GREAT NEWS!

Hey!
Sorry I haven't updated my info in a while. But I do have great news to tell! ! ! !
Last time when I was down here I met with Dr. F before I left. We went over my blood work and the PETscan results. Drum Roll.........................

One of my tumors has gotten smaller! and two have gone down in activity level! So it is working! ! ! I am so happy! It was a great day to hear the news!

I have been taking the medicine everyday. I having been working and spending time with family and friends. I have been feeling pretty good. The only side effect is that I get tired right in the middle of the day. Sometimes its so bad that if I don't lay down I feel really sick. But I am doing well.

I am back down in Houston now. Only till Tuesday. I have appointments all day long today. Scans and blood work. Then tomorrow I will be seeing the doctor to go over the results. They will decide to either up my dosage or not. I will know if its still shrinking or any new changes. Its a long day but I like making it all in a day or two. So I will be home on Tuesday and ready to eat some Turkey!

I will update again after I see the doctor tomorrow.
Thank you for all your thoughts and prayers! its working!

LOVE~

Update from Houston

Hello! ! !

So I am coming home on Thursday! I am so excited! My plane gets to STL at 5:40pm.

Everything has been going pretty good. I get my PET scan results that I had done last week and the second biopsy results all on Thursday morning. I have an appointment with Dr. F at 8:30am. Then fly out around 3:30pm. So excited about all that.

I miss everyone! I am so thankful for all your thoughts and prayers. I have been writting a whole lot. Love the weather down here! Thankful for Debbie and Jamie for coming to hang out. Kayla and Brandon have been awesome enough to let me hang out with them.

I will be coming home for two weeks. Then I have to come back down for 3 days in two weeks. Then back home for 3 weeks. Then we will go from there. So ready to go back to work.

Love

Day one of treatment. . . over!

Hey hey hey!

So first of all Britney Spears was freakin' amazing! I loved it. She didn't pull me up on stage. . . Maybe next time! Kayla and I were dancing the whole time! My dream job would be to be Britney's back up dancer and go on tour with her! It was awesome! ! ! ! !

So I had my first day of treatment yesterday. Before treatment I had to be at the hospital at 8am for a small out patient surgery.They took a small noodle size piece out of a tumor under my right arm. I will do this again in 8 days or so. Hopefully we will see change in the tumor and know if the treatment is working.

After that I then went to treatment. I took four pills. That was it. Well kinda. After I took the medicine then it was EKG and blood work every hour on the hour.I was there from 1:00pm till midnight. Long day. My port didn't want to work the whole time but I am thankful I have it.

Today I took the medicine at 5am. You have to fast one hour before and two hours after. That way I could eat breakfast and dinner around normal times. You take the medicine 12 hous apart.I am feeling ok. Pretty tired and an upset stomach but that's it.So that's pretty good!

Miss and love you all

Love

09-09-09 long day

Hey all! So this morning I had a wake up call for 6:30am. Then took the shuttle from the hotel to the hospital. I had an EKG this morning, then blood work, then an echocardiogram, then a test for HPV, then a PET scan that doesn't start till 4:30pm. If I get called on time then I will be done by 7:30pm. Worst part about it is that you can't eat or drink for six hours before the scan. I got to Houston yesterday around noon then went to the hotel and then straight to the hospital. Had blood work done and had to sign my agreement formally saying I was ok to start the new treatment. Afterwards my friend, Kayla picked me up and took me to see her new place and to dinner.Everyone is being really nice down here. Like I said it has been a long day but not too bad. Tomorrow I have a chest PA and LAT, I don't know what that is and then I have a CT scan. That all doesn't start till 3:50pm. So I will be sleeping in tomorrow! I will keep updating! Writing has helped pass the time! We will see how it goes. . .

Love

Phase one trial treatment. . BRAF

HEY hey Hey!

So I am heading to Houston on Tuesday of next week. Once I get there it will be all testing. I then start the official treatment on Monday. The treatment is called BRAF. It is a targeted cell therapy. The idea is to stop the protein called BRAF from making more cancer cells. The treatment comes in cycles of three weeks and they are all back to back. So the first cycle I have to be there every day. The second cycle I have to be there on day one and day eight. So basically I am going to be down there for almost five weeks. Only four other people in the world have gone through the treatment. They are on dose three or four by now. Oh and they are from Australia. So there will be two of us doing the treatment in Houston and there will be another two in Nashville. 

While I am down in Houston I have decided that I am going to write. My whole story. The good, bad, and the ugly. I will still blog and email. But lets face it I will have a lot of time on my hands. Hopefully I won't be too sick. 

I am going to see Britney Spears on Sept. 16th with Kayla! I am so excited! I think she is going to call me up on stage! A girl can wish!

I want to thank everyone for their thoughts and prayers! I think this is going to be a good thing. I am a little nervous but ready at the same time!

I will try to blog every day and keep you all updated.

Again thank you all

Love~

Back in Houston

I got into Houston on Wednesday. The flight was good and traveling went much smoother this time.
I had doctor's apts. this morning and this afternoon. I have heard so much today. I am really tired. But I am trying to make a decision.
I will let everyone know as soon as I decide and tell my close family.
I am going to blog on Monday and update you all on the news.

All is good.
Everything happens for a reason.

LOVE~

Speech

Told you guys I would write soon. . . haha

I forgot to mention the Relay for Life walk I went to in St. Charles, MO. My aunt Lynn lives over there and plays a huge role in putting it on. I went last year right after my first surgery and had a great time. (except for the down poor for the 10min. it lasted) So this year my aunt asked if I would like to go again. I was so game!

I don't know if you guys know but I like to talk, maybe to much. I could talk to a tree as some people say. Well I had said something a while back about wanting to do some public speaking/motivational speaking. I don't know really how my aunt did it but she called me a couple of weeks before the walk and asked if I wanted to speak at it. I was so excited. I never was nervous. I was to talk about fighting back and that was really all I was told. 

I loved it! I thought it went pretty well. Some people came up to me afterwards and wanted to talk. That was a pretty cool feeling. It let me meet more wonderful people who maybe I wouldn't have talked to there that night. It also made me want to think about how to do such a thing more often. I would love to speak not only at those type of functions but also at high schools, churches, or where ever. It was an awesome feeling.

If anyone has any ideas of how to get more involved in to something like that please let me know!

Love~

Its Been Too Long

Hey everyone. . . 

Sorry it has been a while. I wanted to let everyone know what has been going on since I came home from Houston. 

First the Poker Run was so much fun! Everyone had a great time! It was so beautiful outside the whole day! I am so thankful for everyone who came. All of the people who helped put it on did a really great job. I was just glad to get to tell everyone under one roof, thank you!

I met with Dr. N after I got back. Talked with him about what Houston had said (IL-2 if my cancer had changed and gotten bigger or to wait.) It has not changed from when I found out it came back (end of April) till the PET scan they did down in Houston (June). So Houston wanted to wait two months and recheck it again when the two months were up. I understand why they wanted to wait but it has been hard to not really do anything about it. So today I went back and saw the oncologist in St. Louis. He agrees with the treatment of IL-2. St. Louis does not offer it though. So I would have to go to Houston to do the treatment. The oncologist in St. Louis (Dr. L) said that he thinks that it is a great plan. However, when I do go back down to Houston there are steps I am going to take. 

1. Have the PET scan and brain scan.

2. If the scan shows that it has changed for the worse, start IL-2.

3. If the scan shows no change then ask about options of surgery. 

I agree with this plan. It is a combination from talking with every doctor involved. I think that IL-2 is what is best for me. I am a great candidate for it. But I am not comfortable with going down there and finding out there is no change and waiting another two months. I will be really happy if there is no change because that means that my body is fighting on its own without any medicine. But I want to do something active now. 

I leave for Houston again on August 9. I have blood work and all the scans done on the 10th. Then meet with the doctor on the 11th to review my results. Then we will make the call after we find out the news. 

Sorry its been so long. I am doing good. Summer is flying by and I am just trying to spend it with everyone. 

Promise to update soon.

Love~

Poker Run

Hey~

The poker run is on June 20th. Starting at Dales Harley Davidson at 11:00a.m.

All Bikes and Cars are Welcome! ! ! ! ! !

Sign Up: 11:00a.m. -12:00
Last bike in @ Bull-eze: 5:00p.m.
Entry Fee: $20 Single/$25 Double

Bull-eze: 5:00p.m. - 12:00

COME JOIN THE FUN!!
FOOD, ENTERTAINMENT, SILENT AUCTION, RAFFLE & 50/50

any questions please ask.
Love~

Waiting for some news

I am waiting to hear from Houston. They should call today and tell me the results of the PET scan. It should say if the cancer has progressed or not. I called at 11:45 and left a message to be called back.
Then I will know for sure if I am doing the IL-2 treatment.
I just hope they call soon.
I will keep you all updated as soon as I hear anything.

Love~

Another long day. . . .

My mom and I went to the hospital today. I had the PET scan done finally. We arrived at the hospital at around 2:15. My appointment was for 3:30. I didn't get called back till 4:30. But I got it done.
We are flying out of Houston at 7:00pm and will arrive in Stl at 9:10.
I should know the results by Monday or Tuesday. That will then give us the okay to go forward with the IL-2 treatment or not.
So I am going to be home for the Poker Run! ! ! ! I am so excited! Everyone should come on out! It is JUNE 20th~ if you have any questions you can call or wait for an update later on this week.

LOVE~

Pleased with the Place

Yesterday was pretty long. I had to be there by 12. Then had to get blood work done. Then found out that the doctor was running behind. So my mom and I went and had lunch to pass some time. Finally met with the doctor around 3:30.
Really liked her and the doctor who is her assistant. A lot of information was thrown at us at once. There is a treatment called IL-2. That is the shortend name for it.
I have to have another PET scan before we decide on the treatment for sure. I am either going to have the PET scan here in Tx today or I will have it done back home and then just have the results faxed down here. I could start the treament as soon as the 29th of this month.
So hopefully I will have the scan done today. Like I said if not then I will have it done back home. My mom and I will be flying out tomorrow.

Love~

Arrived in Houston

Hey!
we made it! it was a fun trip down here. Lets just say we have learned some new traveling tips. I will let you know when I cool off. . . Ha ha

All is well. We are leaving this morning to go and meet with the doctor. We will be talking about treatment options and a plan. I am excited and nervous.

Again I can't thank you all enough for your thoughts and words. I am so blessed~

Will update later today.

Love~

M.D. Anderson Update

So.....

Last week I asked my mom a question. I think that question freaked her out.

This week there wasn't anything new going on. We were just waiting to go June 9th to the Oncologist again in STL. Then we found out I will see the surgen on June 11th. So an appointment on the 9th and on the 11th.

My mom started thinking it can't hurt to be productive. So she contacted M.D. Anderson to see if they would see me. We had an offical no from New York and an offical no from Maryland. Both of those doctors said that M.D. Anderson would say the same thing.

While we were waiting for next week to come, why not get an offical yes or no from M.D. Anderson themselves. So my mom had all my information faxed down to Houston. They recieved it yesterday. My mom then told me what was going on. I didn't get to emotionally attached because I didn't expect to hear back from them quickly.

I was wrong. I heard from them today! I have an appointment to be seen on June 11, 2009. So quick. So tonight I am looking up flights and based off that is when I will head down there. My mom is going to go with me.

I will give an update after I find out for sure the flight days and such.
Thank you again for all your thoughts and prayers!
Love~

The Dinner

Thank you to everyone: For coming and those who helped.

The night was so beautiful. I was praying it wouldn't rain. I got my pray answered. It was a wonderful evening. A little over 50 guests attended. The food was to die for. I mean it was so good. I wanted to lick my fingers and plate, but didn't. Everyone was in good spirits.

I couldn't have asked for a better night. Thank you to everyone who helped and was involved. You all know who you are! I am thankful.

love~

Poker Run

June 20th in Mt. Vernon
Poker Run
Starting at Dales Harley Davidson

I will know more about it later. I will keep you all up dated. I really want to be through with surgery so I can ride my own Buell.

It should be fun
Love~

Progressive Dinner

Tonight is a going to be a fun night. I am excited! There is going to be a progressive dinner at Sherwood on the Lake.
$100 donation per couple ($50 for singles)
Door prizes and Silent Auction

Hosted by The Homes of:
Rob & Kristen Jacobs Wise: Appetizers and Cocktails served at 6:00
Joe & Beth Parente: Salad sereved at 7:00
Traves & Felicia Crabtree: Main course and dessert served at 8:00
Food & Wine donated by Von Jakob Vindyard, Pomona & Alto Pass, Il
(Owners Paul & Rhoda Jacobs)

I have a great group of friends here in Glen Carbon. I am very blessed. Thank you~

I want to say thank you to everyone for the comments! It means so much. I didn't write yesterday because I didn't hear from the doctor till almost 7p.m. Dr. N had called to let me know that New York is doing the same research as Maryland. Since both facilities are basically in the same phase of research I do not qualify for both Maryland and New York. They also said that all other top facilities are doing the same research, Adoptive Cell Thearpy.

The size of the remaining tumors are not big enough to qualify and the lab test I had done, HLA A2010, didn't qualify either.

So the next step is to see the oncologist in St. Louis, Mo. to get set up for surgery. Then check and analyze the tumors for mutation. I don't know if it is possible to have all five remaining tumors removed because of location and how deep they are. That is why I called today to get an appointment for the oncologist so he can get me into a surgeon.

I scheduled an appointment for June 9, 2008 at 1:00p.m. Yet I am trying to get in sooner. After surgery we will discuss further treatment. At this time it sounds like Chemo is the option.

Thanks to everyone again
Love

The First, its my story

Hey there Hey!

My name is Erin Bond. I am from Mt. Vernon, Illinois. I graduated from Rend Lake Junior College and Eastern Illinois University. I majored in Communication Studies with an emphasis in Public Relations. I now live in Glen Carbon. I love my job and my boss. I have great friends and family. I love my life and wouldn't change anything. . . well kinda

My story: First, I am ok. I hate talking about myself. But I love my friends and family and wanted to do this for them. March 2008 I found a mole on the back of my left thigh. I didn't think to much of it. But then it started getting bigger. I finally decided to do something about it and I made an appointment to see a dermatologist. With my crazy schedule, trying to graduate on time in May, and the doctors busy schedule I didn't have my appointment until May 27th, 2008. My dermatologist, Dr. N, saw the mole and said that he wanted to take it off that day. I knew by how fast it had grown that it couldn't be good. But I was glad it was off and all I could do now was wait for the news.

I was at work a week later at Eastern when I got the call. I went outside on my break to check my voicemail and Dr. N had left a message asking me to call him on his cell phone. He said he checked it twice and hated to tell me but it was melanoma. He said to call him at anytime and he would do anything to help me beat this. I was speechless. I told my boss I had to leave. Got in my car and cried all the way home. I had to stop my car on the way home because I was crying so hard. Then I had to call my family. Ahhhh it was hard. 

I then had a second meeting with Dr. N and discussing what my next step should be, surgery. It was decided I was going to Barns Jewish Hospital in St. Louis, Mo. to have the surgery. I was under the care of the chief surgeon of oncology, Dr. Moley. (I had to laugh when I heard that the doctor, who was going to be cutting on me, had a name so similar to what started all of this. I try to always see some light) I didn't have to have any skin graphing thanks to his magic. I say magic because he took a chunk, the size of a small football, out of my leg by just using extremely large stitches. 

June 20, 2008 I had skin removed on the back of my left thigh to make sure all the melanoma cells were gone. They also removed one lymph node in my groin on the left side. This was because if it were to spread the first place it would move to would be through the lymph nodes. So then I had to wait another week to get back those results. I am still at Eastern trying to finish up my final three college classes when I get the call. I was driving but I answered. It was the doctor from Barns Hospital. He said that the results from the biopsy showed a small tumor in the lymph node. I didn't cry, well till I got home. The doctor said I would have to have the rest of the lymph nodes in the left groin removed. He told me the risk factors: leg swelling that could last, draining tubes, infections, staples, and a walker. 

August 1st, 2008 I had the surgery. You learn a lot about your body when you go through something like this. I learned that there are lymph nodes closer to the surface and then there are also deeper ones. While I was under they took 13 surface lymph nodes and 1 deep lymph node. The one deep lymph node was then reported to have a small tumor in it. Therefore, the doctor decided to also take out the deep tissue lymph nodes while I was still out. I had a total of 26 lymph nodes removed. 

I was in the hospital for three days. I had a morphine drip for the first 36 hours that I pushed every 15 minutes. I had two draining tubes that came out of my left thigh. I also had close to 40 staples. My leg was so swollen. I learned how to walk again, using a walker. All I have to say is God has a sense of humor. But I made it. I always had friends and family there with me. I went home to recover and wait for the results. 6 out of the 26 lymph nodes were cancerous. It was time to see an oncologist and find out the next step. 

One oncologist was from St. Louis and one was from my hometown Mt. Vernon. I listened to both opinions. They basically said the same thing. We had gotten everything out during surgery but there could still be some cells throughout the body. Those cells could then start grouping together which would be bad.  So the next step was to start a treatment called interferon. To make sure the cancer didn't come back. Basically to boost the immune system. It was going to be a two phase treatment. The first phase was to do treatment Monday through Friday from 9:00a.m. to 2:00p.m. This phase was to last 4 weeks. Then the second phase was to give myself injections three times a week for 11 months. I decided that I would do the treatment in MV because thats where most of my family and friends were. I needed rides to treatment and such because it really made me feel sick. They all were awesome!

September 2008 I had surgery to have a port put in. The purpose of the port was so that my veins wouldn't collapse. Since the first phase was going to be done intravenously it made since to have it put in. I then started treatment sometime during the first week in September. It wasn't easy. The first day I got so sick. I was feverish with the aches. I was so nauseous. I just remember praying and asking God to please let me get through it. He answered my prayer. I did. I would wake up and have my mom take me to treatment, finish around 2:00 p.m., go eat if I felt up to it, then be taken home to fall asleep till I had to wake up and do it again. My friends and family had a benefit for me during the second week of treatment. It was so nice. I really just wanted to do it so that I could tell everyone thank you. Thanking them for the cards, flowers, prayers, words, and everything else. It was a great night. They raised over $6,000.  I was speechless. 

I then started the second phase. I moved to Glen Carbon, Il. to move on with my life. I didn't want it to stop me. It took me a while to be able to give myself the shot. I had my mom , my roommate's friend, my roommate, and my sister give me my shot before I could do it myself. I would give the shot right before bed so that I hopefully could sleep through all of the side effects. I could never tell if I would get them or not. Sometimes I would sleep through the night and other nights I would be laying in the bathroom floor. Its hard to talk about all that for a couple of reasons. I didn't want people to know how bad I was really feeling. My hair was thinning. I felt like I had a bad flew all the time. Then fell out one morning. I didn't want to worry my family or friends. It was just a really hard time.

In December 2008 before Christmas I had all these scans to make sure the cancer hadn't came back and the treatment was working. Great news! I was good! Everything was clear and looking good. It was a great present I had been praying for! Still doing the treatment and getting sick now and then but I was clear! I would go to my oncologist, Dr. O, once a month. This was just for blood work and to make sure everything was going like planned. 

In the beginning of April 2009 I found a not under my skin on my left arm. I didn't worry to much about it. A week later I had thought it had gotten bigger so I went to see Dr. O. He said that the only way to know was to have it removed. He didn't think it was anything but couldn't say 100% unless we took it out and had it checked. I asked when my next scans were scheduled and if it was soon enough to wait. I had scans scheduled every three months to make sure the cancer didn't come back. I was due for the scans. So we set it up for two weeks out. A week before the scan I found another lump in my neck. Smaller but you could still feel it. So I went to the appointment knowing of two lumps in my body. Praying that it was just a cyst. I finally got the news. It seemed to take forever.

The one lump in the arm showed up on the scan. The scan also showed one in my right leg and three on the back of my left shoulder that I could not feel. The one in the neck didn't but now I had found another. So I had two in the neck, three on the left shoulder, one in the left arm and one in the right leg. Total of seven. I could only feel three. So I was scheduled to have surgery to remove the one in the left arm and the bigger one of the two in the neck. I had two lumps removed and had to wait to get those results back. They both were cancerous. This suggested that all seven then would be as well. So I still have five tumors left in. All small in size.

I thought Dr. O was going to cry when he told me the news. He said it was bad news. He wasn't saying go home and lay down because I am only 23 but it wasn't good. The treatment didn't work. He said we have to find something better. The problem is that there isn't a lot of approved treatments for melanoma. Chemotherapy isn't effective on melanoma. The chances are 1 in 5. We want something with better chances. So the next option is to try and find studies and trials. I tried getting into the NIH, national institute of health, but didn't qualify. These studies are still in research stage so there are many different specific requirements to qualifier as a candidate. Now we are trying to get me in to Sloan Catering in New York. If that doesn't work M.D. Anderson in Texas is the another great hospital. I will do the Chemo if that is my only option but everyone is making sure that there aren't other options. There has to be but we just have to find it.

So there it is. . . where I am today. Waiting to hear from Dr. N tomorrow to see if I can go to New York or  M.D. Anderson.  

I love my friends and family. I wouldn't  have been able to get this far along with out all of you. There are so many people who have touched my life. I am so thankful for it all. Even the bad. I have tried to stay positive and strong. It is what it is and I just have to do what is best for me. I love my God and know that there is a reason for everything. I don't want this to define me as a person. God has his plan for me and I am walking beside him. 

Again thank you to everyone. 

Love~

May 18, 2009

Still recovering from a faaaabulous birthday weekend!