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Brain Mets Sisters

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Comments

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

    Thx, FMG, I'll look it up.   I did ask my MO and she said here is nothing for me.

    Plus, I think they hear me saying Im tired...  

    Are those for Her2+?

  • formygirls
    formygirls Member Posts: 154
    edited February 2013

    Kathy,

    It was for both her2 positive and negative. It just closed at my center but your onc may have similar ideas or have this trial. Halaven has been your wonder drug; you may get one for these brain mets yet.

  • justjudie
    justjudie Member Posts: 196
    edited February 2013

    I fully agree with you K-Lo. You have gotten plenty. Many gentle hugs.

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

    Leftfoot:   Pardon me, but what is the pciture in your avatar?

  • Surly
    Surly Member Posts: 73
    edited February 2013

    K-Lo. I know you're OK. I just was moved by your words about having had plenty of life. Or however you more eloquently said it. I didn't know you'd been pushing this safe across a parking lot since 1997. I'm just coming on 3 years (stage IV at diagnosis). But I often wonder about how much I can take too. And I've not had it that bad. I keep on because I just want to buy more time with my husband and I want to outlive my mom. But I'm also a pretty content person--happier than I've ever been--and I'd never trade my life for anyone else's, no matter how healthy or wealthy they were. I have been so lucky in many ways. I am around so many petty people at work, people who see the world in black and white. They file everyone into for or against them, they're always looking for drama, they treat colleagues like crap because they're so self-involved and tie their happiness to ephemeral things. I just don't engage with those types anymore. Life's too short. Where am I going with this? I guess I'm just trying to say I know what you're saying about others in our lives with their hands full with loss and sadness. It makes me so fed up with the petty types.

    Hmm. I guess ideally we run out of options at the exact time we decide we've had it with them anyway.

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

    Dear Surly,  (You're not really surly, i bet you're a ray of sunshine)

    Isnt it freeing to float in this other space, above the petty, yet still human, free to choose what we want to hacked off by???

    When I left my long-term job, I had already floated up a bit and then my next job was just too long a day.  I told DH, its chemo or work.  So,pretty sweet retierment lifesyle.

    Anyway,    ...     1997 was the first encounter for us, we slipped between death sentence and hey its gonna be fine.   Then we had various scares over the years.  First distant mets 2010.

    Point is, we all know when we hear the C word, we think the worst and it makes you change forever.    Do you agree?

    And with mets,  we evolve again.  First its well, &$%!! frik,  Im toast this time!.  Then you meet people who have gone 14 years (Im thinkng of You, Marybe)

    Gonna be 58 feb 23.  its a whole world away from 42 with a 7 year old.   So, Im happy to join you in saying  Life is Good!    (Today)  

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited February 2013

    Kathy - well said!  I am praying for you ((Kathy))!

    For all of you...Have a good day!!

    Love, Prayers, Positive Energy Always!

    Sue

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

    Kathy- well said.  

    K-Lo- My avatar is just a photo of a soccer ball going into the net. I have played soccer all of my life (over 30 years) and it was just something that caught my attention.

  • Surly
    Surly Member Posts: 73
    edited February 2013

    K-Lo, I think the sun would beg to differ. No one has ever mistaken ME for a ray of sunshine before. Some 25 years ago--in my early 20s--I had the nickname "Snippy." I think I'm this way because I was a colicky baby. "Surly" is probably an overstatement--I'm more of an impatient realist/optimist who occasionally makes her mother, sister, and husband cry with her biting tongue--but I chose that name because it's a mispronunciation of the street I live on. I got so tired of every doctor's office check-in person asking, "Do you still live onnnnn...Surly Street?" (The street is Searle and rhymes with "pearl"; why is that so difficult?!) I finally quit huffing and puffing and correcting them because clearly I effing live on Surly Street.

    "Floating in this other space" is such a good way to describe it. You do change forever after diagnosis. And while I want to live a full, long life, I don't really want to see the world how I did before, which was so limited. I read a quote the other day that read something like, "People who want to live forever don't know how to spend a rainy afternoon."

    Leftfoot, I love that avatar! I knew it was a ball in a net but thought it was a tennis ball or--I'm embarrassed to say--a robot eyeball. I blame the brain met husks for that whackadoodle interpretation.

  • uoppal
    uoppal Member Posts: 12
    edited February 2013

    I would like to share my story of WBR.  MRI showed unnumerable punctate points and one 9mm lesion.  Dr. felt strongly that WBR was needed.  He said that should clear up the small ones, prevent new ones from popping up & reduce the size of 9mm lesion (for gamma later).  Amazing how different doctors seem to have different views on WBR.  I was terrified of long term effects; Dr. said they are exaggerated and most online data is very old.  They have improved it and he didn't expect me to have problems.  He told me I would be able to drive myself to & from appts.  I did it.  Had treatment over a three week period. 

    The treatments themself were not bad; just bright lights (from your brain) as the radiation buzzed.  Fatigue was my issue.  Week 1&2 I felt fine, week 3 started to feel a little 'buzzed'.   Week 4 - no radiation but it keeps on working - I did not feel safe driving.

    It took about two months for me to feel back to normal.  Had last treatment mid-Oct 2012.  Just had my follow-up MRI; not only are all the punctate points gone, the 9mm has also cleared.  Dr told me to go and enjoy life.  We will check again in 3 months.  Have to say I feel no effects of radiation.  And, I think I finally see some hair growth!

    That's the good news.  Bad news is body MRI has detected 3 <1cm liver lesions.  I'll be back on intravenous chemo I'm guessing.   I have been taking Xeloda.  

    I was terrified to get the WBR.  Now, have to say I'm glad I did it.  If I can answer any questions I'll be glad to do so.

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

    Wow, Uopal, that's a good testimony.   Did your scalp not feel burned?  Did you not drive for the 2 months you felt weird?

    Dear Searle, thanks for the background.   Im sorry I was spelling your name wrong.  Tongue Out

    Thx, Kathy

  • uoppal
    uoppal Member Posts: 12
    edited February 2013

    During WBR my scalp got dry, but not burned.  My doc had me apply cortisone 1% cream to my forehead and temples.  They got a tiny bit red, not much more than being out in the sun for a day.   I did not drive the week after wbr ended.  I drove just short trips for the next few weeks  I felt better every day once week 4 ended.  Now I notice nothing.

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

    Wow, Uoppal, you're busting my argument!  

    Hey, I feel like I'm monopolizing this thread....   but don't you agree that typing out your concerns helps to sort things out?   I hope y'all continue to do so.

    I hope to hear that FMG is not suffering HA's all day, but if you are, let us be your shoulder to cry on.

    I know we all want to hear from Blossoms: what is going on?

    leftfott, still kicking that ball?  RV, Jill, every braniac.....?

    This feels like my main thread so here goes:

    I keep going in circles re stopping Rx because there are 2 events going on.  Brain, which can only be treated by rads, and chest, which has been responding perfectly to Halaven.   Til now?  Upper resp symptoms are matching last years mess before H.  So if H. fails, and brain continues percolating, you got 2 confusing riddles.

    ARghhhhh.   Oh sh*t, I'm retired and having some fabulous days.  Beautiful GD, son is stable, DH very kind, dog adores me.  (He likes me best) Next month is next month!

    K

  • lwd
    lwd Member Posts: 234
    edited February 2013

    Kathy,

    Just enjoy fabulous days and your family.  You deserve it!  And our dogs - aren't they great?  Mine loves me best, too.  My DH finally admitted it.

    Lane

  • formygirls
    formygirls Member Posts: 154
    edited February 2013

    Kathy,

    My headaches continue to be bad. It is hard to imagine that I will have headaches forever till the end.

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

    FMG, Have you thought of going to the pain center/clinic?   is there one?  is that an absurd idea in the grand scheme?

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

    I'm here, I'm here...just got back from 11 days in Kauai!!!  We had a lovely time and other than the occasional nausea from carboplatin treatments, I felt pretty good.

    For those of you contemplating WBR and worrying about side effects, here's my story.  I had many small mets so I started 10 treatments on 11/6.  I really didn't notice anything except elevated blood sugar from the decadron that I took for about 3 weeks.  I am diabetic and it really wreaked havoc.  So we added another diabetic drug and I weaned off the decadron as quickly as possible.   I think I took my last dose on Thanksgiving.  The day after Thanksgiving, we boarded a plane for Las Vegas, where we spent 5 days having fun - hot air balloon ride, scattered my mom's ashes on Mt. Charleston, saw a couple of shows, played slots, walked a lot and had fun.  I didn't have my "usual"  energy so we went back to the room for an hour or so to rest a bit and we didn't stay up all night.

    Most of my hair fell out on Thanksgiving but it's now growing back in...I have a little mullet in the back and a bit of a Mohawk growing on the top.  My new chemo (Gemzar started today) is not going to make it all fall out again so I am optimistic that I may have a full head of hair soon.

    Enjoy life, braniacs.  Don't let your doc ignore bothersome symptoms.  I had to be insistent on certain nausea meds that I wasn't "supposed" to need for carboplatin.  At the end, I was taking all the same stuff that I took when doing DD AC/T.  I just puke easy...LOL!  We finally got it under control because I wasn't going to give in to daily puking!

  • nancyh
    nancyh Member Posts: 185
    edited February 2013

    Hey gals,
    I haven't been on this thread for a while, but figured I'd check in.

    K-lo - you are so amazing, I respect your take-charge attitude.  

    LuvRVing - so nice to hear you had a trip to Kauaii, sounds wonderful!

    As for me, I met with the rad onc today to get a plan for my latest brain lesion.  He's reocommending cyberknife  Sounds easier than gamma knife because they don't use the frame, but use the mask instead.  Can anyone tell me, is the mask freaky or uncomfortable?

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

    My mask wasn't that freaky.

  • formygirls
    formygirls Member Posts: 154
    edited February 2013

    Nancy,

    I have had the mask done. It was ok...not bad at all and did not hurt or feel wierd.



    Michele,

    Glad you enjoyed your trip. I love reading about your trips and seeing your photos. It inspires me to nag my dh about taking trips but he can never take time off:)

  • nancyh
    nancyh Member Posts: 185
    edited February 2013

    Okay, good...the mask sounds very doable.  I am so happy not to have the gamma knife frame - I've still got little dents in my head from when they did that last year.  

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

    Formygirls - my DH works from home, so he just worked some while we were in Hawaii, it was no problem.  With this arrangement, we can travel, he can work until he's 65 and qualifies for Medicare.  Giving up the salary is one thing but paying for COBRA is such a double hit.  We do want him to retire but right now this arrangement is a decent compromise.

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

    Really awesome news, Michelle.  Thanks for spreading a great attitude.

    Truelly, Nancy, the mask is amazing.  You would think it would be smothery, but it is really breezy and pleasant.  Damn, we are lucky for how far things have come.

    FMG hope you canget out of town.  If Dream Foundation comes thru we will go/  otherwise, DH is kind of frozen in his job.   Does that make sense?  he wont demand time unless I tell him its time to demand time/////

  • braids3
    braids3 Member Posts: 131
    edited February 2013

    i have 5 masks and turn one into a plant hanger one is outside the kitchen where i use to work the others i use to put things in on the wall. hopefully i won't have any more i just call it wack a mole ha ha love and blessings to all!

    chris

  • nancyh
    nancyh Member Posts: 185
    edited February 2013

    Chris - I was just thinking about the whack a mole thing, that's exactly how I'm feeling these days.  Too funny about making a mask into a planter!  

  • nancyh
    nancyh Member Posts: 185
    edited February 2013

    I've meaning to ask you gals, do any of you get pressure headaches?  I've been having these strange headaches that are similar to sinus headaches, except the pressure/pain is in the back of my head, not in my sinuses.  The pain is worse when I bend over.  Can mets cause this?  I have been assuming these headaches were just garden variety "life gives you headaches" headaches, not related to my mets, but now I'm wondering.  

  • ravendreamweaverlove
    ravendreamweaverlove Member Posts: 5
    edited February 2013

    hello.

  • ravendreamweaverlove
    ravendreamweaverlove Member Posts: 5
    edited February 2013

    I am Reagan. Just had news of brain mets in December from Breast cancer. nice to meet all of you. was diagnosed in 2010

  • Cathy2
    Cathy2 Member Posts: 40
    edited February 2013

    Nancy I've been having the same type of pressure headaches. I went for an MRI on Tuesday but have not heard anything yet. I will let you know when I hear anything.

  • justjudie
    justjudie Member Posts: 196
    edited February 2013

    Hello Teagan and welcome. I suggest you start a new topic to introduce yourself. A .ot of people must s,I'm various topics that get long, so people will see your introduction a d better respond t it if you start a whole new topic.



    Anyway, welcome. Sorry you have to be here but it's a great site.

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