Bradley, Tricia & Nathan all had their blood drawn yesterday & sent overnight to the Seattle Cancer Care Alliance. After their 5-6 weeks of testing they will call Dr. Raish with the results. If none of them are a match my mom & dad will be tested next & we’ll wait another 5-6 weeks. When a match is found & I have a donor a date will be set for the transplant.
A distant relative is the one who got us started on the mangosteen juice after he heard my story. He was at a conference about it recently & told my story to a Detroit doctor who is researching the effects of xanthones (found in the mangosteen fruit) on different diseases. The doctor point blank told him I need to give the mangosteen juice another 30 days & he’s convinced I’ll see results. So I started drinking again on Saturday. =)
Tuesday, April 22, 2008
Wednesday, April 16, 2008
2008-April 15-good news for a change
I have some good news for a change. My mom, dad & I had a phone conference with the Regence Appeal Board yesterday regarding the 6 month waiting period they have for transplants. This was our second attempt at the appeal process. They called me back when they were finished with their meeting & they have waved the 6 month waiting period! I can finally move forward with the transplant process.
There’s more good news. I got the results of my PET scan last week Tuesday & the dozen spots on my lungs are gone! We don’t know how or what they were for sure. It could have been the mangosteen juice that took care of whatever it was or it could have been an infection or inflammation in the tissue caused by the radiation. Who knows. The two spots on the right side of my neck are still there & another one showed up just below them right above my collar bone.
Dr. Raish called Dr. Holmberg at the Seattle Cancer Care Alliance & gave her the information from my PET scan & they decided on what my next steps are & I met with him again on Friday. He wanted me to have a central Picc line put in my arm again & start chemo this week. But we’re going to hold off about two weeks till after I get back from Chicago. I won 2 free airline tickets at the company Christmas party & I made plans to visit my sister a couple months ago before I knew I had cancer again. I didn’t want to take any chances of complications with my central line or feeling sick from the chemo while I was in Chicago. I had one of those lines put in this past January when I ended up in the hospital & it was so painful & sore. I’m already in enough pain & didn’t want to add anymore. Dr. Raish is also concerned with having any kind of port a cath or catheter in me any longer than I need because I have a history of blood clots. I’m back on Prednisone again for the pain. It took a couple days to get the dosage right. So far it seems to be working.
As of right now I am scheduled to start chemo Friday, May 2. It will be about 3 hours once a week for two weeks, then 1 week off & 2 weeks back on. After that we’ll reassess. The first step in the transplant process is to have my siblings’ blood drawn & tested for HLA typing for a match at the Seattle Cancer Care Alliance. I believe that stands for human leukocyte antigen. I’ll let you google that if you really want to know what it’s all about. I don’t even understand it all myself. If none of them are a match my parents will be tested next for being a donor. The HLA typing takes about 5-6 weeks. The type of transplant I am having is called a bone marrow transplant or allogeneic transplant. Graft-versus-host disease (GVHD) is a side effect from this type of transplant. Cells from my donor’s bone marrow (called the graft) will attack my body, the transplant patient (called the host). GVHD can range from mild to life-threatening. From what I understand they want me to have a mild case of it. This means it’s working. I’ll let you google GVHD too if you want more of an explanation. I need to be within about 30 minutes of the Seattle Cancer Care Alliance for about 3 months to keep an eye on the GVHD & make sure I don’t get it severely.
Now that we have the 6 month waiting period for transplants waved the next thing is to come up with some sort of secondary health insurance. Regence covers $250,000 for transplants & mine is going to cost about $311,000. Whoa!
There’s more good news. I got the results of my PET scan last week Tuesday & the dozen spots on my lungs are gone! We don’t know how or what they were for sure. It could have been the mangosteen juice that took care of whatever it was or it could have been an infection or inflammation in the tissue caused by the radiation. Who knows. The two spots on the right side of my neck are still there & another one showed up just below them right above my collar bone.
Dr. Raish called Dr. Holmberg at the Seattle Cancer Care Alliance & gave her the information from my PET scan & they decided on what my next steps are & I met with him again on Friday. He wanted me to have a central Picc line put in my arm again & start chemo this week. But we’re going to hold off about two weeks till after I get back from Chicago. I won 2 free airline tickets at the company Christmas party & I made plans to visit my sister a couple months ago before I knew I had cancer again. I didn’t want to take any chances of complications with my central line or feeling sick from the chemo while I was in Chicago. I had one of those lines put in this past January when I ended up in the hospital & it was so painful & sore. I’m already in enough pain & didn’t want to add anymore. Dr. Raish is also concerned with having any kind of port a cath or catheter in me any longer than I need because I have a history of blood clots. I’m back on Prednisone again for the pain. It took a couple days to get the dosage right. So far it seems to be working.
As of right now I am scheduled to start chemo Friday, May 2. It will be about 3 hours once a week for two weeks, then 1 week off & 2 weeks back on. After that we’ll reassess. The first step in the transplant process is to have my siblings’ blood drawn & tested for HLA typing for a match at the Seattle Cancer Care Alliance. I believe that stands for human leukocyte antigen. I’ll let you google that if you really want to know what it’s all about. I don’t even understand it all myself. If none of them are a match my parents will be tested next for being a donor. The HLA typing takes about 5-6 weeks. The type of transplant I am having is called a bone marrow transplant or allogeneic transplant. Graft-versus-host disease (GVHD) is a side effect from this type of transplant. Cells from my donor’s bone marrow (called the graft) will attack my body, the transplant patient (called the host). GVHD can range from mild to life-threatening. From what I understand they want me to have a mild case of it. This means it’s working. I’ll let you google GVHD too if you want more of an explanation. I need to be within about 30 minutes of the Seattle Cancer Care Alliance for about 3 months to keep an eye on the GVHD & make sure I don’t get it severely.
Now that we have the 6 month waiting period for transplants waved the next thing is to come up with some sort of secondary health insurance. Regence covers $250,000 for transplants & mine is going to cost about $311,000. Whoa!
Tuesday, April 1, 2008
2008-April 1-phone consultation
I ended up having a phone consultation last week with Dr. Holmberg from the Seattle Cancer Care Alliance because she had bronchitis & couldn’t come into the office. I still don’t know what the time frame is for me to go to Seattle or what the plan is. As of today my health insurance just changed to Regence, so everything has kind of been put on hold while we try to figure it all out. I’m thoroughly confused about everything & just don’t have any answers for anyone right now. I have an appointment with Dr. Raish next week & hopefully we’ll find out what’s all going on & when.
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