Wednesday, December 14, 2016

Long overdue update!


Hey, everyone! I know it's been awhile! We've already established I'm not the best at keeping up with this blog. I've probably expressed before, sitting down and trying to put everything I'm going through on paper isn't exactly the most pleasant experience. However, I know how important it is the help educate everyone on what I'm dealing with. Especially to reassure everyone I'm still staying strong and committed to kicking this cancers ass!!!

So..where to start! As you may be aware I've decided to go back to brain radiation. This was not an easy decision. I had a lot of sleepless nights and on my knees praying for the right answer. Even though I'm still confident in my initial choice to stop WBRT (whole brain radiation treatment) and start on a new protocol with the oncologist in SF. After my MRI in October both of my oncologist from Cedars and UCLA were really pushing for me to get back on a standard protocol as it looked like everything had doubled in size and count. My SF Dr. claims things are dead and it's the necrosis they are seeing and not new or larger lesions. This is why it was such a hard choice. BUT I went with my gut and trusted UCLA and Cedars were correct.  As I put it I'm just throwing the kitchen sink at this cancer as this point. Crazy drugs I don't know what they are..sure, WBRT...sure!

After meeting with both Cedars and UCLA I decided to do my treatments at UCLA. I really like my Dr. there and she was the first to suggest that we miss the Hippocampus during treatment. My main concern with the WBRT is the cognitive side effects. At least they are hoping I'm going to be around long enough to deal with side effects that usually do no present themselves until 6 months to a year after treatment. So thats something. :)

http://brainmadesimple.com/hippocampus.html

I'm also taking a medicine call Memantine. It is a drug for Alzheimer's patients. They have done studies that have shown that it helps with memory and cognitive issues as well.

https://en.wikipedia.org/wiki/Memantine

I just finished my 8th treatment today and I will complete 10 of 10 on Friday! I have to say it's been pretty easy. 10 treatments are such much more manageable than the 33 I had to do on my breast. Due to swelling of my brain they wanted to start me on steroids. I'm hoping once I wrap they will start to taper me down. I have to admit I'm not mad at them because they do give me energy and I have an appetite.

Speaking of appetite I do not believe I really updated everyone on my last ERCP results. As you may recall I was in the hospital in August and was extremely sick for several months. During my initial ERCP and stint placement things were too inflamed for them to accurately diagnose if the cancer had spread. Well, when I did my second one in October they were able to do a biopsy this time. Unfortunately the biopsy came back positive for cancer in my bile duct and pancreas. This was not news wanted to hear but the good thing is it's so small nothing is even showing up on a CT scan. I guess the inflammation was good so we could get ahead of it. I go back in for another ERCP, stint replacement and biopsy on December 30th.

As of now the plan is to finish WBRT and hold off on anything else until next year.  My Cedars Dr. wanted to start me on Xeloda http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx. I have approval from insurance but my UCLA Dr. wants to give me a break for the holidays. So I will  meet with my UCLA onco January 10th to discuss our next steps dealing with my body. There are a few exciting trials available. The main one I'm interested in is an immunotherapy and chemotherapy trial. There is a new immunotherapy for Lung cancer called Opdivo. You've probably seen the commercials. Ha...nice people looking up at a building saying you can live longer! Of course the commercial ends with minute long list of side effects. Good times! Anyway, It has only worked with lung, and metastatic melanoma. However, they are having promising trials mixing it with breast cancer chemo. We shall see.

http://www.usatoday.com/story/news/health/2015/01/12/new-drug-opdivo-successful-in-lung-cancer-trial/21659553/

So..for now I'm just staying positive and enjoying feeling a little better. Since I'm unable to travel right now we are happy to lay low for the holidays!  Andre has been working hard on the new Will Smith movie call Bright. He's also gearing up to starting Ray Donavan again next year. As much as he wants to be by my side all the time I'm so grateful when he is working so his mind can focus on something else. I'm really hoping we can try and take a little weekend vacation somewhere. A change of scenery would do us both good!


Once again I can not thank everyone enough for all of your prayers, love and support. It really keeps my spirits up. I cherish every Facebook post, text, call, donation, gift, you name it! Everything is just a big beam of light to rev me up and keep me going.

Until next time! Merry Christmas, Happy Holidays, and have an amazing new year! 2017 has got to be better than 2016!

xoxoxoxo
Sonja & Dre

https://pages.giveforward.com/medical/page-y4r7hp2/

http://radio.com/2016/10/22/lady-gaga-sonia-grigio-girls/

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