Last Friday, I had the PDT procedure done by Dr. Cohen. I had a weekend planned to clean the basement and go see some movies because I couldn't be outside in the sunlight. Instead, I spent the weekend blind as a bat! My vision has gradually decreased over the past few days. On Monday, I went back to see Dr. Cohen. He said it appeared that I have a leakage of blood behind the eye that is blocking the light as well as the ability to see things (in addition to my already poor vision). He said that it should improve over the next week. However, I called him today to tell him that it is still getting worse. He was surprised to hear that my vision had worsened rather than improved. If things continue to worsen through Friday, he said he would do surgery to irrigate the blood out of the eye and laser the vessel closed. He would probably do this next Monday or Tuesday. He will be out of town for the next few days at some vision conferences and will be presenting my case at Wills Eye Center on the east coast. He expects there will be many oncologists there & wanted to present it so that hopefully someone may know of a systemic treatment they could do to stop the optic nerve tumor from leaking and growing.
On another note... after three years, I decided I should make a trip to the dentist. I was hoping that at least one part of my body was in good shape, by not so. I need two crowns, a root canal and gum surgery. Yippee! Lucky me...
Tomorrow, I go get my pick line out (Yippee for real!) and have an MRI of my pancreas and kidneys. I'll write more later this week once I discuss the findings with the doctor.
Tuesday, April 20, 2010
Tuesday, April 13, 2010
The latest and greatest
I had the MRI of my spine after returning from Florida. Unfortunately, the infection has moved from the thoracic area to my cervical (neck) area and has affected two bones. They said I needed to continue IV antibiotics for three more weeks (which I just finished) and then start on oral antibiotics for six more weeks. I will have another MRI of my spine in three weeks and see the doctor, at which time I will hopefully be done with this!
I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?
Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.
On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!
I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?
Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.
On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!
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