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Brain Mets Sisters

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Comments

  • mara51506
    mara51506 Member Posts: 6,512
    edited March 2017

    Thanks for the links Agness.

    Kaption, you are almost 1/2 done rads. If you get the weekend off them, enjoy yourself. Thinking of you.


  • mara51506
    mara51506 Member Posts: 6,512
    edited March 2017

    Momatt, good luck to you and Dani. I hope the trial helps slow, or even better, halt the progression.

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2017

    yes, Mara, today is number 5 of 10. Thanks for thinking of me.


  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    Thank you ladies!

    Kaption how are you feeling?

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    Ann thanks for the great link!

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2017

    Momall,

    I've been exhausted but mainly because the day before radiation I started running a fever from an upper respiratory infection. I got started on an antibiotic Monday night. But, mostly I've gone to treatment and then gone home and slept. The fever is finally almost gone-just 99.5 in the middle of last night. Normal this morning.

    Radiation itself is, as many of you know, unpleasant but doable with Valium. No treatment headache- but he said that is possible. Overall- just really tired.

    Thanks for asking.


  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    WOW, hope they gave you a name for the respiratory infection, I am sorry, but I see so much, I just would not want them to make a ball of your symptoms and just dismiss it. To have fever for so many days, and already on antibiotics...

    Hey like Mr. Rogers used to say, I wish you a speedy recovery. Rest, is good for the body. Counting down with you.

  • Becs511
    Becs511 Member Posts: 118
    edited March 2017

    Momatt- I have been on a combo of Xeloda and Herceptin since June 2016 and have been stable ever since. In fact, besides my shrinking brain mets, my last scan earlier this month showed the only remaining cancer is thickening of skin on my left breast, and no place else in my body! This has been my fourth line of treatment in almost 3 years and has been the one that has worked the best for me (so far). In fact, since I have been stable for such a considerable amount of time on this protocol, I am meeting with a surgeon on Monday to revisit any possible surgical options (lumpectomy, mastectomy, etc).

    I hope it works wonders for your daughter has it has for me!

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited March 2017

    Becs, how are your local seizures? I'm still having them myself but they are mild and intermittent. But I had a more discombobulating one earlier today. My next brain MRI isn't scheduled for another month and I hope it's just healing tissue

  • Becs511
    Becs511 Member Posts: 118
    edited March 2017

    They are still there, and this point, we think they will be permanent. They are basically just like mild muscle spasms on my left side, from the top of my left butt check to my bra line. But I am on three different anti-seizure meds and they seem to be under control. My neurologist even gave me permission to start driving again. Although since I live in NYC and don't have a car, it is more in theory a good sign, than some realistic that impacted my way of life. Ha! I have also returned to the gym in order to build up my endurance and strength. I have been doing cardio on the treadmill and lower body strength training. I am going on a 7 night cruise to Bermuda in May over my 36th birthday and to honor my 3 year mark of my Stage 4 de novo BC diagnosis (both in the same week). My goal is to have enough endurance to handle snorkeling in the ocean during the trip. I can't wait!!!

    I hope yours is a sign of healing, which would be great. I know my seizures were worse while I was dealing with necrosis.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    Becs love the way "you sound" and the pict! Good for you. The trip sounds wonderful! You'll have that cute crew...works! Just to clarify that's not the combo that Dani will be on. She was on Xeloda and Herceptin was grandfathered. But it did not do her any good. So she's moving on.

    Badatuser maybe you should mention to your doc about it, see if they agree to just wait for the scans. Hopefully was just a one time thing,but...

  • juli24
    juli24 Member Posts: 80
    edited March 2017

    What would you do? I have Stage 4 triple positive breast cancer. Two houses down from us a much younger lady was diagnosed with inoperable brain cancer. She fought but lost her battle after a year. Today I find out my next door neighbor has a very aggressive type of brain cancer. Three houses in a row with cancer. We have a corn field beyond our properties but otherwise I cannot but any common exposure to something environmental. I cried with my neighbor today. I could totally relate to her fear and anxiety. She had her surgery on Wednesday.

    I just feel like there must be some commonality linking the fact that we all have cancer. I guess it could be a coincidence. To make matters worse, I have MS which limits my ability to get around easily. I feel like I want to help but am at a loss as to how I can manage that.

    I am rambling & not even sure if this is the right place to put this. Any thoughts

  • agness
    agness Member Posts: 406
    edited March 2017

    hi,

    I just wanted to put this out there so others would be warned. One of the viruses that is going around appears to cause mild viral meningitis. Why I think this is that my older son was hit with it and missed four weeks of school and developed a headache after two weeks that included the back of his head and spine. He's ten and was in good health before getting sick. I was so worried that I brought him to urgent care but in kids they hold off testing until they are falling over with an illness, in this case with bad late onset meningitis symptoms -- proper diagnosis would require a lumbar puncture under general anesthesia and he wasn't sick enough to warrant that.

    I caught this creeping crud too and whileI used tons of saline rinses and coughing, spotting and blowing my nose to not have the virus turn into a sinus infection (I got a sphenoid sinus infection last spring from a flu-like illness and my wgc and RBC are at the low end of normal since doing carboplatin and rads). On day six of being sick though I got IT treatment into my Ommaya port in my head. After a few hour shift I was totally wiped out in a way I wasn't before getting IT Topotecan and iT Herceptin, I needed to sleep fo several hours i felt so tired and awful. I said to myself "I think over damaged myself", I think was that extreme. Iv'e spent them the last few weeks trying to recouperate from that, it's caused some slight memory issues, sleepiness, slight shaking and balance issues. Finally yesterday i was feeling turned i turned a corner on healing.

    I have had a rather unique first hand experience with meningeal involvement due to my BC (breast cancer) progression. I know more subtle signs of CNS issues now. I know more than the docs could ever know really -- because I've lived through LM and have an Ommaya port and I saw how treatment and this virus in my brain didn't mix well. I would now say that one shouldn't take IT treatment when you are sick, even if it is the end of an illness -- better to wait that hurt yourself.

    I wanted my scans done before I could comment on it. My brain scan showed no progression and my body CT scan only showed that I'd had a recent illness in my lungs. No new lesions anywhere

    Take care and know that it is one facet of the creeping crud virus.

    Ann

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    Ann wow, crazy what you went through. Thanks for the heads up. And is your son back to himself? AND last bot not least, congrats for the wonderful news. Stable is great.

  • jackboo09
    jackboo09 Member Posts: 780
    edited March 2017

    Hi ladies

    I fear I may have brain mets. Yesterday I had a migraine, aura and my leg felt weak. It hasn't improved overnight and I woke with it a 4am.

    Occasional pain in temples and sinus pressure but sort of hurts all over. I am due to travel today to London for a second opinion and feel rubbish. No dizziness of nausea, just very tired. Only dx stage 4 on 15/3!

    I am on 20 mg Rivaroxaban which has SEs of leg weaknesses and headaches. Maybe it's that?

    Liz

  • agness
    agness Member Posts: 406
    edited March 2017

    momsllthetime - yes, thankfully he started getting better a couple of weeks ago. The crazy think was that we both got sore backs and necks from walking around downtown Seattle the other day. I was aching something fierce for a day afterwards. I would have thought it was just me (brain rads and all) but he was feeling stiff too. Still, I elsewise we seem to be on the mend.

    Liz - it very well might be a side-effect of the medication. Take a deep breath. With brain mets it is definitely worth knowing about sooner than later so you have more options. Keep us posted.


    Ann

  • mara51506
    mara51506 Member Posts: 6,512
    edited March 2017

    I agree with Ann after reading the side effects of the drug. While that is the most likely thing, of course your onc should follow up. Good luck.

  • txmom
    txmom Member Posts: 221
    edited March 2017

    Hi I saw this article and thought some of you might be interested.  Sending you my love

         https://www.cityofhope.org/inside-the-lab-disguised-breast-cancer-cells-can-invade-brain?utm_source=Facebook&utm_medium=Social&utm_campaign=FBPaid_Blog_Breast_Cancer_Brain

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2017

    I get to post my first good news in almost 5 months. Some who have been "with" me awhile, like momall, may remember that my TM started going crazy several months ago. Then I failed Faslodex and my chin and tight temple went numb. I started Xeloda the first of February and was dx with my first non-bone involvement, which is likely brain fluid. So, all bad stuff for a while. I'm getting #8 of 19 rads to the temple area today.

    Saw my MO yesterday and the TM were SIGNIFICANTLY lower. All other blood work was acceptable.

    I'm taking the TM as a sign that X and rads are working and there is better news ahead!!!

    Woo hoo!And my son and family are here from SF to celebrate with me this week!


  • Goodie16
    Goodie16 Member Posts: 297
    edited March 2017

    Great news Kap!! I'm so happy you are seeing positive treatment results. Enjoy your visit with your family!

    Jackboo - never hurts to call your MO and get checked out, but I agree that it's a good possibility that your meds are causing your SEs.

    Agness - completely off topic, but I just realized you are in Seattle. My BFF and I are planning a trip to Olympic NP in September and are going to spend a few days in Seattle too. I'm so excited to see your part of the country.

    Hope everyone else is feeling well on this Thursday!

    Carrie

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    Kaption that is just wonderful. So happy for ya!! And you are not feeling that numbness that you felt right, so that's good stuff. Are they planning on an MRI of the Brain when it's all done? Celebrate!!!

    Ann what a pain in the neck (pardon the pun) to have to deal with these reminders. Only better from now on!!

    Jackboo let's see what doc says today. Hope you feel better. it could def be the meds.

    Hi everyone,

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2017

    yes, there will be a follow up MRI in a month. And a PET/CT for the rest of me.

    As some of you know better than I, the diagnosis of brain fluid mets/LM is tricky. So that nervousness remains. But, if Xeloda ends up being the miracle drug-yay!


  • mara51506
    mara51506 Member Posts: 6,512
    edited March 2017

    Sending you my good wishes. Glad to hear things are improved for you Kaption. May it continue.

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2017

    Ten rads done to right temple! Follow up MRI end of April.

    Back on Xeloda tomorrow. Going to try and relax the non doctor appointment weeks coming up!



  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    HappySOOOO happy for you.

    everyone take good care!

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2017

    HappySOOOO happy for you.

    everyone take good care!

  • mara51506
    mara51506 Member Posts: 6,512
    edited April 2017

    Glad you are done rads. You deserve a break for sure.

  • Goodie16
    Goodie16 Member Posts: 297
    edited April 2017

    Congrats on completing rads!!

  • Kaption
    Kaption Member Posts: 2,934
    edited April 2017

    Finished the rads Friday, started back on Xeloda on Saturday. Got hit with a double whammy of fatigue. Slept essentially all weekend! But, feeling better today.

    Thank you all for the support.

    Is anyone active on here have leptomeningeal mets? The discussion board for it has not had any new posts for 2 years. Thanks.


  • Pagej
    Pagej Member Posts: 42
    edited April 2017

    Catching up on this thread haven't been on in quite some time. Lots going on hard to keep track of everyone's updates, I read some bad and some good. Such is life I suppose. Congrats to everyone kicking butt out there and living life.

    Maybe I haven't been on lately because I think about my brain tumor less and less finally.

    The latest brain MRI (dec) showed no new shrinkage but no progression either. Body scans (feb) still proving no cancer tumors developing or cancer anywhere as far as anyone can tell. I had 5 scans in a year. so I continue to be in the brain only cohort!! Not on any chemo of any kind. Brain only happens it's rare though. First site of spread and perhaps only site of spread.

    My onc only wants to body scan every 6 months now it's been nice to not have to worry about scanning all the time. More normalcy is good.

    The weirdest thing lately is the nerve damage from my stroke. Tingling burning on my left side I feel it everyday now. Dr thinks it may just go away on its own eventually.

    Hopefully brain MRI in May shows more shrinkage it's taken a while as it started out at 2.5cm when we radiated it a year ago and is around 2cm now.. I worry it will start growing again if it doesn't keep shrinking but I guess there's always something to worry about isn't there.

    Anyone else have the burning sensation from tumor, radiation or stroke affects?? Or a medium size tumor who doesn't want to disappear but never grew??


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