Adrenal Gland Tumor Has Grown – Next Steps

Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.

Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.

I am now faced with an adrenal gland tumor that has been there for three years, not doing much of anything until my last scan showed an almost doubling of size, It is now 5.4cm. Melanoma was confirmed by a fine needle biopsy, got the path report late last week. The plan is to remove that sucker and stay on the Nexavar. I am trying to avoid moving to another treatment for as long as possible, since I also have multiple sclerocis and psoriasis, both autoimmune diseases, that make me a questionable candidate for ipi and other immune based therapies. So my treatment options are limited and I want to preserve them for as long as possible. The thinking is that since I haven't had any new tumors in three years that perhaps the adrenal gland tumor were some errant cells and the Nexavar is still giving me significant benefit. The only other tumors I have had this time are two in my lungs that shrunk considerably during initial treatment and haven't grown for about three years. At my last PET scan they did not light up at all, so we think they might not be active at all. Both my general oncologist and Dr. Daud, at UCSF Melanoma Treatment Center, conccur with this plan. Which makes me very happy, because this is the direction I wanted to take when I heard the news about the tumor growth.

 I am hoping to hear in a few days what surgical technique is recommended. My oncologist is talking to the SRS guys, the laproscopic guys, and the regular surgical guys to see if I am a candidate for a less invasive surgery than just cutting me open. In the meantime I am concentrating on having lots of fun, being with the people who I love, and trying to get my taxes done!

BTW, are there any fellow Melanoma Warriors out there who are Kaiser patients in the SF/Bay area? Haven't met anyone in quite awhile and would love to network with you!

Thanks to so many on this board who have provided me with information and support over the last four plus years. I have an intuition that I have many days, months and perhaps years of life ahead of me, and I intend to live each day as fully as possible.

Love to all!

Eileen L