Live far away and lost

This forum was created for those with an incredibly hard task: taking care of someone they love who is ill.
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Julia4jackie
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Joined: Fri Apr 28, 2017 11:18 am
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Live far away and lost

Post by Julia4jackie » Fri Apr 28, 2017 11:39 am

Hello,
I'm not sure if this is the right place to ask but I'm feeling lost. My sister lives in CA and was recently diagnosed with stage 4 melanoma. It started with some strange moles on her shoulder 5 years ago and after getting them removed she stopped going to the drs for rechecks. Fast forward to dec 2016, her lymphnodes were swollen and she had a few more odd miles. We found out the cancer was back and now has spread to lymnodes. She had some pain last week and ended up in the ER. They did some scans and found that it has spread to her stomach, colon, liver and lungs.
They've finally decided on a treatment and will begin Ipilimumab.

And this is all I know.

To give some quick background, I was a researcher 15 years ago and so I've been reading tons of medical journals to learn what to expect. And everywhere I look this sounds terminal. She's only 33 and I feel like she's (rightly) scared to let me and the rest of the family know. But from what I read, this will be fast and that she will need as much help as we can get her.

Please tell me I'm wrong and this isn't terminal. From what I've been reading, there's a pretty good chance she won't make it a year. She's saying not to worry she's fine. Where as I want to jump on the next plane and be with her. Could it be that stage 4 really isn't that bad??

Sorry if this is rambling...I'm just scared and freaking out.

Thank you....

Catherine Poole
Posts: 11245
Joined: Wed Jan 02, 2008 12:09 am

Re: Live far away and lost

Post by Catherine Poole » Sat Apr 29, 2017 8:05 am

Sorry to take so long to respond to you. Yes, I would jump on the next plane to see her. I would ask she get the PD1 (Keytruda or Opdivo) drugs which have a much higher response rate than IPI (Yervoy). Make sure she is going to a top specialist in melanoma. In California, UCSF and UCLA are tops. It does sound like a serious spread and she needs someone like you advocating for her. I would also find out if she is BRAF neg or positive for other therapies. Please feel free to call the helpline: 866-463-6663. Call anytime and if we don't answer, we will call you write back. Or you can email me: cpoole@melanomatinternational.org You are a special sister indeed and despite what she says, she needs you.
Catherine M. Poole, President/Founder
Melanoma International Foundation

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