3c a career ending injury?

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5/2/2014 4:26pm
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Replies: 5

Hi Friends,

I've got a Onc appointment on Monday, but I'm trying to wrap my head around all of this.  Please bear with me. I know I'm incredibly blessed, but I'm in the midst of transition and my feet haven't hit solid ground yet. So at this point in time, I am only grieving what seems to have been taken away, rather than rejoicing in the opportunities that are before me.

A bit of background: I am an American who has lived and worked in Asia just about half my life. I have invested heavily (in time and talent, some treasure, too)  to be able to live and work comfortably there. Friends, family and fulfilling work is there.  I know nothing else.

In 2008, I found out I had melanoma.  I went through the treatments (3 WLEs, 3 SNBs, CLDN, HDINF, GM-CSF) and was declared NED. I was going through school at the time (more investing!), and so living and working not in Asia, made sense and was challenging.  

I graduated (last year!) and returned to Asia thinking I'd be reunited with my life in Asia again.  I knew it would be different.  I am different, but there were opportunities for me to do what I do best there, and I was grateful for that start.

Then at the end of last year, I found 3 intransit mets around one of my SNB scars.  I came back "home" to So Cal, checked in with my awesome Rock Star Dr. and after having clear scans, had 4 doses of Ipi.  Now I'm 20 weeks into the Ipi treatment, and have 4 new intransit mets pop up. I'll know more on Monday, but it doesn't sound like I'm an Ipi responder.

So Plan B is to try and get Merick's anti-PD1 drug in their MK-4375 Expanded Access Program.  I don't know that MK-4375 will work, but it seems to be the next best thing.

So my questions and wonderings are: Do I have a career ending injury?  It seems to me that whatever happens next- respond or not to MK-4375, I'm going to be back in the US for a long time (2+years?). Yes?  I've been living fairly temporary while I've been doing Ipi, but maybe it's time to say good by to my life in Asia, and invest in one here in the US.

Thank you for listening to me whine. I'm trying to move through this, and make reasonable decisions, but nothing seems reasonable.

Peace,

Julie

 

Hi Julie,

I have immigrated to America few years before  being diagnosed with deadly mucosal melanoma-and it was the best decision of my life.If it wasn't for the American top notch doctors and superb healthcare,I would not have been alive today.Yes ,it is expensive but it is the BEST HEALTH CARE IN THE WORLD.Be grateful that you have the chance to  access  the best  team of professionals, best facilities,most  innovative treatments and top notch research-surely an opportunity that billions of people worldwide could  only dream of!I would not worry about Asia or any other place,just be grateful  that you have access to the best healthcare system in the World.

All the best to you,

Teodora Chasse

Anonymous - (5/2/2014 - 8:48pm)

I think you have a nice game plan with the Yervoy and backup plan B with the anti-PD1. Clearly the health comes first and you made a wise decision to return to the USA and are taking the bull by the horns on the treatment.  One approach might be to sit tight just a bit to see how Yervoy or anti-Pd1 treatments go and if you can secure a durable response revisit moving back. Take the pressure and stress off yourself and take it a day at a time. I have completed the Yervoy therapy and am NED currently but the anti-PD1 results are certainly extremely positive with a significant number of long term responders. Asia isn't going anywhere, make sure you aren't, then you can go back in style and in good health. Once you stabilize your melanoma and are back in the saddle, and if you do decide to return to Asia, you can fly back over here every six months for your scans and appointments. Good luck with your treatment and your decision. Sounds like you are in good hands. You have lots to be totally psyched about right here, right now. 

BrianP - (5/3/2014 - 10:09pm)

Hey Julie,

I really can't say much to try and lift your spirits.  I won't get into my specifics but I feel exactly like you do.  I feel so blessed to have the life I have and the treatment options I have BUT it's not the life I had before melanoma.  Best case scenario maybe I can get that life back in a couple years but even if my melanoma situation is under control there's no gurarantee I can get back to that life so what do I do in the meantime?  Do I start planning and investing in a life different than I had before melanoma even though it's not the life I want?  Do I just focus on getting better and go for broke that I'm going to be able to resume my pre-melanoma life?  It's a tough call.  I feel your pain Julie.  You can whine here anytime.

Brian

Anonymous - (5/4/2014 - 11:35pm)

I'm certain that others here can give you specific citations, but I seem to remember reading that if you can get to 3 years NED after anti-PD1 treatment the chances are very, very good that you will not have a recurrence. I think that the same pattern applies to the other checkpoint inhibitor treatments-- if you can remain NED for 3 years your prospects are very good.

So you are correct-- you can't do what you were planning to do in Asia right now-- probably not for the next 3 or 4 years. But you can use these years to prepare to go back to Asia with bigger and better plans than before.

Maybe you could use these years to create your own non-profit organization, prepare a web blog and slide show, and tour the US giving talks about what you want to do in Asia and collect money, donations and support for when you go back there. Maybe you would want to start a "microloan" program in Asia to help people, especially women, start small businesses. Well, you could use your 3 or 4 years here to take business and accounting courses and perhaps work with a microloan organization to learn how it is done. Then take those skills and experiences back to Asia with you. Maybe you would like to help diverse ethnic groups work together for their common good. In that case, you might use this time to learn additional local tribes and their histories and read up on how other multi-ehtnic cultures have come together to their mutual benefit. 

In other words, yes, you will probably not be able to do what you wanted to do right now. But if you treat the next 3 or 4 years as a sabbatical where you are carefully and actively preparing for what you are going to do when you do get back to Asia, your mission there could be greatly enhanced compared with what you had planned. Three of 4 years may seem like a long time but not compared to the 30 or 40 or 50 years happy,  productive years you will have there eventually. 

Anonymous - (5/6/2014 - 2:51pm)

Hopefully things went well for you yesterday.Please post  howyou aredoing. We all care about you.