I apologize for not writing for so long, I have been going through a real tough time. Needless to say the Ipilimumad did not work and during the three months of it not working a new tumor grew in my abdomen and started affecting my life. I had to have surgery again this time cutting up and down my stomach. The recovery of this surgery was much more painful then the first. My family once again was wonderful in taking care of me and spending time with me.

I had a hard time recovering from this surgery. Once I was home I mostly stayed in bed for a month and I was getting sicker and sicker. My doctor wanted me to start the new treatment Braf but we couldn’t start it until I was heathy. I was getting so sick my doctor decided to put me in the hospital. In the hospital they got me on a good drug regiment that got me feeling much better.

After I got out of the hospital staying on the drug regiment I started feeling better and better so I was able to start my new treatment.

I started the Braf about three weeks ago. I am very hopeful about this treatment. The statistics for it working are much better then the other two treatment I have done. The particular drug I am on was not even available three months ago, very cutting edge :) I have scans next week to see if it is working 11/18. The good thing about this treatment is we don’t have to wait to do scans and we are going to get scans done frequently so getting a surprise large tumor won’t happen again. The treatment is in pill form. All I have to do is take two pills twice a day.

Lately I have been feeling really good. I can actually say I have been feeling normal. I don’t want to get my hopes up but I feel like this treatment is working. I feel better and stronger everyday.

Last Ipi Treatment

I had my last Ipi treatment last Thursday August 26th and made appointments for my scans. The treatment went well still no side effects and still feeling healthy and strong. I have MRI and CT scans on Thursday September 2nd and my PET scan is the next day on Friday. Then I have to wait a whole week for the results. I find out if this treatment worked on Thursday 9-9-10.

I have very mixed emotions on finding out if it worked. Of course I want to know but part of me wishes I had a couple more months of not knowing. I have liked this limbo of not knowing. I like that this treatment doesn't make me sick and I'm scared if the Ipi didn't work the next treatment could not be so nice.

I have prepared myself for all the different out comes. I have talked to my doctors and nurses and we all have agreed on a plan. If the Ipi works and my tumors have shrunk then I stay on the Ipi and go into remission for years and years!! If it didn't work and the tumors have stayed the same size or grown I will have surgery to remove the tumors. If the scans show new tumors then we try the aggressive treatment Braf.

Keep your fingers crossed for me and I'll let you know what the Scans say

What I am doing now

Deciding what to do first was one of the hardest things I've ever had to do. If you ask my family we had many many debates between Braf and Ipillumaud. The good thing was if one didn't work I could still do the other.

My choice was the Ipi (what we call it) Even though only 20% of Melanoma patients respond to this treatment, the people it works in, it works really really well and puts them in remission for a long time. With other treatments Melanoma tumors will shrink but will eventually start growing again and new tumors will grow. So since my tumors are still small and not life threatening I decided to go with the Ipi. This is not an FDA approved drug, so I had to enter a trial. The trial is twelve weeks, four infusions every three weeks. After the twelve weeks I get more scans done and find out if the treatment worked. It is very nerve racking not knowing but I am prepared with my next steps.

I am half way done. This treatment is nothing compared to the Biochemo. It is done in the doctors office and only takes about three hours. So far I have not had any side effects. I have six more weeks and then I get to find out if it is working.

Being in control of my treatment

From not knowing anything about Melanoma in the beginning, I have strived to get as much information as I can now. I learned after it was too late that Biochemotherapy is very controversial. Only twenty percent of Melanoma doctors agree with it. Most doctors recommend high dose ILK2. There is no going back but I have learned there is a whole community out there dealing with this horrible disease and other choices I can make in the future.

Doctors and drug companies are businesses just like everything else. They want to make money. Dr Minor wants to keep me has his patient so he only offers me only what is available to him. It is my responsibility to do what is best for me.

After the Biochemo Dr Minor tried to tell me what to do again. I was not going to let him do that again. I decided to get a second opinion on what I would do next. I went to UCSF med center and talked to the doctors there, they recommended a Braf trial. I am positive for the Braf mutation. But Dr. Minor had an Ipilimumab trial that he wanted me to do.

This was a very hard choice. This is when I decided I was going to be in control and choose the treatment I want to do not what the doctors want me to do.

I decided to start a blog.

I know there are a lot of people that care about me and want to know how I am doing.

So, Where to start? I guess the day I was diagnosed with Stage IV Melanoma would be a good place. It was January 2, 2010. A few moths before my stomach started bothering me, I was getting bad shooting pains that I chalked up to as a bad flu I couldn't shake. As the months went by the pains we getting worse and worse, so bad that I couldn't stand it anymore. I finally went to the doctor. She sent me for tests over the next week. When my blood tests came in, the doctors office told me I had to go to the hospital right away. I remember calling me sister on the way to the hospital and complaining about having to go to the emergency room, It was noon and I had to work at 5.

At the hospital they ran more tests, my blood glucose level was dangerously low. I needed a blood transfusion right away. A normal person should have a Blood Glucose level at about 35, it's dangerous to be lower than 25. I was at a 5. All the doctors and nurses kept saying they did not know how I was walking around. I needed 3 pints of blood.

After my blood transfusions I was sent for Scans. The scans came back showing a large mass in my lower intestine. The doctors thought this was the source of my blood loss and decided to do surgery right away. The mass ended up being a large tumor that tested positive for Malignant Melanoma. I was in the hospital for a total of six days the first time.

After that day it has felt like a whirlwind of things that have happened. I was so scared and wanted it to be over so bad I just listened and did what the doctors told me. I kept thinking, this is horrible but if I do this I can go back to my normal life. I never thought to question the doctors I just did what they said.

The hospital I was at was California Pacific Medical Center in San Francisco. There I was assigned Dr. Minor as my oncologist. He was the one who told me that I had Stage IV Melanoma. I never thought to myself I would get cancer. I don't think anyone does, but I had never felt so helpless in my life. I had no idea what to do. It felt like Dr Minor kind of took me under his control. He seemed very confident in what he was telling me to do, so I just went with it. He decided, and I say this because I still don't feel like this was my decision, that my treatment would be Biochemo therapy. He made it seem like it was my only choice, do that or die! My family has always been so supportive but we were all so clueless about Melanoma.

Even at this point I had no idea what I was in for with the Biochemo. The Doctor said we had to move fast and start the treatment as soon as possible because Melanoma tumors are fast growing. I started treatment on February 1st. What the treatment consisted of was one week in the hospital and then two weeks out for recovery for six cycles. I could of never imagined how horrible, HORRIBLE this treatment would be. In the hospital they were pretty much pumping toxic poisons into my body. I would get severe chills and I got so sick I couldn't eat. I lost thirty pounds over those five months. Each treatment got progressively worse. I thought the sixth one was going to kill me.

To make a bad story worse, once the six treatments were over I had more scans done. The Biochemo had stopped working after the fourth treatment and my tumors had gotten bigger. The tumors did at first respond but like in many people I plateaued. This was such a blow. The only thing that was getting me through it was thinking I would be cured, that I could go back to my normal life when the Biochemo was over.