Poster Child for side effects of BRAF

Well, I am fast becoming the Queen of side effects of BRAF. I now believe I have had every side effects listed and not just mild effects but ones that have really affected my quality of life. The latest is that the results of last week's biopsies are back and three out of the five showed squamous cell carcinomas that require more surgery. So I am now scheduled for two more surgeries in the next month. The worry is that other spots on my body that we are watching may also turn out to require more surgeries as well.

So that news was the last straw for me and I decided to stop the drug as of last night. My oncologist and I will meet in two weeks and put together a plan. Right now I am going to concentrate on getting my strength and hope that my liver, skin, and joints improve and are restored to where they were before the trial

Interesting science behind the drug I am on

For those of you not interested in things chemical and biological...I suggest you skip this entry.

One of the amazing developments over the last 20 years in biology is our understanding of genes and DNA and our ability to easily sequence the DNA of genes. In the late 1960s, I was doing research with Dr. Jack Remington, a world expert on toxoplasma gondii at Stanford and it took us months just to separate the DNA in different strains. Researchers were just beginning to discover that a change of one amino acid in a protein (caused by a mutation in a gene) could make the difference between a normal person and a person with sickle cell anemia or a normal child and a severely retarded one with PKU.

Fast forward to today, using sequencing techniques, scientists are discovering that some cancer cells can be characterized by genes that have mutated and don't work properly and cause the cell to divide prolifically. Discovering drugs that can attack the products of these mutated genes and stop the cells from dividing are leading to treatments that cure or hold some cancers in check.

For example, chronic myelogenous leukemia (CML) is caused by a single genetic change that makes a gene keep producing a specific enzyme, a kinase, that after a cascade of chemical reactions, causes the cells to continue to divide. A drug called "Gleevec" has been developed that binds to the kinase. People take Gleevec for their lives and their CML doesn't return. In about 5% of the CML cases, the cells become resistant to Gleevec, but scientists have discovered why and have developed two other drugs that work to block the kinase when this happens.

So what about melanoma? In the last 20 years, there have been no therapeutic advances in its treatment and half of the patients with metastatic melanoma die within 6 months. Scientists have discovered that half of the people with melanoma have a mutation in the BRAF gene in their tumor cells. The drug that I am on, a BRAF inhibitor, targets the product of that mutation. In Stage I and II trials, tumors shrank in 80% of the cases (mine have shrunk). Unfortunately most of the patients relapsed within a year. (The hope for me is if I relapse to where I was before the trial, I will have random tumors that can be treated with radiation or that my own immune system can respond with the help of some of the new immune enhancing drugs. )

The thinking is that the melanoma cells became resistant to the drug by keeping the drug from binding to BRAF or by switching to a different driver mutation. Research is very actively trying to develop back-up drugs. There is one trial going with a BRAF inhibitor and one that targets the back-up pathway.

So you can see that research is at a critical stage right now. I just need to hold on for two or three more years!!

(PS. Donations to the Melanoma Research Foundation at my website ( http://www.firstgiving.com/mollybloomfield) have reached 25% of my goal of $5000 by the Holidays)

Did too much over the weekend but it was great for my psyche!

Yesterday, Lynda and I went with Linda Humphrey to her home and a local winery to see an exhibit of her oils and water colors. It is such a treat to look at art with the such an accomplished artist to hear how she was able to accomplish the beauty on the canvas. I am seriously contemplating buying one of her works (if I can find a wall to put it on). It has such gorgeous light filtering through the trees on some beautiful flowers.

It was the day of our monthly golf scramble and I was so jealous that I couldn't play but I did heat up the lasagna and went to dinner. It was such fun to see everyone and catch up but I was blitzed by the end of the evening.

I am so fortunate to have a woman in town who is very experienced in edema massage. I got in to see her today and she worked on my face and greatly reduced the swelling and discomfort in my face. Thank you, thank you Piper.

Good News and Bad News

Wonderful news...this doctor visit with Dr. Lufkin confirms that he is a caring, empathetic physician who values his patients as partners in their health care decisions and who has his patients best interests in mind.

Good new...I have no new tumors in the parts of my body that they scanned and the tumors that they were following have either haven't increased in size, have decreased in size and have disappeared.

Bad news....the side effects of this drug continue to compromise my health and decrease my quality of life. My liver functions has been compromised by the drug. I am now in the dangerous zone yet but could soon be.

Difficult decisions to be made. Dr. Lufkin , Rebecca and I discussed many options for me and decided that I would continue on the drug for another 3 weeks but may stop if further blood test show that the liver function is worse or if the fatigue, joint pain and skin growths get any worse.

By the time I got home yesterday evening, I was more than exhausted. Had a little soup and went to bed.

Felt enough better this morning to got to breakfast with SueAnn and then spend an hour on a lovely morning wandering around the booths at the Fall Festival. Bought presents for the grand kids and a carved stone and metal sculpture for the yard and a lovely bonsai for my window sill. Only lasted a little over an hour and came home.

It is hard to be inside on such a lovely fall afternoon but luckily there are some very good football games on. Going to stay home and root for the Beavers on the blue turf against Boise State.

GO BEAVS!!

Be happy for a port

Well, it only took two nurses to find a vein with blood this morning. Luckily we were able to leave the IV in for the blood test tomorrow.

Did have some fun dinosaur play time with Dash last night. Thought you might like to see a photo of my grown up two-year-old.

No photos....PLEASE

Saw the dermatologist yesterday and he did a job on me....5 biopsies...three on my face so I am not a pretty picture with all the band aids, etc. Dash was even a bit afraid of me when he got home yesterday until he figured out that Granny was really behind that face.

Lots of nausea and fatigue today so didn't feel much like doing stuff with the grand kids....darn

Off to Portland for Dr visits and scans

I leave tomorrow for Portland to visit the dermatologist (Skin growths and squamous cell cancers are side effects of the drug....) and the oncologist. I will have my first CT scans after being on the drug for two months. Keep your fingers crossed that the results are positive!!!

Should have a great few days with grandchildren as well. May not get a post up until Friday but will be sure to let everyone know the results after I visit the oncologist on Friday.

Really missing being on the golf course in Bend with all the gals from the country club, but I know that it was the best decision for me not to go along on the trip.

Susan Komen Walk for the Cure

In past years, my friend SueAnn and I have joined the 45,000+ that participate each year in Portland. It is a really inspirational event. The last few years we have joined Becca's sister-in-law's team who walk in memory of Sarah's mother. Sorry to have to miss it this year, but my grand daugher, Kai has taken my place in style!!!

May you be inscribed for a good Year

Last night was Kol Nidre, the holiest evening of the Jewish Year..a time of reflection on the year past and of the year ahead. One of the lasting gifts that Stefan left to this community was a Kol Nidre service of beautiful music arranged for amateur choir. Joan Caldwell and members of the Beit Am choir (many who are not Jewish) have kept this tradition alive for the six years since Stefan's death. I was so glad that I felt good enough to attend the service and listen to melodies again.

Stefan loved music and our lives together was filled with music of all kinds. I know that his retirement years would have been filled with music arranging and composition and his new-found avocation of choral directing. Because of this I have established an endowed scholarship in music and choral directing at OSU in Stefan's name.

Stefan...Red...I miss you both terribly but wouldn't have traded our wonderful times together for anything....

HAPPY BIRTHDAY, RED

This is a day for thinking about the two very special men I have had in my life.

Today would have been Red's 87th birthday. When you were with him, you would never had known his age..he had such a lust for life. Although we had only five years together, they were filled with love, laughter, coffee and crossword puzzles in bed, golf, and adventures (to places and experiences that each introduced to the other). Through Red, I became part of a wonderful extended family..that introduced me to Portuguese bean soup, Marsala's, killer mint juleps and martinis, and even driving a team of Clydesdales!!!

Please think about making a donation

I have established a donation website for the Melanoma Research Foundation (http://www.firstgiving.com/mollybloomfield). I am hoping to raise $5,000 by Christmas toward research on drugs similar to the one I am on (but more targeted and with fewer side effects). No matter the occasion, please consider making a donation in my name.

Thank you. I am confident that the money will help save someone's life in the future.

Sorry about not posting for a few days

Thanks for the feedback that you all get worried when I don't post every day or so. That means so much to me that you are all keeping up with what is going on here.

The answer is not much...it is just one day at a time and every time I think I am getting better, I have a day where I am so tired and hurt so much I can't get out of bed. It is hard not to get depressed. It has been cloudy and rainy the last two days which hasn't helped either. I am so grateful to have a superb acupuncturist and lymph massage therapist that are making a huge difference when my body is having so much trouble coping with the drug.

Becca, Brian and Kai were here for a few hours yesterday on the way to the coast. I couldn't do much more than sit on the couch and watch but just watching Kai explore..both with her actions and her new vocabulary buoyed my spirits.

I am finding that some afternoons all I feel like doing is vegging in front of the TV. Now that the US Open Tennis Tournament is over, I am desperate for ideas of what to watch. Do any of you have TV series that I can watch on DVD from Netflix that you would recommend? I just finished the #1 Ladies Detective Society first season. I loved them and am very disappointed there aren't any more.

Spectacular beauty

My friend SueAnn took me to the coast house for two days. The weather was beautiful...sunny, warm, and no wind. I even had the energy for two long walks on the beach on Friday night and Saturday morning. But most beautiful of all was the amazing star-filled sky last night (no moon and very little ambient light so the heavens were glorious).

Weekend has ended on a down note as my joint aches have increased all day with chills and a slight fever. Hopefully getting to bed early with a soak in the tub is just what I need.

Lastest in golf and beach walking attire!!!

It is a good thing that I am not vain or have put out a lot of money for cosmetic surgery as I am afraid that my droopy, lumpy face may become permanent..or at least for as long as I am on this drug...and I will have to wear such stylish attire whenever I am outside during the day!!!

L'Shanah Tovah

Had a wonderful Rosh Hashanah meal with dear longtime friends: Ken and Paula Krane, Pat and Irma Canan, Sue and Howard Korn, and Lita Schecter. Missed having the kids with us as this has been a tradition for the Kranes and us for many, many years. Too tired to go to services but was there in spirit. Sending wishes to you all for a healthy and happy year ahead.

Thursday was the Jack and Jill tournament at the Country Club. Because it was cloudy and sprinkling, I went and was the ghost player for the team. I did the chipping and putting on every hole and even though we didn't win, the team had a great time. I was blitzed by the time lunch was over, but I am really glad that I did it. My outfit was something else to keep the sun off. Too bad I didn't get a photo.

Side effects seem to yo-yo. Joint pain is better but rash is increasing. This may be the pattern as long as I am on the drug. I will be happy when the research docs get together and discuss the effects of the drug on their patients and what they have found helps them.

Patience.....

It is hard not to get discouraged...Yesterday afternoon I thought the joint pain was better (and I didn't do anything foolish like play pickleball...) just stayed home and watched tennis. But this morning the pain is much worse. I keep hoping that I will get over a hump and the body will get use to this drug so that the rash, pain and fatigue can be come background noise rather than all consuming as it is at the moment.

My wonderful friends, Judy, Georgia, and Rosemary, came over yesterday afternoon for some bridge and they bought dinner. We barbecued hamburgers and it was actually nice enough to eat outside.

Thank goodness for the US Open tennis or I think that I would be going stir crazy this week.

Rash better..joints not

From one side effect to another. I am hopeful that this joint pain will also be temporary as I am having trouble with simple things such as getting out of bed, opening containers, getting a shirt over my head, walking, etc.

I did make myself go out with the dog this morning and slowly walk around the block and the pain in my feet and legs felt better when I got home. So maybe using the joints helps loosen them up and lessen the pain.

But I must admit that I am having trouble not getting discouraged. I want so for this drug to work and for the side effects to be manageable enough that I can enjoy life activities.

Got to remember to "Manage gracefully!!!"

Did too much yesterday..

Well, I am paying for yesterday. I could barely get out of bed this morning because of the bone and joint pain. My dear friend SueAnn came over and made me breakfast, walked Sophie and helped me with some chores.

Going to be a good girl and stay really quiet today. I am going to go over to a friend's and watch the first OSU football game. That will be a good distraction

Darn...thought I had escaped

Well, it is day 7 on the lower dosage of the BRAF inhibitor and I was feeling pretty smug about how the side effects on this level weren't too bad....

Seems like I didn't wait long enough. My face is flushed and breaking out again and I have new rash on my chest. And my joints have started hurting...

In spite of all that, I went over to the Athletic Club today and played three games of pickleball. BOY did that do my psyche good!!! I was a little slow and it really wore me out but if I can do that once or twice and week and not pay for it too badly, then that will be such a postive thing for me.

Decided to stay home and out of the holiday traffic this weekend. Am going over to a friends to watch OSU's first football game tomorrow. Monday friends are bringing food and we are going to play bridge and have a barbeque. Should be a good weekend!!

Thought for the weekend..."it is the style with which we pass the time that matters"

Looong Doctors' Appointment

Back home after two days in Portland for my three week appointment with the research doctors. It was 5+ hours mainly caused by the fact that it took three very experienced nurses to find a vein from which they could draw blood. We all decided that it would be a good thing if I got a port so that surgery is scheduled for October.

I seem to be holding my own on the lower dosage of the drug. Funny thing is that on the higher dosage, the rash and swelling involved most of my body except for my lower legs. Now after being off the drug for a week and then starting on the lower dosage, my lower legs are swollen and totally covered with rash but the rest of my body only has a mild rash. Strange...

Decided that my mantra for now should be "Manage gracefully!"