Journal entry by Cate Mueller —
I've been meaning to update for some time, but frankly, was waiting to have some definite information on a number of areas so that I could come to you with answers. But I guess that's the point of this update. Sometimes, we have to be patient for answers and next steps and the last few weeks have been a lesson in that for me.
We went up to Nashville on March 19, following a 2-week "wash" from the Aranesp injection that helps with my anemia. We had to wait to do the screening for the trial so that they could see my blood, unassisted by drugs, and whether my hemoglobin levels were high enough. They also looked at my blood for many other things and did a new MRI, an echocardiogram (sonogram on heart), and a chest x-ray. Since the MRI showed a new brain lesion that hadn't been treated, I could NOT start the trial as hoped on March 28. I actually don't know how the other screenings went since they haven't said.
Meanwhile, I had to get a finer resolution MRI back in Chattanooga for my radiation oncologist to have the full info for treatment and to make sure that there weren't more lesions. He said the MRI they'd done in Nashville was the "Texas Toast" version and he needed a "thin slice" one to compare against my prior ones. So, that got done on March 25 and I had the new mask created and CT mapping done to prepare for treatment on March 27. I had to get a new mask since my regular radiation machine at Memorial Hospital was missing a part that allowed it to do the sterio tactical brain blasts. Instead, I'd be treated at Parkridge in their Sarah Cannon Cancer Center (same name and affiliated with the Research Institute in Nashville!) and that machine would have to do it in 3 sessions vs. just one.
Today, I had my first of three sessions -- the lesion is a very small, left posterior occipital region. I'm not having any symptoms from it, which would normally be vision related if I did. I'll be done with the radiation, this time, on Thursday, and my system will need a 2-week wash before I can start the trial. Also, since that means it will be a month since the original screening, they will have to re-screen me for some things. Sarah Cannon Research Institute is looking now for what they need to re-test and if any of it can be done during my 2-week wash or if I will have to wait to do it all after that. And once I know that, I'll know a possible start date on the trial.
The good news is that my medical oncologist here (Dr. Arrowsmith) does not think this delay is a problem. Also, the information about how the trial is doing in patients is very encouraging and side effects seem relatively mild -- the main one is an acne-like rash over my face and chest. Just what every mother of the groom is hoping to have ;-) But maybe I won't get that. This trial involves a pill vs. an infusion like chemotherapy. Exactly how many pills and how often I'd take them in a three week cycle won't be known until I am officially started. I do know that I'll have to be in Nashville about 5 days out of each cycle -- 3 at the beginning and one to two in the middle. I will bring the pills home with me to take as directed by the trial folks.
If I don't get into this particular trial for some reason, a number of other ones are in progress that would be helpful to me as well. Regardless, I'm still praying mightily for this one since it sounds so good and I just want to get started. I haven't had any treatment on the lung tumors since Feb. 12 so that makes me somewhat anxious no matter what the doctor tells me. Also, I've gotten a cough that doesn't hurt but bothers me, particularly at night. I guess that after 18 months with the lung cancer diagnosis, it's reasonable to expect a cough of some sort!
As always, we continue to appreciate all the prayers and inquiries and general support that we are getting from our family and friends. Thank you. As soon as we have actual information about starting the trial, I will let everyone know.
We went up to Nashville on March 19, following a 2-week "wash" from the Aranesp injection that helps with my anemia. We had to wait to do the screening for the trial so that they could see my blood, unassisted by drugs, and whether my hemoglobin levels were high enough. They also looked at my blood for many other things and did a new MRI, an echocardiogram (sonogram on heart), and a chest x-ray. Since the MRI showed a new brain lesion that hadn't been treated, I could NOT start the trial as hoped on March 28. I actually don't know how the other screenings went since they haven't said.
Meanwhile, I had to get a finer resolution MRI back in Chattanooga for my radiation oncologist to have the full info for treatment and to make sure that there weren't more lesions. He said the MRI they'd done in Nashville was the "Texas Toast" version and he needed a "thin slice" one to compare against my prior ones. So, that got done on March 25 and I had the new mask created and CT mapping done to prepare for treatment on March 27. I had to get a new mask since my regular radiation machine at Memorial Hospital was missing a part that allowed it to do the sterio tactical brain blasts. Instead, I'd be treated at Parkridge in their Sarah Cannon Cancer Center (same name and affiliated with the Research Institute in Nashville!) and that machine would have to do it in 3 sessions vs. just one.
Today, I had my first of three sessions -- the lesion is a very small, left posterior occipital region. I'm not having any symptoms from it, which would normally be vision related if I did. I'll be done with the radiation, this time, on Thursday, and my system will need a 2-week wash before I can start the trial. Also, since that means it will be a month since the original screening, they will have to re-screen me for some things. Sarah Cannon Research Institute is looking now for what they need to re-test and if any of it can be done during my 2-week wash or if I will have to wait to do it all after that. And once I know that, I'll know a possible start date on the trial.
The good news is that my medical oncologist here (Dr. Arrowsmith) does not think this delay is a problem. Also, the information about how the trial is doing in patients is very encouraging and side effects seem relatively mild -- the main one is an acne-like rash over my face and chest. Just what every mother of the groom is hoping to have ;-) But maybe I won't get that. This trial involves a pill vs. an infusion like chemotherapy. Exactly how many pills and how often I'd take them in a three week cycle won't be known until I am officially started. I do know that I'll have to be in Nashville about 5 days out of each cycle -- 3 at the beginning and one to two in the middle. I will bring the pills home with me to take as directed by the trial folks.
If I don't get into this particular trial for some reason, a number of other ones are in progress that would be helpful to me as well. Regardless, I'm still praying mightily for this one since it sounds so good and I just want to get started. I haven't had any treatment on the lung tumors since Feb. 12 so that makes me somewhat anxious no matter what the doctor tells me. Also, I've gotten a cough that doesn't hurt but bothers me, particularly at night. I guess that after 18 months with the lung cancer diagnosis, it's reasonable to expect a cough of some sort!
As always, we continue to appreciate all the prayers and inquiries and general support that we are getting from our family and friends. Thank you. As soon as we have actual information about starting the trial, I will let everyone know.
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