Cabana Boy on Double Duty

I wasn't sure when I started this what I'd write about. I did know that I didn't intend it to be a blow by blow account or daily version of the journey. I guess I hoped it would be more reflective. But this morning, when the snow is fresh on the ground and we are just off our most recent scan news, it seems somewhat appropriate to break pattern and give a "live" update. If you want that, read on .



We got the results of the scan yesterday. The disease continues to progress. 16 weeks after her initial treatment on Ipilimumab - the alleged wonderdrug - proved ineffective for Meagan. Her lung tumors have grown slightly and there is another tiny one. Plus the ones at skin level have grown and there is another tiny one on her arm.

She got an adjustment in her anti-hormone medication from something other than Tamoxifen to Fareston (sp?) which does the same thing (block estrogen from attaching to your cells) but without being affected by antidepressant medications. She also got another shot in the butt of Lupron (which shuts down your estrogen production), but at least its the three month version. So the hope is that over the next month her reproductive hormones shut down (they did not last month) and that she has hot flashes and night sweats that prove it - and maybe that might slow the growth - as she is very convinced there is a link to her tumor growth and hormones. So the doctor is willing to give her a month on that before starting her on the hospitalization treatment - Interleukin-2.

In the meantime we will be taking a trip to the National Cancer Institute in Bethesda, Maryland to talk with their melanoma specialists. They have over 15 clinical trials on melanoma - some of which include using Interleukin-2 but adding some other agents. It's speculative treatment - but that's what we are up for now. Interleukin 2 on its own has about a 6% success rate with another 9% getting some short term benefit. Doing a clinical trial may prove more effective. We will see if any of those look promising for her based on her particular DNA makeup - probably have them take some tumors out to use - then come back to consult with our home oncologist before making a decision. If we do decide to get treatment at the Institute it would be hospital treatment and it would be there. I've done a lot of research and the Institute people are apparently awesome and our oncologist knows the melanoma specialist there and is happy to send us there for consultation. But it would be a drag to have to undergo several weeks of treatment there - but we will if we have no choice.

We will still keep our oncologist in Seattle who Meagan loves. Because part of buying time until there is a cure is tumor management and we will need him to help make decisions about removal through surgical or radiation means if things progress.

Needless to say yesterday was pretty rough. Given the snow we have we will be hunkering down today just trying to get our emotional legs under us. We may double our anti-depressant and anti-anxiety meds today - hahahahaha.

I wish I could say I was exemplary as a cabana boy yesterday. But some days it is just shared emotional pain, and the best you can do is just hug each other and try to get your balance. 

For those interested here is a link to all the melanoma trials at the National Cancer Institute.