Well this sucks
 

Last November my daughter underwent WBR for multiple brain mets. She had a very rough month in January with delayed se, but recovered well, and the brain mets shrank rapidly to almost nothing. Last week however, her MRI showed them back in full force. :-'(. They've discontinued perjeta and will start her on a phase 1b trial of ARRY-380 and Herceptin on Tuesday. Please keep us in your thoughts. She is handling everything with enormous courage and grace, as usual. I am so privileged to call her my daughter.

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I think of Kiri often and am sorry to hear of her setback. I don't have experience with brain mets, but I plead with the people who do (attention, scientists), please get in touch and lead Kiri down the right path. This has to be incredibly scary! Yes, I would feel privileged to call her my daughter, so you have every right! Please keep us in the loop. We care.

Karen

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I'm so sorry and have no info to help either but do send my prayers and good wishes!

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ditto on the prayers and good wishes for your BRAVE daughter...Cathy

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It sounds very promising. We will be very anxious to hear that it is effective in heavily pre-treated breast cancer. Wishing you the very best.


ARRY-380 is an orally active, reversible and selective small-molecule HER2 inhibitor invented by Array and being developed by Oncothyreon in collaboration with Array. Array is responsible for worldwide commercialization of the product. Oncothyreon will fund and conduct clinical development of ARRY-380 through a defined set of combination proof-of-concept trials in patients with metastatic breast cancer. ARRY-380 is highly active as a single agent and in combination with both chemotherapy and trastuzumab in xenograft models of HER2+ breast cancer, including models of CNS metastases that were refractory to lapatinib or neratinib treatment. In a Phase 1 single agent clinical study, ARRY-380 administered orally twice a day demonstrated anti-tumor activity in heavily pre-treated HER2+ breast cancer patients with metastatic disease without treatment-related Grade 3 diarrhea and only minimal Grade 3 rash. Based on the strength of these preclinical and clinical trials, ARRY-380 is advancing in three Phase 1b combination trials in patients with metastatic breast cancer.
ARRY-380 is the only HER2 selective small molecule in development. Unlike other small molecule inhibitors of HER2 that are currently either approved or in development for treatment of HER2+ breast cancer, including lapatinib, neratinib, and afatinib, all of which are dual inhibitors of both EGFR and HER2, ARRY-380 selectively inhibits HER2 without meaningful inhibition of EGFR. This enables ARRY-380 to provide highly potent inhibition of HER2 while avoiding the side effects associated with dual inhibitors, including skin rash and GI toxicities.
- See more at: http://www.arraybiopharma.com/produc....fIdCqbUF.dpuf

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Dear Kris,

I'm so sorry to hear about your daughters setback.

The trial she is about to start looks promising.

Please keep us posted.

Adriana

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You raised an amazing and courageous girl and you did a wonderful job. I'm so sorry to hear of this setback. She, and you, could use a break. I know that more knowlagable people will chime in on the medical side. I just wanted to offer my love and support
Keep the faith

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Sorry to hear this news. Praying for her.

:-) Penny

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Many hopes and prayers for your daughter, you and your family��

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prayers, love, and healing light to you, your daughter and family
~~~~~~~~~~~~~~~~~~~~~~~~~~~

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Thank you, all, for your love and support; it helps enormously to feel not so alone in this. There are so few people in my daily life I feel can really "get it" and I'm determined not to burden Kiri with my fears.

The happy news is that following this most recent diagnosis, she and her wonderful boyfriend decided that "owing to the gravity of the situation," as he put it to my husband, they would get married, sooner rather than later. And they did! Last Friday, in a simple but beautiful civil ceremony. To be followed in October, God willing she is well enough, with a large traditional second wedding with all the trimmings. It all sounds and feels a bit bizarre but is certainly a very effective distraction. I find myself sometimes thinking, as my head spins, I have a child with a terminal prognosis and now TWO weddings to handle -- where does this rank on the stress level scale?!?

Kiri is now very busy with interviewing DJ's and photographers and caterers and not in the least bit interested in cancer, upcoming scans, or her prognosis. For this I am supremely grateful and blessed. But it doesn't stop my own incessant worries and fears. I can find so little on predictions for positive response of brain mets to chemo following progression after WBR. And of course there's virtually no info on ARRY-380 since it is, after all, still just a Phase 1 trial. Why do some bc brain mets progress after WBR and others not? Does the fact that she has multiple new mets that appear to be fast growing indicate a poorer prognosis? Who knows if any treatment can put the brakes on them. Her first scans are 5 weeks away and that feels like forever, but I will be terrified waiting for the results. I wish I could just relax and enjoy these precious months when she is happy and excited and feeling well. She is so beautiful and her new husband is so brave and sweet and caring. It breaks my heart.

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Such a mixture of joy and sorrow! Thinking of Kiri, of you and all your family.... Pam

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I hear your breaking heart and wish I could relieve some of your burden. It's all so unfair
But what an amazing girl you have raised. You need to follow her lead, as hard as it may be for you. She is living in the moment. That's such a gift. Try not to project ahead and just relish the present. Denial isn't always a bad thing if it makes room for joy and celebration.
I love you and wish you get to make many sweet memories
Keep the faith

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I'm so sorry, Kiri's Mom, that you and your family are going through this. I think Kiri has the right idea, though. Do what you can, don't worry about anything you can't control (which is pretty much everything.)

I hope the new drug is a winner. There's also direct administration of medication into the brain. Seems to me we have a resident expert on that. I'll poke around and let you know if I find anything.

It's pretty cool your daughter's boyfriend wants to be her husband (and your son-in-law) now. That's not just a distraction, it's a gesture of solidarity and a leap of faith.

Keep us posted.

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Search "intrathecal" and you'll get a bunch of hits. There's a recent thread on it in this grouping, from "Marvass."

I've heard of people getting Avastin for brain mets.

I'm sure our resident experts can give you more reliable and detailed information.

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As bad as things get and can be when it comes to cancer it's always 10 fold when it's your child suffering. I send you and your daughter my prayers while your family fights this battle .

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Such a terrible time and at once a wonderful time in your life. It must feel like you are immersed in a spiritual tsunami from Kiri’s diagnosis and yet a part of you is tugging to let go of the pain and take part in the wedding celebration.
It seems like this is the challenge that we all face at some point. To let go of the worry, fears and prognosis for chunks of times just like Kiri’s wedding, and immerse yourself in the joy - if only for a few moments. If you can do this, it seems like it will be a blessing to you both.
Suffering seems to be 10 fold worse to witness when it hits our children. How many times have you wished you could take the burden for her - such a strong piece of our very human nature.
I pray for strength and clear thinking for you, mama, as you pursue answers to your questions. There are many answers on this web site and prior posters gave you a great start. Knowledge is power - may you hold yourself and your beautiful daughter with knowledge, love and joy in these upcoming days.
Love
Kim (from CT)