BRAIN METS??? COULD IT BE?

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  • calamtykel
    calamtykel Member Posts: 1,187
    edited August 2010

    Frankie - Just happened to have seen your post and updates.  I'm very sorry to hear about this, but I wanted to share with you that a good friend of mine had melanoma in 1995.  She had mets to the lymphatic system in her leg and also to the brain!  She was successfully treated with chemo ( a treatment that she wasn't able to complete because it made her too sick) and radiation (and that was several years ago!)   I do believe she also had surgery for the tumor in her brain.  She went on to have two more children and she is doing just fine now.  I pray good results for you too!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited August 2010

    Yay for cyberknife!!  I had the same thing (SRS) done last year and I tell you it was the easiest procedure I have done.  If you have any questions please PM and I will answer any questions....it doesn't hurt a bit and I went to work the next day.  What do they think about boswellia to place of or in addition to the steriods?  Dharmamma is using it and it worked great. 

    You are going to kick this cancers butt sister!!  

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  • Luah
    Luah Member Posts: 1,541
    edited August 2010

    Frankie:  Itsounds like you are in wonderful hands.  A good omen, I am sure! 

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  • apple
    apple Member Posts: 7,799
    edited August 2010

    one of the worst side effects of this disease is that we are prone to assume that every symptom we notice is cancer... i just hope its something else.

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  • amlg1
    amlg1 Member Posts: 596
    edited August 2010

    Enjoy your camping trip,boy do you deserve a break.Thinking and praying for you .

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  • Frankie_
    Frankie_ Member Posts: 422
    edited August 2010

    Chainsawz/Lisa,

    You have already been a great resource here at this site with my previous PM's. Your links and articles have been very beneficial! I have also connected with darlenedenise and darmamama/jessica. I am sure that I will be connecting you again real soon!



    Apple- yes, it is natural to be fearful that something out of the usual maybe cancer related due to the

    emotional, mental and physical affects of this disease. Many twinges, pains, etc are normal and of course will not be cancer-related. I guess I have learned this past year is to rationale any symptoms and listen to that "gut" inner voice and the most important thing of all is to be an advocate for myself when it comes to directing my health care and treatments.

    Frankie

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited August 2010

    Frankie,

    I'm thinking about you tonight, and praying big prayers for your healing.  I hope you guys have a great camping trip.

    Many Hugs

    Bobbie

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited August 2010

    Frankie - thinking of you!!

    Sounds as though you have some of the best minds in the country working to zap that little bugger!  Enjoy your camping trip.

    Kerry

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited August 2010
    Frankie, I think it's a hoot that at Lindas last week when your doc had said brain surgery, we all jumped in and said "Cyberknife!!!". This site has been such a resource!!! Love the fact that you're starting with that instead of something so much more invasive! Have a blast with your sweetie on the camping trip....but demand a hotel if you feel the need! Wink
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  • allisontom911
    allisontom911 Member Posts: 425
    edited August 2010

    Frankie - just wanted to let you know I am thinking about you as you start this new fight! We were both on the Christmas chemo board!

    Hugs to you and yours, enjoy your vacation!

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  • davisfamily70
    davisfamily70 Member Posts: 146
    edited August 2010

    Frankie,

    I am a recent returnee to this board and I want you to know that I am following your progress with prayers and great hope for a cure. I am right across the pond from you in Grand Island New York and I know that you are in great hands. Best wishes to you and yours rest up on your vacation and come back fighting.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited September 2010

    Long Overdue Update: Well ladies, our family camp trip has come and gone. It was a nice few days away with hubby and our furry family members Max & Dawson (our labs). Just prior to our camp trip we had seen 3 specialists with regards to my dx and treatment options. So during our camping we were able to make a decision regarding which treatment option as to I which I would undergo. The decision was not difficult. I chose the route of cyberknife to treat the single brain mets in my right phireaphail lobe (which was accessible). I have completed my treatment. My treatment was broken down into 3 treatments (8 gy) per day for 3 treatments for a total of 24 (gy). The Dr. thought it would be less invasion and less neurological side effects to break it down into 3 treatments. The procedure is usually referred to as fractionated stereotactic radiotherapy when two to five treatments are given.
    I started on  August 30, 31, & September 1/2010. The procedure was painless and simple. The only uncomfortable thing about it was that I had to lie still for an hour.  A specialized fitted plastic mesh head mask which was made and moulded to fit my face/head. I was prescribed decadron at the time of dx 4 mg x2 per day to prevent swelling in the brain from the tumor. Twenty-four hours prior to my 1st cyberknife treatment I was increased to 4 mg x4 per day. I developed and (still have) the moon-face SE (YUCK).  My mask was considerably tighter than it should have been. The tech's just cut a small hole in the mouth to allow for some space. I am now being weaned off the decadron gradually on a weekly schedule. This has been the worst of the whole process is being on the steroids. The se's are awful with increase appetite, insomnia, food tasting off (no taste), abdominal distension and the moon-face syndrome. I will have a 4-week (follow-up) brain MRI on October 1st and get the results on October 7th. I will then have a brain mri 3 months to be closely monitored.

    So since my procedure I have been taking advantage of the high energy (due to the steroids) and organizing and cleaning the house and spending time with friends and doing fun stuff. I have been off work (long-term disability) since September 2009-since my journey with breast ca began. I am planning to return back to work mid November 2010 -hoping that the se's of the decadron will have disappeared. Just wanted to pop in and let you all know what's been happening.

    Love each day...

    Frankie

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited September 2010

    Frankie - I"m glad to see that you've posted as i've been wondering about you.  Sounds like the procedure went well and that the steroids are on their way out of your system.  Take care.

    ((((((hugs))))))))) 

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  • Frankie_
    Frankie_ Member Posts: 422
    edited September 2010
    Sugar-Love your new pic-You look amazing!!! Your hair is lovely Wink
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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    I don't get as much time on the boards as I used to so I generally stick to the stage III forum  - that's why I missed this topic.  I'm so sorry.  I'm glad you were able to get good support from the medical side so quickly and get it dealt with.  I'm taking your comments about listening to your gut to heart.  It really hurts to see a BC sister having to deal with more problems after going through so much already.  I'm wishing you the best and sending you hugs.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    Sugar LOVE the new avatar! You look wonderful!

    Frankie, I am so looking forward to spending some time with you tomorrow!

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited September 2010

    Thanks...it was from a photo taken in August at a family wedding (I cropped out my MIL and DH but you can still see someone's arm in the background). lol

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  • hrf
    hrf Member Posts: 3,225
    edited September 2010

    Frankie, good to hear from you and know that you are getting better. I've been thinking about you so I pleased that you have posted again. Take time to rest before you go back to work.

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  • allisontom911
    allisontom911 Member Posts: 425
    edited September 2010

    Frankie it is soooo good to hear from you. I have been hoping you would post. I will have good thoughts  for you for a clear MRI on Oct. 1.

    Sugar....LOVE the hair. Looks fantastic! When was your last chemo?

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2010

    Dear Frankie,

    So nice to get your update. I have been thinking of you. I am happy that for the most part the cyberknife was not too bad for you. I will pray for a great report in October.

    Thinking of you,

    Lexi

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited September 2010

    Frankie,

    I am so glad to see you posting an update. You are one tremendously awesome person, and it sounds like you're handling everything that's happening with a great attitude and doing all the right things to fight it.  I'm glad to hear you guys had a great camping trip.  Sending many prayers your way.

    Love

    Bobbie

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited September 2010

    Allison - my last chemo was in February.  

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  • Frankie_
    Frankie_ Member Posts: 422
    edited September 2010

    Thanks ALL of you for your kind and supportive thoughts, healing and well-wishes! I feel fortunate to have such wonderful supportive cyber sisters and friends that I have met and connected here with! You ALL are amazing!!!

    Love each day...

    Frankie

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  • Valjean
    Valjean Member Posts: 1,898
    edited September 2010

    Oh, Frankie, I am so happy to see your update! I have been wondering how you were doing. Keeping you in my prayers. {{{{ ♥ hug Frankie ♥}}}}

    Sugar ~ Nice to see you again! LOVE your new avatar! If I told you this on another thread, please excuse the repeat. Undecided

    ♥     

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    Frankie met me at my work yesterday. Holy crap she was in fine form! What a power-house of energy and determination that woman has!!! Her hair is coming in like gangbusters, shiny and curly and it's only been 6 weeks since Niagara on the Lake! Her face IS still swollen from the steroids, but honestly, to me it's just the lower cheek and jaw area. I think it's down a lot from what she says above. Her beautiful blue eyes are still there, determined as ever to beat this crap. All in all, I was amazed.....you inspire me to keep fighting my own health issues Frankie! We talked about "waiting for the other shoe to drop" and decided we'd both dropped enough shoes thank-you-very-much!!!!

    Love you sister!

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  • Luah
    Luah Member Posts: 1,541
    edited September 2010
    Frankie:  I was wondering about you today and searched on your recent posts.  So glad to find this update and to know the cyber knife went well.  Sending you lots of positive vibes for your MRI tomorrow.  Barbe's right ... no more shoes for you, girl!
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