Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Brain Mets Sisters

1…7778808283…279

Comments

  • Bondgirl
    Bondgirl Member Posts: 14
    edited April 2013

    Hi. Unfortunately I'm joining you. Already diagnosed with lung, liver and bones and now brain. Lots and lots of small lesions. Starting WBR tomorrow afternoon. Any tips or advice? Radiation onc said worst se would probably be extreme fatigue the weeks following treatment. I plan to go back and read this thread but just don't have energy right now. So scared and pissed!

  • nancyh
    nancyh Member Posts: 185
    edited May 2013

    Hey Bondgirl, I just replied to your other thread and now see you have posted here too, which is great.  I haven't had WBR, but others have and will chime in with good advice.  Just wanted you to know I'm thinking of you. 

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Nicole....I'm going through the EXACT same thing, but my symptom is the vision loss and a few headaches (nothing crazy).

    Wait and see.

    They really wanted to biopsy right away, and I was like.....SAY WHAT??  Ah no.  They said it was too risky before my SRS, so it's still too risky in my books. 

    Apparently, my the PET scan is not used here so much for the brain.  I really want to find someone who can do it.  MRI shows small growth, but could be necrosis because of time frame (see same thing)

    ARGH!  I know it's so frustrating waiting.  I too am waiting on the 4 weeks until my next MRI.  I have my appointment booked. 

    p.s. I've spoken to some ladies who have been through the same thing.  They get the biopsy and it ends up being necrosis.

    My hope.....necrosis.

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited May 2013

    Hey Jilly,

    As much as progression scares me, radiation necrosis sounds like no picnic either. Because I do have 2 PET scans with whole brain views they know a little bit more. I was actually posting before I got the full story. My neurosurgeon is at a medical conference in new Orleans til tonight, I was talking to his resident whom I knew more than! Frustrating. Anyway, I'm losing neurological function at a pretty alarming rate. Long story short,i AM looking at surgery and sooner rather than later. I see neurosurg, and neuro onc tomorrow AM. Will hopefully have more to report soon.

    Love & prayers



    Nicole

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

    Niclole- hugs and prayers coming your way.

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    I still think I'd choose necrosis over progression.  Just as long as the necrosis doesn't take over.  Fingers crossed for us.  Oh and toes, and eyes, and legs, and whatever else we can cross.  ;)

    Please please please update up soon.  I hope you're symptoms are easing up a bit.  cyber hugs to you!

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

    MRI scan today, 5 months post gamma knife. No new lesions and barely any evidence that my old ones were there.  I will take my victories where they come. Thank you all for being there on this journey with me.

  • justjudie
    justjudie Member Posts: 196
    edited May 2013

    And that is definitely a victory, Leftfootforward!! Good for you. Also wishing the best for Nicole, Jilly and Bondgirl. You are all in my thoughts.

  • Bondgirl
    Bondgirl Member Posts: 14
    edited May 2013

    Anyone dealing with insatiable thirst due to either WBR treatments or the steroids?  I'm on my third chemo and although I know it is so important to flush the body of the chemo with lots of liquids I've always had a hard time with that. This week when I was diagnosed with brain mets I stated decadron on Tuesday and then I had my first WBR on Wednesday.  It seems to be coinciding with the decadron more than anything but its like I can get enough to drink.  I'm drinking tons of water and fruit juice/smoothies and a little coffee but it's constant. So strange since I have never had this side effect before. Any similar reactions?

    Thanks!

    Tera

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

    Happy for you, Leftfoot.

    Tera,I personally would call this in to Neuro.  One can drink too much water, ( it said in my ancient nursing books)

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited May 2013

    Left foot that is awesome news!! Tera I do remember being super thirsty from steroids but would call it in to neuro like Kathy suggested just to be safe.

    Meeting with neurosurg went well. Very well, in fact. He's pretty confident it's radiation necrosis. They're going to biopsy in the OR and proceed as necessary. Goals are to debulk the lesion (which it's assumed is dead) of active cancer is found then that will be removed as well but post op that will change some things. He was encouraging and confident without being cocky- my kinda guy! Second brain surgery I'm just over 6 months scheduled for weds.. Here we go!! Oh and did I mention I'm going to be awake for the whole thing?because the primary goal is to restore motor function they need motor response in real time... Pray for me, girls!!

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

    Lots of good energy going your way nmiller.  May it restore your motor functions and no active cancer be found.

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

    Positive thoughts for a successful restoring of your motor functions and nothing but inactive cancer!

    Speaking of inactive cancer, my brain MRI showed nothing active and the Gemzar is killing cancer...tumor markers have dropped from 2000 to 275 with three cycles.  Woohoo!

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    Hi Ladies..I guess that I get to join this thread and I am so scared. I have read so much positive stuff on here but can't read alot. I just got the word today that I have a few mets on my cerebellum with the largest being .5 cm. My vision is way off and I am having to shut my right eye to even see without having double vision. I go see rad dr monday to start wbr. I started  4mg of decadron today. I had 4 rounds of adriamycin and had progression in liver and lungs and now my brain. Did I mention I am scared! Any feedback on what to expect. Thank you so much!

    Hugs!

    Terry

  • Bondgirl
    Bondgirl Member Posts: 14
    edited May 2013

    Terry, I'm right there with you as i was just diagnosed on Tuesday with multiple small lesions in cerebral cortex. This is the added fun I get to my liver, lungs and bones. I think you will feel better once you start WBR. It should relieve some of your symptoms and just give you that sense of fight. It's super easy. I'm in and out in 10 minutes. So far I'm contributing all my se to steroids. I had minor swelling before WBR so they wanted to bring that down since radiation will also cause swelling. Ironically I had no brain met symptoms. I have an amazing neuro doc (for unrelated issue) and she ordered out of precaution even though I had clean scan in September. They say early detection makes no difference to survival but I think that is a load of bunk.



    Sending you lots of prayers and cyber hugs!



    Tera

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    Thank you Tera..it looks like we are in this together..I started the decadron last night and I take it 4 times a day..I already don't have hair from my previous chemo so no loss there..lol..I wish you lots and Love and Prayers on our journey together. I just wish my vision would get right. Keep in touch.

    Hugs!

    Terry

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    Luvrving..contgrats on the great news!!

    Hugs!

    Terry

  • ango74
    ango74 Member Posts: 31
    edited May 2013

    I have seen lots of good news lately on this thread Laughing I only have 4 more wbr treatments to go. I was feeling pretty crappy.  I was taking 8mg of steriods and have cut back 4mg, feeling a bit better now.  My face has swollen so much from the steriods that my mask barely fits now.  I also feel like my mental clarity is coming back.  Every now and then I will have a dizzy spell or a bit of a headache but thats about it. 

    I was wondering for those of you that have finished how quickly you were able to get back on chemo?  I am finished Thursday and I am hoping to start back on the next Wed. but I'll have to see what the doctor says.

    Angie 

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

     I started chemo 4 weeks after finishing WBR.  But I had been on a clinical trial drug that failed.  Then we started carboplatin and it failed.  So we moved on to Gemzar and it has been the magic bullet.

    They like to put some time between radiation and chemo. 

    I finished WBR the Monday before Thanksgiving and was on an airplane the following Friday.

  • justjudie
    justjudie Member Posts: 196
    edited May 2013

    I just wanted to tell you how much I admire all of you on his thread. I stop by now and then (usually just on Stage 4 board) to see how you are doing. You all have such courage even though you admit how scares you are too. Guess its pretty much like a how wherever else we get it, we are also scared but somehow bite the bullet and go on. what else can we do, huh?

    I have developed some lumps on my scalp. I had one biopsied few years ago and it was breast cancer so doc and I are pretty sure these are as well. But it was only on the scalp. He also noticed I have a slight tremor in my hands. So now he is sending me for a brain MRI on May 16th. (My birthday...lol). Actually I am not real worried. I think these lumps are only on the scalp. And my older brother has a slight tremor too and is in excellent health. As I recall older relatives on my dads side had this tremor and that was all it was. no disease or anything that caused it. Soooo I am hoping that will be the case with me and the brain MRi will be ok. Although I am not real worried, I am a little nervous too as I know you all understand. This disease is so rotten and sneaky. Did I mention how much I hate cancer? Please keep a positive thought for me. Thank you all and please know I pray for all of you.

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    Judie.  You are def in my thoughts and Prayers. All of this is scary and I guess that is why I have stayed off the boards for awhile but I thank you for your encouragement. And I have mentioned how much I hate cancer also..lol!! Everyone talks about how strong I am facing this..well I am not. You just put one foot in front of the other and deal with it the best you can and continue the fight. Like now I have to type with one eye shut so I can see without double vision. There is so much hope on these boards. I have never been one to give up on anything and I am not going to give into this no matter how scary it is. Sorry, for the rant. I think it is the decadron I just started. I have 4 beautiful grandchildren whom I love very much and I will fight for them as well as myself. Let us know what you find out.

    Hugs!

    Terry

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

    (((Judie)))  Good luck with the brain MRI.  Hoping for benign results for your birthday!

  • braids3
    braids3 Member Posts: 131
    edited May 2013

    Judi fellow Taurean i hold u in white light knowing ur mri will be fine celebrate your birthday all month cause u can love ya and all of u

  • ango74
    ango74 Member Posts: 31
    edited May 2013

    Thanks Michelle! I am really hoping to be back on Abraxane the next week.  Keeping my fingers crossed. I've been off for 5 weeks now and am nervous about the mets in my lungs and liver. 

    Good luck Judi.  I will keep you in my prayers. 

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Judie, 

    I'll be thinking of you on the 16th.  I will also rub my buddha's belly and think of you.I'll be in the MRI machine, for a nice and "relaxing" 20 minutes, this Wed. night. 

    Chat soon.  much love and strength to all of you. 

    We are all here for you Terry.  SO SCARY!  I know.  We are in this together and we are not alone. 

    Jilly xoxoxoxo

  • Segolene
    Segolene Member Posts: 8
    edited May 2013

    I posted here in January. I was scared for my mom who had been recently diagnosed with brain mets.

    Thank you so much for the support I received here.

    Well I have some good news! My mom is doing so much better than the last time I posted. WBR just did a miracle. Before WBR my mom was lying in a hospital bed unable to eat, walk or talk. It lasted many many days. The road to recovery was long (she underwent WBR in February and it took her 2 full months to recover). But she is now back at home, almost back to her normal self. She is now strong enough to be back on Xeloda and Tyverb. 

    I went to visit her in March (she lives very far away) and it was so nice to spend some time together. We enjoyed daily walks in the woods during my visit. I'll come back this summer this time with my 2 daughters.

    Thanks again for the support!

  • Bondgirl
    Bondgirl Member Posts: 14
    edited May 2013

    Do many of you come off chemo to do WBR just because it is too much of a load to bare on the body? I just started TDM1 3 weeks ago and as far as I know I'm good to go for 2nd treatment on Wednesday. It's a manageable chemo so I have no desire for a break.



    I do have to say the steroids are a monster. They upped my Ativan dose to 1.5 mg in the evenings to help me sleep. I'm also taking 5 mg of Oxycodone. Frankly, more for sleep and emotional stress than pain. I may need a consult at Betty Ford if I get through theses steroids. Lol!

  • formygirls
    formygirls Member Posts: 154
    edited May 2013

    Bondgirl,

    My team has said that I will definitely need to be off chemo during WBR as it was known to increase cognitive problems if chemo was given during WBR ( per my team). That is one of the reasons My doctors have postponed WBR again as I need systemic chemo as my liver mets are out of control. We will reevaluate with another MRI in two weeks ( I get a brain MRI every four weeks).



    Good luck with treatment.

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    Bondgirl. I feel th same way. I start WBR thurs and no chemo until I finish 15 rounds of rads. They do not like mixing chemo and rads together. I think they need to up my ativan also because I can't sleep or relax. I am only on 5/500 mg lortab. So maybe we can join Betty Ford together..lol!

    Ango..I also worry about the liver and lung mets from not having chemo, but the lesser of 2 evils I guess! But I just want to be able to see again and they said it may take the full 3 weeks of rads to get my vision right!

    Segolene..glad your mom is doing better..thanks you for the good news!

    Jilly..Thank you!

    Hugs and Prayers to all!
    Terry

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Segolene, thanks so much for sharing this great news.  I'm so happy for you and your mother.  xo

    Bondgirl, ROID RAGE sucks!  Dex is the devil.  I can't wait until I'm off.  I hope the same for you. xo

    Jill

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.