Thursday, May 13, 2010
Good evening,
Amy is still in the hospital. The doctors wanted to continue to give her platelets and blood as needed and to make sure she did okay with her chemo treatment of mylotarg. They gave Amy the one treatment she will have of mylotarg from 4-6 p.m. this evening and it went smoothly. All the pre-meds they gave her made her so sleepy that she slept through most of it. The pains in her back, ribs and shoulders have been much better - she has barely used the pain pump today. All the pain medication had made her drowsy and a bit "out of it"... but that is getting better as the pain meds are used less. All the medications for the inflammation around the heart are working, her heart rate which was running 130-150 is now down in the 70-90 range and she is no longer having the shortness of breath. The chemo treatments will cause Amy's counts to drop and she will have little energy and be very susceptible for infection for a few weeks, but that should improve as her counts recover.
Today has been less hectic and quieter than the past few days. Grandma Phyllis V. had driven down Monday and headed back to VA today, so we had a nice, but busy, visit with her.
We have been so blessed by the emails, cards, phone calls, etc ..... each one lifts our spirits.
Thank you, Kathy
Wednesday, May 12, 2010
Amy has had a busy 24+ hours. After being admitted to the hospital the testing began. They did the CT Scan at 1 a.m., the doctor came by the room at 3 a.m. to tell us there were no blood clots in the lungs, Amy woke up at 4 wanting a cherry Popsicle, then the nurse came in to take vitals and weight, and since we were still awake at 5:30 a.m. we decided to give Greg a call and let him know the results of the CT Scan (I don't' think he appreciated our thoughtfulness that early in the morning). Amy then slept until about 8:30 a.m. - when we had to wake up for the doctors making rounds. The day has been long and hard on Amy. She was in pain most of the day... her back, left shoulder, and both arms being the worst. They did give her a pain pump so she can get pain medication as needed. Dr, Rizzieri said there is some inflammation around Amy's heart. The cause could have been the leukemia or the chemo to fight the leukemia. They have placed her on an anti inflammatory steroid (which makes Amy very weepy) and another antibiotic to help with the inflammation. They do believe this is what is causing Amy's shortness of breath and chest pain.
Amy was feeling a bit better..then the guy came to the room to do the Echo Cardiogram. It was amazing to watch the "pictures" of Amy's heart on the screen, but it was not amazing when the technician preforming the Echo.. all of a sudden looked at us and the nurse and said, "is there a doctor on this hall?" and went out of the room and down the hall. Of course, it scared all of us. When the nurse came back we asked what was wrong, and she said nothing he just wanted permission to use some contrast to get a certain "picture" wanted... we were not amused. Then to top off the afternoon, we had a visit from the "planned one" (David) and his son (Justin). It was great to see them and had a wonderful visit. Amy was feeling pretty good until about 7:30 p.m., but then her left shoulder began throbbing bad. It took awhile to get the medication dosage that helped bring the pain down. Once the pain eased up she finally fell asleep... hoping she sleeps good until morning.
Kathy
Amy was feeling a bit better..then the guy came to the room to do the Echo Cardiogram. It was amazing to watch the "pictures" of Amy's heart on the screen, but it was not amazing when the technician preforming the Echo.. all of a sudden looked at us and the nurse and said, "is there a doctor on this hall?" and went out of the room and down the hall. Of course, it scared all of us. When the nurse came back we asked what was wrong, and she said nothing he just wanted permission to use some contrast to get a certain "picture" wanted... we were not amused. Then to top off the afternoon, we had a visit from the "planned one" (David) and his son (Justin). It was great to see them and had a wonderful visit. Amy was feeling pretty good until about 7:30 p.m., but then her left shoulder began throbbing bad. It took awhile to get the medication dosage that helped bring the pain down. Once the pain eased up she finally fell asleep... hoping she sleeps good until morning.
Kathy
Tuesday, May 11, 2010
Good evening from Duke University Hospital's top floor...yes, Amy is back in the hospital.
At the apartment last night Amy had some shortness of breath, with pain in her ribs, chest and back. The symptoms eased up and she slept good all night. We went to clinic this morning and she again had shortness of breath with pain. We quickly found that having chest pains gets a lot of people in your room taking care of you - which overwhelmed Amy. They did an EKG, vital signs, and administered medications. Her pain starting easing up and the doctors feel it is probably a side effect of the Vidaza she is getting, but suggested it would be good to admit her to the hospital and run tests, to make sure something is not being overlooked. We are hopeful that this stay will only be a day or two. The Vidaza is given to Amy by injection (shots), 2 a day for 7 days (we are on day 5). They can give the shots in her arms or stomach. The first two days Amy had shots in both arms and her arms became very red and sore. With her arms being so sore she decided the next two days to have the shots in her stomach, now it is red and sore, but she will probably keep taking the stomach shots, so she can have better use of her arms. Amy wants to continue the Vidaza because it seems to be working on bringing her white count down. (WBC was 22 on Friday, 15 Saturday, 9 Sunday, 7 Monday and 3.7 today.)
So we are once again on 9200 , and they gave us the 'Penthouse" room.. it is larger, has a window couch instead of seat (better for me to sleep on), plus recliner - so knowing all the nurses has its perks..:)
We are so grateful for our family and friends... thank you for all your prayers and encouragement.
Love to all,
Kathy
At the apartment last night Amy had some shortness of breath, with pain in her ribs, chest and back. The symptoms eased up and she slept good all night. We went to clinic this morning and she again had shortness of breath with pain. We quickly found that having chest pains gets a lot of people in your room taking care of you - which overwhelmed Amy. They did an EKG, vital signs, and administered medications. Her pain starting easing up and the doctors feel it is probably a side effect of the Vidaza she is getting, but suggested it would be good to admit her to the hospital and run tests, to make sure something is not being overlooked. We are hopeful that this stay will only be a day or two. The Vidaza is given to Amy by injection (shots), 2 a day for 7 days (we are on day 5). They can give the shots in her arms or stomach. The first two days Amy had shots in both arms and her arms became very red and sore. With her arms being so sore she decided the next two days to have the shots in her stomach, now it is red and sore, but she will probably keep taking the stomach shots, so she can have better use of her arms. Amy wants to continue the Vidaza because it seems to be working on bringing her white count down. (WBC was 22 on Friday, 15 Saturday, 9 Sunday, 7 Monday and 3.7 today.)
So we are once again on 9200 , and they gave us the 'Penthouse" room.. it is larger, has a window couch instead of seat (better for me to sleep on), plus recliner - so knowing all the nurses has its perks..:)
We are so grateful for our family and friends... thank you for all your prayers and encouragement.
Love to all,
Kathy
Saturday, May 8, 2010
Hi everyone! After yesterday's depressing post I wanted to post some positive results. My white count dropped from 22.5 yesterday to 15.8 today!!! So something is working to control my Leukemia. This is a big relief for me.
I went to clinic again today to get more IV antibiotics and a treatment. The chemo treatment actually consists of two shots. They can give them in my arms or stomach and so far I've had two in each arm. However, my arms are getting sore so tomorrow I will probably get them in my stomach. I was nervous at first when they told they would be shots because the only shots I could remember having were tetanus and neupogen which both hurt. I hardly felt these little shots, the site just get sore later.
I'm still having some back pain which is controlled very well in clinic through IV Dilaudid however my oral medication doesn't cut it quite as well. They are working on adjusting my pain medications so hopefully that will get better
Thank you to all of you who continue to pray for comfort and the for the effectiveness of these treatments, much love to you all!
Amy
I went to clinic again today to get more IV antibiotics and a treatment. The chemo treatment actually consists of two shots. They can give them in my arms or stomach and so far I've had two in each arm. However, my arms are getting sore so tomorrow I will probably get them in my stomach. I was nervous at first when they told they would be shots because the only shots I could remember having were tetanus and neupogen which both hurt. I hardly felt these little shots, the site just get sore later.
I'm still having some back pain which is controlled very well in clinic through IV Dilaudid however my oral medication doesn't cut it quite as well. They are working on adjusting my pain medications so hopefully that will get better
Thank you to all of you who continue to pray for comfort and the for the effectiveness of these treatments, much love to you all!
Amy
Friday, May 7, 2010
So I haven't updated in while because things have been changing kind of rapidly and not so much for the good. WARNING: This post was hard to type and may be hard to read. First, let me say that we have run out of "curing" type options. The treatments I am receiving now are simply to try to control my Leukemia as much as possible and give me more time while also weighing quality of life vs. quantity of life. Michael and I have truly found peace with this and are actually handling it very well. We've kind of been eased into this. We knew it was a big possibility when my Leukemia came back in November and especially when the chemotherapy I received in December did not work.
We found out that I am not eligible for the clinical trial that is starting in May so that was our first change in plans. I started taking Hydrea on Tuesday but unfortunately my white count still took a fairly big jump. We were hoping that the Hydrea would at least work for a couple of weeks but it doesn't look like it is controlling my leukemia well enough. So, we go to the next plan. Today I am starting a round of mild chemotherapy (Mylotarg and Vidaza). They really think I will not have many side effects from this and will tolerate it well. These drugs will be given to me outpatient but this means I have to come to clinic everyday. In addition to this chemo they are tripling my dose of Hydrea hoping that it will at least help a little.
I also had a low grade fever last night and this morning so they put me on IV antibiotics. One positive thing is that I don't have to deal with the side effects of oral antibiotics. This seems so little but let's focus on the positive! Again, another positive is that this is outpatient treatment so I get to sleep in my own bed! My back has also been hurting which they say is probably an effect of the high white count so I really appreciate pain medications right now!
Hope all of this makes sense, it's a lot to take in. In spite of the fact that my Leukemia is being stubborn and hard to control, I actually feel good which I am so thankful for.
Hope the weekend treats you well, and Happy Mother's Day to all the moms out there,
Amy
We found out that I am not eligible for the clinical trial that is starting in May so that was our first change in plans. I started taking Hydrea on Tuesday but unfortunately my white count still took a fairly big jump. We were hoping that the Hydrea would at least work for a couple of weeks but it doesn't look like it is controlling my leukemia well enough. So, we go to the next plan. Today I am starting a round of mild chemotherapy (Mylotarg and Vidaza). They really think I will not have many side effects from this and will tolerate it well. These drugs will be given to me outpatient but this means I have to come to clinic everyday. In addition to this chemo they are tripling my dose of Hydrea hoping that it will at least help a little.
I also had a low grade fever last night and this morning so they put me on IV antibiotics. One positive thing is that I don't have to deal with the side effects of oral antibiotics. This seems so little but let's focus on the positive! Again, another positive is that this is outpatient treatment so I get to sleep in my own bed! My back has also been hurting which they say is probably an effect of the high white count so I really appreciate pain medications right now!
Hope all of this makes sense, it's a lot to take in. In spite of the fact that my Leukemia is being stubborn and hard to control, I actually feel good which I am so thankful for.
Hope the weekend treats you well, and Happy Mother's Day to all the moms out there,
Amy
Sunday, May 2, 2010
Hi everyone!
It's been so touching to hear all the stories about the prayer time for me. I still feel so blessed to have you all supporting me. I only wish I could see you all more often.
I decided not to take my last treatment of STA-9090 on Friday. The side effects have been building up and I wanted a break from it. The doctors were fine with this as well. As of now I'm going to stay on a Tuesday/Friday schedule for clinic visits. They have not put me on Hydrea yet, they are going to continue to watch my counts and when they get too high or start to rise more rapidly that's when we will start Hydrea. The drug only works temporarily so they want to wait as long as possible before using it. This will bridge the gap until the next clinical trial starts. We do not know when it will start just that the drug company is hoping to start it this month.
I've been very tired lately and sleeping a lot. I hope to travel to VA next weekend for Mother's Day so pray that I have enough strength and energy to do so.
Much love and thanks, Amy
It's been so touching to hear all the stories about the prayer time for me. I still feel so blessed to have you all supporting me. I only wish I could see you all more often.
I decided not to take my last treatment of STA-9090 on Friday. The side effects have been building up and I wanted a break from it. The doctors were fine with this as well. As of now I'm going to stay on a Tuesday/Friday schedule for clinic visits. They have not put me on Hydrea yet, they are going to continue to watch my counts and when they get too high or start to rise more rapidly that's when we will start Hydrea. The drug only works temporarily so they want to wait as long as possible before using it. This will bridge the gap until the next clinical trial starts. We do not know when it will start just that the drug company is hoping to start it this month.
I've been very tired lately and sleeping a lot. I hope to travel to VA next weekend for Mother's Day so pray that I have enough strength and energy to do so.
Much love and thanks, Amy
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