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Brain Mets Sisters

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  • CureDaisyOrg
    CureDaisyOrg Member Posts: 1
    edited December 2011
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    I'm sure most of you read the recent press release from Geron regarding thier initiation of Phase 2 clinical trials for GRN1005 in brain metastases from breast cancer, however I wanted to post the link to the release for those who hadn't read it yet.

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    when they go in to zap my brain spots tomorrow they are gonna see a lot of chocolate in there, including choc covered pretzel. MMMMMmmmmmmmm

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Start my 17 WBRT tomorrow. Nervous, but some thankful that my medical team has worked really hard to avid the hippocampus area to minimize cognitive side effects!!

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Good to hear survivor. They have made amazing progress with the mapping around sensitive areas. Lets get thru this!

  • jintski
    jintski Member Posts: 23
    edited December 2011
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    K-Lo and Survivor2be

    Good Luck with the zapping and WBR

    I'm not sure that my team tried to avoid any areas! - but I am still 100% functioning normally! Really hope that you have a positive experience and all those areas are zapped without any other damage!

    Take care xx 

  • Suze35
    Suze35 Member Posts: 559
    edited December 2011
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    Survivor2Be - I just wanted to wish you luck for tomorrow as you start your WBR! What a great team to be so careful and thorough with your mapping. Thinking of you.



    Susan

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    K-lo and Survivor 2 Be -- it's ok. It's going to be ok. It doesn't hurt and the SEs don't start for a while. I'm here for you -- ask anything (yeah, from that weird stuff in your ears to the strange bumps between your eyes)...just say over and over "they know this works, this will work, this will work." I'm thinking of you! 

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Well, Im still a little overwhelmed and don't understand so much of what went on , but,      I think I was really lucky.  Went in at 0500, had a very lightweight frame placed with mild discomfort at first, no discomfort later, and just had to be patient.

    They ran an MRI with the brace on, studied the results for hours, and about 11 am they started treatments in the Gamma Knife machne.  I was just a body going in and out.  The team was extremely precise, a physicist and radiation oncologist and a neuro nurse who is worth her weight in gold.

    I guess Ill try to tell more later but, it was a procedure!   Scalp still numb from initial pokes.

     No complaints here.

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    Way to go. One gone. You may feel stuff later...sometimes weeks...but maybe not. I had WBR and not Gamma so hard to say. Stay strong my friend! 

  • TallM
    TallM Member Posts: 1,070
    edited December 2011
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    mommydoxie: Hi. Sorry I've been away for awhile. I spent 11 days in the hospital, 6 in the ICU on a respirator. I'm back home now & getting stronger.



    As for driving:I haven't been able to drive. I'm to weak, shaky, & not able to sit up that long. I don't feel it's safe for me to be on the road.



    Disability:Apply now to get the ball rolling. It takes a long time to do the paperwork & get it going. I was told it would take up to 6 mo. I'm not able to work so that puts me in a bit of a pickle. So goes life.



    I hope that helps. Good luck & have a Merry Christmas.

    -Malinda xxx

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Well, I've done 2 treatments and they are not bad at all. In fact, I think cuz I can't look around because of the mask, it's easier than the breast radiation. I actually fall asleep! It takes about 30minutes cuz they are sparing some key cognitive areas in my brain. However, I feel very tired and overwhelmed easily. Do u think this is from 2 days of radiation or the week of tykerb?

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited December 2011
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    Two young moms with brain mets recently shared some good news. They have both had a really tough go of it--they still face a rough road, but they are both amazing: 

    http://familybondingtime.blogspot.com/

    http://raisingsaints.blogspot.com/ 

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    Survivor2be...I'm guessing tykerb because the rads tend to creep up and hit with fatigue from behind after a week or so, but you've got a lot going on and the treatments are long. It's probably the combo of stuff and don't forget the impact of the emotional roller coaster. I finding waiting for treatment to get underway much more stressful than actually doing it -- at least when you are in it you can be counting what's left and feeling like you are doing something. Check in often ok? Thinking of you! 

  • mommydoxie
    mommydoxie Member Posts: 11
    edited December 2011
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    Thanks, TallM.  So sorry to hear you have not been well and have been in the hospital.  My prayers are with you.  I hope you get better and stronger soon.  I have finished 6 of my 15 WBR sessions.  So far okay.  The top of my head is starting to hurt.  Not sure if this is burning or hair starting to think about falling out again.  I'm still driving and working, although it is difficult to get motivated and stay energetic to do either.  Hoping I can get back to a better diet and some daily exercise now that Christmas is over.  Please keep me posted on how you are doing.

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    My incision is starting to hurt too! Just sore. I've done 3 of 18. I'm so tired today, but I think I have a cold (all my kids have runny noses) and we're moving. I'm supposed to start work next week, but I'm so exhausted now, I'm not sure I can do it!! I was supposed to rest during my surgery recovery, but there was always too much to do!! Man oh man!! Now Im reading all this stuff about cancer and the immune system....I've had 5 surgeries, chemo, rads X2 and 3 rounds with cancer in 15 months - my immune system is probably toast!!

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    Andrea I get what you mean about your stress. I'm hoping your positive attitude will counter some of that. I'm doing mindfulness meditation to help stem the unproductive anxiety. But therwe's a lot under the surface! Keep up the best self care you can!

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    Here's what I'm learning about WBR and I finished two months ago. There's the whole range of side effects while you are undergoing tx -- the hair falls out, the ears clog up, the fatigure begins. Then there's the range of afterward SEs, some of which I am just starting to feel. Itching (fun one), eyebrows thinning (but not gone), nausea and acid together. Not complaining, just hoping this can help you all. I thought htis had to do with surgery to insert port in head for brain mets and/or the chemo but my onc says no...the rads stay with us a lonnnngggg time. So yeah,it's a drug for this nd a drug for that and just keep going. I want the ENERGY the most -- need that endorphin kick. 

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited December 2011
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    Do u think this Radiation "hurts" more because I had no feeling in my breast after the mastectomy? My scalp is itchy and tender and my hats don't fit. I had NO problems with breast radiation.

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    I don't think the two things are related. I think WBR comes across as feeling so benign and short and easy compared to the breast rads that you get lulled. I was so upset to lose my great crop of chemo hair only to find the WBR hair loss is so much more complete than chemo hair loss and non of my scarves worked and I had to adjust hats too. I keep telling myself this is why they use the word "patient"...my problem is with some down energy days I kept a pretty full schedule from dx to about two weeks ago and I'm not liking not doing what I want! Anyway just make sure your doc knows ALL symptoms and SEs -- there's so good creams and patches for that tender scalp. 

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    PQ, what do you mean "more complete hair loss?"

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited December 2011
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    hey everyone, just one question to ask, my mom has just finished her WBR about 5 days ago, she is having the usual fatigue and hair loss as expected. However, she has developed a stiff leg, has anyone experienced such a problem after WBR? she is having its since a week and is due to see her doc tomorrow..

    all the best to everyone with their treatment

  • jintski
    jintski Member Posts: 23
    edited December 2011
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    Hi bestfriend

    I was told that muscle weakness could be one of the side effects, perhaps this is causing the stiffness. I haven't experienced this exactly, but have experienced quite a few odd pains in odd places.  I had a really strong muscular pain under my ribs, then in my back, then back under ribs on other side, then my leg!  Non of these areas are affected by cancer, so I guess it could be due to the WBR (and possibly by my being less active.  

     Hoping the leg returns to normal asap!

  • pq2
    pq2 Member Posts: 66
    edited December 2011
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    My chemo hair loss left some stubble...the WBR hair loss is so smooth -- no har follicles it seems! They say 3-4 months after WBR so I'm hoping for end of January. Eyebrows were fine til a whole month after WBR ended then they thinned too. Sigh. 

  • MCTHO
    MCTHO Member Posts: 44
    edited December 2011
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    My hair started to grow back about three months after my WBR.  It seems to be growing a lot slower and is a much finer grade. 

  • K-Lo
    K-Lo Member Posts: 826
    edited December 2011
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    re rads to right chest etc, 13 years ago, I don't need anti-perspirant on that side!

     BUT they have improved technique by worlds since then, so you no they're being as careful as possible to preserve  all non-cancerous structures.

  • 3rings
    3rings Member Posts: 8
    edited December 2011
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    Thank You pq2 that is exactly the information I was looking for.  i just had treatment number 9 today, so far I still have hair, but the doctor said probably next week it will go. Looks like the hard part will start next week. I'll look into getting someone to drive me to treatment, i've been driving myself.  Thanks so much for the info.

  • lassman
    lassman Member Posts: 49
    edited December 2011
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    Hi,

    My hair fell out exactly 3 weeks after WBR. It took 3 months before my hair started to grow back but it did eventually. It seems to grow more slowly now and is going a bit curly! Head was as  smooth as a babies bum during the 3 hairless months! Some of my eyebrows did fall out but grew back almost immediatly. 

    Lassman

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited December 2011
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    thank you jintski, i have let my mom know and she will keep an eye on it. hope your pain goes away really quick and your treatment works out really good for u..just to ask u as well were u reccomended to do anything to help with muscle weakness?

  • lisa75
    lisa75 Member Posts: 6
    edited December 2011
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    TallM  - I was reading you and Mommyx3 were diagnosed at 36 and both at stage 4, mets to the brain...=(.
    I'm 36 myself and will be 37 in March. I'm not stage 4 but reading this part of the forum makes me take my own diagnosis more seriously. My left breast was lactacting and I knew something was wrong and that's how I found out. Even though its DCIS the fear is still there. I wish you both good thoughts and progress.

  • Jane1967
    Jane1967 Member Posts: 7
    edited December 2011
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    Just diagnosed yesterday, January 30, 2011 with brain mets. Starting WBR for 14 sessions next week.I'm praying this workds as besides the headaches, I'm feeling good otherwise. I'm on taxotere and herceptin.