Friday, February 19, 2010

Check, Check, and Not Quite

I heard back from the nurse at Vanderbilt, which is the cancer center in Nashville. I have an appointment scheduled with them for March 1st at 2pm. It actually works out perfectly. Odd, right? I know, so maybe this is a sign. We will have to fly out of KC each time because it is a third of the cost of where we usually fly out of. Luckily, my folks aren't to far, my sister is not to far, and my BFF is pretty close too. So, we have lots of option for babysitters:) Especially this summer when Aunt A is off:) Hint, hint:)

Anyway, we will head to KC on Sunday because we had already planned a night at Great Wolf Lodge as our Valentine's Day present for the kids. Our kids don't need more toys, but we can never get enough family time! So we will do that on Sunday, on Monday my folks will meet us and pick up the kids, we will drive to the airport. We will fly in to Nashville, take a cab to the Cancer Center, meet with the Dr, fly out that evening then go to my parents house to stay the night. See, it's working out.

At the appt. they will do a Gnome test to make sure I qualify and La Roche (the company that makes the RO5 trial drug) will also do their own testing to make sure that I am, in fact, B-Raf positive. The Gnome test takes about 8 days to get back. In the meantime, we just wait.

If I qualify we will make another trip down to Nashville to get started on the trial. The trial requires about a 20 day stay in Nashville because I will have lots of blood drawn I will be hospitalized a few of those days, however, I shouldn't be to sick. They just have to really monitor my diet those first 20 days. By monitoring, I mean make sure I don't drink any Diet Pepsi. I know, shoot me now right?! However, I did it while on Biochemotherapy, and that was by choice, so I know I can do it on this. I think I may be able to drink the Caffeine Free, which isn't the same, but it will work. I don't necessarily drink it for the Caffeine, I just love the taste!

We are hoping (and praying) for several things right now. One, that by the time we find out that I qualify, that there will still be a spot for me. Two, that I won't be extremely grouchy from no caffeine! And three, that with the help and support of my family, that over those 20 days some (or several) different people will be able to bring the kids down to Nashville and stay with them (and us) while I am doing all of this. I do NOT want to leave the kids for that long. Quite honestly, I'm not sure I can. So, since the flights are so cheap, we are hoping that after we get this all figured out we can set up a schedule so that they can be with us. At this point I am not going to stress out about that. No sense worrying about that if I don't even get in to the trial!

I am also waiting on an appt from MD Anderson for the GSK-B inhibitor trial. For some reason they are taking their sweet time in scheduling me.

I am truly putting all my faith in God. I know that He has His reasons for all of this. What ever is supposed to happen will happen. However, I am not above pushing them along:)

Please continue to pray. Some days this fight gets so old. I have my good days and I have my bad days. But, no matter what kind of day it is, when my beautiful 2 year old and my handsome 4 year old give me one of their great big bear hugs and slobbery kisses, I can't help but dig in my heels and fight a little harder. Thank you K and E for making your Mama fight a little harder. Without you I'm not sure I could do it. I love you both.

Thursday, February 18, 2010


**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 Cody 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 Kyler. 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.


One of my dear friends suggested becoming an "Associate Partner" for Amazon. In other words, every time you need to do a little shopping on Amazon, click on the link over there on the left side of my blog. All of the proceeds will go towards my medical expenses. I thank you in advance for your support:)

Monday, February 15, 2010

More Info

I realize my last post was not very explanatory. At that time I was a COMPLETE mess. I couldn't even think about my diagnosis. Nor could I think about the next step. I was completely and totally overwhelmed. Now that I am home and have been able to calm down, think, and hug my kids, my boxing gloves are back on. I am in research mode.

The study/studies that my oncologist would like me in are trials that focus on attacking the BRAF gene mutation. In December, I had blood tests done to see if I contained the BRAF mutation. I did. BRAF is a protein that plays a major role in the survival and growth of cancer cells and is mutated in a majority of patients with melanoma.

At this time there are 4-5 trials that are focusing on attacking the BRAF mutation for patients with melanoma. I have made several phone calls today, but for various reasons was unable to get ahold of anyone. I am hoping that I get return phone calls tomorrow.

I am ok with participating in a trial. The difficult part will be the cost. We are still waiting to hear if insurance will cover the cost or not. At this point we do not have any other options. There are only 7 FDA approved drugs for melanoma. I have tried 5 of them. The remaining two are not as effective as the BRAF trials are. So, whether or not insurance covers them, I will have to participate in one. So, if anyone has any good ideas for fundraisers please share. A fundraiser will probably have to take place in the near future.

Here are the trials that we are looking in to:
AZD6244 The bad part about this trial is the dosage starts out low, and it is combined with Diacarbizine, which I have already been on.
PLX4032 name has since been changed to RO5185426 This is the one that I really want to get in to. I am willing to go where ever I need to to make that possible.
GSK B Inhibitor This trial is at MD Anderson and will be starting in 3-4 weeks. They are only given 60 slots for the whole campus, I will find out this week (hopefully) if I can get in.
If I can not get in to any of those trials, the next best option is Tesetaxal which is also at MD Anderson.

If you want to know more about those drugs, click on the names and you can read some more. Most have few side effects, or at least not nearly as many as the biochemotherapy (thank goodness!). I should still be able to take care of the kids and do things, which, let's be honest, that is what I want. There are many other trials, but given my circumstances, these are the best options for me. Where we live does not have any options. At some point we will probably have to consider moving to some place that has a better cancer center.

The trials that we are looking at are nothing like what I have participated in in the past. They are pills. In other words, we (or just I) will fly to Houston, take a pill in the Dr office, and go home. We will be looking in to Corporate Angels and Ground Angels again. These are two wonderful organizations that offer free flights (Corporate Angels) to Houston for cancer patients. Ground Angels offer free rides for cancer patients. During Biochemotherapy we really utilized these services. The bad part is that Corporate Angels is now a 3 hour drive from our home. However, it beats the 11 hour drive that we have been making! However, if I end up participating in a trial not in Houston, the cost of travel will come out of our own pockets. I am currently looking at a few trials at Sloan-Kettering in New York, NY.

So many of you have asked how you can help. Fundraising ideas would be great. We discovered from the last (stupid) round of chemo that gift cards to restaurants and food (especially food we could put in the freezer for later) were quite possibly the best gifts ever!! I don't eat much on chemo, however, my husband feels like he needs too!

The outpouring of love, prayers, comments, emails, and phone calls has been overwhelming and so greatly appreciated. I realize that God knows that I am one tough cookie. He knows that I am a fighter. But he apparently forgot that I can also be a total bitch. He has certainly heard a few choice words these past few days. But, I am getting over it. It's not his fault. Well, not totally his fault. This is just my life. This battle will be constant. I have a very aggressive form of cancer. Recurrence is simply going to be a fact of life for me. Do I like it? Hell no! But, I was not given a choice in the matter. So, until some great man or woman finds a cure all for melanoma I will simply keep on fighting. No if, ands, or buts. I will fight and I will fight like hell. No question.

Please, please keep praying. I know so many of you out there are rooting for me and praying for me. I will never, ever be able to express how grateful I am for those simple things. I do believe that God is listening. For example, I really wanted to have repeat PET scans in January, but, for whatever reason, that did not happen. If we would of had them in January, more than likely this tiny little spot would not have shown up. Therefore, we would not have returned for 3 more months. God only knows how much it would of spread by that time. Scary, right?! See, so even though my cancer did come back, it could of been so much worse.
Blog Makeovers by Tara