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.

13 comments:

Christy said...

Your attitude amazes me. You are a much better person than I am. Good luck friend. I hope you get into the trial you really want. As always, I am thinking of you and wishing you nothing but the best.

Evansmom said...

Sending many positive thoughts your way.

Lindsay said...

You are so strong! I will continue to pray for that strength! I will always keep your family in my prayers!

Anonymous said...

Heather,
I have been followign your blog and praying for you for over a year now. You are truly an inspiration and a fighter through and through. Stay strong girl. You CAN beat this beast.
-Brenda (Reno, NV)

Rachel said...

Oh Heather, my heart is breaking. I honestly just thought your scans would come back fine. I am sorry to read that is not the case. However, I admire your strength and courage. You are an amazing woman.

Please know that I will continue to pray for you. I will be here, praying and watching you fight another battle that I so wish you did not have to come upon.

How about a blog community fund raiser??? Through a lot of blogs... we can get the word out there. You tell me if you are up for it and I will help spread the word! I've come to find that if you put a lot of bloggers up to a task, it can be done.

Me said...

You are fabulous!

There are tons of websites that offer ideas and guidelines on fundraising, which now that I think of it, I am sure you are already aware.

I have and will continue to pray for you and your family.

McKt said...

So glad to read more details of how you are going to attack this head on.

I have been studying James lately. 1:12 says - "Blessed is the man who remains steadfast under trial for when he has stood the test he will receive the crown of life, which God promises to all who love him."

The more I read it in the context of everything else James says the more I believe he means this whole life is the "test." God must trust you much to know you will remain steadfast to Him through so a huge challenge.

Praying.

Laura said...

Your strength is so encouraging. I find myself discourage with my poor simple life and then I read your blog and I just feel ashamed of myself. Thank you for putting things in perspective for me.
Anything I can do to help you I will...you just say the word. I'll be thinking of fundraising ideas; I know there are a lot of blogs out there doing these things, so hopefully we can all come up with a way to help your family with these costs. All my love!

Brandi said...

Check out http://especiallyheather.com
I think she put up something up on her blog where people could give a donation online.

Shana said...

You are strong!!!You can do this! behind you every step of the way!!!

Heather in Texas said...

You might want to check out Moffitt Cancer Center in Tampa, Florida. They are one of the top 3 centers and are affiliated with Univeristy of South Florida. I worked there for 5 years and they are amazing.

Anonymous said...

Hi Heather- I can only imagine how your mind must be racing right now. You might also consider contacting Dr. Steven Rosenberg's team about their melanoma clinical trials at the National Institute of Health outside DC. He is world-reknowned for his research and treatments for advanced melanoma, an awesome doctor and his staff is the best. I believe June Kryk is the lead clinical research nurse. And when you participate in a trial there all of your care and hospital, labs etc are completely paid for. Here is a link:
http://bethesdatrials.cancer.gov/investigator-profiles/default.aspx?investigatorid=84
or google him. Sending all the best wishes in the world to you and your family!! Stay strong- luv, someone who is fighting too

Evansmom said...

Check out my blog. I left some sunshine for you!

 
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