MD Anderson visit

MD Anderson Cancer Center

I wanted to check in and give you all an up date on our vist to MD Anderson. We left home around 9am on Sunday morning October 9th. It took us about 11 hours to get there. The driving wasn't bad at all. Once we got settled in our hotel room we decided to search for dinner. We chose a italian dive that ended up being great! We then headed back to the hotel room for some rest before our big day!

On Monday morning bright and early we got up and headed downstair for breakfast and to wait on the hospital shuttle. The hotel we were staying at offered a free shuttle to and from the hospital which was great. It saved us on parking! My appointment was at 0830 for registration and at 1000 with Dr. Fanale. I got registered and had blood work done and waited for the doctor.

Dr. Fanale was a nice doctor. She was very knowledgable and easy to talk to. She reviewed my history and asked questions. She then told us of her plan and we told her of Dr. Forero's plan. They were both great for Relapsed/Refractory Hodgkin's. Both with different thinking behind them. She totally agreed with Dr. Foreros plan and decided to give him a call to discuss what the best plan would be for my treatment. Mark and I had lunch and then returned to finish our appointment.

After speaking with Dr. Forero, Dr. Fanale told us that she agreed with his plan and we could definitely continue treatment at UAB. She also told us that if I didn't respond to this treatment or if I made it to auto transplant and relapsed again to come back. She said that there are clinical trials that she could offer me if that happened. Dr. Fanale spoke very highly of Dr. Forero. They are collegues and actually worked together on the clinical trial for the treatment I will be recieving before it was approved by the FDA in August 2011. Yes, very recent!

So, I guess you're wondering what the treatment plan is. Well, tomorrow October 17th, I will begin my first treatment of the drug SGN-35. It is an infusion that will last over 30 minutes. It is a target specific drug for cancer cells by identifying certain proteins and antibodies on the cancer cells. Therefore, sparing healthy cells. It's main side effect is peripheral neuropathy and fatigue.

I will undergo 4 cycles of this medicine. One dose every 3 weeks times 4 doses. I will have a PET scan between doses 3 and 4 to see if its working. It is said to be the best drug for Hodgkin's at the present time especially for Relapsed/Refractory. If I achieve a Complete Remission or near Complete Remission, I will head to the Autologous transplant as planned before. After the transplant, I will have Radiation.

I have high hopes for this drug and actually have a good feeling about it. Please everyone pray for my family and for God to bless the doctors and medicine. Ultimately he is the Great Physician and the healer. I ask everyone to please pray, pray hard. I thank you all in advance. Much love!

Shrimp Po Boy for lunch in LA

Yummy Texas Waffle for Breakfast

Louisiana State Line

Mississippi State Line



Texas State Line

Good News.....

On Tuesday I had my repeat PET scan to determine if the questionable "spot" in the left clavicular area was still present. My PET wasn't until 4:00 CST. I wasn't really nervous just kind of go with the flow about it.

On Wednesday, my BMT Clinical Coordinator Wendy called with the results. She said that the "spot" wasn't there! This is great news! This means that the cancer is still localized in only one spot (the mediastinum or center chest) and hasn't moved to other areas of my body!

Dr. Forero gave us a call on Wednesday evening. He was very pleased with the results and happy that it is still localized. He is suggesting for me to do the SGN-35 for 2 cycles and if complete remission is achieved then we will move to the Autologus BMT. Afterwards we would do Radiation to the areas where the lymphoma was previously present.

He is also willing to work with the docs in Texas to hear different opinions and decide on the best way to treat my disease and aim for a CURE. He gave me his cell phone number to give to the doctor in Texas to have her call him. They are actually collegues and have worked on clinical trials together in the past. I'm thankful to have him as my oncologist and to know that he is willing to work with the other docs.

I'll keep everyone updated as much as possible. We are driving a dreadful 12 hour drive to Houston on Sunday. Pray for us a safe trip and a good visit with the doctors. Thanks to everyone in advance. :)

Update

I thought I would write a quick blog to update you all on what's been going on. There has been a change in plans regarding the Stem Cell transplant. It has been put on hold for now. On Thursday 9/22, I had my pre-transplant PET scan to see the status of the disease (hoping for Complete or at least Partial remission) to proceed with transplant. The previous CT showed that the mass in my chest looked to be a very slight bit larger. However, it was so unclear because it was such a small difference that it could have been associated with the angle I was laying, movement, or the machine itself. Mark and I remained in high hopes that this was the case. Deep down inside I knew something wasn't right. It was the same feeling I had when the biopsy confirmed relapse back in May. On Friday 9/23, I received a call from an unknown 205 (Birmingham) number. When I answered the phone, Dr. Shelton was on the other end. Then and there I knew what I was about to hear wasn't going to be good news. I've learned that it's never a good thing when the doctor calls. She said that the PET scan confirmed that the mass in my chest had became slightly larger. This means that it did not respond to the mobilization chemotherapy that I had back in August. Not good at all. They are calling my disease "Refractory" now. This means that it doesn't respond to certain chemos. There was also a questionable spot in my left clavicular region where the clavicle and shoulder bone meet. She recommended to have a biopsy of that area to see if it was anything and with the results from that we will determine the treatment plan.

That was a hard day for me. Some of my best friends came over that night for a pre-planned girls night. We had a blast and it helped me to take my mind of things. The next day I felt like a new me ready for battle. That day, I made a commitment to myself and life that I would do the only thing I knew that I could do and that's to make myself stronger. I have committed to a plant-based/vegetarian diet  with low sugar intake as well as very low processed foods. I have also started exercising on a daily basis. NO more wine or desserts after dinner. So far I have felt great and actually a lot healthier. I am more aware of the things that go into my body and I hope by doing this that I can help in my defeat against stupid cancer.

This past Thursday we met with the Surgeon and also a Radiation Oncologist. The surgeon decided that it wouldn't be wise to do a biopsy. First, he couldn't feel anything in the region of the suspected spot. He didn't want to be just "digging" around in there. He and Dr. Shelton decided that the best plan of action would be to do a repeat PET scan and if the spot was still there then it is pretty much indicative of new disease. The reason it is in question at all is because there was no spot on the CT and there are a lot of things that can cause a PET to be positive. They are unsure if the area is disease or if it is just inflammation, movement, etc. Sorry if I'm confusing you. Thankfully, I received the call on Friday that the insurance company approved another PET scan and so we are just waiting to schedule it now.

I also met with the Radiation Oncologist because having radiation if the cancer is localized is a huge possibility. Meaning, if the "new" spot turns out to be nothing and the only evidence of disease is in the original mass in my chest. He explained to us the process and side effects. It would be around 24 treatments, Monday through Friday. About 5 weeks. I'll go into more detail about it if it is the path chosen for us to take.

Just to through it out there. I have also spoken with Dr. Forero who is working hand in hand with Dr. Shelton and if the spot comes back positive for Hodgkin's then the next planned step would be to use a drug called SGN-35. It's supposed to be the most powerful drug for Hodgkin's. It is different than most chemos because it actually targets certain antibodies and proteins on the Hodgkin's cells therefore sparing healthy cells. It's a good drug and a likely possibility.

Anyway, I know this seems like a lot and believe me when I say that our heads have been spinning. In the midst of all of this, Mark and I have to decided that it would be wise to have a second opinion. We have made an appointment with MD Anderson in Houston, TX. It's not that we don't trust our doctors, we just think it would be a good idea to hear another voice in the matter. It is my life that's in their hands. The appointment is scheduled for October 10th and we will be there for a few days. I'm hoping to leave there with more hope and knowledge. It is said to be the best cancer center in the world.

I'll keep you all updated.

I'm a Survivor

I'm not gone give up

I'm not gone stop here

 I'm gone FIGHT harder

I'm a Survivor