Sunday, February 28, 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 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.

Monday, February 15, 2010

The Results Are In

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.

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.

Friday, February 12, 2010

The results

Today we find out the results from not only my scans, but also from a dear friend's biopsy. I think that is why I haven't freaked out to much about mine. I have been freaking out about hers to much!


She was having some tingling in her hand for a few days, and woke up one day and her whole hand was swollen. She was started on steroids and antibotics, but nothing helped. She had a mass the size of a marble removed on Wednesday and the pathology from that should be back on Friday.

Friday, the same day that I will find out my results. Pretty sure I am not strong enough to handle both of us having cancer. She is like a sister to me. I love her and I love her children. She is strong. Very strong. But, no young mama should have to go though this. No one should have to go through this. Cancer is stupid. And cancer sucks monkey balls! (My new fav saying, BTW)

Whenever I think about my cancer returning it's like my stomach just drops to the ground. It's like riding on a roller coaster. This journey has been like riding on a roller coaster. Have I ever told you that I HATE roller coasters?!! Seriously, not a huge fan. Especially now! My life is enough of a roller coaster, I certainly don't need to ride on a real one!

For some reason I feel really confident that the cancer has not returned. Not sure why. As you know, I am not overly positive, nor overly negative, I get enough of each from my MIL and Mother. I try to be the level headed one. The right down the middle gal. I know the what ifs and the what nows and I am prepared to ask them. But, I am secretly hoping that I won't even have to. I know that the chances of the cancer returning is great. But, like Aunt A loves to say, someone has to be in the 13%, why not Heather. So, from now on, that is my new fav number and my new motto. I shall be in that 13%. Why not? I deserve it. My life is finally returning to normal. My life is great, quite honestly. I am a normal mom.

In fact, the other day I was talking to some moms at K's preschool and I told them that I couldn't be there for the V Day party, but was willing to bake whatever they needed me to. I explained that I was returning to Houston for my follow up PET and MRI. They looked at me like I was crazy and asked, you're doing what. They had no idea I had cancer and had been going through all of this. Considering, I have been through hell and back, it is a wonderful compliment to hear that they had no idea. They also referred to me as supermom, so that felt pretty good too:)

My Dr appt tomorrow is around 2:30 and we are heading home right afterwards. I will not be able to update on here, but I will post an update on Facebook as soon as I can (I can do that from my phone!). If I do not have you on facebook, but you would like to be added, leave me a comment with your name or with your email address and I will try to figure out how to add you as a friend, from my phone. Could be interesting!

Monday, February 8, 2010

Prayer Request

On Wednesday (2/10/10) we leave for MD Anderson for my 3 month follow up visit. I have a PET scan and an MRI scheduled for Thursday and an appt with my oncologist on Friday.




I am fairly certain that the scans will be clear, however, you just never know. We are approaching that 9 month mark. For those of you that don't know, the average remission time with the chemo that I went through is 9 months. 9 months is May. However, it certainly doesn't feel like 9 months is almost here. I would like to start the 9 month count from when my incision is all healed and since I am still waiting on that, technically, 9 months hasn't started, right? Ok, maybe not, but that is the way I would like to think of it!



So, if you could say a few extra prayers these next few nights for me that would be fabulous.:)