Tuesday, June 13, 2017

What's new?

It has been two months since my last post.....and I am ok...still marching in this fight against cancer! I have been so very busy traveling back and forth to Houston every three weeks for dr visits and scans on the INCB 054828 trial. I am on Cycle 8 of this targeted therapy trial for the FGFR2 gene mutation.
I want to thank all the people who messaged me or e-mailed me to see how I was doing since I seem to have a hard time updating lately. I am just so busy living....I can't hardly apologize when I am just having too much fun living life!!

I wanted to mention some of the side effects from my trial. My fingernails are "lifting" and my toenails are ready to fall off (actually two already have). This is a side effect for this trial drug and also the BGJ398 trial that I was on a while back. My left eye is somewhat blurry which is also a common side effect not to mention dry skin, dry eyes, dry mouth....you get the picture. I also have mouth sores by the time I start week two on the trial drug. My mouth gets super sensitive to spices, acid based foods or fruits, anything acidic. I cannot use toothpaste by week two on the trial drug...so I use baking soda for that second week. I also have a mouth swish and swallow drink to use to help keep your mouth healthy. It's all manageable to a certain extent besides food starts to not have much taste. I just go through the motions and eat so I stay at a healthy weight. I will have a vision appointment at my next visit to MD Anderson to see how bad this drug has effected my eyes. Hopefully they will not kick me out of the trial as long as it is not at a stage 3, which is like a high alert and might result in calling the drug company to see if they will let me stay in the trial. We'll cross that bridge when we get there!!

I will also have a scan on my next visit on June 26th & 27th. I don't have any idea what the scan will show. In the past, my scan results have been mixed and have been for several scans. There has been slight growth (a few millimeters) and also some shrinkage so it is putting the breaks on my cancer. Although I have great trial doctors that I see at each visit, they just are not the same as Dr. Milind Javle. He has been a compass for me on this journey with his knowledge and caring attitude. I truly do not believe I would be alive without his expertise on cholangiocarcinoma. He is the best in the U.S according to many people including me.

Before my next visit to Houston, I will be going to Siesta Keys, Florida with my sister-in-law Sheila Stoltz and my cousin Amelia Lydle for a week vacation. I am sure there will be relaxation, eating, reading, and walking on the beach most days.
There have been even more friends who had cholangiocarcinoma that have passed recently. One in particular was diagnosed the same month and same year as me. It really hit home for me and scares the hair off of your head! OK....just my head!!  Each friends who passes from this dreadful cancer is a true warrior and I just want to put my head in the sand like it never even happened.....but I know I have to face it and try to stay as positive minded as I can for my own health. It's just hard every single time and it never gets easier.

I have also been in contact with CURE magazine that is all about cancer, research, articles about rare cancers and not so rare cancers. They contacted me and wanted to do an article on cholangiocarcinoma and a patient with CC. I agreed and the lady writing the article actually read my blog over a weekend and could pretty much write the article with everything she acquired from the blog. She did interview me over the phone also. Tonight, (June 13th) I had a photographer from Effingham come to my house to get a few pictures taken for Cure magazine and the article that will be published sometime in the near future. Most people have not heard of CURE magazine unless you have had to deal with cancer or a family member has. I have been receiving it for several years and after reading the magazine several times, I usually mail them to cancer patients because many of the articles are a wealth of information. I have always loved their magazine and was honored when they wanted to include me in a piece on cholangiocarcinoma. I will update when the article is actually available or I have a few copies.

So....as you can see, I truly have been busy. My step daughter Kate just left today after flying in to visit for several days. She brought her boyfriend and it truly was a nice visit and long overdue. We spent time with her sisters and all the nieces and nephews. Joe's Pizza was one of the first foods Kate wanted from 'home' so Joe's it was!! Pat and I hope to get out to visit Kate and see Massachusetts and Connecticut by the end of summer. It's just a wait and see game to decide when Pat and I actually do have time to travel somewhere besides Houston, Texas. BUT, as long as I am still going, I AM ALIVE!!

That's it for now folks!! Stay tuned!!

My daughter Leslie came over before my CURE photo shoot to do my makeup. She did a great job and I am so thankful my daughters are always there for me!!  Leslie took this picture of me but it looks pretty good to me!!
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Patty Corcoran