Wonderful Weekend at Coast

Back from the coast after a wonderful weekend there. Friday I felt the best that I had in weeks. But Friday night I started the drug again on a lower dosage and my energy level really fell on Saturday. Didn't matter as Sophie and I got out on the beach for an walk early on Saturday morning and then I just spent the day in my easy chair, reading, napping and watching the ocean.

Saturday would have been Stefan and my 44 wedding anniversary. His presence is so at the beach so it was nice to be there and have dinner with his brother Richard and his wife and my friend (of 35 years) Ione. We told stories and shared remembrances of Stefan which was very nice.

Came home Sunday afternoon. The rash seems to be stable for the moment and other than the fatigue, I am doing OK. I head up to Portland today and do blood tests and see doctors tomorrow. We will see what they have to say.

Starting up again

Slept last night without the help of a sleeping pill and feel almost myself this morning. Energy is coming back and the itching is tolerable...my head is bad but a friend came up with the idea of putting the cream on my scalp at night and wearing one of those head wraps that people wear to keep their hairdos from smashing. So I am off to the beauty supply store to see what I can find.

Had a long talk with the research nurse this morning and the FDA requires that I go back on the drug at a slightly reduced specified level to stay on the study. So I start again tonight at 720 mg/twice a day. However, if my rash flares up then I am to stop the drug immediately. I can live with that.

I am off to the coast with a friend. I always find my coast house to be such a healing environment even if I can't go to the beach except after the sun is down. Wishing everyone an enjoyable last weekend of August. Hope the weather is gorgeous where you are and that you can get out and have some fun!

Being home feels good

My brother and sister-in- law brought me home on Tuesday afternoon and it really feels good to be in my own bed and own space. Sophie was soo glad to have me home.

I am feeling a little bit better each day and can see more patches of normal skin. Still itching and hurting and having trouble sleeping, but the joint pain is down so that I can enjoy walking. I have been taking Sophie to the park at 6:30 am to throw the ball and it is soo nice to be outside. Have to hibernate inside the rest of the day, especially since it has been in the 90's here. One good thing is that I am not nauseous any more and can enjoy eating a little. I still tire very easily and so am trying to limit visits in time and number.

Huge thanks to Kay Enbom who is organizing my help email lists. She and I will work out a schedule of needs and she will email those on the lists to solicit volunteers. Please don't worry if you are not used now. I am sure my needs will continue in the months to come and I don't want anyone to do too much or feel left out. A BIG thank you to all who have volunteered.

I feel good enough today to try my hand at a little bridge this afternoon. I have been playing on line but it will be nice to see real people and to socialize a little.

Look who was happy to see me come home!!

One step forward and two steps back

Well, my feeling better was quite short-lived. Guess I tried to do too much and it really put me back. I felt horrible last night and hurt and itched all over. A little better today but still feeling crummy. It is hard not to get terribly depressed when the drug that hopefully will extend my life makes me feel so horrible and takes away my ability to do much or anything. I still expect to be home this afternoon about 4.

Spent some time with Dash this morning before going back to bed. We were singing Frere Jacques in the photo.

The HELP I will need in the next week is walking Sophie on Wednesday and Thursday afternoons and a ride to Portland on Monday afternoon (Aug 30) and a ride home on Tuesday afternoon (Aug 31) next week. Please email me if you can help. I also would like a volunteer who would be willing to be my coordinator for dog walking and rides to Portland.

My playmate for the afternoon

Almost human again

Today is day 5 off of the drug and I am feeling almost human again. Woke up early and took a walk before the sun came out and that felt really good. Over did it by then walking with my granddaughter and brother-in-law up to the coffee shop for a bagel and coffee. I went back to bed only to get a call from the dermatologist that they could work me in..in 15 minutes!!

The dermatologist said the rash was what they were seeing with this BRAF inhibitor just more extensive and the lesions popping up all over were not squamous cell carcinomas (YEA!) but we think he said they were keratocanthomas (???). He biopsied three of them. If that is what they are, they are benign but often a lot of them crop up on this drug. I sure won't win any beauty contests but then again if this stops the spread of the melanoma, I will still be alive!!!

Next we saw the study nurse who was relieved that the rash is toning down and less itchy and sore. It is something I am going to have to live with at a more moderate level if I stay on the drug. We agreed that I was not at the moderate level yet so I will call and report my progress on Friday when he hopes that I can restart the drug at a lower dosage.

This means that I can head back to Corvallis tomorrow and don't have to go back to the doctors office again until next Tuesday when I am scheduled for blood tests, EKGs, and various doctors visits. I am really looking forward to being home and back in my own bed.

However, it does look like my days of playing golf are over for a while unless I play before 9 am and after 6 pm. The extreme sun sensitivity is not something that goes away or gets better.

Nice to get out and about

I did feel good enough to go and sit in the shade at the kids' street party. It was fun to see all the little ones crayoning on the sidewalk and throwing water balloons (think the Dads had more fun with those than the kids)

This morning Jon convinced me to walk with him and Dash to the coffee shop up the street before the sun came out for a bagel and coffee. I made it but now am ready to go back to bed for a nap.

Day three and counting

Becca says that the rash looks better today. It is hard for me to say as it is now covering my lower arms and legs...essentially my whole body. Sort of feels like I am covered with small blisterss. And now by joints ache so it is hard to walk or get around.

Still looking for the silver lining...this experience sure is helping with my Buddhist practice of not running away from pain and fear. Doctors don't seem to know anything to do but wait until my system clears itself of the drug and hopefully the rash, etc goies away

Today the kids' street has their annual block party...Hope that I feel up to going for a little while.
If you know any fun movies I should rent to occupy my mind...send your suggestions my way!

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