Frightening development with my daughter
 

She was doing so well up until just a day or two ago. Her MRI ten days ago showed her brain mets had “mildly progressed,” so they took her off the arry-380 trial and started a 2 week washout so she could start the xeloda/neratinib trial a few days before her big wedding is scheduled on Oct 3. Yesterday she had a headache in the morning, then started seeing flashing lights, but even when I talked to her in the early afternoon, she seemed fine. By 6:00 she was feeling nauseated and worse, so the oncologist on call had her come in for another MRI, which showed a 50% increase in her tumors in just 10 days! She is triple positive, and strongly HER2+, with about a dozen mets she had WBR for last November and that regrew as of May. She is home on dex now and we are waiting to hear from her regular oncologist today to see if she can begin the new trial early, though I know that the protocols for washout are typically very strict. Please keep her in your prayers. She has been looking forward so much to this wedding, and as recently as last week she told me she felt great and I was actually happy she was on a chemo break. :( We are all very scared, but holding onto hope.

Re: Frightening development with my daughter
 

Oh, my. That's very scary. I'm so sorry.

Thank you for letting us know what to pray about.

Re: Frightening development with my daughter
 

Oh I am so sorry. I am praying for you both too.

Carol Ann

Re: Frightening development with my daughter
 

Keeping holding onto that hope. I hope they can fast track her new treatment . Prayers for your family

Re: Frightening development with my daughter
 

I'm so sorry to hear this. I will keep you all in my thought and prayers.

Re: Frightening development with my daughter
 

Of course will keep her in my prayers.....and positive energy being sent to you also.

jean

Re: Frightening development with my daughter
 

So sorry to hear this. Hoping for restart for her soon and OK for her wedding day. Thinking of you both

Re: Frightening development with my daughter
 

So sad to read this and sending good wishes to you all. xx

Re: Frightening development with my daughter
 

Thank you, everyone, for your kindness and support. Kiri spoke with her oncologist this morning, who feels it would be too risky at this point to wait another week to join the Xeloda/neratinib trial. So they are starting her on Xeloda/tykerb tomorrow--a secondary choice but one we hope works until neratinib is approved, hopefully in early 2015. She's currently on steroids, which she hates, but they have stopped the headaches and nausea and vision problems, so hopefully at least part of the symptoms were due to swelling, not tumor. She feels and sounds a lot more like herself, and we're hoping that things calm down so she can enjoy her wedding.

I so appreciate all your prayers and support. It's a nightmare watching this lovely 29-year-old girl battling this beast that is robbing her of a long and productive life. She is beautiful, athletic, bright and so much in love. It is not clear to me at all that the universe is "unfolding as it should," but I keep hope and faith that things will come right in the end.

Re: Frightening development with my daughter
 

You are so correct that the universe is a kilter and wibbly wobbly where such a vivacious young woman is battling this un-chivalrous foe! I am relieved to hear she is improving with the dratted steroids. Putting her into my prayer journal!

Send us a few photos of the wedding!

Re: Frightening development with my daughter
 

I am so hoping the Xeloda/tykerb will work for her, thanks for posting and letting us know she is doing better with her headaches, nausea and vision problems stopping. Praying she continues to improve.

Carol Ann

Re: Frightening development with my daughter
 

I am so sorry to read. I will pray for her as I so want her to experience so many things, including her wedding and being married to her love.

Re: Frightening development with my daughter
 

Kris ,

I'm so sorry to hear this. I'm praying for a beautiful wedding free of side effects from chemo.

Please ask the oncologists about tremadol, is an oral medication for brain cancer and it does crosses the blood brain barrier.

Thank you for keeping us appraised of your daughter's condition.

Sending you positive vibes and bright light.

Hugs.

Adriana

Re: Frightening development with my daughter
 

Keeping you on my thoughts and prayers for continued improvement and a joyous wedding!

Re: Frightening development with my daughter
 

Kris,

Sorry I wrote the wrong medication name for brain tumors. The name is Temozolomide or Temodar, Temodal.

My apologies.

Re: Frightening development with my daughter
 

Praying for good results and happy days ahead.

Re: Frightening development with my daughter
 

Sending my prayers and strength to ALL of you that God will encompass you with His love, peace, joy and healing!

Re: Frightening development with my daughter
 

Hold on to that hope! May your daughter respond well to her treatment and enjoy a wonderful wedding.
Thinking of you both.... Pam

Re: Frightening development with my daughter
 

She has overcome challenges before and will be having her wedding as planned. She is a strong and determined girl. I feel like I know her. And I love her And I love you too
Keep the faith

Re: Frightening development with my daughter
 

I have never had WBR, but have had radiation for two brain mets on two separate occasions. Since that time, my brain MRI's have been clear. The last brain radiation I did was March 2013 - 17 months ago. My advice from my own personal experience is to cut out ALL sugars and to eat a low carb diet. Nothing processed. If I want to grow a brain met, I just eat sugar, not that anyone ever wants one. This is my personal experience. There is always hope and you are all in my prayers.

Re: Frightening development with my daughter
 

Still praying. Gods blessings upon your family.

Re: Frightening development with my daughter
 

Sending prayers - keep us posted

Re: Frightening development with my daughter
 

I was a sickly-looking bride 20+ years ago with a huge brain tumer which would not be found until two years later. Certainly hope she will enjoy her wedding and get all her medical problems taken care of soon.

Re: Frightening development with my daughter
 

zoe, i logged on here today after many months away and was shocked to see your post up here. i am so very sorry to hear about this development. i was just looking at kiara's gorgeous wedding photos and thinking wow, she had many of them taken at city hall, right where i'd walked to catch a T the day before the Jimmy Fund Walk for Dana Farber. i am kicking myself now because i forgot Kiara's name on my t-shirt, which was already overflowing. i can't imagine how anxious you must be and how frightened. all my thoughts are with you and i hope they give her all the ammo she needs to fight this. a big hug to you, my friend. valerie

Re: Frightening development with my daughter
 

Rooting for your daughter and lifting her in prayer,
Paula

Re: Frightening development with my daughter
 

Thanks so much all, and good to see you again, Val, and thank you! She is bouncing back as usual :-) doing well so far on Xeloda and Tykerb, though she's complaining that her head itches and tingles and she's afraid she's going to be one of that small minority that loses her hair on Tykerb. :(. I of course have my heart in my mouth full time at this point, and the wedding is 2 days away!! So many thanks for all your thoughts, love and prayers, and I send the same back to you all a thousandfold. We are blessed to have you all in our corner.

Re: Frightening development with my daughter
 

Ask about Intrathecal Herceptin. Start at 40 mg weekly and hold that for 4 weeks. Then go to 80 to 100 mg weekly for 12 weeks. That is what Nina did and got the brain mets under control. Similar issues as your daughter. MD Anderson or Northwestern/Sloan Kettering phase II trials. IT Perjeta at Univ of Southern California when the study opens in a few months. See you there.

Re: Frightening development with my daughter
 

So glad she's doing better! I'll be thinking of her tomorrow and her beautiful wedding! Take lots of pictures!

Carol Ann

Re: Frightening development with my daughter
 

Zoe, thinking of you. The wedding pictures were so gorgeous. Truly such a beautiful bride, such a wonderful smile. I hope the day was all she dreamed. How is kiara doing? How too are you? V

Re: Frightening development with my daughter
 

Kirismum -I've been thinking about you, Kiri and your family for weeks now.... hope the wedding was wonderful, and that Kiri is doing ok.
Marie x

Re: Frightening development with my daughter
 

Many thanks for all the prayers and good wishes--they are doing wonders! Kiri seems to be doing well; the wedding went off beautifully, and even though she hates me posting pictures, they're all over Facebook, so here are a couple of my favorites--not sure the link will work:

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Re: Frightening development with my daughter
 

Guess you have to click on the question marks for the other photos....

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Beautiful bride! Such a lovely dress (both the bride's and Mom's)! Thank you for sharing!

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What a wonderful photo. Everyone looks so happy & handsome!

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I agree, 'lizbeth! Beautiful!

Carol Ann