July 31, 2014.. We went to the 12 noon doctor appointment and finally got to see him at 1:20. He thought the Kyprolis is working! That was great news. He said some of the important parameters had improved and expected them to improve even more as I receive more treatments. Before these tests were done, I had received a total of 10 infusions of Kyprolis. I received two more here but that was after the tests had been done. He also added Thalidomide to my treatment each day. I will take that daily throughout the month. I think there will be a short break at the end of each 28 day cycle, but I am not sure how long the break is. That is another expensive cancer medication. It is about $7200 per month. Hopefully that will add an extra push that will reduce the Myeloma even more.
Yesterday I saw a lady from Bristol I have seen here twice before but I did not talk with her. There is also a couple here now that I had met at the KHO at Allendale. They are from Kingsport. I called them today and they see the doctor tomorrow and will leave for Kingsport later in the day and drive at least part of the way. I am not the only one from our area driving all the way to Little Rock for treatment.
I have taken Lorazepam the past two nights to help offset the effects of the Dexamethasone. I have been sleeping very poorly after taking the Dex. So far, it has helped greatly.
I am scheduled to return here for testing again in November.
Thank you for your continued prayers for they are working.
So tomorrow, we head home! Yippee!!
Thursday, July 31, 2014
Wednesday, July 30, 2014
July 30, 2014.. The Dexamethasone I take, before I get the Kyprolis , keeps me awake, sometimes for long periods of time. A friend from our Myeloma support group back home gave me a tip about taking Lorazapam before going to bed on the nights I have had Dexamethasone. I tried that last night and it helped greatly. I slept during the night! I hope I have found something what will help me sleep during those few days each week. I will try it again tonight.
Today we are preparing to go to the Physician's Assistant appointment and then on to the bone marrow biopsy. I could not eat or drink after midnight last night so I am going to be very dry and hungry by the time I get out of the afternoon appointment. I am already missing being able to drink water. I figure I won't be finished with the procedure until after 3pm. I have another appointment at 4:30pm for the first of two Kyrpolis infusions. That will take until about 6pm if all goes well.
Update tonight at 10:00pm:
I got the bone marrow biopsy. It went smoothly and I didn't have the pain I normally have since they did this one while I was sedated. They also took enough sample to do a gene array. I also got my Kyrpolis infusion. I was there from 4:30 until a bit after 7pm. I will go back for another infusion tomorrow at 4:30. My doctor appointment is at noon.
Today we are preparing to go to the Physician's Assistant appointment and then on to the bone marrow biopsy. I could not eat or drink after midnight last night so I am going to be very dry and hungry by the time I get out of the afternoon appointment. I am already missing being able to drink water. I figure I won't be finished with the procedure until after 3pm. I have another appointment at 4:30pm for the first of two Kyrpolis infusions. That will take until about 6pm if all goes well.
Update tonight at 10:00pm:
I got the bone marrow biopsy. It went smoothly and I didn't have the pain I normally have since they did this one while I was sedated. They also took enough sample to do a gene array. I also got my Kyrpolis infusion. I was there from 4:30 until a bit after 7pm. I will go back for another infusion tomorrow at 4:30. My doctor appointment is at noon.
Tuesday, July 29, 2014
July 29, 2014.. We made the drive to Little Rock yesterday. We left at 8am after getting up at 5:15am to get started. It just takes us a long time to get ready to leave. We had an uneventful drive here. The weather was good and the traffic was not real bad.
Since my last posting: I had to spend two days in the hospital due to a high fever. They did not find the exact cause of the high fever (up to 104.9). They gave me several rounds of different antibiotics and the fever went away.
I have been getting the infusions of Kyprolis twice a week since my last visit to Little Rock. I will learn this week if it is helping with the Myeloma and I pray it is.
We are now getting ready to leave for the hospital. My first scheduled test today is at 11:50am and a PET scan is this afternoon. I have not been allowed to eat anything since last night due to having the PET scan this afternoon. I am sure I will be really ready to eat when I am finally free but that won't be until about 6pm when I am finally finished testing for today. I will have to skip eating tomorrow too since I have the bone marrow biopsy and that is same day surgery (I will be sedated for the procedure).
The following was updated later in the day: I got the PET scan today. They injected the radioactive glucose and I waited one hour then they took me to the PET scanner and the scan took about 45 minutes. I also had a echo-cardiogram with contrast injected. That test took longer than I expected...about an hour. I will probably hear the results of these tests when I see the doctor Thursday. I went to get the Kyprolis infusion at 4:30. They had me scheduled to receive it but they did not have a doctor's orders to give it to me. We waited to get the order until 6pm and it never came so I was not able to get the infusion today. I will go back tomorrow and Thursday and get the two infusions. I sure wish I could have gotten it today as scheduled. They have strict rules that a doctor has to make the order for chemo. A nurse or nurse practitioner can not enter the order. I talked to the clinic manager and he said he would find out where the failure occurred in getting the doctor's orders entered for my infusion.
My white count was 1.45, red count 3.09, hemoglobin 10.1.
Since my last posting: I had to spend two days in the hospital due to a high fever. They did not find the exact cause of the high fever (up to 104.9). They gave me several rounds of different antibiotics and the fever went away.
I have been getting the infusions of Kyprolis twice a week since my last visit to Little Rock. I will learn this week if it is helping with the Myeloma and I pray it is.
We are now getting ready to leave for the hospital. My first scheduled test today is at 11:50am and a PET scan is this afternoon. I have not been allowed to eat anything since last night due to having the PET scan this afternoon. I am sure I will be really ready to eat when I am finally free but that won't be until about 6pm when I am finally finished testing for today. I will have to skip eating tomorrow too since I have the bone marrow biopsy and that is same day surgery (I will be sedated for the procedure).
The following was updated later in the day: I got the PET scan today. They injected the radioactive glucose and I waited one hour then they took me to the PET scanner and the scan took about 45 minutes. I also had a echo-cardiogram with contrast injected. That test took longer than I expected...about an hour. I will probably hear the results of these tests when I see the doctor Thursday. I went to get the Kyprolis infusion at 4:30. They had me scheduled to receive it but they did not have a doctor's orders to give it to me. We waited to get the order until 6pm and it never came so I was not able to get the infusion today. I will go back tomorrow and Thursday and get the two infusions. I sure wish I could have gotten it today as scheduled. They have strict rules that a doctor has to make the order for chemo. A nurse or nurse practitioner can not enter the order. I talked to the clinic manager and he said he would find out where the failure occurred in getting the doctor's orders entered for my infusion.
My white count was 1.45, red count 3.09, hemoglobin 10.1.
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