December 2015 Clinical Trial Update for Tammy

Hello all, I thought I should give you an update from last week. We kind of left you hanging because we didn’t have any real answers yet. Tammy went to Houston last Monday (23rd) in pretty bad shape. She was seen by the Dr. and was taken off one of the drugs for the clinical trial that they thought was causing the problems. They added a few drugs to counter act the side effects. They went ahead and sent her home so that she could be back in time for Thanksgiving. She got home late Tuesday night still very swelled up, her rash was what she would call out of control and her blood pressure was still very high. The Dr. seemed most concerned about her blood pressure and wanted her to keep monitoring it to see if it came down with the blood pressure meds that they gave her. Wednesday morning I bought a home tester so she could monitor it. She monitored it throughout the day on Wednesday. It did not come down so they wanted her to stop the other drug until further notice and her appointment in Houston today. Over the long weekend she started to feel better, the rash slowly went away, and her blood pressure slowly started to come down. Since she has been off of both of them she has lost 9 pounds of water weight due to the swelling. When she left yesterday she was pretty adamant that she was not going to restart on all of the drugs again. Her comment to me was that this treatment has been the worst out of everything that she has been on for the last four years. I just told her that it had to be her decision, but at least go see what they had to say and then make it. Brandi (thank you) volunteered to go down with her this time so they hopped on a plane yesterday to see what the next plan of action would be. We had planned on driving back and forth as much as possible but with all of swelling that the drugs cause we have made the decision that she will have to fly all of her trips now. Sitting for 12 hours at a time is pretty unbearable for her.
I finally was able to talk to her about four this afternoon. From the sounds of things she was not really given a choice to go off. The Dr. was adamant that this was the trial that she needed to be on. Her comment was that he kept saying that the science says that with her mutation this is where she needs to be. He said that they need to get the dosing right so that the side effects are manageable, but that is all part of the process. They are lowering the doses a lot and will work them up until they find the right ones. One of the major factors for all of the problems she was having was that the level of cyclosporine in her blood was almost three times the level that they wanted to have. They want her level to be around 125. Her levels we almost 400. Tammy seems to be ok with proceeding. She said that someone must have tipped the Dr. off about her wanting to stop because he came in with both guns blazing and never even mentioned stopping. She will start taking the drugs again and we will see what happens. She is still going to be taking all of the other drugs to counter act the side effects and maybe they will stay on top of them all.
I included “the Anatomy of Courage” in the title of this one because I see so much courage in Tammy and in all cancer patents. I know all of you see the courage also, but I wanted to give you a glimpse into our life and see Tammy’s courage through my eyes. For most of us we do not think twice about taking an Advil if we have headache. We just go to the medicine cabinet grab a few, throw them down and move on down the road. We have a belief that the drugs are made to help us feel better. So with that thought in the back of our mind it is no big deal. We just take them. For a cancer patient that is not always the case. I would like you to imagine this with me as I walk you down the road of the courage I see. Imagine everyday, twice a day going to your pill bottles. You reach for them knowing exactly what they are and what they represent. You open the bottle but you are not supposed to touch the pills with your bare hands. You would think, what difference does it make, they’re going in me anyway. Then you remember that it is not a caution for you. The caution is so you don’t touch someone else with it. You load the required dose into the cap of the bottle so you have no contact with it. You then have to make a decision. You know that if you put them in your mouth and swallow there is a really good chance that you are not going to feel very good for at least 12 hours, then you have to do it all over again. In the back of you mind all you see is pain, discomfort, and misery. You put them in your mouth and swallow then down anyway. That is true courage my friends. I hope this was not too much info for you, but as I was waiting to hear the news today I was thinking about how courageous Tammy and all cancer patients really are and how in my everyday life I sometimes let my courage falter for a whole lot less. Thank you for the continued love and support. Tammy is still traveling down to Houston every week until after the first of the year. My hope is that I have nothing to report until we finally get some results back on the 6th of January. Love you all.

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