Sorry it’s been a while since an update. Got a lot going on in my crazy life. Got back from Houston last week. Most recent results were not what I wanted. Good thing: tumors are down 26% since I started the trial in April. Bad news: They show 3% growth since last scans. 3% is not that much and the doctor even said it’s not really measurable, but it’s still an increase and I hate it!!! I want the tumors to be gone! So they are keeping me on my regular dose of the BRAF and this past Monday, Sept 20th, I started 1mg of the MEK pill. We are hoping the combo of the two will work together and start shrinking the tumors again. The MEK is the first clinical trial I was on. The one that broke me out so bad and I swelled up like a balloon. So I was worried about starting it again. BUT, it’s such a low dose my clinical nurse said they have not seen anyone with a rash. Thank goodness!! That was absolutely horrible! So that’s where we currently are. I go back on Oct 13th and 14th for check ups. I see the dermatologist this time. I have a mole on my leg that has changed and I am wanting them to look at it. Other than always being tired and not sleeping at night, I’m doing okay. Brayden’s first football game is tomorrow!! GO COWBOYS!! I’m so excited but nervous. I’m always scared he’s gonna get hurt. He needs some meat on his bones!!! LOL

CCity Record 8-11-10

2010 Mitchell County Relay for Life

Just wanted to share the video of my speech. :-D

http://www.youtube.com/watch?v=v3G9vgBRd6w

And the results are in!

AND THEY ARE AWESOME!!! No tumors have grown. Again some have shrunk and others are stable. Meds are still working. I'm telling you I was so worried about the results. It never gets any easier. So I just continue taking the medicine and hope and pray it keeps working. Right now Im scheduled to have scans again on September 16th. That is if the company that makes the meds doesn't ask me to have them early again. I'm feeling good, and couldn't be doing better! I'm super excited and am so blessed to have such an awesome support system. Life couldn't be going any better. ;-D

Wating Waiting Waiting....

Okay, scans are done!!!!!!!!!!!!!!!! Now the long wait until Thursday for results!!!

It's that time again!!

Yep, scan and results time AGAIN! I've gotta go here in about an hour to start getting prepped for my scans. The scans wouldn't be so dang bad if I didn't have to drink that NASTY barium. Man, that stuff is gross! So I got scans today and results will be Thursday. I see the doctor at 9am on Thursday. I'm always nervouse as heck when it's results time, but this time I'm really scared! I'm so scared to get bad news. I'm scared they are going to say the meds aren't working anymore and the tumors are growing again. My worst fear!! I try my best to stay positive, but sometimes it's really hard. Mom, Jamie and Brayden are with me this trip. David stayed back to work. He came with me the last trip. Jamie and Brayden are having fun swimming right now while me and mom rest before heading up to the hospital. I'm super excited about tomorrow. We got tickets to the Barnum and Bailey Circus that is at Reliant Stadium. Being from such a small town all we've ever been to are the little rinky dinky ones. I'm so excited to be able to take Brayden. If you go an 1.5 before show time you can go back and see all the animals. So of course were going!! I just hope Brayden does okay with the animals. Ever since his dog attack he's been really stand offish around any animals. So we all really excited about tomorrow. I'm hoping it will help put my mind at ease for a little while. As soon as I get results Thursday I will for sure let everyone know.

Latest News

So I'm running a little behind, but by now most of you know that I got more good news last week. Scans show some tumors have shrunk some more and the others are stable. So nothing is growing!!!!!!!!!!!!!!!!!!! Awesome Awesome Awesome!!! It was a long week in Houston but it was so worth getting the good results.

So I want everyone to click on this link and watch this video!! Donna lost her beautiful daughter Jaime to Melanoma in 2007. This is a PSA that she has done for the AAD and will air on TV, In Theaters........Donna did an awesome job and I want to share it with all of you. Tanning kills!! That's all there is to it!!!

http://www.aad.org/media/psa/index.html

Wonderful news!

So as many of you know by now I got wonderful news Thursday!!! Looks like the meds are working and the tumors on my lungs are shrinking!!! WOooooooooot!! The doctor showed us my scans from March and my current scans to show us the difference in the sizes of the tumors. I'm telling you I was so excited!!! For some reason i just didn't have a good feeling about this trial, but it proved me wrong. All the prayers have been answered. I ask for everyone to continue to pray the meds continue to work. If ya'll remember the last trial I was on worked for a little while but then the tumors started growing again. I was so excited I couldn't call everyone fast enough. lol My clinical nurse said my trips to see them will be less since I'm in the 3rd phase of the trial. That will help a lot because it's so expensive. Not much else is going on. Brayden just finished his 4th grade year. We got his scores back on his TAKS. He missed 3 on the reading and ZERO on the Math!! I'm so proud of him. Hope everyone has a fun, safe summer!! Remember to protect yourself and your kiddos from the sun!!!

A little ER visit

Had a little scare today. I think I scared myself more than anything. But when something new comes up, or I have some new symptom it just really freaks me out!! I started feeling yuck at work this afternoon. Came home for lunch and my heart felt like it was about to beat out of my chest. So I took my blood pressure and it was okay, but my heart rate was like 111. Well my heart rate goes up like that quit a bit, so it didn't bother me too much. Well I took my temp and it was 100.9!! Okay RED LIGHT!! Since day one I've been told if I have a temp I need to be looked at because temps usually mean infection somewhere, and thats a BIG no with someone in my condition. So I called my Clinical Nurse and she advised me to go to the ER to get checked out. Blood test were run, and x-rays were took. The PA that was working the ER called and talked to my nurse and went over everything. They decided I was okay to go home. My nurse in Houston said that it's probably just side effects of the pills I'm taking. But it was a good idea to go get checked out just in case. Kind of irritated me because I wasn't aware that a temp and the chills could be a side effect. If I would have known that I probably wouldn't have freaked out so much. Think my heart rate was a steady 140 when I went in. They filled me full of 2 bags of fluids and I was outta there. I've also been having a lot of aching in my legs, and this morning when I got out of bed I noticed it had went down to my feet. I'm thinking the aching is probably some type of the "chills". I dunno, I'm no doctor, but my legs are killing me and that's what I'm diagnosing myself with lol. Still not feeling to hot. Just took a warm bath to see if it would help my legs, but no luck. Fixing to get out the heating pad. I'll try anything. If anyone has any suggestions throw them my way.

Everything else is going okay. We leave Monday for Houston. I go for restaging and will find out that Thursday if the meds are working. Everyone keep their fingers, toes, arms.....everything crossed for me! I need good news!!

Quick Update

I just got home from Houston. Had a quick trip up there for Blood work, EKG and I saw the Clinical Nurse. Blood work and EKG were good. They upped my meds. I will be taking 3 twice a day, instead of 2 twice a day. That's it, everything is still the same. The 27th is the BIG DAY. That's when we find out if the meds are working. Just a quick update. I'm about to crawl in bed, gotta work tomorrow.

04/23/10

Got home Wednesday from Houston. I had to go for another wonderful 10 hour day of blood draws and EKG's. Everything went smoothly. I am off the MEC meds for a full two weeks. I have what they call a "clean out" period. I'm really hoping I start feeling better since I will be off the meds for the two weeks. Since I started the MEC meds I have had horrible headaches, yucky stomach, the WONDERFUL rash (which by the way is no way near as bad as it was the first time) and I have small sores in my mouth that is causing my throat to hurt. The rash is on my scalp again which is killing me!! It itches, hurts and is just annoying! I will fly back on Wednesday the 28th. I start appointments early Thursday morning. I have blood work, EKG, more blood work for clinical use, I see the Dermatologist and also see the doctor. Full day on Thursday. Then Friday I have an Echo. I hate Echo's, they are so uncomfortable and it kind of hurts because they press do dang hard on my chest. Then nothing else until Sunday morning. I will go in for more blood work and then I will fly home. So it's going to be another long stay in Houston. My step mom is going to be in Houston with her sisters during the same time. Her sister that I have mentioned in an earlier blog has finished her treatments for breast cancer. Woohoo!!!!!!!!!!!!!!!!!!!!!!!!!!! I was going to go spend time with them that Friday and Saturday, but I found out I have the Echo scheduled on Friday so that ruined our plans. So anyone there in Houston that wants to come entertain me Saturday, I will be at the Holiday Inn on Kirby LOL. On that Monday, May 3rd I will start talking the BRAF meds full time. Not sure yet what all the side affects are, but I will definately find out when I see the doctor. So everything is going okay, all except me feeling like crap all the time.

I also want to ask for everyone to keep the Rich family in your prayers. For those that don't know Bruce passed away this past weekend. I found out early Sunday morning and it just devistated me. He was the sweetest man and i am going to miss him and our talks. Everytime he would come in the office we would always spend time to update each other on how things were going, what treatments we were going through and let each other know of any new treatments we had heard about. It was so nice to talk to someone that was going through the same thing because we truely understood how each other felt. I didn't get to attend his funeral because I was stuck in Houston. Even though I was not there in person, my heart and my mind was with them.

Update

Just thought I'd give a little update. I started the new trial last Monday, April 5th. I was feeling good and everything was going smooth until Sunday. I think the meds finally hit me and I haven't felt good since. I have a pounding headache that will not go away. I've been nauseated and my whole body just feels kind of weak. All these are side effects of the drugs, so there's not much I can do about it. I have other meds to help with the nausea and headaches but they don't seem to work very well. I tried to go back to work yesterday but ended up coming home. I'm hoping all this will pass when my body gets used to the meds, I hope. Also so far no rash. I'm not sure if that's a good thing or a bad thing. I fly back into Houston on Sunday, to be there first thing monday for another long day of sitting in the little rooms so they can take blood and do EKG's for 10 hours. Not looking forward to it at all. I will be there until Wednesday. Other than that Brayden and David are doing wonderful. David is working his butt off and Brayden is soooooooooo ready for summer. Just wanted to give everyone a little update.

It's a go!!

Here goes clinical trial #2!! All my test looked okay so I get to start the trial. Bad thing is the therapy rooms are all booked for tomorrow so I can't start until Monday. It's too expensive to fly home and fly back so I'm stuck! David went home today, and mom flew in. Wish I could have gone home with him. I miss my Brayden :-( Gonna have to Skype him and David tonight. I love being able to see him and talk to him at the same time. So much better than just talking on the phone. Thanks so much Amie for introducing me to Skype. I know I'm a little behind, but I do live in Colorado City. Were always the last to know lol!! So I will go in Monday to start. All I gotta do is take pills. But the first day is gonna be a long day. Gotta stay there for 10 hours. They draw blood and take EKG's all day. It's a looooong day of just sitting there. Think the lap top is gonna go with me. One of the side effects of the drug is the horrible rash. I'm still clearing up from that crap and it's about to get bad again. I just hope it's not as bad as last time. Only time will tell. Everyone keep positive thoughts about this drug. It's gonna work!!!!! It has to work. My scans were as expected. The tumors have grown and there are new ones on my lungs. But it has not spread anywhere else, thank goodness. The CT scan also showed a big cyst on my left overy that they are wanting to send me to a Gyno up here to have it looked into further. He used one of those "doctor" terms while describing it. Pretty much said it needs to be looked at. Yay, wonderful. One more thing for me to stress about. I know it will all be okay, but until I know for sure I can't help but think about it. That's about it for now. Just wanted to give everyone a quick update. Hope everyone has a wonderful Easter!!!

Clinical Trial #2!!

It's been a while since I've updated so I thought I'd let everyone know what's been going on. I went back to Houston last week for a check up since my surgery. The surgeon said everything looks good and everything has healed up nicely. I saw my Oncologist also. Found out that the tumor they removed that's sitting in the lab is growing cancer cells "beautifully". Which is a good thing. So we have that there for future use(see my last post about the vaccine). She said my x-ray only showed 1 tumor had grown in size just a tiny bit. That really put my mind at ease. I made myself sick worrying that they were all growing and had doubled in size. I try not to think the worst, but I always do. In all my check ups went good. I got a call today from the clinical nurse. I have to be back in Houston Monday, so David and I are heading up there Sunday. I have to sign the consent to start the trial on Monday, then I have a full week of appointments. Scans, blood work, EKG's, eye check up.....all the "fun" stuff. Then Friday I will start taking the pills. They are a combonation of a MEC and BRAF inhibitor. So they are going to target two of the chains that come before it turns into cancer. That's my way to explain it haha!! I have to stay in Houston after that just in case I have a reaction to the meds. They really want me to stay the full 15 days, but of course they can't make me. After talking with her I decided to stay and if I feel okay and don't have any worries then I will come home for a couple days and then go back. David will be with me the first week, and my mom is going to fly up there for the second week. I'm so glad that we will be staying in a hotel and not the hospital. So I searched the internet all day looking for a cheap, but decent hotel. We got one that has a kitchenette in it so we can cook instead of eating out. Gotta go as cheap as we can. So that pretty much sums it up for now. Looks like Houston is gonna be my home for the next two weeks. I really wish it was summer so Brayden could go. I just really hate leaving him. Especially for that long. But I know he's being well taken care of while I'm gone. When I find out a little more about the trial I will share it with everyone. I'm really really REALLY praying it doesn't affect me very bad so I can work and lead a somewhat normal life.

Not so good day

So my day started out wonderfully until I checked the mail. Ugh, just one more thing to worry about. Okay here's the deal. The tumor they removed from my lungs is going to be kept in a lab and left to grow to produce more cancer cells. Once it get's to a certain point they will take the cells and make a vaccine out of it to put back in my body to help fight off the rest of the melanoma I have. I think that is cool as can be, but there is only a 50% chance the cells will grow. I will not know for about 6 weeks if it works. I thought that was going to be it. Oh no. If the cells grow I will be put in the hospital for 14 days and go through Chemo and IL2 plus the injections of the vaccine they will create. Were talking MAJOR major treatments here! This freaks me out! The IL2 is what I did last year where I was in the hospital for the high dose injections that made me so sick. It kicked my butt BAD! To have to go through this on to of more chemo, MAN scares the crap out of me! I will do what I have to do to get better, but just the thought of having to do high dose IL2 again really really stresses me out. I don't even know for sure if I have to do this yet until we get the results to see if the cancer cells grow, but I feel like this is never going to get easier. Anyways that my wonderful news for the day. I hope and pray the cancer cells do grow and I'm able to do this, but I really REaLLY could do without having to go through the IL2 again.

Surgery update

Sorry it's taken me so long to update this thing, I just haven't been up to it. As most of you know I had my surgery last Wednesday. They went in and removed a portion of my right lung where the biggest tumor was. Found out after surgery they removed about a lemon size piece! Yeah, way bigger than I was expecting. Surgery went good. I had so much support there and back home that I just knew everything was going to turn out okay. All of my last surgeries they knocked me out before I got to the surgery room. Not this time. I had to move from my bed up onto the surgery table then out I went. Next think I know I'm waking up to David coming towards me. I have to small incisions, one under my right arm and the other one on my upper back. They are about an inch or two long and neither one has bothered me a bit. Then I have a spot where the drain tube was inserted on my side that's another story. I think I had the grand daddy of all drain tubes. It hurt in the hospital and it still hurts!! I got out of the hospital the day after surgery. I had no air leakage and nothing draining so I was outta there! We of course stayed one more night at the hotel, just in case, and plus there was no way I was gonna make the long drive home that day. We got home Friday and I've just been resting ever since. Recovering is soooooooo much easier this time around. I still have nightmares about my last surgery, drain tubes, pain pumps....man that was awful! Seems like every day I'm doing a lot better. I still feel pressure in my chest, but it's more sore than pain. I'm hoping to get back to work soon. I hate, hate being stuck in this house. I can't drive for two weeks, and I'm not to pick anything heavy up. They said I should be back to normal in about 6 weeks. I'm waitin to hear back from Nydia, my nurse to see when I can go back to get started on the next trial. The trial is a lot like what I was one. It just consist of taking pills this time though, no chemo YAY! It also targets the BRAF mutation that I have. Side affects are nothing like the last trial. They said sluggishness is the main thing. So no rash, which by the way I'm still working on getting to go away, and no swelling up like a balloon. I actually have knuckles and ankles again lol So as of right now were waiting to get into a new trial. I know it's going to take time to find the right meds, but I know in my heart we will find it and it will keep my tumors from getting any bigger and also keep the cancer from spreading anywhere else. And I'm never gonna give up on a cure being found. Again I want to thank everyone for the continueous support and prayers. Without all of you I don't know how my family and I would make it through this.

On a side note, MY BABY IS TURNING 10 NEXT WEEK!!!!

Another Surgery.....

Okay here's the latest update. My scans showed that one of the tumors on my lungs has POSSIBLY grown in size. All the others are stable and have not changed at all. So in order to find out what's going on with that one tumor they are going to have to go in and cut it out. They are not sure if it actually grew or if it's just inflamed. I go on Feb 1st to meet with a Thorasic Surgeon for my consultation. I will find out then when I will have surgery and what the surgery will consist of. I hoping and praying it can just be done with a scope. I really, really don't want to be cut open, that just freaks me out! What they will do is biopsy the tumor to find out what's going on with it. If it comes back with cancer cells in it that means it has grown. If it comes back clear then that means it is inflamed. If it has grown then what they will do is take the cancer cells, leave them in the lab and let them grow. Then they will make a vaccine out of it and inject it back into my body to help fight off the other tumors on my lungs. I've heard of this procedure before and think it's neat how they can do that. The percentage of it working is 50/50, which when your dealing with cancer that's a high percentage. While the cancer cells are growing they will start me on another clinical trial. It is similar to the one I was on except the side affects are not as severe as what I'm fighting now. Good thing is the cliniccal nurse I have now is also over this trial, so she's not getting rid of me yet LOL IF it comes back where the tumor was just inflamed then that means the trial I was on, was working because all the other tumors are stable and did not grow. So they will start me back on the trial. So pretty much we don't know the next step until after I have have the surgery and they test the tumor. As of right now I am not on any treatments. They have to stop it until they find out what's going on. I came home with 3 more bottles of pills YAY lol!!! I'm telling you I have a mini pharmacy going on here lol. They gave me a pill for my magnesium because it's low, then they gave me "water pills" to take to try and get some of this water weight off because I am swollen from head to toe!! I have cankles and no elbows HAHA! I know, not funny but I gotta laugh about it sometimes. Then I have to take potassium pills. I have no clue how I'm going to remember when to take all this pills everyday. Some I have to eat with, others I don't. So confusing!!!

I think that's about it. Like I had said it's not the best news, but then again it could be worse. Really I just have that one stubborn little tumor giving us problems. When we find out what's going on with it, then we can proceed on. Its awesome that the other tumors are stable and that it has not spread anywhere else.

On a brigher note I only have 3 days, 3 DAYS till I fly out to California!!!! I need this get away so bad!!!!!!!!! I get to get on a plane and head somewhere other than Houston! I get to go see my very best childhood friend and celebrate her big 30 with her, and then we get to go watch the Ellen show, I'm beyond freaking out I actually get to do this! Danelle & Ellen here I come!!!!!!