**Update: Here is one positive--the RO5 trial is in Nashville and we just found flights from KC to Nashville for a very reasonable price! Yippee! I know it's not much, but at this point even a little good news makes me smile:)
Yesterday was a rough day. For C and myself. I try not to cry in front my children. Usually I don't. However, yesterday I just lost it and I bawled in front of K. Poor guy. Once he saw me crying, he started crying too. He just kept telling me that I'm a big girl and that I shouldn't be crying. Then he gave me the biggest hug a little guy could ever give his mama. It was priceless.
I am trying to be strong. But, I'll admit, sometimes this all gets to be a little much. It's just one blow after another. At some point I guess I feel like I deserve some good news. Noone, and I mean noone, can handle bad news after bad news. I don't care how strong you are. Negative news, after negative news takes a toll on you, emotionally, spiritually, and physically. Yesterday was one of those negative news type of days.
The more I research options the more scared I get. The more often the cancer comes back the more difficult it is to fight off. That's scary.
I have looked into alternative treatments, but those require pretty much a whole life change and I am not sure that it is a possibility right now. The natural things that I am doing at home are fairly simple, but not all that enjoyable!
I am looking into The Bright Spot for Health which is near us. It's expensive, but they do some in depth testing, which I think would be fabulous. Before we can stop this cancer from recurring I think we need to figure out why it keeps coming back and why my body isn't even attempting to fight this off. We know that my body responded to chemo, but not to immunotherapy. I guess I am wondering why. Immunotherapy amps up your own immune system, however, my body did nothing on Interferon. What am I doing wrong or what can I do to help my body fight off this nasty disease. If anyone has had any experiences there, please share. Our Pastor is a huge believer in them and he is the one that has really convinced me to look into it more.
The RO5 trial that I need to get into is no longer open. The RO5 trial that is going on is the RO5 drug with a drug cocktail. The cocktail of course has it's negatives, but I think I am ok with that. The down side is that the trial is going on in only a few select places. This means transferring my care yet again. I have already spoke with my nurse at MDA and hopefully all that was sent today.
Here's the real kicker, I still may not qualify for the trial. The first appointment is just an appointment, after that there is lots of testing that has to be done to make sure I qualify. By the time all that is finished it may be 6-8 weeks down the line. By that time there may be no spots left. There are also some downsides to the trial itself, but I will wait to worry about those until I find out if I am actually in the trial.
The GSK-B inhibitor trial is at MDA. However, it is not through the Melanoma dept, it is through the Targeted Therapy dept. In order to get on the list for the trial I have to meet with them. Obviously, I will do that. However, I just wish I could have done that when I was down there last week! Quite honestly, this is the very best option for me. The GSK is a b-raf inhibitor, I don't have to transfer my care and we can stay where we are familiar. Please, please pray that this will work out. At this time there are 10 on the list for this trial. Knowing, my luck I will be 11 and there will only be 10 spots. So, it would be fab if this would work out.
All of it is a wait and see game. I hate those kind of games.
back to school
1 week ago