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Brain Mets Sisters

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Comments

  • Lita57
    Lita57 Member Posts: 2,338
    edited February 2019

    Radiation masks that hold your head still on the table while getting brain rads. I still have mine in case I need it again in the future.

    L


  • Parrynd1
    Parrynd1 Member Posts: 343
    edited February 2019

    Lita I thought they would let me re-use mine too, but they said no just in case there are slight changes. I’m waiting to be scheduled for my new ‘fitting’ and still trying to figure how to work the old one into a Halloween something or other, lo

  • mara51506
    mara51506 Member Posts: 6,511
    edited February 2019

    When you get brain radiation treatment of any sort, a mesh mask is custom made. If you had a treatment, the mask is clamped down to ensure the correct position and avoid any head movement while being treated.

  • rachvaughn
    rachvaughn Member Posts: 14
    edited February 2019

    Thanks for the explanation. It's weird that no one is recommending radiation for Aly.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited February 2019

    Rach have you asked why it isn’t being recommended? There is probably a reason and t might help to understand the dr’s thinking and approach to her treatments

  • rachvaughn
    rachvaughn Member Posts: 14
    edited February 2019

    When I ask why they are not recommending it they just say that they don't think it would be a suitable treatment.

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2019

    Rach, you can ask WHY it won't be a suitable treatment. Ask for an explanation. If the doctors won't give you one, find a doctor that would. A patient, and patient's support system, should ALWAYS fully understand treatment options available and unavailable and the reasons why for each.

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2019

    My brain scan on Monday remained NED. Now just gotta get thru tomorrow's PET and I can put cancer worries on the backshelf for a few more months.

  • illimae
    illimae Member Posts: 5,739
    edited February 2019

    Great news Goldie! Good luck with the PET 😀

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2019

    yay Goldie.!

  • 42young
    42young Member Posts: 126
    edited February 2019

    Congrats Goodie!! I wonder how you found out about your brain mets? I think i have similar diagnosis as you, premenopause, er/pr+, her2-, grade 2. I only had PET from skul base to mid thigh. I have some weird feelings on my head. Should i ask for a brain scan? Thanks

  • mara51506
    mara51506 Member Posts: 6,511
    edited February 2019

    Glad to hear about NED in the head. May it continue Goodie.

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2019

    42young, my brain met was found after I had a seizure. They did a brain MRI and saw what they thought was a cavernoma (basically an aneurysm on a vein instead of an artery). My neurosurgeon went into to remove the suspected cavernoma because of the seizure and found it was a breast cancer met. Pathology was identical to my original breast tumor, even though I had clean nodes at the time of mastectomy. My MO suspects it was there at the time of original diagnosis, even though all testing and surgery had me classified as stage 1A.
    If you are having weird feelings in your head/brain, I'd request a brain MRI. If it shows anything, ask your MO for a referral to a neuro oncologist. My neuro onc works closely with my MO. My MO likes to joke that he takes care of me from the eyebrows to the toes and everything else is the neuro onc's job.

    Thanks for all the love, fellow brain mets sisters. May we all find some good news in the coming weeks and months!!

  • Angit
    Angit Member Posts: 49
    edited February 2019

    Hi Everyone,

    I haven't posted in a while. I am still doing Xeloda and Herceptin. My scans in November and Monday were clear. I am NEAD! My scan yesterday did show Rounded Atelectasis. I looked it up and it says it means a part of my lung collapsed due to surgery. My doctor did not address it at all. I am wondering if I should call. I had my hysterectomy 4/4/17 and my Mastectomy 8/13/18. They thought previously it might be metastasis but have ruled that out. I am very thankful it is ruled out but I think it is odd she didn't say anything about it.

    It feels weird (guilty) to post here when I am doing so well, but hope it gives someone some hope. You are all in my prayers.

    Thanks so much for always being here!

    Angi


  • 42young
    42young Member Posts: 126
    edited February 2019

    Thanks Goodie. MO ordered MRI & waiting for insurance to approve.

  • mara51506
    mara51506 Member Posts: 6,511
    edited February 2019

    Anjit, glad to hear you are NED. My last scans show NED from neck down and brain spots have continued to shrink. May it continue for all of us.

    Good news is never bad to post. As you said, good news can be encouraging to people with new mets to the brain.

  • illimae
    illimae Member Posts: 5,739
    edited February 2019

    Yay Angit, happy to hear it 😀

  • Delvzy
    Delvzy Member Posts: 454
    edited February 2019

    is anyone else on this brain forum with mets to the brain lining and or spinal fluid? I have had WBR and a low dose ( still on it) chemo, just looking for hope from someone who has something similar. My Onc says what I have has a poor prognosis but I am finding it hard to accept no hope

    Judy



  • Delvzy
    Delvzy Member Posts: 454
    edited February 2019

    Hopeinchtidt how are u going

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2019

    Great news Angi! Thank you for sharing :)

  • hhfp
    hhfp Member Posts: 20
    edited February 2019

    Delvy,

    Anything stage 4, esp to the brain, by default is considered poor prognosis due to limited treatment options but as you see on this message board, there are some who live years after diagnosis. Plus, there are many new treatments options nowadays like proton therapy, immunotherapy, and just more drugs in general. Ask about clinical trials and make sure whatever treatment you get do not exclude you from participation. Try to find a MO knowledgeable on the newest treatments. Good luck!

  • rachvaughn
    rachvaughn Member Posts: 14
    edited February 2019

    @Angit and @Goodie16: Congrats! May you stay healthy!


    @Delvzy: I'm a caretaker for Aly who is 28 years old and has brain mets and spinal fluid mets. We're in Boston right now waiting to potentially participate in an immunotherapy trial. She also has a poor prognosis, but there are lots of folks on this thread who have made it for years. This is the kind of thing that is really scary when you Google it until you stop and think about the statistics.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2019

    rachvaughn,

    The masks are used when you have whole brain radiation and sometimes for other kinds of more targeted brain radiation. They make a personalized mask for you so that your head won't move during the treatment. The mask is put on soft and wet and conforms to your face when it is made. When I had gamma knife, a more targeted kind of radiation, they screwed a big metal cage to my head which was a lot more uncomfortable than the mask. I think this was necessary because they were treating just two very tiny tumors, one that was only 1mm and the other 3mm. My head really needed to be locked down.

    Hope Aly is able to get on the clinical trial and that it gets her to a more stable place.

    Hugs, Susan

  • Delvzy
    Delvzy Member Posts: 454
    edited February 2019

    thanks for responding I wasn't sure if immunity therapy will work if u are HER

  • ladinred26
    ladinred26 Member Posts: 9
    edited February 2019

    Just a quick update. I finished my 10 day WBR treatment a week ago. Have successfully gotten off of the steroids (thank God). Hair came out in massive clumps on day 10 so toatally rocking bald again. The fatigue is really starting to hit me this week. Tonight I sat for an hour trying to motivate myself off the couch. I have started Ibrance for my liver and bone Mets. Have only taken 5 pills so will have to wait and see on side effects.

    My brain tumor neurosurgeon wants to be involved in my case. I had a very rare brain tumor in Oct 2013. They were unable to remove it all and I had gamma knife treatment to shrink the tumor after surgery. It has remained stable over the past few years. However he wants to be able to keep an eye on it and these brain Mets.

    He wants to see me 4 weeks after the end of WBR so I have an appt scheduled with him at northwestern memorial on March 18. He is one of the top brain tumor neurosurgeons in the country so I feel great having gone get involved in my treatment.

  • Delvzy
    Delvzy Member Posts: 454
    edited February 2019

    ladinred that's great news, my hair did the same after 12 days every time I brushed my hair it came out in clumps. They said it would softly fall on my pillow are no!!!! I am on an injection of chemo and the whole thing has worn me down so I am hoping to get some energy back at some stage soon.

  • Angit
    Angit Member Posts: 49
    edited February 2019

    Just wanted to say, I had radiation on my brain and rib in September and October. I thought I would never get my stamina back. It did come back. It is not 100% but I definitely had no energy for about 50-60 days. I spent a lot of days laying in bed on my phone, coloring on an app because I didn't have the energy to use colors and coloring books, or even open my laptop. It gradually got better. I pray yours increasingly returns.

    Hugs,

    Angi Taylor

  • Angit
    Angit Member Posts: 49
    edited February 2019

    I am Her2+ and er/pr- and Herceptin and Perjeta were a part of my treatment. I am still doing Herceptin and I am NEAD! My mastectomy of my right breast came back with no cancer left in the breast tissue or wall. Only 2 of the 4 lymph nodes had any cells left. I have had an ultrasound and it is still clear. I just had a mammo of my other breast and it is still clear.

    I am still doing Herceptin and Xeloda. I am doing well on the Xeloda. Minimal side effects so far.

    Hugs

    Angi

  • rachvaughn
    rachvaughn Member Posts: 14
    edited February 2019

    Just jumping back in to mention that we're still in Boston and Aly is looking to get a dose of radiation today to see if it will help manage symptoms. She has not regained her vision and is pretty weak from all of the time in bed. We have our fingers crossed and are hoping it will provide some relief.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019
    Sending good vibes Aly’s way for the radiation treatment. For me, even when I felt my lowest, getting out and taking a short walk and getting some sun helped immensely. I needed an escort, but it always turned into a nice walk n talk. Plus it helped move the bowels! When I was bed ridden I did simple exercises (if I felt up to it) that I could do laying down. Simple things like lifting one leg or arm up then down a few times and just finding different easy things that helped keep some muscle. Then doing some stretches in bed helped keep me from getting so stiff. I know this might not be for everyone, but it did help me and I enjoyed it. It filled some time and gave me something to do and progress in a good way on. Hope she feels better & you both get some good news soon.

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