Speckled lobster

Thank goodness for ambien and a decent night sleep. Am a little better this morning. Still look like a speckled lobster but am itching less and hurting a little more. Don't feel like doing much except watching movies or listening to books on tape. Even a littletime wih grandchildren wears me out.

Nothing like being a guinea pig

Looks like I will be in Portland for a while. Came up to see the doctors today and they were amazed at the extent of my rash and skin growths. Guess it is one of the worse that they have seen. So i am off the drug for the time being and we are all hoping that the rash will get better. We are all also very hopeful that this means that the drug is working. As the doctor admitted that as bad as it is, it is better than being absolutely miserable on the chemo drug with very little hope of getting better!

I have to go to the dermatologist on Monday to have the growth's taken off (there are many of them so don't know how many he will do then or if I will have to come back several times)

Will save you the horror of seeing a photo of me right now...not pretty. We'll keep you posted on how things progress.

BRAF...here we go!

On Monday August 9th, I found out that I had been randomized into the experimental group and would be getting the BRAF inhibitor (RO5185426), 960 mg twice a day. I was very excited because in the Stage I and Stage II studies, very positive results and remissions had occurred.

If you are interested in reading more about this type of melanoma therapy go to the BRAF gene description in wikipedia.

So I began taking the pills on August 9 and within the first week, I realize that I was fast becomming the poster child for all the worse side effects: loss of appetite, nausea, fatigue, rash, sunburn, joint pain and tinligh and burning of face, hands and feet. Most people in the stageI or II trials had just one of two of those side effects...not them all.

So after 11 days on the drug, I am heading up to Portland to see the doctors and see what they can do to relieve me from some of this. This certainly has had a huge impact on my quality of life. So hopefully they will be able to reduce the dosage or something to help with the side effects.

Thanks Goodness for Adorable Grand Children

My optimism was dashed on June 29, 2010 when the PET/CT scans showed metastases in the cirvical spine, right lower lung and right flank. Two of these metastases are not easily removed with surgery and I was now in the next phase of Stage IV melanoma. What a bleak few days I had as I absorbed the news and tried to find some equilibrium again.

Thank goodness for my grand children (Dash- age 2 and Kai -age 18 months) and my dear children and their spouses. We all gathered for the 4th of July at our vacation home on the Oregon coast for three days of laughs and Granny support.

Thanks goodness also for three dear friends, Lynda, Karla, and Judy, who accomplanied me on a 6-day golfing and sightseeing adventure around NW Oregon and Washington. We laughed so much that I stored up enough endorphins to last me through the anxioius weeks of waiting to see if I qualify for a Stage III trial of a BRAF inhibitor.

Finally found out today - August 3 (have been waiting since July 6th) that I have the mutation and now must pass the the other clinical tests to see if I qualify for the trial. Then I have a 50% chance of getting the drug. If I end up as a control, I will be on dicarbazine. We shall see.....

The Roller Coaster of Winter 2010

This was a difficult winter for me. My wonderful partner Red died of metastasized prostate cancer on February 13th. The last conscious thing that he did was to order a dozen roses for me for Valentine's day and insist that his daughter make a celebratory dinner of crab for everyone. I miss him terribly.

Right after the funeral, I returned to OHSU to have aother metastasis removed from my left knee.

The March PET/CT scans showed no new tumors and decreased activity in those noted before. We were elated that perhaps the Leukine therapy was preventing metastasis to organs but not to subcutaneous tissue. I was beginning to find myself again and decided to go to Spain and Portugal with my sister and her husband. It was a fabulous trip...everything was perfect..the weather, the food, the sightseeing, the interactions!!! I returned feeling really upbeat about my future. I was so hopeful that my regime of meditation, diet, exercise, and Leukine therapy was really helping my body to fend off the melanoma metastases

Happy, Happy Day!

Happy Holidays to all,

I just left my oncologists office where I got the best news possible. The drug Leukine, diet, accupuncture, herbs, meditation, and your prayers and healing energy have all combined to help my immune system arrest the melanoma metastasis. I have only one new tumor and all the existing tumors have shrunk or disappeared.

So I toast you all for your support and caring. I will continue to follow this regime and live each moment to the fullest until my next scans three months from now. I see no reason not to believe that I can continue to live fully for years to come.

REPRIEVE – What a glorious summer!

It is hard to believe that it has been almost 6 months since my first blog entry. At that time, I had expected that I would have had a summer full of experimental trial therapy and/or hospitalizations with lost of posts and updates on my progress.

As you can read…that was not the case

Since in July I didn’t have a tumor big enough to qualify for a vaccine trial and I was feeling so good, my oncologist and I decided that I should just enjoy my summer and wait to see what the scans in early September would show. I did, however, continue on the drug Leukine and began practicing meditation, imagining work, and Qigong in earnest.

My summer was filled with lots of golf, time with my two wonderful grandchildren, and many walks on the beach at our home on the Oregon Coast. My children threw the most wonderful 65th birthday party for me (when I was diagnosed in 2000, few thought I would live to 60, let alone 65). As my daughter said, this was a summer for making wonderful memories.

Although the results of my scans in September weren’t great, they weren’t that bad either. I had a few new hot spots in various lymph nodes (but none in any organs), but the tumors from the June scan had either not grown or had shrunk. I WAS THRILLED!

So this fall, I have continued on the same therapy, living each day to the fullest. I am waiting to see what my scans in December show. I believe the help, support, prayers, healing vibrations from friends and family have a great deal to do with my body fighting these tumors…Let’s hope that I have the upper hand by December!