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Brain Mets Sisters

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Comments

  • 3Mom321
    3Mom321 Member Posts: 8
    edited August 2016

    Hello,

    New to forum and feeling scared about the dx.. Initial breast ca dx 2008, Stage 4 dx in 2012 to liver, in bone 2013, and now 8/5/16 to brain with fourteen 3mm and one 10 mm in right cerebellum. Seeking info on WBRT, what to expect, how to prepare, side effects, helpful tips, any help with Aricept ? I have no symptoms yet. Anyone have info on Keytruda? Thanks so much.



  • kt1966
    kt1966 Member Posts: 1,021
    edited August 2016

    I just finished WBR nearly 2 weeks ago.

    The only se's I really had were fatigue and sometimes headaches. The dexamethasone (steroid) helped with reducing inflammation & also if there's nausea (only mild occasionally for me) and regular paracetamol kept on top of the headaches.

    The Dex unfortunately makes it herd to sleep, so I resorted to a sleeping tablet quite often. I'm still on Dex etc for my rads to my spine.

    I have had moments when I can't remember things as well as normal - hopefully won't get any worse!

    I have to say I was having headaches & vomiting before I got my LM diagnosed, so it was a relief to have WBR to lessen that.

    I wish you well 3Mom321

  • 3Mom321
    3Mom321 Member Posts: 8
    edited August 2016

    Thanks kt1966 for your reply! Glad I found and joined this forum. Wish you well too.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2016

    kt1966,

    So sorry to read about all that you have been going through. We will all have our ups and downs and I am hoping you will find the right treatment. A friend of mine was in the ICU near death and they found a chemo that worked for her. She is still frail but out of the hospital and walking around. Have you read "Dying to be Me" by Anita Moorjani? Very comforting to read about her experience. I was amazed when I read her story because it was completely in line with what I already believed.

    Hugs, Susan

  • mara51506
    mara51506 Member Posts: 6,512
    edited August 2016

    Becs great news. It glad WBR worked to help.

    My craniotomy went well, just in hospital now. They had to leave small amt since was on an artery

    Biopsy andneuronc appt next couple of weeks. No cognitive impairment this far.

  • agness
    agness Member Posts: 406
    edited August 2016

    hugs Mara

  • kt1966
    kt1966 Member Posts: 1,021
    edited August 2016

    Thanks Susan.

    I'm glad your craniotomy went well Mara. Wishing you a speedy recovery.

  • MaryK87
    MaryK87 Member Posts: 36
    edited August 2016

    hi all

    i am new to this club of the most courageous ladies..i was diagnosed with brain mets 3 months ago and underwent WBRt and Cyberknife...i want to know if anyone had experience similar to mine on steroid. I was put on steroid decadron injection (i got that on my hips) for 2 months...tapered off 4 days ago..my question is anyone of you had severe hip and leg pain on decadron or after stopping it? I have all side effects listed in the leaflet weight gain, moon face depression and now this leg and butt pain that keeps me awake at night..anyone with similar experience or any suggestions that might help me?

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited August 2016

    Lots to catch up on!

    Becs, it seems like we have similar situations as far as those damn parietal lobe tumors causing sensory and seizure symptoms. I have not had seizures aside from when the tumor has been active but I do have some sensory damage. It seems to be an unusual presentation do I'm glad (well not glad but you know what I mean) we have each other to compare notes with.

    Mara, do glad your crainontomy is over with! Take it easy and take care of yourself. It will be awhile before you are back to normal but you will get there.

    Giovanni, the driving restrictions, at least in the US are pretty loose. But since seizures, albeit minor ones, have been part of my symptoms, I'm not comfortable going back to my previous driving habits. Driving a few miles on surface streets where I can easily pull into a parking lot if I feel something starting? I'll do it in a pinch. Driving the freeway where I couldn't easily pull over? I'd be pretty scared.

    MaryK, sorry to see you here!

    As far as me, I've been done with 5 right side SRS and 1 left side SRS for a week and a half. Finished 3/3 of the investigational taxane last week. We will do an MRI in about 6 weeks. Started the steroid taper a few days ago.Bunch of hair fell out but I'm hoping my cute new cut will cover up the bald spots. If not, that's why there's baseball caps

    I also had a talk with my MO and he does want to put me on maintenance therapy. Here's what's he's considering:

    -Tykerb/Xeloda/Herceptin

    -Tykerb/Xeloda

    -Tykerb/Herceptin

    -TDM1

    Anyone have any thoughts on these options???

  • gciriani
    gciriani Member Posts: 195
    edited August 2016

    MaryK87,

    I don't know how tapering from injections of dexamethasone (Decadron) is done, but from my readings it needs to be done in several weeks rather than a few days. See this post https://community.breastcancer.org/forum/8/topics/777599?page=138#post_4612784

  • Becs511
    Becs511 Member Posts: 118
    edited August 2016

    Hi BAU! I have been on Xeloda (and Herceptin) since the end of June on a 7/7 schedule (7 days on, 7 days off). I am due to start my 3rd cycle (one full cycle is considered a month) tomorrow night. So far I have had no real side effects, other than some mild fatigue, but I am on 4mg of steriods a day, so I'm sure that boost has been helping. I still work full time and have even gone out with friends, to concerts (Counting Crows with Rob Thomas!), and traveled during my weekends on Xeloda. But I am meeting with oncologist tomorrow late afternoon to discuss adding in either Tykerb and/or Avastin. I'll let you know what she and I decide on, since in addition to our ages and and odd seizure presentations, we might have a treatment protocol in common too!

    I was on TDM1 for a while but I had to switch from it because in addition to my mets which biopsied showed to be highly triple positive, I oddly enough developed a triple negative mass in the same dumb left breast (so essentially I have/had 2 primary breast cancers at the same time. Thankfully the triple negative one seems to be staying put and not spreading). Since TDM1 doesn't help with triple negative, I had to stop it and move to chemo, despite it working really well on the triple positive cancer. Most people have no side effects with TDM1, which I had every 3 weeks via IV. Unfortunately, I was in the less than 15% of patients that had significant SEs on it. Every single time without fail I got super high fevers (103-104) for 2 or 3 days. It was pretty bad, but as soon as the fever broke, I was basically okay. But like I said, most people have no reactions to it, so I don't want to scare you away.

    By the way, as far as I know, none of those drugs on your list cause hair loss.

  • Sunflower964
    Sunflower964 Member Posts: 5
    edited August 2016

    Hi all,

    Also new to the club following a diagnosis of widespread unspecified no of brain Mets last week. Er and Pr + at last biopsy in 2011 but Her2 negative unfortunately. And have used all hormonal treatments since Mets diagnosed in 2009. Only suggestion is either WBRT which I find a very frightening prospect, & which I feel I might not recover from in time to have any quality of life, or seeing if capecitabine alone will help to stabilise things. I've been told it might but can't find anything online. To add to the mix I have spinal cord compression recently treated with radiotherapy as no surgery possible, liver met(s) and a tooth which needs extraction after 5+ years on bisphosphonates!

    Just wondering whether there's anyone still out there who didn't find WBRT too awful, or who managed to stabilise brain mets with capecitabine alone.

    Thanks in advance for any help.

    Sunflower964

  • mara51506
    mara51506 Member Posts: 6,512
    edited August 2016

    There are a couple on here for WBR who it seems to have helped. There is SusaninSF and I believe gciriani whose wife has had only who can both give their experiences. I understand your fright as that has been suggested to me and am sorry you had to join. Ladies here are awesomely

    Another lady KT also from New Zealand has had the WBR as well.

    I just had my craniotomy for a tumour Aug 12. What I am trying to do for the fear is let the Dr give me risk/vs reward and go from there. All my best to all of you.

  • Goodie16
    Goodie16 Member Posts: 297
    edited August 2016

    Mara, I'm so glad your surgery went well! I hope you continue to have a good recovery.

    Lots of love to the rest of my brain mets sisters.

  • kt1966
    kt1966 Member Posts: 1,021
    edited August 2016

    Sorry to see so many new people coming here :(

    Sunflower, I finished WBR 2 weeks ago. I found it not too hard, it helped reduce my headaches which was great, but I still got some & found the dexamethasone & paracetol helped. Fatigue was another SE and not sleeping from the dex. My short term memory has been slightly affected, but I'm hoping it will improve.

    I hope you feel better soon Mary, I had dex tablets not injections so can't help there.

    I've taken 2 days off rads to my spine (2 more to go) to escape here (I'll try & post a pic) then tomorrow back for my 4th rad to spine and a brain MRI.

    I hope you all go well

    image


  • mara51506
    mara51506 Member Posts: 6,512
    edited August 2016

    Thanks Goodie and everyone. I did get out of hospital as hoped today which is not bad, 3 days in. Will have couple of weeks to get weaned of decadron from surgery and will meet my NO and lots of followup appts from surgery. I have to admit was disappointed to be told to avoid my turmeric for joint pain while waiting for incision etc to heal but will happily obey. I feel my neurosurgeon did amazing. Had to leave small nubbin of tumour that was wrapped around artery but got most out. Once staples and surgery end of things are done, I will resume my turmeric/boswellia for joint pain. They helped immensely before but can wait for now. Feel normal for now, will be tapering off dex which is fine. I did manage to get used to napping at night because other than the bathroom, stayed in bed and use couple of guided meditations for sleeping and baby sleeping music which would help me fall back asleep, even in hospital.

    Mary I also wish you the best, KT sounds like you are doing better and you are helpful for my WBR fear as well since it keeps being mentioned. Still have to wait for biopsy etc etc etc of course though prevailing thought is it was from the breast originally. Scheduled for bone scan to confirm NED from neck down and on track for 18/18 herceptin for that end of things. If NED below head, then the NeuroOnc and neuro rads people will be mostly who I deal with.

    Much love to everyone here. I can't believe I was able to get out in 3 days and really don't feel bad. I woke up hungry, reviewed my memory etc, found it intact and the nurses had me walking around tons at the hospital which was great. 1st day I had not brought anything to do so was boring til family brought it up. My terrible priorities but I must have them. Thanks for letting me ramble. BAU I hope you get a good maintenance therapy without too many side effects, Becs you are amazing as always. I hope to be working once we get my brain under way again. Waiting til see what happens treatment wise adn go from th ere.

    My best to everyone this day.

  • Sunflower964
    Sunflower964 Member Posts: 5
    edited August 2016

    Thanks kt1966! Just wondering if you were able to take or continue with any systemic therapy for your liver while having the brain radiotherapy. I was given the impression that the recovery time from the whole brain radiotherapy would be 6-8 weeks and that I wouldn't be able to have chemo in the meantime, so was thinking that would just mean liver failure (as I haven't started an effective treatment for my liver Mets yet) so what's the point. But maybe you had a shorter treatment or lower dose of WBRT?

    Best wishes with your continuing treatment & enjoy your break.

    Sunflower

  • gciriani
    gciriani Member Posts: 195
    edited August 2016

    Sunflower96,

    My wife ended WBR on a Friday, and started chemo on the following Tuesday.

  • kt1966
    kt1966 Member Posts: 1,021
    edited August 2016

    I'm glad you're home Mara :)

    Sunflower, I'm not on systemic therapy at the moment because it had failed me & I was on a break (unfortunately everything then went ballistic!) I Ihave an appt with my med onc next week to decide on a systemic therapy based on the lumbar puncture they did last Friday. I think I'll be starting it pretty soon.

    Edited to add: I had 10 treatments of WBR.

  • Sunflower964
    Sunflower964 Member Posts: 5
    edited August 2016

    Thanks Giovanni! Did your wife have WBR over a week or 2, or a different period? I've been told mine would most likely be over 2 weeks. Was hers as an only treatment or as a booster after another type of brain met treatment?

    All the best,

    Sunflower

  • Freakzilla
    Freakzilla Member Posts: 73
    edited August 2016

    Sunflower,

    Do you know how many brian mets you've got? If the largest one is under 3cm and the total volume is under 20 cubic cm, you can have Gamma Knife through the NHS. There are other requirements like systemic disease has to be under control, etc.

    Whereabouts in the UK are you?

  • Sunflower964
    Sunflower964 Member Posts: 5
    edited August 2016
    Thanks Freakzilla. I'm in London. Unfortunately systemic disease is not yet being treated properly. I opted to try Palbociclib (with letrozole) but it didn't work out as the palbo hit my blood counts so badly that I spent more time off it than on it. Hoping to start chemo soon. I also don't know my volume or no of brain Mets. Just that there were many speckles. I will ask at my appointment on Thursday.


    Thanks kt1966 for the info. Hope you get something sorted soon.


    Thanks and best wishes to Mara, Goodie and anyone else who is reading!
  • Nanita_daughter
    Nanita_daughter Member Posts: 13
    edited August 2016

    Hi everyone, have only posted here a few times but had a question...


    My mom had 2 brain mets diagnosed last year in September initially they just did SRS to both. However in December one of the mets grew back and caused havoc....=/

    Long story short my mom had complete Right sided paralysis from the larger met which grew and caused significant edema and swelling of the brain. The tumor was resected, she went to rehab for 2-3 weeks and since February she has been home doing well actually....

    Last MRI in July showed that resection cavity was shrinking...no new lesions

    However now I've noticed she's having memory problems. She has short term memory recollection. At times she will say well that thing right there "meaning chicken or something" and can't remember how to call it. She will forget names, etc..

    Eating well, going out, but the memory is not the same and she also gets frustrated and at times grumpy about it...

    She is on a an anti androgen receptor trial!! as she is metastatic TNBC

    So not sure if this is related to hormonal chemotherapy?

    Not sure is this post radiation/ traumatic brain injury problems? could this be side effect from the hormonal chemotherapy? can this be the cancer? :(

    Anyone have similar experience......would appreciate to hear your experience...

    The memory issues have been present since before her recent MRI which did not show anything new....

    Thanks everyone, have a blessed day <3


  • 3Mom321
    3Mom321 Member Posts: 8
    edited August 2016

    Hello everyone,

    i am relatively new to post. Bone and liver mets are stable. Just dx last week with brain mets (about 14 small 3 mm lesions and one 10 mm) so only candidate for 2 week wbrt which will start tomorrow.

    Told to put cetaphil or aquaphor on scalp to moisturize but not sure how to do it? Anyone have specifics? entire head/ greasy? Any other tips?

    Thanks to all.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2016

    Sunflower,

    I had a very positive experience with WBR. If you look at my earlier posts you can read more about it. You can also PM me and I'll tell you more. The regulars here have heard my story so many times, I don't want to bore them! :-)

    Hugs, Susan

  • Sunflower964
    Sunflower964 Member Posts: 5
    edited August 2016

    Thanks Susan!! I will try and view your posts and then PM you later.

    Sunflower

  • Becs511
    Becs511 Member Posts: 118
    edited August 2016

    Just as an update, my MO is leaning towards adding in Avastin (an IV drug) in conjunction with my Xeloda and Herceptin. She said that people on Tykerb and Xeloda tend to get a lot of GI issues (aka extreme diarrhea). Since that tends to be my weak spot, she thinks, for me, Avastin is the better option. However, she still wants to talk directly with my RO (who also just got back from vacation) to make the final final call. My MO said she will call me tomorrow night to let me know the final choice.

  • mara51506
    mara51506 Member Posts: 6,512
    edited August 2016

    Becs thanks for the updates on your treatment choices being offered. Sounds like you are in wonderful hands with RO, MO etc. You also inspire me because it lets me know it may be possible to work once I am done my radiation or whatever may be prescribed. I would like to but for now taking time off to get it all done first and see where to go from there and what treatment will do for me.

    First day home for me after craniotomy. Only thing I am missing is my ibuprofen/turmeric but was forbade that. When I see my neurosurgeon in 3 weeks will be insisting on those back but am agreeing with the avoidance of the blood thinners for now since not looking to complicate surgery. I am just concerned about arthritis once off the Dex between surgery and whatever else happens with brain. Lots of appointments coming for me. Was nice to be in own bed and so far, tylenol still taking care of any pain from surgery so lucky for that. Did manage couple rides on stationary bike, just gentle and will be going out later. Don't care if people see staples etc. They can check my cool hair and if they don't like it, too bad. Resting as needed and raised one end of bed just slightly as did not like being completely flat. Still napping on dex at night but seems to be workable for me. Enough from me.

    Hope everyone else is as well as possible and wishing everyone a good week though I'll probably keep popping in.

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

    Becs- your MOis right. Xeloda and Tykerb were very hard in the GI system. I don't miss that combo for that reason.


    Good luck to you.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited August 2016

    My onc is considering Tykerb/Xeloda.After my run with Abemaciclib, which gave me pretty consistent stomach ickies, I'm not super excited to do it, but if my onc thinks it's the best I'll tough it out. Go big or go dead, right?

    That's actually one of the reasons I brought up TDM1 as another option. I was actually on it for 14 cycles in 2014-2015 as part of a clinical trial for early stage. It was a pretty easy drug, much easier than Abemaciclib,for me and it was effective in helping keep my body clear. Obviously I developed the brain mets but I didn't develop symptoms until well after the trial had ended....

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