This Revlimid has to be one of the most closely guarded drugs you can try to buy. I knew they were proud of it from the money it costs us, but even after the paperwork we had to fill out the first time I didn't realize how they protect it. It's Monday night and I still don't have the drugs I should have gotten last week to start the new cycle of Revlimid last Saturday. I hope a few days off cycle isn't hurting the whole month of running the cycle.
I got a call late Monday afternoon from Dotti at Dr. Te's Office telling me that finally they have shipped and I should get them tomorrow (Tuesday 8/31), so if that holds true, this cycle will be 8/31 to 9/26 and we'll get to see what the 2nd cycle will do to my blood numbers, we're all hoping that 3 cycles is what it will take to get where LDS hospital wants me to be.
I'm also scheduled to get the new shipment of Lovenox tomorrow which I take every day whether or not I'm taking Revlimid, with luck I'll get both of them like I'm suppose to. I do have to figure out what to do with a full sharps container that has all the spent syringe applicators from the past month in it, I'll have to ask someone.
Tuesday, August 31, 2010
Monday, August 30, 2010
8/27/2010 Friday - the Week off the Meds
The Dex experiment worked pretty well, I took them Sunday night around 8:00 and they lasted for me until into Tuesday. I got more work hours Monday and Tuesday than I had for a couple of weeks. Wednesday I started down again and by Thursday I had to go home and sleep by mid-morning although I do think I was coming down with something that helped my demise.
We went to St. George Thursday evening and I stopped at the Lab to get my blood taken for the full blood panel to see Dr. Te next Friday (9/3), what I didn't know was that it also includes a 24 hour urine sample, they gave me the collection jar and I have to finish that sometime this week before we go back up for that appointment.
Friday morning we went to Dr. Te's Office so I could get my monthly Arida bone treatment, it went well and Patty was able to take care of a couple of thing that she needed to do before coming back for me. That afternoon she went to Cedar to work and I stayed at Coral Canyon in case I had some side effects from the Arida, I don't think I did, I just slept a little and watched TV while she was gone although I didn't have much of an appetite when we stopped for dinner heading back to Vegas.
We went to St. George Thursday evening and I stopped at the Lab to get my blood taken for the full blood panel to see Dr. Te next Friday (9/3), what I didn't know was that it also includes a 24 hour urine sample, they gave me the collection jar and I have to finish that sometime this week before we go back up for that appointment.
Friday morning we went to Dr. Te's Office so I could get my monthly Arida bone treatment, it went well and Patty was able to take care of a couple of thing that she needed to do before coming back for me. That afternoon she went to Cedar to work and I stayed at Coral Canyon in case I had some side effects from the Arida, I don't think I did, I just slept a little and watched TV while she was gone although I didn't have much of an appetite when we stopped for dinner heading back to Vegas.
Monday, August 23, 2010
8/23/2010 Trying to Juggle Meds a little
Last week was not a great week, nothing bad happened, it was just that for my work week I couldn't seem to stay awake past about 10:30 am on any day so I didn't get a lot of working hours in. I would get up, go to work and begin my day and then run out of steam by mid-morning and have to come home. Dr. Te suggested I play around with when I take the Dex to see if I could get a couple of good days so that is what I'm trying this week by taking it Sunday night before I went to bed - I may need to back that up a little since I'm up at 4:00 writing this blog.
I completed the first cycle of the Revlimid yesterday and will be off it until next Saturday when I begin the second cycle. I definitely have more side effects, fatigue, heart burn and they seem to be some what cumulative as the cycle runs on so I'm really looking forward to this week to try to get back close to normal before starting the next cycle. I don't know what the combination of being off cycle and coming off the Dex on Wednesday will do to me, guess I'll have to wait and see.
I'm scheduled to get a full blood panel this week to see how the first cycle of Revlimid is doing for me, we're all hoping it's making progress on the right things, so that after a couple more cycles I'll be ready for the transplant.
I completed the first cycle of the Revlimid yesterday and will be off it until next Saturday when I begin the second cycle. I definitely have more side effects, fatigue, heart burn and they seem to be some what cumulative as the cycle runs on so I'm really looking forward to this week to try to get back close to normal before starting the next cycle. I don't know what the combination of being off cycle and coming off the Dex on Wednesday will do to me, guess I'll have to wait and see.
I'm scheduled to get a full blood panel this week to see how the first cycle of Revlimid is doing for me, we're all hoping it's making progress on the right things, so that after a couple more cycles I'll be ready for the transplant.
8/20/2010 A Word or Two on the Wedding
Last Saturday was a great day, and if it wasn't for several of us being late getting to the temple for the sealing ceremony, Amanda's hair dresser not showing up, Amanda's bouquet being delivered to the wrong location and a couple of other small issues it would have been perfect. But I have to give all the credit in the world to my little girl. She may have wanted to go bridezilla on the inside - but none of that made it to the surface, she was every bit the beautiful bride and put that aside to have a great time all day.
The temple wedding/sealing ceremony was very nice, and when it was over we all went outside and took family pictures. Then everyone was invited to a luncheon put on by Ryan's parents at one of our chapels where we ate with the bride and groom. Then we all went home to rest until the reception.
I had tried an experiment, I took my Dex about 8:00 pm Friday night hoping that they would kick in and help get me through the day. They did what they were suppose to do and lasted until well into the night.
The reception started out with a ring ceremony out on the lawn at Silverstone, I walked my daughter down the isle and her singles ward bishop said some very nice words, it was a good thing. That was the start of a very nice 3 hour party for about 150 of Amanda and Ryan's close friends and all our family. There are lots of details I'm leaving out, but overall it was a very good night, then the happy couple left to start their honeymoon.
The temple wedding/sealing ceremony was very nice, and when it was over we all went outside and took family pictures. Then everyone was invited to a luncheon put on by Ryan's parents at one of our chapels where we ate with the bride and groom. Then we all went home to rest until the reception.
I had tried an experiment, I took my Dex about 8:00 pm Friday night hoping that they would kick in and help get me through the day. They did what they were suppose to do and lasted until well into the night.
The reception started out with a ring ceremony out on the lawn at Silverstone, I walked my daughter down the isle and her singles ward bishop said some very nice words, it was a good thing. That was the start of a very nice 3 hour party for about 150 of Amanda and Ryan's close friends and all our family. There are lots of details I'm leaving out, but overall it was a very good night, then the happy couple left to start their honeymoon.
Sunday, August 15, 2010
8/15/2010 Sunday again, after the wedding
Here it is Sunday again, I meant to write something during the week but didn't make it. I'll try to do better.
I didn't have a great week, but it wasn't terrible either. Josh drove me up to my appointment with Dr. Te on Wednesday, I had a slight fever and he gave me some Cipro antibiotics to help with that. I had some chills and kept the fever Wednesday night and into Thursday, so I stayed home from work to try to recover to make sure I would be OK for the wedding on Saturday. By Friday I was feeling quite a bit better.
While at the appointment, we went over the results of the bone biopsy and latest blood tests, they confirmed that the Velcade was not very effective working on a couple of the critical areas that need to be improved a lot before going to Salt Lake. I have another round of complete blood work that will be run in a couple of weeks to look at what a full month on Revlimid, Dex and Lovenox will be doing for me. We will be hopeful that they are working in the right direction.
I'll do a separate posting to talk about the wedding. After a few hiccups, it went very well and Mr. and Mrs. Stewart are now in Maui on their honeymoon.
I didn't have a great week, but it wasn't terrible either. Josh drove me up to my appointment with Dr. Te on Wednesday, I had a slight fever and he gave me some Cipro antibiotics to help with that. I had some chills and kept the fever Wednesday night and into Thursday, so I stayed home from work to try to recover to make sure I would be OK for the wedding on Saturday. By Friday I was feeling quite a bit better.
While at the appointment, we went over the results of the bone biopsy and latest blood tests, they confirmed that the Velcade was not very effective working on a couple of the critical areas that need to be improved a lot before going to Salt Lake. I have another round of complete blood work that will be run in a couple of weeks to look at what a full month on Revlimid, Dex and Lovenox will be doing for me. We will be hopeful that they are working in the right direction.
I'll do a separate posting to talk about the wedding. After a few hiccups, it went very well and Mr. and Mrs. Stewart are now in Maui on their honeymoon.
Sunday, August 8, 2010
8/8/2010 A good week
I haven't blogged because there really wasn't anything too much to talk about. I had a good week and as the week went on I was getting over any of the side effects of last week's Arida treatment that I had. I still get tired, but other than a little heart burn or reflux, I don't seem to be developing any side effects from the Lovenox and Revlimid. I took my one day of Dex on Saturday this week and other than getting up a little early this morning, I slept through the night and woke up feeling pretty good today, good enough to make it to all 3 hours of church today without having to take a long nap after to recover.
We are just under a week to go until Amanda's wedding, I hope I can feel this good next Saturday, it will make the day much better for everyone - not having to worry about me.
I feel pretty much like myself today, as I have for the past couple of days, which doesn't happen too often. I go up to St. George for a doctor's appointment with Dr. Te this Wednesday, but it's just to make sure everything is going well, no treatments. Josh will drive me up, probably Tuesday night so I can give labs again, then we'll see Dr. Te on Wednesday and head back to Vegas. I should get the reports on where I am, or rather where my body is in respect to all the numbers they want it to be at in 2-3 months from now.
We are just under a week to go until Amanda's wedding, I hope I can feel this good next Saturday, it will make the day much better for everyone - not having to worry about me.
I feel pretty much like myself today, as I have for the past couple of days, which doesn't happen too often. I go up to St. George for a doctor's appointment with Dr. Te this Wednesday, but it's just to make sure everything is going well, no treatments. Josh will drive me up, probably Tuesday night so I can give labs again, then we'll see Dr. Te on Wednesday and head back to Vegas. I should get the reports on where I am, or rather where my body is in respect to all the numbers they want it to be at in 2-3 months from now.
Monday, August 2, 2010
8/2/2010 On the new medicines
The Lovenox came in on Saturday delivery so Saturday night I began taking the new medicine Protocol - 21 days on - 7 days off - of Lovenox self shot each evening and then Revlimid 25 mg pill before bed as I was advised to do to minimize the potential side effects. At the same time I'm also changing the Dex regiment to only one day a week, I took it yesterday Sunday morning so that could explain why this post is at 3:30 am, I will probably play with the day so that if each one gets me up, it won't be on a back to work night, maybe I'll take it each Saturday morning instead.
I had a good weekend, I think the sedative and coming off the Dex last week finally ran out and I started to stay up more and more, we went to a movie on Saturday afternoon, I managed to stay up for the entire movie, we saw the "Dinner for Schmucks" which was wrong in many ways but was very funny so it was hard to sleep and laugh at the same time.
We had the kids over for dinner on Sunday night and did some burger grilling, Josh did a lot of the cooking and they turned out good. It's only 2 weeks until Amanda's wedding and some nerves are beginning to show all around, we are looking forward to Saturday August 14th and beyond.
I took the second day of the new meds last night, so far no side effects to speak of, I hope to lose some of the lower leg ache I had been feeling with the Velcade, we'll have to see. I don't have any doctor's appointments this week, but need to get some labs done. I will probably need to make a quick trip to St. George sometime this week to get some standing lab work done and then after the appointment with Dr. Te next week make arrangements that every other week that I don't have to go to St. George, I'll find a lab down here to get the off week labs. They have to monitor my blood fairly closely because of all the new meds for the next several weeks, so I'll have to make the decision on how to handle that after the wedding.
I had a good weekend, I think the sedative and coming off the Dex last week finally ran out and I started to stay up more and more, we went to a movie on Saturday afternoon, I managed to stay up for the entire movie, we saw the "Dinner for Schmucks" which was wrong in many ways but was very funny so it was hard to sleep and laugh at the same time.
We had the kids over for dinner on Sunday night and did some burger grilling, Josh did a lot of the cooking and they turned out good. It's only 2 weeks until Amanda's wedding and some nerves are beginning to show all around, we are looking forward to Saturday August 14th and beyond.
I took the second day of the new meds last night, so far no side effects to speak of, I hope to lose some of the lower leg ache I had been feeling with the Velcade, we'll have to see. I don't have any doctor's appointments this week, but need to get some labs done. I will probably need to make a quick trip to St. George sometime this week to get some standing lab work done and then after the appointment with Dr. Te next week make arrangements that every other week that I don't have to go to St. George, I'll find a lab down here to get the off week labs. They have to monitor my blood fairly closely because of all the new meds for the next several weeks, so I'll have to make the decision on how to handle that after the wedding.
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