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Search: Posts Made By: KirisMum
Forum: her2group 12-30-2014, 04:13 AM
Replies: 27
Views: 3,320
Posted By KirisMum
Re: My daughter, Susan.

Thank you, Ev. Susan was a real gift to the world. Again, I am so very sorry for your loss. It's just not right to lose a child. :-'(
Forum: her2group 12-22-2014, 09:27 PM
Replies: 27
Views: 3,320
Posted By KirisMum
Re: My daughter, Susan.

Ev, I am so sorry. As a mother, my heart breaks for you.
Forum: her2group 11-18-2014, 03:34 PM
Replies: 8
Views: 1,823
Posted By KirisMum
Re: Psuedeo-progression in Brain Mets

I think both trials are at Dana. Nancy Lin is in charge of them. I wish you the best of luck. It's a phenomenal institution! XOXOX
Forum: her2group 11-18-2014, 07:45 AM
Replies: 8
Views: 1,823
Posted By KirisMum
Re: Psuedeo-progression in Brain Mets

Neratinib & xeloda trial: http://clinicaltrials.gov/show/NCT01494662
Forum: her2group 11-18-2014, 07:42 AM
Replies: 8
Views: 1,823
Posted By KirisMum
Re: Psuedeo-progression in Brain Mets

I'm sorry to hear this news. But you still have options. Here's the link to the trials: http://clinicaltrials.gov/show/NCT01921335

Has she been on xeloda and tykerb yet?

There is also an...
Forum: her2group 11-17-2014, 04:14 PM
Replies: 8
Views: 1,823
Posted By KirisMum
Re: Psuedeo-progression in Brain Mets

My daughter had a similar occurrence. She had WBR for multiple brain mets last November, her mets shrank back to almost nothing, then started growing again. In June she was put on ARRY-380 in a...
Forum: her2group 11-16-2014, 05:56 AM
Replies: 18
Views: 2,135
Posted By KirisMum
Re: NEDenise Family Update

She was such an amazing person, a powerful presence, I can't imagine how difficult it must be for her family now that she's gone. I hope Ted and the boys feel her spirit near them. She would be so...
Forum: her2group 11-16-2014, 05:52 AM
Replies: 3
Views: 1,921
Posted By KirisMum
My daughter's latest blog:living well with brain mets

Hopefully this will help those in similar situations:

http://wordsfromwardfour.wordpress.com/
Forum: her2group 10-23-2014, 06:40 AM
Replies: 34
Views: 4,326
Posted By KirisMum
Re: Frightening development with my daughter

Guess you have to click on the question marks for the other photos....
Forum: her2group 10-23-2014, 06:40 AM
Replies: 34
Views: 4,326
Posted By KirisMum
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...
Forum: her2group 10-20-2014, 11:55 AM
Replies: 7
Views: 1,431
Posted By KirisMum
Re: **website down**

Thank you, Debra! This site means the world to us. God bless you and your wonderful parents, who I'm sure are looking down with great pride on you.
Forum: her2group 10-01-2014, 06:02 AM
Replies: 34
Views: 4,326
Posted By KirisMum
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...
Forum: her2group 09-22-2014, 05:33 PM
Replies: 34
Views: 4,326
Posted By KirisMum
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....
Forum: her2group 09-22-2014, 06:13 AM
Replies: 34
Views: 4,326
Posted By KirisMum
Unhappy 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...
Forum: her2group 09-15-2014, 06:11 AM
Replies: 11
Views: 1,913
Posted By KirisMum
Re: My daughter wrote this article for ELLE

Thank you, Penny! It's all over our timelines -- very happy to spread it around!

Hope you're feeling ok and your new cocktail is working and sending those liver mets scurrying.

Love and thanks...
Forum: her2group 09-12-2014, 04:31 PM
Replies: 11
Views: 1,913
Posted By KirisMum
My daughter wrote this article for ELLE

http://www.elle.com/life-love/society-career/why-do-we-love-shows-about-kids-with-cancer?src=soc_fcbks

I am so very proud of her. ❤️
Forum: her2group 08-05-2014, 09:12 AM
Replies: 15
Views: 2,233
Posted By KirisMum
Smile Good news from my daughter

This morning she got the results of her first scans from the phase I trial of ARRY-380 she's been on for 6 weeks. Here is the text she sent me:

"ARRY IS WORKING!!!!!!!!!! Stable brain mets! No new...
Forum: her2group 08-02-2014, 01:33 AM
Replies: 7
Views: 1,668
Posted By KirisMum
Kudos to Kiri and Kai

I am so proud of my girl--and her wonderful new husband.
...
Forum: her2group 07-03-2014, 06:43 PM
Replies: 16
Views: 3,162
Posted By KirisMum
Re: Well this sucks

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...
Forum: Clinical Trials 06-23-2014, 07:34 AM
Replies: 2
Views: 8,438
Posted By KirisMum
Re: Phase I Dose-escalation Trial of ARRY-380 in Combination With Trastuzumab in Part

Yes, this is the trial Kiri's on, Liz. She is in the lower dose arm, 750mg once a day I believe.
Forum: her2group 06-23-2014, 07:00 AM
Replies: 6
Views: 1,694
Posted By KirisMum
Clinical trials - are doctors allowed to talk?

I've been wondering why it's been so hard to find out ANY information on the effects and success rate of the trial Kiri is joining for ARRY-380, and it occurred to me that maybe because the drug IS...
Forum: her2group 06-22-2014, 01:28 PM
Replies: 16
Views: 3,162
Posted By KirisMum
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...
Forum: her2group 06-22-2014, 01:15 PM
Replies: 52
Views: 6,305
Posted By KirisMum
Re: I'm NED

So thrilled for you, Ann. This is a real blessing. :-) After everything you have been through, this is the big break you richly deserve.

Kiri did great with herceptin and perjeta as well-- it kept...
Forum: her2group 05-10-2014, 06:54 PM
Replies: 10
Views: 3,594
Posted By KirisMum
Re: Dr. Stuart Weissman Speaks on CD47 Trial

This video was posted on YouTube 14 months ago. At that point Dr. Weismann was anticipating human trials to begin in "not more than 8 or 9 months." What's holding things up?
Forum: her2group 03-28-2014, 04:18 PM
Replies: 18
Views: 1,262
Posted By KirisMum
Re: Update on Kiri

Thank you so much; you are all so very kind. I don't think we ever stop waiting for the proverbial other shoe to drop (or maybe the Sword of Damacles would be a more appropriate metaphor!),...
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