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Hi Joan,

I have been thinking about you. We will both be treated for brain mets! I have been trying to gather info to make an informed decions about treatment. If you would like to to share information, you can PM me or send your telephone number,if you would rather talk.

I am meeting with the radiology Onc on Tuesday. I know he recommends WBR, but I have a serious reservations.

Hope they have you feeling better. My headaches and nausea were also caused by brain mets, but actually from the last radio surgery causing swelling (which is totally normal). I'm on 4MG of decadron a day and I'm up and about feeling fine.

Warm regards,


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Hi and thanks so much for all the kind words.

I actually got a more comprehensive diagnasis today, even though I'm still a little confused. I don't have actual mets in the brain. They see cancer cells in the fluid that surrounds the brain. Good news was that there were no cells in the spinal column or cord. This was done through two separate MRIs.

There is a name for this. I think it's called leptomeringeol metastis

or some kind of disease.

The real problem is what do I do next!!

3 choices so far:

1) WBR which I really don't like at all . I'm not a candidate for Cyberknife beccause these are not tumors, just cells floating around. (I will check on this).

2) A clinical trial just for this exact diagnosis. Going to read about it tonight.

3) some other chemo which I've totally blanked on. I'm very exhausted.

I'd love to hear pros and cons on WBR from anyone. Also, from people who have gone through trials.

Thanks so much


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#1, welcome Dana. Glad your here. Your mom is very cool.

#2 Joan,

WBR was something I went crazy researching as it was mom's only option. The typical stuff, hair loss, skin irritation, fatigue. The stuff that varies person to person is the short term memory loss and then there are longer term effect down the road which may include differing degrees of memory loss. But that is all hard to quantify and different in everyone.

The thing I would be interested in is I know Chemo does not pass the blood brain barrier, which is why they don't treat the typical met with chemo. But what you have is different. I would ask the Dr. does the blood brain barrier come into play with what you have?

Prayers to you Joan!

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I am so proud of you. You are so strong and so positive. Stay that way. You will get through this next hurdle. There is so much support here and I can't express how much all your fellow members of LCSC mean to me. I know how much they mean to you.


Scott, Emily and Ella

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Well, I did make some pretty important decisions today. I clarified all of my options and have decided to go with the Trial. It is the most cutting edge, aggressive way I can go which hopefully will give me the best chance.

There are two other routes I can take if this doesn't work. But, I feel extremely confident, expecially since I made the decision.

I have my whole family on here now. My son, daughter and granddaughter. I'm just missing my shy hubby.

Thanks guys, love you!


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Good to hear you were able to come to a decision Joannie. It's tough, I hope the trial proves to be very effective for you! You've got a great attitude. Oh, and I don't think I ever commented on beautiful you guys were on your daughters wedding day. That dress was the perfect color for you!

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Sorry to hear about your cancer, but I am glad you have come to a decision. Being so close to Sloan Kettering do you go there for any opinions? I went there when I was first diagnosed. I’ll be praying for you. As you know I am an ex New Yorker (Garden City and Stony Brook) so we are sort of neighbors. Hang in there and keep us posted.

Stay positive, :lol:


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Hi Joanie,

You must be somewhat relieved that you made a decision. One of the hardest parts is making it.

Keep us posted on when you will start the treatments so we can send prayers your way.

Just know that I am thinking of you and sending mediatation prayer to your for strength as I know how exhausted you must be.

Take care my friend, God speed.


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Hi Ernie,

Yes, we are certainly sort of neighbors. I live in the Five Towns. Garden City is almost my back yard. And Yes, Sloan Kettering is also my hospital. It was just rated as the #1 hospital for lung cancer in New York. That made me feel really good.

Glad that you are doing so well. Hope to join you.


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