is Chemo Brain made me do it (Marco v. Mario etc.).  Glad for the additional information, and hope that things go well for your beloved daughter.  And yup Kathy, it's me, your buddy in Balto.  Just check' n up on you.  Best to you both - SUE

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

    My PA took a look at my MRI this morning because apparently my pupils were not the same size.  And I was still having some nausea despite the full assortment of anti-nausea meds.  Apparently I still have brain mets, or new mets, or not quite gone mets Cry  I was put back on a small dose of decadron and I see the RO next Tuesday.  Meanwhile I had my normal weekly carbo treatment.

  • Surly
    Surly Member Posts: 73
    edited January 2013

    I'm sorry to hear this, Luv! I hope you get helpful news you can deal with soon.

    Take care. And kee the hot fudge flowing. 

  • formygirls
    formygirls Member Posts: 154
    edited January 2013

    Luvrving,

    This news sucks. This whole brain mets thing sucks! I hope the RO has a a good tx plan. Hugs.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2013

    Luvring- I am sorry.  I am sending you hugs from afar.  

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

    LuvRV....   do you mean your Phys Asst looked at your  MRI?   Plese hng on for the experts, the RO, Neurosurgeon, NeuroOnc?   

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

    Kathy - it was the Phys Assist but I think the MO took a quick look, too.  I'm betting they know what they're looking at.  Started me on a small decadron dose.  I'm guessing they know what they're looking at.  But the RO will get the final say.

  • Frapp
    Frapp Member Posts: 343
    edited January 2013

    So sorry to hear they may be back. Keeping my fingers crossed.

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

    OK, LuvRV, I'll try to have faith.  Still, hope its easily zapped hon.

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

    Yay!!! Saw the RO this morning and saw pictures of my brain.  There are 5 remaining mets, all tiny except 1 that is just 1 cm.  There's a little swelling around that one, the others are not causing any problem.  I will stay on 2 mg of decadron for a while but no further treatment is necessary at this time as they should continue to shrink.  She will order another MRI is 2 or 3 months unless I develop new symptoms.  She is going to talk to my MO about adding Xeloda or another chemo that crosses the blood brain barrier.  And she thinks any nausea I'm having is related to the chemo and not the brain mets. 

    This is the first bit of good news since May so we are all pretty relieved.

  • ssmith37
    ssmith37 Member Posts: 16
    edited January 2013

    Hello all.  Congratulations, Michelle!  That is great news.  I have a question.  I was diagnosed the day after Christmas with brain mets (3 small lesions on my cerebellum), but haven't had any symptoms so no treatment until we get the cancer in my lungs, bones, etc., controlled.  I have finished the last of my Abraxane treatments and have a PET scan scheduled for the 30th.  The question is:  is tongue and gum numbness related to brain mets?  Has anyone experienced this?  The tip of my tongue was numb a few days ago, and for the past couple of days, my gums have felt numb.  It feels like my mouth is coming down from being numbed by the dentist. Very strange.

  • ssmith37
    ssmith37 Member Posts: 16
    edited January 2013

    Another question is about hot flashes.  Of course I had severe, whole-body hot flashes with the Taxol.  But lately, I have been having horrible hot flashes that seem to be only in my face and the top of my head.  They're horrible!

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

    I think the numbness could be related to the brain mets, but it would be best to ask your RO.  The hot flashes are probably from the chemo, if I had to guess.  There are some drugs that will help with the hot flashes so discuss with your MO.

  • formygirls
    formygirls Member Posts: 154
    edited January 2013

    Michelle,

    Congratulations on this report. This is great news!

  • ssmith37
    ssmith37 Member Posts: 16
    edited January 2013

    Thanks, Michelle. I have no RO yet, but did call my MO who doesn't know. But I will meet with him on Friday to go over PET scan I'm having on Wednesday. When I told him about the hot flashes, he just said I sound like an old woman. Not sure I like him. Just started seeing him last month when we moved here. I really miss my MO in Dallas.

  • formygirls
    formygirls Member Posts: 154
    edited January 2013

    Stephanie,

    It is hard to tell what SE are from chemo and what is from the brain mets. Hopefully, everything is chemo related. Will you be looking for a new RO or neuro surgeon or oncologist in Dallas? Good luck with your scan.

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

    Stephanie - unless your onco was kidding, I'd get rid of him in a hurry.  You're going to have a long-term relationship with your oncologist, and his dismissive response about your hot flashes doesn't bode well.  You want someone with some compassion.

  • SusieMTN
    SusieMTN Member Posts: 43
    edited January 2013

    Had my last Rad's to brain and it went much easier.  The spasms in the back were killer!  Just too painful.  Glad the Radiation to the cerebellum was easy.  I was having some memory problems and some other stuff that seems to have disappeared, glad its gone!  Wishing everyone well and free from Brain Met's.

    Susie

  • ssmith37
    ssmith37 Member Posts: 16
    edited January 2013

    Formygirls: I won't be looking for new docs in Dallas. We just moved from there to Castor last month. Not sure yet if I like my new onc here in Shreveport. Time will tell, I guess. Michelle: I don't really know if he was joking or not. I'm sure he was, but now is not really a good time to joke, ya know?

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

    Woo hoo Michelle.    Keep us posted on drugs that cross BBB.   

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

    Hello, Braniacs, me again.

    Got MRI report today.  God nothing matches what they say and what they write.  

    Anywho, "widespread mets".   No counts, very few measurements.  Several typos.

    Question is:  How do you have widespread mets and no symptoms?  I can really imagine things, so tell me its possible to have no symptoms!

  • braids3
    braids3 Member Posts: 131
    edited January 2013

    wow Michelle great news yes keep us posted i also am on x and tykerb cause they cross the bb always interested in what else does prayer to you!

  • Surly
    Surly Member Posts: 73
    edited January 2013

    K-Lo, Damn. I'm sorry about that MRI report. Is this an early result? Will your onc get a more complete report from the radiologist? I don't understand why they wouldn't offer a number. I think 5 mets could be considered widespread--especially if they're...widespread. I imagine whether you have symptoms depends on where they're located and their size. I figure I use so little of my brain that my mets would have to get pretty big before I noticed.

    I hope you get useful info soon.

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