Urgent - ALK Genetic Carrier with Rapid Tumor growth - need guidance - 1268187

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nateh32
Urgent - ALK Genetic Carrier with Rapid Tumor growth - need guidance - 1268187

My sister has recently been diagnosed with Lung Cancer and is a carrier of the ALK gene. She underwent Chemotherapy this fall and unfortunately it did not work.

She's 32 and a non smoker. She received the results of her PET today and the cancer has spread in the last 3 months to her bones, liver, brain, back, ribs, kidneys, and just about everywhere you can imagine.

She was put on Xalkori yesterday and is a candidate for Gamma knife radiation to treat the tumors in her brain. They asked that we wait 2 weeks for the tumors to grow to a size that are treatable by this radiation.

Due to the raid rate of growth and how quickly this has spread, I'm concerned that waiting 2 weeks is not the best option and she should consider full brain radiation.

I need to speak with an expert in the ALK Genetic mutation and am having trouble finding someone online. Can you assist me in who to contact and how to contact them?

I think she is a prime candidate for a case study and also in urgent need of help.

What should I do?

Thank you,

Nate Hardesty
Brother of Cancer fighter

303 718 2881

Dr West
The vast majority of lung

The vast majority of lung cancer specialists have significant experience with ALK inhibitors and ALK-positive patients. You can review some of the ALK programs here to learn of several of the particular experts in ALK-directed therapy. Some of these activities are in the right column of this page. You can then just look on the internet for the contact information for any who you might like to consult with.

We are legally not permitted to provide medical recommendations for how to treat someone who isn't our patients, and we couldn't presume to have more insight than her own doctors about how to manage her brain metastases. The fact that the lesions are too small to target now suggests to me that it is not likely that the progression will be so fast that it can't be managed as they suggested.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

nateh32
Dr. West,

Dr. West,

Thank you. I will use the site to research an Oncologist to contact. While I completely understand your assessment of the brain treatment, it's hard to believe that a cancer spreading through a body within 30 days is one that will allow 2 weeks to give us "Just" the information we need. It seems like a no win situation unfortunately.

Thank you,

catdander
Hi Nate, I’m so sorry your

Hi Nate, I’m so sorry your young sister and family is going through this at such a young age.

I wanted to make sure you got the info you needed so here’s a link to several doctors who presented at a conference on the subject of ALK. And know that there have been many who didn’t respond to conventional chemo but have done extremely well with targeted drugs. I know how scared you all must be and can’t imagine your sister’s angst but I hope it all quiets down and move to a new normal soon.
http://cancergrace.org/lung/alkvideos/

Sometimes a 2nd opinion is all that is needed in a case like this. Here’s a good discussion on it, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide-...

Janine