Hi everyone,
A lot has happened in the last week. I had a pain free week last week, but since I had a CT scan last Friday I had to take the contrast Thursday night. The instructions said to take at bedtime. Ordinarily that would not be a problem, but since I have a colostomy, I had a serious problem four hours after drinking it. I had a two-piece appliance on and I didn't wake up when it became full. When I did wake up at 4am, the bag popped off the phlange holding it to my body and I got sh-t all over me and my bed. I took my dirty clothes off when I got in the bathroom and walked around like that until after I took a shower and put on a new ostomy appliance. That was so embarrassing! I got the CT done and had similar filling of the bag 4 hours after drinking the contrast again but since I was awake, I was able to empty the bag before it became a problem.
On Monday, I saw my gyn/onc and she told me there was "no measurable disease" on the CT. The good thing about that is that it means that the tumors they saw during the surgery did not grow. She also told me the CA-125 was decreasing. It started out above 100 before treatment and was at 40 after the first treatment and was down to 30 on the labs performed last week. As long as it continues to go down that will be good. I got down to the AIU around 10am, but it took them until almost noon to get the pre-medications to me and it was really slow getting the rest of themto me as well. I did ok most of the time, but when they finished with the last medication, I had a severe reaction to it. It was really scary the way the staff reacted. They brought in a doctor to deal with the reaction and they gave me some stuff to reduce the reaction and had me taken by ambulance to the hospital. I was kept overnight for observation and now I am waiting for the discharge orders.
I got to the hospital and the information on getting me admitted go to the hospital, but not to the emergency room. They weren't expecting me, but at least they didn't turn me away. They got word on my right before they knew what room I would be in. When I got there, my arms and face were all red and splotchy, but by two hours after the redness started, it was all back to normal. My gyn/onc came through a few minutes ago and said that they would be calling a prescription that will help me come off the steroids they gave me to deal with the reaction. I will pick that up when I go to pick up my shoes that they didn't find until after I left by ambulance yesterday. Life really sucks. At least the joint pain and nausea haven't started yet. I hope they give me a break this week because I am so tired of dealing with that. One thing the doctor said was that this kind of reaction doesn't happen with carboplatin after the first round of treatments, but usually after two or three treatments of the first recurrence there will be a reaction. She needs to check with the study protocol of what to do about the reaction. She says there are three possibilities: 1.They can do a desensitization where they give me the drug in smaller amounts at a time to get me used to it again or 2.they can change me to cisplatin which is a "cousin drug" or 3.they can drop it all together. She said she would let me know before the next treatment. This is a much nicer hospital than the university hospital was. All the rooms are private and they all have their own shower which is really nice since there was only one shower room on the wing I was on and the nurse had to schedule times for such things so I only got maybe 2 showers for the 10 days I was there. I haven't taken a shower here, but it is good to know that it is available. My nurse just came in and said I would probably be out of here by noon. That's all for now folks!
Sending you gentle hugs
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