carbo taxol temodar trial 1 week in.

I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

I've been lucky to have had zero nausea but they had me on a very precise supportive protocol for that. I'm losing weight but not for lack of eating! The biggest problem I'm having with food is that my taste is changing and a lot of things don't taste right. I'm making sure to keep a lot of quick and easy foods on hand so that I can eat constant small snacks through the day. Creamy soups are really great for that and still taste good.

The worst so far was day 4 and 5 of oral temodar which they warned me would cause bone and joint pain. I've never been one to get viruses or the flu so I wasn't prepared for the bone deep grating pain mostly in my hips and legs. As they also told me, it only lasted about 48 hours which helped me to get through it. Hot bathes and staying warm helped too. Now I'm dealing with neuorpathy which can be pretty intense too. For some reason it is mostly in the left side of my body and follows the major nerve meridians down my left leg. The only thing that really seems to help when it gets bad is the oxycodone I was prescribed for the intense pain I had after the adrenal biopsy.

We live at nearly 8,000' altitude so I'm also starting to feel the affects on my bone marrow with fatigue and shortness of breath. I guess it's a good thing I'm adapted to a high altitude! They told me the low point on my blood counts would occur around day 15, November 8th, so I'm already being very careful about staying away from public places and washing my hands constantly. My hair is due to start falling out then too so I'm taking a preemptive strike and a friend is coming over later this week to shear me!

So I guess my main message for anyone else is – don't be afraid! It is all very manageable. I have good friends who are coming and helping as needed but I'm still going out and feeding 6 horses every day, taking care of my house and dogs, and my husband is being a dear by helping with the cooking etc. If there were something I wish I had known about in advance, it is that my emotions would be so fragile and on the surface. I'm a very happy and optomistic person so it's a bit shocking to always be on the edge of tears. Just be prepared to be kind to yourself and for heaven's sake, surround yourself with happy, positive people! I've cut off quite a few people who insist on sharing the 'horrors of chemo' that they have read about on the net and about how many people are dying from melanoma!