How Quickly Does Brain Mets Develop?

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olduser
olduser Member Posts: 24
edited June 2014 in HER2+ (Positive) Breast Cancer
How Quickly Does Brain Mets Develop?
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  • olduser
    olduser Member Posts: 24
    edited December 2008

    My partner (age 45) was diagnosed with breast cancer September 3. She had a right breast mastectomy shortly thereafter. Tumor was 9 cm. 15 out of 40 nodes came back positive. And she is HER2 positive. She had a PET CT before her surgery and it was clear outside of the right breast. She just finished her first round of chemo (A + C). She starts Taxol soon, and she will be in a clinical trial - the ALTTO Study (Ajuvant Lapatinib and/or Trastuzumab Treatment Optimisation Study).

    My paranoia comes with the headaches she has been having lately. She has always had migraines as long as I've know her, but I've heard so much about people with her type of cancer getting brain mets that I'm really concerned. Could brain mets have developed this quickly? Or are the headaches the result of chemo or her anti-nausea meds? She is keeping the oncology nurses in the loop, but does anyone know how fast brain mets can develop? Should she be demanding a new PET CT so soon?

    Thanks for your help.

    Mary

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  • lisettemac
    lisettemac Member Posts: 213
    edited December 2008

    Mary -- I'm sorry about your partner's dx.

    If she had a PET within the last couple of months (which it sounds like she must have), I would think it highly unlikely that she has undiscovered brain mets.  A more likely scenario is that the chemo is causing the headaches.  She should definitely discuss it with the dr., though.

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  • Sassa
    Sassa Member Posts: 1,588
    edited December 2008

    I had AC chemo and had horrible headaches that would last 2 - 4 days after my chemo.  I suspect it was the anti-nausea meds that were causing the problem as the headaches lessened when my anti-nausea med was changed.

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  • olduser
    olduser Member Posts: 24
    edited December 2008

    Thanks lisettemac and Sassa. I appreciate the feedback. My partner has an amazing 12-year-old daughter and I can't stand to think about how losing her mom would affect her. I have to hope and pray that doesn't happen.

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  • ango74
    ango74 Member Posts: 255
    edited December 2008

    I also had headaches after the first couple of tx's and informed my doctor.  She seems to think it was the chemo and other meds causing it and wasn't concerned.  Plus I'm sure the stress of this whole situation can cause headaches.  Sorry to hear about your partners diagnoises, hang in there.

    Angie

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  • henny
    henny Member Posts: 89
    edited December 2008

    Mary,

    Has your partner asked about having a brain MRI scan? That is the standard for looking for brain mets. The headaches could be from many causes, as Sassa and Angie said but doesn't hurt to ask for some reassurance that a scan would give

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  • Chelee
    Chelee Member Posts: 513
    edited December 2008

    I was dx stage IIIA with 5 of 16 positive nodes.  They did a baseline PET/CT of body and also did a brain MRI before we started chemo just to make sure there were no mets/spread.  So if they have not done a brain MRI I would probably ask for one.  Although her headache is no doubt from the chemo.  Seems once I started chemo I had lots of headaches...bad ones! 

    But just to be on the safe side I would want a baseline.   I would have her ask her oncologist if she could have a brain MRI.  As the last poster said...it is the standard.  This will give her piece of mind to know its just the chemo.  Plus its always good to have for future reference.  (Its great she has you to help her through all this because its not easy as I'm sure you know.) 

    Chelee

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  • olduser
    olduser Member Posts: 24
    edited December 2008

    Thanks everyone. I'll ask my partner if she's talked to her onc about a brain MRI. It may not be a bad idea. I also can't wait for the clinical trial to start. I think that will help too.

    Her daughter rubbed her head for her yesterday and she said it did help a lot. That almost makes me think it's a tension headache rather than mets. (Can't rub brain mets pain out I wouldn't think, but what do I know?)

    Again thank you for taking the time to respond. As you know, this disease can make you a nervous wreck!

    Take care,

    Mary

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  • LisaF
    LisaF Member Posts: 200
    edited December 2008

    I had very bad headaches and was told to try not to take the Zofran medication if I didn't need it badly.   That medication works great for the nausea but headaches are a huge side effect.

    Good luck!!  Sounds like she has a great daughter to give her a nice head rub.  My 13 year old son can't stand to see me without a hat or wig on.  Don't think he would be able to help out with a head rub!

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  • DianaT
    DianaT Member Posts: 532
    edited December 2008

    I had horrific migraines from the cytoxan, I could feel it come on as it dripped in the IV.  Day 3 was the worst day of it, but day 4 would come and I would start to feel better.  I used to take the pain medication (I think it was hydrocodone) and put a washrag on my head until day 4.  I learned that trick on the last cycle. 

    I also have Her2+ and am nervous about brain mets, but my onc mentioned that trial (I don't qualify) and it sounds very good!  At this stage, it is all worry!   

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  • olduser
    olduser Member Posts: 24
    edited December 2008

    Diana -

    I will pray that you never have to face brain mets either and that your treatment is/was a complete success!

    My partner, Joyce, signed up for the trial a week or so ago, but we don't know when she'll be starting it. Hopefully soon. She finished the A+C treatments December 4th. Now, it's on to Taxol and either Herceptin or Tykerb, depending on which arm of the trial they put her into. Fingers (and toes) crossed.

     Mary

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    Rarely is brain mets manifested as just a headache. There would be a slew of symptoms attending, including seizures, motor impairment or other sensory issues, balance/coordination, etc.

    Don't you go to her oncology appointments with her?

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  • DianaT
    DianaT Member Posts: 532
    edited December 2008

    Hi Mary ~ it is my understanding that the trial will always include herceptin, but then the tykerb will be added, maybe I am wrong.  Would you provide some more details on the trial?  I also pray that my treatment was a complete success!!

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  • olduser
    olduser Member Posts: 24
    edited December 2008

    All I really know about the trial is that it lasts a year and there are four arms: 1) Herceptin only, 2) Tykerb only, 3) Herceptin followed by Tykerb, and 4) Herceptin and Tykerb together. Neither the patient or the doctor can choose which arm you get. It is randomly assigned by computer. There will be 8,000 participants from all over the world. We are waiting to hear which arm of the trial she will be in.

    So, I guess the worst case scenario (if you can call it that) is that she'll have Herceptin for a year without Tykerb. For the first 12 weeks of the trial she'll also be getting Taxol weekly. Another benefit to the trial is that she will be monitored much more closely than she would be going through a normal treatment protocol. Hopefully we'll learn more next week. Hope that helps!

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  • marejo
    marejo Member Posts: 1,356
    edited December 2008

    Just wanted to chime in.....I, too, remember very bad headaches when on chemo.  The first few days and I think they were from the anti-nausea medicine.  As chemo treatments went on these did get better.  However, one never knows and if you are concerned you need to mention it and follow through.

    God's Peace,

    MaryJo

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