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Brain Mets Sisters

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Comments

  • Sue2009
    Sue2009 Member Posts: 96
    edited January 2016

    I am very frustrated. Got PET results from nurse, who has no poker face/voice. She glossed over something in my brain, but quickly said they want to look at scan it self w/their radiologist & compare it to my last MRI in Nov. been in tears most of day. U guys are still awesome. Going to call my RO tomorrow he is usually more upfront & honest. Higgs to all, too cold here too in Fl

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    sue- sorry if I misunderstand.

    Was she concerned with something outside your brain? traditional pet scans are not good diagnostic test for brains as the brain actively utilizes glucose. That's why they use MRIs for brain. So that might be why they want to discuss but I am not sure how you compare pet scan to brain MRIs as they give you differ t images.

    Holding out hope for you. Hugs

  • letranger
    letranger Member Posts: 166
    edited January 2016

    Sue, I hope you get answers soon, The waiting is terrible.

    My update, although minor: I started losing hair in my SRS sites a couple of days ago. My husband can't tell. My scalp has been super tender since my first rads over a year ago and it still hurts! So a head massage is out of the question, although I do drop hot coconut oil on it when I remember. Even just movement of my hair hurts. Whine.

    Hugs to all of you.

  • Hernie
    Hernie Member Posts: 664
    edited June 2016

    Hey ho, my brain MRI was clear! No new tumors, no necrosis, and the bit of tumor remaining after surgery was gone.

    I had asked my RO about the remaining tumor. He said for brain, the surgeons can't get it all out for sure, that's why they go in with rads to clean up what's left. With SRS, I would have <50% chance of regrowth. Next week, I will ask about the time frame to expect regrowth. Anyway, 2 MOs have said I could be around "a long time" so having this first scan not be a mess gives me a lot of hope.


    Bad, I wish you all the best for your surgery! ThumbsUp


    Lauralind, how are you managing your second Thursday carbo?


    Sue, any news?


    letranger, can I tell you to soak your head? Winking


    Let's all support Maureen

    https://community.breastcancer.org/forum/8/topics/840520?page=1

    Hug

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Hey everyone. I had my second carbo yesterday. Other than almost a 2 hr wait for the pharmacy to send up my drug ( argggg) it went fine. It's weird how I feel pretty good on chemo day. Could it be the fluids ??? I had some little waves of queasy despite 1 mg of dex and 3! Zofrans but otherwise I'm Okish.  

    Goodie glad the ins got straightened out ! 

    Bad I'm thinking about you ! Walking in for my craniotomy was sooo scary. But it wasn't so bad after the first night. 

  • letranger
    letranger Member Posts: 166
    edited January 2016

    great news on your MRI, split!!!!

    What do you mean soak my head?

    CT body scan today for me

  • Hernie
    Hernie Member Posts: 664
    edited June 2016

    Do kids still disrespect each other by saying go soak your head? Or am I that old?

    And you have tender scalp so maybe you soak it in something that feels nice.

    Very punny!

    Loopy

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited January 2016

    YAY SPLIT

  • Hernie
    Hernie Member Posts: 664
    edited June 2016

    Thanks!

    You're next, Bad! Kick those puppies to the curb!

    As I so proudly said to my kids, Modern medicine ROCKS!!!

  • letranger
    letranger Member Posts: 166
    edited January 2016
    Vent: I hate rads. I hated it on my breast and hate it on my brain. It's so damn painful. I'm in chronic pain all over my body. LE acts up and just adds to rads pain.
  • Hernie
    Hernie Member Posts: 664
    edited June 2016

    Laura, glad you are feeling OK. Hope you stay that way. Hug

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    Great news on the MRI split beam.

    Good luck letranger.



  • gciriani
    gciriani Member Posts: 195
    edited January 2016

    Letranger,

    Do you know your radiation dosage? My wife's was 3500 cGy (centi-Grays) over 14 radiation days (3 weeks, 250 cGy per day, 126 on the left and 124 on the right hemisphere). Studies I've read show this is about the average.

  • agness
    agness Member Posts: 406
    edited January 2016

    I'm halfway done with tomotherapy to the cerebellum today. I thought it was 5 weeks but they decided on 4 weeks. Faster is sometimes better.


    Here's to us kicking cancer!

  • letranger
    letranger Member Posts: 166
    edited January 2016

    GC: I will ask next week. I am changing RO's. I barely have any contact with my RO. I need someone I can talk to.

    Agness: Yay for fewer rads!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Letranger I feel ya. I have so much other going on the left over rads stuff doesn't get credit. I have these weird muscle cramp rolling feeling on my left upper back to under my arm. My original breast rads was around there too. I also get these weird muscle tightening on my left side of my neck.  I had cramps on the right side of my head/neck from that muscle being cut during my craniotomy. 

    I felt shitty today. Headache icky ugh.  

    Agness good !  

    I had 14 fractions but I don't know what dosage. I know they give 10 14 or 20 and we picked 14 mid level 

    Split yay !! 

    Let ranger good mojo for your scan !

  • agness
    agness Member Posts: 406
    edited January 2016

    Up early with a leg cramp really bad and a cold. It seems to be related to treatment. I soaked my feet in epsom salts and baking soda and drank a glass of potassium iodide. Hopefully that helps.

    Less rads is more but still feeling nervous. Only two weeks to kick this mutant cell line and while under-researched I hear that they expect it will come back. I don't think so, I mean my SRS showed that this cancer cell line is suceptible to rads, but LM is understudied. I am doing everything I possibly can outside of treatment. Fingers crossed

  • letranger
    letranger Member Posts: 166
    edited January 2016
    Agness,


    Such a coincidence that you brought up leg cramps! I've been having toe cramps this week. At night. I also did the Epsom salt foot bath and just bought some pink Himalayan salt to add to my foot bath. I have xeloda side effects on my hands and feet so they are black and skin is peeling and cracked. I'm trying to detox to get rid of the old chemo effects.

    I can't believe how much hair I've lost. I have ugly looking bald patches on my head. Oh well.

    Have a nice weekend, everyone.
  • josalive
    josalive Member Posts: 53
    edited January 2016

    Hi everyone -

    I'm not sure how I ran across this blog but reading it made me think of some of you. Thought I'd pass it along in case it interests you. The author has stage IV her2+ breast cancer with brain and leptomeningeal mets and has done really well with her treatment choices.

    http://whatididanddoandwhy.com/about-kaiulani/


  • Hernie
    Hernie Member Posts: 664
    edited June 2016

    This thread is for brain mets sisters to support each other, NOT for promoting alternative medicine. Please respect that.

  • josalive
    josalive Member Posts: 53
    edited January 2016

    split-bean -sorry... I honestly thought it might have been helpful as I was reading through it. Sorry if it felt unauthentic or irrelevant.

  • many
    many Member Posts: 57
    edited January 2016

    everyone,
    I have a friend who was diagnosed with brain met iin October -15when She had the gamma knife procedure for brain met of 7mm in cerebellum.She had a follow-up MRI and got the results in the mail today. She will see the neurosurgeon on Friday to discuss them. The MRI shows that the brain met is still there but it is much smaller. And does not show metabolic activity .She just wondered how long will it take to vanish or go away or will it always be there on scan but "shrunken?

  • nancyh
    nancyh Member Posts: 185
    edited January 2016

    Regarding leg/foot cramps, I've had terrible problems with them the past few years and the thing that works best for me is Nuun. Electrolyte tablets, available at sporting goods stores (in Seattle, they even carry them at the grocery store). I keep some in my bedside table for the times when I wake up in the wee hours of the morning with a charlie horse.

    Here's the link Nuun

  • nancyh
    nancyh Member Posts: 185
    edited January 2016

    Bad - thinking of you...your surgery is tomorrow, right?

    Agness/Ann - glad to hear your rads are going okay, less duration sounds good to me. Sending best wishes to you.

    Many - I think as long as the lesion is stable and/or shrinking, it is good news and might never disappear completely. I've got a small lesion in my cerebellum from 4 years ago that still shows up, but is stable so we don't do anything about it.

  • gciriani
    gciriani Member Posts: 195
    edited January 2016

    Josalive,

    The author of the blog you passed along, Kaiulani Facciani, implies that leptomeningeal cancer is not eligible for radiation. I know for a fact that it is not true; on the contrary my wife's RO said radiation in the form of WBRT was the only possibility because it enveloped her brain all around.

  • letranger
    letranger Member Posts: 166
    edited January 2016

    thanks, josalive for thinking of us. I am trying both conventional and alternative stuff. as well as my own made up stuff! lol!

  • letranger
    letranger Member Posts: 166
    edited January 2016

    hey rads sisters,

    Been having a tough day. I expected hair loss with my targeted rads but I am really shocked with the amount of hair loss with SRS!!! I texted my MO and vented. My new RO called me and we talked about the extreme hair loss and I learned that they could have put some "clip thingies" around the radiated area so reduce the hair loss and MEASURE the amount of rads going in!!! Why didn't they do this???? I had not even heard about it! Please ask about them if you are getting a series of SRS. I don't know much about it but I will go over my entire rads tx with the new RO this week. Um, hello. I have a brain MRI and I have new chemo this week. Thanks for the added stress. Yes, I'm planning on getting a New New RO. A third opinion.

    With 2 radiated lesions, I now have 4 balding areas. Sure i get it that the lasers cross, blah, blah, blah. But how about telling me that the bald spots would be like 6 inches!!! I don't even know how to begin to cover this up! It's patchy. I'm so mad. Fuming. But won't have them touch me again.

    Any advice? Maybe I should head over to the HAIR thread.

  • bourscheid
    bourscheid Member Posts: 43
    edited January 2016

    Hi ladies! Haven't posted in a while for a variety of reasons. 1. My MRI got pushed back several weeks because I had a retina detachment and had to have emergency eye surgery. So I didn't have my MRI until about 3 weeks ago. The eye surgery entailed surgically placing a "buckle" in the eye to hold it against the back eye wall. Had a gas bubble injected as well to hold further hold it while healing was occuring. Could only see out of 1 eye for 6 weeks Surgery was a success 2. I then restarted Ixempra and it puts me down for about 10 days (I get it every 3 weeks). 3. Then my oncologist for the last 7 1/2 years retired. I do like my new onc though. But the chance made me sad. So...finally got the MRI results and they were excellent! I had more small mets then I realized and two lesions that were 2-3 cm each. The smaller mets did not show up at all on the MRI and the two larger ones are less than half their size and showed little activity (doc thinks they will contiue to shrink and/or may be scar tissue.) No signs of swelling, stroke, etc. Overall I'm very happy and looking forward to my PET to see how the Ixempra is working. That will happen on Feb. 1. Hope you all are doing well with your treatments and have success. Will check in more frequently to keep up with what is going on. Hugs and blessings!

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited January 2016

    Thanks for the good wishes, Nancy. I am indeed scheduled for surgery tomorrow. Last chemo down the hatch tonight until a few weeks after, last good Dex-hunger induced meal.

    I am a bit nervous, but I'm more happy to get rid of the suckers and get helpful info from tumor board and Foundation One.

    I am praying so hard for a nice, long remission from this.

  • letranger
    letranger Member Posts: 166
    edited January 2016

    Good luck, tomorrow, Bad! Praying with you, for you. Hard.

    Lauralind- how are you?

    Bourscheid - glad to hear that those mets are shriveling up!

    Ann- good luck on week 3 rads

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