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Brain Mets Sisters

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Comments

  • apple
    apple Member Posts: 1,466
    edited March 2012

    good news K-Lo

  • pq2
    pq2 Member Posts: 66
    edited March 2012

    K-Lo -- LOVE THIS NEWS. 

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Ty, I was prepared for a headful of junk, don't know why. Praise for my neurosurgeon and gamma. Best wishes for all of us head-cases.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012
    Just finished my 6th of 10 radiation treatments.  I can handle the radiation, as weird as it is, but the steroids?  Yuck.  They mess with my stomach, make me way too emotional, sleepless and crabby.  Plus I eat everything in sight.  I have been undiagnosed anorexic my entire life!!  Now I am always hungry!!  I have a rotten headache most of the time.  My question is, how long do these side effects last?  My doctor said he would start weaning me off the steroids next week.  I had a good mind to play doctor and start today!!  I won't because I know there is a reason for them, but come on!!  Onward and upward!!
  • apple
    apple Member Posts: 1,466
    edited March 2012

    big hug jodi.. The steroids reduces swelling n in the brain.. i think fluid protectively forms around the tumors as well as the tumors themselves displacing tissue.. Perhaps someone could further explain.

     If there is swelling you could have a seizure.. not fun at all.. it's like a brain heart attack.. very debilitating.. My massive one basically knocked me out for a month.. altho i could function and re learn and I have basically relearned everything, .  I didn't even know what jello was at the time..  I thought it was the best food ever invented when they offered me some.  I totally didn't recognize it and was absolutely delighted... green!.

    anyhoo.. sorry to be so harsh.  you only probably have a few more days.. you can do it.

  • mauimom
    mauimom Member Posts: 53
    edited March 2012
    Hoping this is posting my girls...
     
    I've had my first 3 wbr now - only 22 left...and feel like i've been hit by a truck.  I'm so exhausted but think it's probably mostly just the stress more than the radiation, right?  the steroids are messing with my ability to rest at all even when my body feels like it could just fall over from sheer exhaustion.  
     
    If the picture doesn't work this time, I'll give it a go again - tech capabilities are not my forte! 
  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    No girls yet. Whatever the cause radiation fatigue is very real!

  • Rohm
    Rohm Member Posts: 18
    edited March 2012

    Jodi - The steroids are rough indeed!  I'm struggling with all the same things you mention, eating too much, not sleeping enough, crabby (my poor family!), ugh.  I have weaned down by 1/4 so far, but I'm stuck there for now.  I'm hoping to talk maybe step down some more this weekend.  I don't want to risk a siezure, but what I would do for a good night's sleep!

  • apple
    apple Member Posts: 1,466
    edited March 2012

    i awake at 3.. stay awake till 4.30 slep till maybe 5.. get up, work, work, work.  so much to do and so little ineffective time.

    hope for time for a nap but i don't sleep.. it's different.  that's for sure.

  • chainsawz
    chainsawz Member Posts: 113
    edited March 2012

    I got a little behind on this thread so sorry for the late response  mauimom...xanax is great for keeping the freak outs to a dull roar.......

    keep breathing and putting one foot in front of the other :>  this news rocks your world, but there
    IS hope!!!  I just finished 15 WBR and my brain is the same.  I actually remember numbers a little better.  radiation is exhausting so just allow youraself to rest.  I;ve read from many others that yiour energy will come back when this is done,,,it takes a bit but it should happen

  • pq2
    pq2 Member Posts: 66
    edited March 2012

    Congrats, chainsawz, on finishing WBR. Apple is right -- don't take yourself off the steroids. I know, they are just plain hateful, but they are protecting your brain from some pretty scary stuff like seizures and swelling. The weaning off is important too and I will warn you not that much fun either but you will at least sleep. Use a tranq to sleep and help with the heebie jeebies. The side effects from WBR start to diminish a few weeks after treatment ends but some can last for months. The side effects from steroid start going during withdrawal but some can last a while til your body starts making its own steroids. 

  • not
    not Member Posts: 48
    edited March 2012

    Has anyone tried this? It sounds like it cures cancer. "LEAF" is a 15 minute clip that explains how raw cannibis cures cancer and diseases without getting you high. I'm watching the hour movie "Run From The Cure" now. The link is below. This sounds very hopeful. In peace and love. Gina

    PLEASE SHARE this video with as many people as possible! With all the misconceptions about cannabis, we need to get this info out there to set things right! Thank-you

    This video was made by: http://www.youtube.com/cbd600 and re-uploaded onto my channel because I wanted to help spread more awareness on the health benefits of raw cannabis (that is non-smoked & non-heated.) RAW cannabis is non-psychoactive, meaning it will not get you high. 

    Raw cannabis= Immune modulating, anti-inflammatory, antioxidant, anti-tumor/ anti-cancer, pain-relieving, anti-diabetic, antispasmodic, anti-anxiety and so much more. 

    --------------------------------------------------------------------------------­­---

    ****ABOUT THIS VIDEO****

    Leaf introduces Dr. William Courtney and Kristen Peskuski of Cannabis International; along with the people involved in researching, promoting, regulating and benefiting from raw cannabis.

    Dr. Courtney is a physician and researcher from Mendocino, California, who gives medical marijuana approvals to qualified patients in Mendocino and Humboldt Counties. Kristen Peskuski is a researcher and patient who put her systemic lupus, rheumatoid arthritis, interstitial cystitis, and numerous other conditions into remission juicing fresh cannabis.

    They help make sense of the science behind patient's recoveries from a diverse range of medical conditions. Attorneys, physicians, law enforcement, medical care providers, patients and their families discuss their experiences with medical cannabis. They specifically focus on juicing fresh cannabis, which is non-psychoactive and contains medical properties 200-400 times stronger than traditional, heated cannabis. 

    Patients have reported success with osteo and rheumatoid arthritis, autoimmune disorders, cancer and many other conditions using this unique therapy.

    Please check out http://www.cannabisinternational.org for more information.

    Please support Dr. William Courtney at http://www.CourtneyforCongress.orgso that no one has to be afraid to use the medicine they need.

    **MORE VIDEOS ON THE TOPIC OF CANNABIS & ITS HEALING PROPERTIES**

    RUN FROM THE CURE (A MUST SEE VIDEO about curing cancer with "hemp oil"...and just to clarify, that's hemp oil, NOT hemp seed oil)http://www.youtube.com/watch?v=0psJhQHk_GI

    Cured: A Cannabis Story-
    http://www.youtube.com/watch?v=0tghUh4ubbg&feature=channel_video_title

    One of the best marijuana docs- http://www.youtube.com/watch?v=Dd6oJjx8ze0

    The Power of Raw Cannabis- http://www.youtube.com/watch?v=qgEP9FdIzT8&feature=relatedCategory:News & PoliticsTags:Leaf YouTube 15minute health educational cannabis juicing marijuanacbd healing alternative therapy medicinal cannabinoid thc thca WilliamCourtney Kristen Peskuski medicine lupus The Power of RawCannabis federal law raw leijaturunen felipesparx29License:Standard YouTube License
  • not
    not Member Posts: 48
    edited March 2012

    Here's a medical journal article.

    http://www.jleukbio.org/content/82/3/532.long

    :"TRUTH: "...studies have shown that cannabinoids have anti-inflammatory and immune-modulating effects...we investigated the effect of JWH 133, a selective agonist for cannabinoid receptor 2, the main receptor expressed on immune cells, in a model of autoimmune disease, experimental autoimmune uveoretinitis (EAU). JWH 133 suppressed EAU in a dose-dependent manner... the cannabinoid agonist JWH 133 has a high in vivo, anti-inflammatory property and may exert its effect via inhibiting the activation and function of autoreactive T cells and preventing leukocyte trafficking into the inflamed tissue."--- I believe JWH 133 is a clone from cannabis designed by John W Huffman. :).d"Anti-inflammatory property of the cannabinoid receptor-2-selective agonist JWH-133 in a rodent modelwww.jleukbio.org‎2 Correspondence: Department of Ophthalmology, School of Medicine, Institute of Medical Sciences, University of Aberdeen, Foresterhill, Aberdeen, AB25 2ZD, UK. E-mail: h.xu{at}abdn.ac.uk
  • apple
    apple Member Posts: 1,466
    edited March 2012

    I'm kind of thinking I'd miss the getting high.. it's been years.  I used to chew hemp plant.. and tho it was a very low dose hallucinogenic, (it grew in my neighborhood) .. it definitely, worked.  I wonder if it has to be heated really, or smoked.  (i'm an old hippie. ha ha)

    thanks for the link

  • tina_uk
    tina_uk Member Posts: 5
    edited March 2012

    Hi everyone

    hope everyone is coping with treatments ok. I'm on my way to my last wbr now. My onc gives the dose over jyst 5 treatments which seems much fewer than many of u US ladies. I've hated every second + think the fact I only had to get through this wk has been my saving grace.

    I'm also exhausted. Steroids are hell but my lungs are not great + so my cough/ breathing is really hindering my rest. I have reduced my dose right down, which has helped alot. I was on 8mg of dex intially which I increased to 12 last wkend as the symptoms were freaking me out. Once wbr started, my onc said go straight back down 8mg, and told me me to reduce further to just 4mg mid week.

    Wishing everyone strength to get through this nightmare,

    Love Tina x

    ps KLo- love your news. Huge congrats :)

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Thanks you guys!  I was over the top yesterday.  I will definitely not wean myself.  I really know not to wean myself off the bad ass steroids.  I just want to be myself again.  These involuntary, not-able-to-speak crying episodes are ridiculous.  My poor family think I need help, when I am furious this even happens.  Oh, by the way.  I am living on marijuana until this part is over.  It is the only thing that helps with my stomach.  I don't mind being high, although I love being straight, I will higher than a kite before I take another pharmie or feel like I did.  You can call me the stoner.  Thanks again.  I am heading for Timber Cove CA for the weekend.  It's on our coast.  We have a cute little vacatiom place and I can use the R & R.  Coming home Sunday for our beautiful daughter's 21st birhtday dinner.  Should be a nice weekend.  Hope you all have a restful, loving weekend.  love to you all, Jodi

  • chainsawz
    chainsawz Member Posts: 113
    edited March 2012

    jodi....the not-able-to-speak crying episodes are common for us.  This is terrifying stuff....who wouldn't sob??!!!   I thought I had gotten a grip before I had the last brain progression,.  I cry but now with this crazy high pitched scream.  makes me think I'm crazy.  Just know the steriods can have a big hand in our emotional displays.  I warn people ahead of time that if I cry, it's the steriods.  If I'm having a scan or going somewhere that might be emotional...like the hair salon to have my head shaved again. I pop a xanax and get nice and relaxed and don't worry I'm gonna melt down in front of everybody :>  I hope your weekend is fantastic!!!!

    edited for my horrible spelling!

  • apple
    apple Member Posts: 1,466
    edited March 2012

    oh my.. I am having a bit of side effects from the 10 WBR i've completed.. balance, sloppiness.. .. i am the company secretary and am making so many mistakes.. thank goodness for spell check.

    4 more to go when i get back.. It's a good thing they are not painful.

  • mauimom
    mauimom Member Posts: 53
    edited March 2012

    Is five weeks of wbr unusual? It seems a lot of folks are talking about 10-15 times...I am starting to feel nauseous and dizzy too. Already - its only been four days. And, did/do you smell something right when the radiation turns on?



    Looking forward to going to a tee ball game tomorrow morning and a friend's son's first birthday party....hope you're all looking forward to your weekends too.

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Apple, that must be a drag. Musicians are so precise. Do you think you may have neuropathy from abraxane? I dropped things and fell due to numbness in fingers and toes. They turned the dose down for that.

    I do everything slower now. Carefree, haphazard, multitasking days are a memory now. Even walk wider for balance. No sexy shoes.

    oh well once your hair is grey, you get to be a dignified gentlelady.

    Chainsawz I've been hitting the ativan during the day. What if it stops working......Hitchcock nightmare!

  • chainsawz
    chainsawz Member Posts: 113
    edited March 2012

    mauimom - I think most of us see the blue light during the zap...I smelled bleach.  I was very nauseated but that has stopped now that I'm done so take anti-nausea meds to help.

    klo- if ativan fails...then i'm in trouble,too!!!!  I'll just knock myself out with pain meds.  I read somewhere abou a study that gave  terminal patients magic mushrooms or a component of.... they stopped caring about the dying and enjoyed more.  Maybe that's what I'll so unless they give me the munchies cause I am already way too fat to gain anymore weight!!!

  • pq2
    pq2 Member Posts: 66
    edited March 2012

    Hey perish the thought Ativan won't work at some point. I'm in trouble too! Yup I saw a purple blue light and there was an ozone sort of smell. Mauimom I had 4 weeks of WBR. It's just a matter of speading out -- it can minimize SEs. Chainsawz, you are the best! 

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited March 2012

    hey all, just want to mention this although i am sure most of u know this already - taking steroids in the morning hours after eating helps to less disturb sleep cycle, however do not suddenly change your routine as this can make u feel worse, i found speaking to a radiation nurse to clear doubts over the phone helped a lot for my mom, even about managing side effects...and taking lorazepam at night will help relax and sleep better (lorazepam can be taken 2-3 times per day), i know most of us would want to avoid lorazepam as much as we can, but i suppose a sound sleep is better than tossing and turning all night...best wishes to all xx

  • kalaoamom
    kalaoamom Member Posts: 15
    edited March 2012
    Mauimom Maximum I too am doing is 25 I have 6 more to go. never used steroids in treatment they gave them to me when first diagnosed but I was a wreck and needed to function somewhat normal for my 6 boys who lost dad a yr ago. I take boswellia given to me by my natural path oncologist, Took a product called nausea ease that worked wonders. with 6 to go the fatigue is increasing and the amount of hair I have is decreasing. my scalp feels like it did when my sister pulled my hair when we were little!


    I was told 5 weeks gives you a less amount on a daily basis but the maximum amount stretched out over 5 weeks. Certain criteria need to be in place to recommend this tougher treatment. where in Maui, mauimom? I am in Kona

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Hey everyone!!   I had a nice relaxing weekend.  No radiation, thank dawg.  Still hating the side effects of the steroids but I only have two more lousy treatments, and then they will wean me off.  I seriously cannot wait to be normal.  We celebrated our 21 year olds' birhtday at our favorite french restaurant last night.  I hate my speech right now and the way I look, (vanity is horrible) so I mostly just observe.  Heaven knows our kids and nieces and nephews keep me entertained.  My husband is a phenomenal caregiver considering this has always been my role.  We are getting through this together.  Mauimom, I think about you everyday.  I smell that weird smell too.  I try not to breathe.  Chainsawz, thank you for your feedback.  It really does help to know I am not alone in this.  It sucks.  

  • mauimom
    mauimom Member Posts: 53
    edited March 2012

    Kalaoamom, I'm in wailuku...nice to have a neighbor island connection. I'm trying to take the dex only in the morning which is actually when the pain is worst anyway. So far it helps. At least for most of the day. No weird smell for me today - the machine wasn't working right so I waited until the tech came out to say they hope to have it fixed by tomorrow morning!



    Thanks too for making me feel like I'm not the only one with the weird smell thing - as jodimomoffour said, it helps to know I'm not alone floating out here.



    Hugs to you all.

  • lorieg
    lorieg Member Posts: 79
    edited March 2012

    Hey ladies! Read all your updates to catch up. I had SRS last week after WBR in January. Took my last steroid pill from SRS this am. So far SRS was much easier than WBR. I didn't have the issues coming off the steroids. Best wishes, sisters!

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012
    One more dose of radiation.  Keep telling my husband I am not doing it.  He says he will drag me, and then take me to breakfast.Cool  I really am done with this part.  I am starting to wean off the steroids, doctor's say so.  I am so looking forward to not feeling like this.  The doctor said I should start seeing the results in a month or so.  I have a body cat scan the 19th, and  restart the chemo the 20th.  Taxeterre?  Does anyone have any idea what this is going to bring?  I have only had one bout of it, before the metasis on my brain.  They postponed until after the radiation.  My oncologist said something about me giving myself shots to keep up my blood counts.  I really am a fish out of water.  I am like the ostrich.  Head in the sand, ass in the air.  Hope everyone is having a peaceful day.
  • pq2
    pq2 Member Posts: 66
    edited March 2012

    jodimomoffour -- Congrats on the final WBR day. SO GLAD it is over for you. I hope the SEs subside quickly for you but it will be a month or two, alas! 

    I just got report that the third brain fluid test during DepoCyt intrathecal chemo is negative for BC cells. Two small new lesions in spine that can be controlled. WBR and chemo is worth it for brain mets!!!  

  • tcrs
    tcrs Member Posts: 6
    edited March 2012
      I am now a member of the brain mets group just discovered in the last month.  I have read the entries made by the strong women posting here.  I began having vision problems early January.   Dx with eye tumor multiple small brain mets, small area on adrenal gland, hip and lymph node in chest .  I'm now having WBR 15 times and have started on Femara. I am still in a state of shock and  having a very hard time trying to type  this.  I was nearly 13 years out from the original diagnosis of breast cancer and thought I was in the clear.  I don't know how long this has been lurking around, but I'm worried that maybe it was not found soon enough.

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