Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Brain Mets Sisters

1…139140142144145…279

Comments

  • agness
    agness Member Posts: 406
    edited January 2016
    big Hugs to you Bad. I know, this group has been amazing and I too am so greatful for it.






    Lauralind - it might be brain swelling. When is your next scan
  • Bosco19
    Bosco19 Member Posts: 177
    edited January 2016

    just had results of a further brain MRI scan which shows nothing in brain but new progression to lining of brain. Any advice welcome. Onc thinking of intrathecal treatment. Feeling shocked.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    Bosco- sorry for the mixed results. No advise on treatment of the lining. Best wishes.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited January 2016

    Bosco, I am sorry about your news.

    Agness, I remember at one point you made a mention of lower quadrant breast tumors being a risky place for brain mets. I did have a lower quadrant tumor, although I never had any IM uptake on scans and my RO assured me that chain had been radiated. I was wondering if you had more info about the lower quadrant-IM-brain mets link. I'm really curious and a little pissed that women aren't being informed of this risk

  • agness
    agness Member Posts: 406
    edited January 2016

    Bad - I'd be happy to post my references. They were quite obscure and I don't think they are commonly known to surgeons and oncologists -- but it seems like they should. I am sorry I haven't posted them before but you are right they will do more good here for patients.

    Bosco - that is not a good development. I see you are TNBC and I'm going to brainstorm...

    Yes a port would be appropriate - it hurts a lot for s couple weeks and then it is almost like it's not there. If you get one and you have hair, make them do the pediatric size (it's less obtrusive) and insist that your hair not be cut (they can use petroleum jelly). Theses small things can help you as a patient to feel more normal which.helps keep your immune system strong. If cancer is on the lining then getting drugs to the CNS is spot on.

    TNBC like HER2 has shown itself to be a strong immunological target. TNBC patients are being given Herceptin neoadjuvantly so it can work in some instances. I don't know that anyone has ever tried IT Herceptin but there is a way to make them try it. Maybe you could be the first.

    People survive LM but they will treat you as though you are terminal and on paper the stats aren't good. Let's just set out to beat those odds okay? As my friend said, we can have the x-factor at play and other people in the studies won't so all bets aren't off.

    Ask your docs about Topotecan

    Have your copper-zinc levels checked? They are typically skewed in TNBC and copper chelation drugs can rapidly get that copper level down to reduce blood supply recruitment, reduce inflammation, and help rebalance. They do this with regular blood labs because you have to be careful with chelation, you can also boost your zinc intake to chelate but it takes longer - though either way you want to boost your zinc as well.

    My attitude has been to my cancer, "you think you can hide out in my brain? I can even f--k with you there". This is why I take 60-90 mg of zinc every day, switched to a keto diet, and got a hole drilled in my head. I am going to do my best to make it as uncomfortable as possible for my cancer cell line and to make my regular cells stronger.

    Let's go pick on some cancer, shall we?

    Hugs

  • Bosco19
    Bosco19 Member Posts: 177
    edited January 2016

    Thanks Agness. It was a big shock. My onc is great. I had scan yesterday followed by blood and platelets transfusions so I was in hospital overnight. He came to see me there this morning to tell me face to face and talk about possible next steps so I could think about them and was going to brainstorm with a couple of other specialists, more scans etc. Decisions next week. And then sent me an email when I later said I was shocked and scared saying "Don't be. We will manage this. As we have done before". So he's really positive and switched on. And definitely up for beating the odds. Thanks for the recommendations . I will certainly ask about Topotecan and zinc etc

  • agness
    agness Member Posts: 406
    edited January 2016

    Has anyone experienced a cerebrospinal fluid leak through their nose or ear? How was it diagnosed? How was it treated?

    My nose started running just over a week ago and I caught the sniffles, with yellow phlegm in my nose and throat. This Friday evening I developed a bit of laryngitis. My nose keeps running.

    i was taking 2-4 mg of dex daily as needed, plus 1200 mg Boswellia Serrata a day. I havent felt exceptional edema, no headaches, no neck stiffness, no signs of meningitis.

    They can surgically correct it but in my case it looks like there is a reason for it --partial brain rads -- and my body is taking care of it. If the body can handle a ruptured ear drum then why not a temporary brain leak?

    I am going to talk to my doc. Kind of alarming.


    Here are some links about CSF leaks, also called cerebrospinal fluid rhinnorhea:

    http://care.american-rhinologic.org/csf_repair

    http://www.entandallergy.com/userfiles/files/CSF%2...(1).pdf

    http://www.everydayhealth.com/healthy-living/blow-...


  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Agness I would think if you had a CSF leak you would have a horrific headache. 

    And your words to Bosco were so encouraging that I have a renewed sense of living through this crap. Thank you. 

  • agness
    agness Member Posts: 406
    edited January 2016

    With surgery to the posterior fossa spinal leaks are common. It was mentioned to me that rads to that area contained by the tentorium could cause increased pressure. If the pressure is too high then it might be my body responding to the pressure and the leak could be a counterbalance.

    I wrote a detailed message to my RO and Im on bedrest today, well the couch at least.

    The worst is that it is a busy week and Tuesday I testify in Olympia, WA in support of establishing Right to Try laws. This would let us try meds outside of clinical trials, without the FDA slowing things down for compassionate use or clinical trials for which we are ineligible. My dad said a lityle laryngitis can only help the cause

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2016

    Bosco, I appreciate your onc's attitude. It certainly sounds like you are in good hands. I'm sorry for this sucky set-back, though.

    Agness, No experience with CSF leaks. I hope you, and your team, can get to the bottom of the runny nose ASAP. Good luck with testifying. You are doing amazing things for MBC.


    I'm feeling some anxiety as the month of February begins. I'm coming up on my 1 year anniversary of the seizure that led to my mets diagnosis and craniotomy. The seizure was on the 13th and the surgery the 16th. I have been feeling great but can't help but wonder when that other shoe is going to drop. I don't have any scans scheduled until the end of March. I see my onc on the 22nd to discuss how the Lupron is going and to review bloodwork. I'm trying to be thankful for feeling good but the anxiety is a little rough right now.

  • spicypetunia
    spicypetunia Member Posts: 47
    edited February 2016

    WOW Agness - please post or pm if there is a way to help to support implementation of 'right to try' laws! I know too many people in the kitchen can slow things down, but if you think there's a way to help w/o hindering, please say so. never know who's reading & might have helpful connections.

    so incredibly awesome, Agness - you really are exceptional. your can-do attitude is infectious and motivating. like others have mentioned, reading your posts has had a very positive influence on my perspective -- I try to find a way, albeit sometimes not very far-reaching, to 'pay it forward' every day. thank you! I hope sinus issues have been addressed & are not adding to your challenges.

    best wishes for a great week for all of us -- extra peace, fast-healing & quick relief for those who need it!

  • Bosco19
    Bosco19 Member Posts: 177
    edited February 2016

    Agness

    Oncs still considering what to recommend and waiting for Pet/ct scan results to see if it has also spread to other places. Radio Onc thinks scope for RT to lining. Another treatment they want to discuss with me is Depocyt which is one I haven't heard of but I wondered if you might have come across it?


  • Bosco19
    Bosco19 Member Posts: 177
    edited February 2016

    It has spread extensive bone Mets and worse chest nodes and pulmonary nodules

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited February 2016

    Oh shit. I'm so sorry. Fucking cancer. (((Hugs)))

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2016

    I'm sorry Bosco. That just sucks. I wish I had some words of wisdom for you... Much love as you start on your new treatment plans.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2016

    Lots of Love Bosco. You are in my thoughts as you plan the next phase of your treatment.

  • Becs511
    Becs511 Member Posts: 118
    edited February 2016

    Hi Ladies. I was wondering if you could help me and share what your brain mets symptoms were (if any) and were they consistent or did they come and go? For the last 2 days or so, when I stand up after sitting down for a while, I have been getting like a throbbing headache that lasts only for like a minute, sometimes accompanied by dizziness. For example, just now I knocked the handset off my desk phone and for about 20-30 seconds, I couldn't see where to put it back. But then it cleared up and it was like nothing every happened.

    Last week, I had really bad muscle spams all my left side, starting in my thigh and moved upwards towards my head, and went to Urgent Care at my cancer center. They doc said it doesn't sound like brain mets since they spasms came and went (and have since stopped), but I have to think that the headaches and spasms are connected somehow. I have a petscan scheduled for next week, so I guess I will find out then. Just wanted to hear your experiences.

  • gciriani
    gciriani Member Posts: 195
    edited February 2016

    Becs511,

    I think symptoms depend on what brain area the metastases happen to be, and more specifically on which ones of the various areas get inflamed, then swell as a result, and eventually cause a local electrical malfunction (brain function, hallucination or even seizure). In my wife's case her speech was all garbled, she couldn't turn off the computer, and couldn't answer simple questions. After she was stabilized in the emergency room, she perceived the left side of people's faces as completely warped. After the brain swelling was tamed by dexamethasone, even two weeks into whole brain radiation, she had once for a second again the same hallucination of distorted faces.

    I hope this helps.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited February 2016
    I hate the be the bearer of bad news and I hope to hell I'm wrong, but the muscle spasms were similar to the way my mets presented. I had episodes that would start out tingling in my hand and arm and then sometimes turn into spasms in my arm, shoulder and back. They were sporadic and happened every few weeks and ranged in severity from mild to quite distressing. I also had mild visual disturbances that manifested in one episode of flashing lights and two episodes of a wavy line in my lower field of vision. I had one occipital tumor that caused the visual symptoms and one paratial (?) tumor that caused the sensory symptoms. So please insist on a brain MRI. They are better than pets for finding brain mets. The good thing is my tumors were quickly and successfully removed and I'm working on getting back to normal life.
  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2016

    I didn't have any symptoms at all, other than headaches from time to time. My met was diagnosed after a seizure. It was in the temporal lobe, though, and my neurosurgeon said that it's location was probably why I wasn't having symptoms. My onc speculates that my tamoxifen "shook up" the met, causing it to bleed, which in turn caused the seizure. The met had been seen on a routine brain MRI several months prior, but was diagnosed a "classic" cavernoma by 2 different neurosurgeons and oncologists. Everyone was shocked when it turned out to be a met. Cancer is a tricky bastard.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited February 2016

    Also, I became a lot more prone to knocking into things on my left side due to the occipital tumor. I would bump my head into doors, the top of the sink as I was standing up, brushing against people at the mall, etc. I wanted so badly to explain it away as general clumsiness but there're were just too many weird occurrences.

    I'm currently being driven home from an OT appt to regain function in my left hand after having a craiontomy. If there are mets, a good SRS is much preferable to surgery. So please insist on that MRI

  • Becs511
    Becs511 Member Posts: 118
    edited February 2016

    Thanks so much for the input. I just called my MO's office and left a message asking for either her or the nurse practitioner to call me back to discuss.

  • spicypetunia
    spicypetunia Member Posts: 47
    edited February 2016

    so sorry Becs - that's unbelievably stressful. totally possible it's not brain mets, but best to get rid of any doubt. if you're having trouble getting them to order brain MRI - tell them that the stress of worrying, headaches & other symptoms are seriously impacting your QOL & insist on it. I'm thinking you have a great team & will get this checked out asap. you have my best thoughts for a clear scan!

    my symptoms were labeled as "visual field defect" & none of my docs had seen a similar presentation. basically, I'd have episodes of 5 minutes to 20 minutes of not being able to see what I was focusing on --- like if I looked at my watch I could see every detail but the watch-face. same w/ people - I could see everything but the details of their faces - ex. I couldn't "see" their glasses but could clearly see hair, clothes, etc. it was very bizarre. I had 3 of these episodes over 6+ weeks - totally random & then another minutes before the MRI. no other 'unusual' signs. MRI found 2 lesions.

    fwiw, the neuro specialists said they did not believe the visual field defects were associated w/ the brain mets.... a med onc asked me if the neuro folks thought the episodes were divine intervention, alerting me of the problem... very tongue-in-cheek, of course. nothing to laugh about, but I thought her comment was funny & the denial thing pretty typical.

    gamma knife to the 2 lesions in September and on scans last week, nothing remained.

    good job for pursuing this & asking questions - it's incredibly difficult and you're rocking self-advocacy! hugs

  • Becs511
    Becs511 Member Posts: 118
    edited February 2016

    Thanks Spicy! I figured if it is something, it is better just to deal with it and know either way before whatever it is guess worse. Plus I already happened to have 3-4 month petscan and CT scan scheduled for next week, where some progression in my sickly breast is expected, so might as well just deal with it all at once.

    So far no other weird things today, so I'm hoping that it was just a stress-induced fluke. Right after I left the message at my MO's office, I called and scheduled a massage and facial for tomorrow afternoon.

    I'll make sure to update everyone after speaking with the doctor.

    Here is to symptom free days, and healthy futures for all of us!

  • spicypetunia
    spicypetunia Member Posts: 47
    edited February 2016

    a psa/fwiw comment: I'm in the minority w/ cognitive SEs from gamma knife. brought up frustrations at onc appts since tx & asked what I could do to recover/protect cog. function. was told SEs were 'to be expected' and hope to improve in time (from med onc & neuro onc). eventually, onc referred me for a neuro occupational therapy consult.

    I felt I might be making mountains out of molehills (SEs more annoying/disconcerting than disabling) & kinda guilty about taking up resources but tired of re-inventing the wheel & wanted help if possible. long story short: I had initial consult & am relieved I pushed for it.

    here's the psa/fwiw: the doctor/head of the neuro OT group felt most/all brain SRS patients should be seen by neuro psychologist for eval. great if no issues, but if there are, they'll act trouble-shooters & while likely no fixes, they help to find ways to make things less challenging. serious weight off of my chest - hope this may be helpful to others.

  • Becs511
    Becs511 Member Posts: 118
    edited February 2016

    thank you all so much for encouraging me to call my MO right away. After speaking with her, she had me come into the cancer center's urgent care center for MRI and CT and it's not great news. The tests showed multiple spots and some significant swelling. They immediately hooked me up to steroids and anti-sezuire meds. I'm now waiting for a bed in the neurological ICU where they can monitor the swelling for the next few days

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2016

    oh Becs. I am sorry for the bad news. I am happy you acted and that you seem to have a responsive team. You are in my thoughts. Hugs. Take care

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited February 2016

    Fucking goddammit it. I was so hoping I was wrong.

    Good for you for being proactive. I'd love to eye-stab that urgent care doc that blew you off last week. He/she could've killed you.

    Make sure you get hooked up with a great neuro team. I don't trust breast oncology when it comes to brain mets. Where are you being treated? I can try to do some research for you. Fingers crossed you don't need surgery but if you do please reach out since I just did it myself. Can you receive packages at your room? I'd also like to love to send you something.

    (((Hugs)))

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2016

    Hugs Becs. While I know this isn't the outcome you were hoping for, I'm glad you team is so responsive to your needs. You're in my thoughts.

  • Becs511
    Becs511 Member Posts: 118
    edited February 2016

    Thanks everyone! I got moved into a private room at Sloan Kettering where I'll be monitored throughout the weekend. I feel very comfortable with the staff here and know they are on their game. I live about 30 blocks from here so my stepmom is currently at my apt and bringing me pjs, fresh undies, and some toiletries.

    As far as treatment, the doc feel that no surgery is needed and radiation should zap them. They even offered to talk my boss and/or HR on my behalf. I'm not really sure what is ahead of me has truly sunk in

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.