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Brain Mets Sisters

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Comments

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

    Spamgirl - I was diagnosed with brain mets last November and underwent 10 sessions of WBR.  I had a brain Mri on 4/17 and the mets are almost all resolved.  The remnants continue to shrink.  I have not had a personality change nor any other lingering effects except my hair has been slow to return.  But they told me it probably wouldn't come back at all so I'm happy that I have full coverage except a couple of sparse spots. 

    I feel the treatments were successful and I continue with systemic chemo which is also working well. 

  • Surly
    Surly Member Posts: 73
    edited May 2013

    Spamgirl, that's not true! I had three tiny mets--2mm to 4mm--discovered in late Sept. 2012. I had gamma knife in October. I've had follow-up brain MRIs in January and April and BOTH SCANS ARE CLEAN. I will have MRIs every three months for at least a year, then have them at 6 months. I, of course, also thought that more mets would crop up like dandelions. But both my onc and PA have said that they that it is NOT uncommon to see brain mets treated with gamma knife once and never to see brain mets again. 

    I would not be surprised if I got brain mets again, but I'm more concerned about the liver lesions. 

    I know everyone's situation is different, but for the RO to say if there are 3 there are probably 30 is reckless--and bullshit to boot.

  • nancyh
    nancyh Member Posts: 185
    edited May 2013

    SPamgirl - I've had brain mets for over 2 years now.  Mine were both small, so I don't post much here because I am not in active treatment for brain mets aside from getting frequent brain MRIs, so I don't have much to contribute.  

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

    Hi, all,

    Im fine just curious:  anyone have early warnings related to seizures?

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited May 2013

    K-Lo no experience to answer your question.

    I wanted to share this funny article on better choices for our state birds: http://www.slate.com/articles/health_and_science/science/2013/05/state_bird_improvements_replace_cardinals_and_robins_with_warblers_and_hawks.single.html

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited May 2013

    Seizure is a common symptom in people with brain tumors. For some people, a seizure might be the first clue that something unusual is happening in the brain. Seizures are particularly common with slow-growing gliomas, meningiomas located in the convexity of the brain, and with metastatic brain tumors.
     

    A seizure is an attack caused by abnormal electrical activity in the brain. It lasts only a short period of time and may cause unusual movements, a change in the level or loss of consciousness, and/or sensory distortions. There are many different types of seizures. The type you experience depends on which area of the brain has the abnormal electrical signals.


    Below are some of the common features of seizures in patients with brain tumors:

    • Sudden onset.
    • Loss of consciousness and body tone, followed by twitching and relaxing muscle contractions.
    • Loss of control of bodily functions.
    • At risk for biting tongue.
    • Short periods of no breathing (30 seconds); may turn dusky blue.
    • Short duration (2-3 minutes).
    • After effects include sleepiness, headache, confusion, sore muscles, brief weakness, or numbness.

    Incidence

    About 60% of brain tumor patients will experience seizure at least once during their illness.


    Cause

    A seizure is caused by abnormal electrical activity in the brain. Normally, your body’s nerve cells communicate with each other via carefully controlled electric signals. If something interferes with these signals and they become more intense, you are likely to have a seizure.


    Most seizures occur randomly, at any time, and without any particular cause. However, there may be advance notice. People who regularly have seizures sometimes notice things that may signal an oncoming seizure. This warning is called an “aura.” Auras sometimes take the form of a headache, a change of mood, a muscle twitch, or a particular smell.

    http://www.abta.org/understanding-brain-tumors/symptoms/seizures.html

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

    Eng Maj: love the state bird article.   why do states want to pick such ordinary birds: cardinals, mockingbirds, robins....   They're everywhere!   Thanks and the pics are gorgeous.

  • hotandcold
    hotandcold Member Posts: 70
    edited May 2013

     My last post was that I wasnt on any Decadron.  Over the weekend I developed sever headaches and still feeling horrible after taking 2 tylenol and then some lorazapam.  Had to ask Dr. for Decadron on Monday and had a good night sleep after I took 2 mg. about 4 pm. Took 2mg in the am and 2mg in the pm on Tuesday and now here I am up at 4 am on Wesdnesay.  I don't have any energy during the day and yet here I am at 4 am awake and typing and on the computer (it's a quiet activity).

  • braids3
    braids3 Member Posts: 131
    edited May 2013

    Hi ladies i also don't post much i've had 7 cyberknifes and go see rad onc and neuro tomorrow i'm kinda scared i've been having headaches and i don't usually have them also been kinda tripping like my foot isn't being picked up enough also my blood test doubled since last week it. mu neus were 1.7 now there 3.5 anyone have this happen? blessing to all

    love and light chris

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    hotandcold..I was on 3 decadron for 2 weeks and yesterday they cut me back to 2. I was not eating, sleeping, or drinking.  I lost 8 pounds since last tuesday. Could not hardly function. I am feeling better today..OMG  It was horrible..I have had 7 treatments and they said no swelling in the cerebellum so I could cut back. I asked for resperdol (spelling) to help sleep..  Prayers honey!!

    Hugs!

    Terry

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Nicole, how are you doing?  I'm just reading your WBR news now.  How are things today sweet?

  • hendricks1
    hendricks1 Member Posts: 24
    edited May 2013

    Hi Ladies-I'm new to this thread.  Just diagnosed this last week with brain mets.  Was doing well on Perjeta/Herceptin/Abraxane-controlling my liver mets but guess it decided to travel to my brain.  Understand that's more common with Her2+ ?  I've been offered a couple different trials, one with BKM120 and told radiation should be my last option?  Just looking for any input from those who have "been there, done that".  Thanks and Happy Memorial Weekend!

  • tlangston07
    tlangston07 Member Posts: 81
    edited May 2013

    hendricks1..don't know anything about the trials but I am doing WBR now and its been pretty rough. Hopefully someone will be able to help you on here. I have liver and lung and was just diag 3 weeks with tiny mets to the cerebellum..Prayers on what you decide!

    All of my other sisters hope everything is going good!

    Hugs!

    Terry 

  • hendricks1
    hendricks1 Member Posts: 24
    edited May 2013

    Terry-Hope you're hanging in there.  I may be joining you soon.  What are your experiences so far with WBR?  Take care!

  • tlangston07
    tlangston07 Member Posts: 81
    edited June 2013

    hendricks1..I have been on 3 differnt chemos.including the red devil and this is worse than any of those. My friend has been with me for 2 weeks because I could not get up by my self. I have to have help even going to the bathroom.  My legs are weak. I had to have fluids for the dehydration. I was put on decadron 12 mg a day and I think it has played a big part in this. Now I am down to 2 mg day. I have had 12 treatments so far and 3 to go. So it has been a ruff one. I don't mean to scare you but if it helps knocks those little buggars out I would do it again. Good luck on what you decide.

    Prayers and Hugs!!

    Terry 

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited June 2013

    Hey ladies,

    Haven't officially made any treatment decisions. Now EBRT/ partial brain radiation is being offered as a long shot possibility. It takes wbr off the table and will not allow anymore SRS to this persistent, stubborn area. I am more confused than ever! Wbr still scares the crap out of me and being that I'm already in PT to relearn to walk and regain use of my right side I fear the side effects may be even more difficult to tolerate. There are no easy answers are there? K- lo can I ask why you decided to decline wbr? Please pm me. I have a feeling we're rowing the same boat. Love to all of you. Thank you jilly for thinking of me. And love & prayers for us all.

    Nicole

  • braids3
    braids3 Member Posts: 131
    edited June 2013

    hi been off latly dealing with other life grand sn graduated from hs. saw rads last thurs new met to right pone in brain stem gonna do a nother cyber #8/9. also put me on the evil droids on the mataince does now 4 mg a day someone please chime in if they have had problems with throat swallowing i feel like i get a soda bubble stuck in my throat all the time is this from the droids. anything help?

    love and light -chris

  • hotandcold
    hotandcold Member Posts: 70
    edited June 2013

    Braids3: Try taking a Tagament with your droids.  The nurse told me to take it as the droids can bother your stomach,  When I forgot a couple of times I was urpy/bubbly until I remembered and took it.  Good Luck.

    Finished WBR 1 week ago.  So tired I have to go back to bed I can't hold my head up. I'm just thankful I'm not nauseaus.  On a tapering off schedule for the decadron, but have some headaches at night.  Taking 1 mg in am and 1 mg in pm. 

  • Bondgirl
    Bondgirl Member Posts: 14
    edited June 2013

    Hi all. I finished WBR (15) about 2 weeks ago and am just now starting to mentally feel clear. I had a really hard time with it. I think a lot because of steroids. I'm tapering off and will finally be done with steroids next week. It's not a big deal in the scheme of things but this is the most awful I have ever looked after dealing with cancer for 3 years. The bloating and weight gain have been horrible. Can't wait to be able to exercise and just function again. My saving grace has been being on a gentle chemo at same time. I'll have my first MRI in about 6 weeks. Praying it worked . Didn't realize what a challenge it would be.

  • formygirls
    formygirls Member Posts: 154
    edited June 2013

    Hello all. I also posted this on the general forum but I am hoping someone here has gone this or has advise thanks. I am copying my original post.



    Some background. I have brain mets and got radiosurgery for 9 lesions in May. 2012. Since then I have had a few progressions and my MRI this week showed 5 new lesions in my brain that need to be treated. My treatment team does not want me to get WBR because:

    1) rad onc feels they can treat me with radiosurgery again.

    2)I also have too much systemic disease and cannot be off chemo for three weeks to get WBR

    3)I can do WBR only once and they want to save it till the end

    4)I am not in a great physical shape for WBR as I am having a tough time on my chemo of Xeloda, Afinitor, tykerb, Herceptin and Zometa.

    BUT my ins (CIGNA)has denied me treatment for radiosurgery and will only pay for WBR. They have a lifetime limit of only seven lesions for radiosurgery and they say I have exceeded that. This treatment will cost between $15 and $30,000. My doctors have already appealed and lost. CIGNA is insisting I do WBR if I want treatment but my rad onc is insisting I can get by with radiosurgery and I should keep WBR in my back pocket. My rad doc says tx has to be done in the next two weeks otherwise my MRI and CT will have to repeated. Do you have suggestions for me for appealing this through a state agency or some other option? I live in CA. I would really like to avoid WBR for now. If all fails, we will tap into my life ins or 401k but I hate using money that I would like to leave for my kids.



    Seriously, this whole thing is a nightmare enough without all this. Thank you for your advise.

  • hendricks1
    hendricks1 Member Posts: 24
    edited June 2013

    So sorry for your trouble.  This is definitely a pain in the rear without adding insurance difficulties.  I'm sorry, no recommendations here but just thinking of you and sending hugs.  I too am about to start Xeloda, Perjeta and BKM120 to see if it helps my brain mets, saving radiation for later but I have too many mets for Gamma knife : /

    Hugs, Gail

  • Papillon1
    Papillon1 Member Posts: 85
    edited June 2013

    Hi ladies, sorry to butt in... I don't have brain mets but my mother does :(



    When you ladies say yours are small or tiny what size do you mean?

    Would one 2cm solitary met be considered big or small? Thanks.

    Sending happiness and as much health as possible to you all xxx

  • cthynsh
    cthynsh Member Posts: 11
    edited June 2013

    mine was 2 cm which made it too big for gamma knife but big enough to successfully remove the whole thing surgically. Then gamma knife radiation to surgical field. Hope this helps. Hugs to you and your mom.

  • Bondgirl
    Bondgirl Member Posts: 14
    edited June 2013

    Question for those of you that have had WBR. What was your experience with hair regrowth? I didn't go completely bald with chemo but it did fall out and was thin when I started WBR. It initially got even thinner. However, now a month after finishing radiation I just noticed in shower my short buzz is falling out.

  • tlangston07
    tlangston07 Member Posts: 81
    edited June 2013

    HI ladies..I need your help.  I finished WBR on monday and took my last decadron wednesday. It has kicked my butt and put me in bed. I have to have help walking and no energy. Has anyone else experinced this?  Also, I have to tell you my miracle. Last week I had to go to the ER and get fluids. The dr asked if he could do a ct scan of my lungs to make sure of no blood clots. When he came to check me out he said he had looked at my scans from 2 months ago and saw where there was progression in the liver and lungs but the scan he just took showed my lungs clear and no cancer!!! WooHoo!!  Thank you God!!

    Love and Hugs!!

    Terry

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

    I had WBR in November and most of my hair fell out except for the base of my neck.  It's been six months and I have about 2" of coverage.  I have a few thin spots but considering I was told it probably wouldn't come back at all, I am pleasantly surprised by what I've got.

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited June 2013

    Hey ladies,

    So I'm tentatively scheduled to start wbr on July 1 (getting married on June 29 & wasnt sure what to expect so I delayed it) and am still in PT 3 days a week because I'm still regaining function after my neurosurgery. To all of you who have done wbr, my question is am I going to have the energy to continue in physical therapy and if not, how long did it take you to feel "normal" again? My oncologist assures me I'll have more than enough energy. What has your personal experience been?

  • Bondgirl
    Bondgirl Member Posts: 14
    edited June 2013

    Terry, first of all great news! As far as the decadron I finished WBR weeks ago and I am still tapering on the steroids. I'm surprised they had you stop them cold turkey. As all my doctors reiterated to me how important to come off slowly. My MDA doc actually is making me taper off an extra week.

    Nmiller, congrats on you upcoming wedding! Probably not what you want to hear but WBR kicked my butt. I've been done for weeks and I'm just starting to feel "normal". I'm still on steroids (2mg every other day) and I'm certain the steroids were a huge culprit. For me the fatigue but inability to sleep was intense. It started significantly for me about a week into radiation and contined until about 10 days ago. So several weeks. I had 14 treatments. Good luck!

  • Latte
    Latte Member Posts: 141
    edited June 2013

    Nmiller, don't have any info for you but wanted to congratulate you on your upcoming wedding!! How exciting!

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

    I finished WBR the Tuesday before Thanksgiving and was on a plane for Las Vegas on the Friday after.  I went back to the hotel in the afternoon for a break/nap but otherwise I was able to enjoy myself. 

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