The bone biopsy on Wednesday went very well, Josh took me up on Tuesday night and then to Dr. Te's Office on Wednesday morning, they got me all set up to go and then gave me the knock out drugs so they could drill in for the biopsy sample. It must have worked since I don't remember anything for a couple of hours when I got dressed to leave. I'll get the results in a couple of weeks at my next Dr. appointment.
The Revlimid came on Thursday like it was suppose to and now I'm waiting on Lovenox, an anti-coagulant drug to guard against some possible Revlimid side effects. It's suppose to be here either Saturday or Monday and then my switch to the new medication will be complete.
Patty and I went back to St. George again Thursday evening for labs and then I went into Dr. Te's Office this morning for the Arida bone medicine, so for two hours I sat in the lounge chair taking the medicine. It all went well and I haven't seen any of the side effects that I have seen for this drug before. Although I'm still trying to get rid of the rest of the sedative for the bone biopsy, I've been sleeping on and off for the past few days, maybe one more good night sleep will help me shake it.
Friday, July 30, 2010
Tuesday, July 27, 2010
7/27/2010 Back to St. George tonight
I get to make 3 trips to St. George this week. The bone biopsy I was suppose to have got postponed from Monday until Wednesday because we were waiting to find out when I would be getting the Revlimid medicine delivered to me. the Revilimid will be delivered on Thursday so I get to have Josh take me to St. George tonight to get the biopsy done tomorrow and then we'll get to go up Thursday night again so I can have the Arida bone medicine on Friday, I can't get it any earlier because of insurance purposes.
Got some crappy news, I didn't qualify for any co-pay assistance for the Revlimid, so it's a good thing I've been paying on the Canseco Cancer Supplemental insurance for the past 15 years, it will probably end up covering the rest of the co-pay so I can't complain too much.
It's good to have Josh here for a few weeks, I don't know what I would have done tomorrow since Patty is already committed for working, he can pour me back into the car and drive me back to Vegas tomorrow after Dr. Te's Office gets through with me.
Got some crappy news, I didn't qualify for any co-pay assistance for the Revlimid, so it's a good thing I've been paying on the Canseco Cancer Supplemental insurance for the past 15 years, it will probably end up covering the rest of the co-pay so I can't complain too much.
It's good to have Josh here for a few weeks, I don't know what I would have done tomorrow since Patty is already committed for working, he can pour me back into the car and drive me back to Vegas tomorrow after Dr. Te's Office gets through with me.
Friday, July 23, 2010
7/23/2010 Back from St. George - I think
It has been a very full and confusing week, where we ended up wasn't very close to where we started, but everything usually happens for a reason and so all this did too.
On Monday we traveled to Coral Canyon and spent the night, then we went to my appointment on Tuesday morning. Every thing happened pretty much like we thought it would. Dr. Te talked to us and we were informed I would be changing to the Revlimid medication. He also decided that because of changing it was time to do another bone and marrow biopsy to see what was really happening inside of me and it would give a good baseline for the progress of the Velcade and now the Revlimid. So we coordinated with Christi, Dr. Te's medical assistant to schedule the bone biopsy for next Monday and waited for the Pharmacy to call us about getting the Revlimid shipped to us. And then everything changed again.
We headed back for Vegas and got home in good time. I got a call from Christi letting me know the good news and the not so good news. The good news - my insurance will cover 80% of the cost of the Revlimid (there was debate whether they would). The not so good news - each cycle is 21 pills and they cost about $360 each for a prescription co-pay of around $1500 each month. She let me know the Pharmacy together with some cancer funds have access to some programs to help pay that but that it might take a few days to get everything sorted out. So a while later Dr. Te called and let me know he had talked to Dr. Petersen in Salt Lake and they both decided it would be better if I didn't go another week without any treatment at all - It had been my week off the week previous. So we scheduled a quick trip to St. George for Thursday to get a Velcade treatment since his office was closed on Friday in honor of Pioneer Day.
I got a call on Wednesday from the Pharmacy to verify the information that Christi had told us about the price of the Revlimid and she told me someone else from her company would be calling me to get information so they could submit my case to one of the cancer funds to see if we could get some assistance with the co-pay. This should happen sometime Thursday or Friday.
Thursday morning we got up, Patty had some work things she had to do until 9:30 or 10:00 so after that we headed for St. George. When we got up there, I decided I needed some food on my stomach before the treatment so we stopped into a place to eat. While there, I got a call from the Pharmacy to get my information to submit to the cancer funds to get the assistance. The lady sounded pretty confident that we would be getting some good help, so I gave her the information and we are suppose to hear by Monday whether or not we get the assistance. Thank goodness for my Canseco supplemental insurance, it will help with anything that doesn't get covered by the assistance.
We went to treatment and everything was good. They started asking about my schedule next week. I mentioned that it would be good if I could have the treatment on the same day as the biopsy (Monday) because Patty had some work she needed to do on Tuesday. They started working that out, but they finally figured out that somewhere Dr. Te had canceled the biopsy for Monday, he wasn't in the office right then, so we couldn't ask him why, but we will ask on Monday during treatment when or if the biopsy will be re-scheduled.
So, just to keep it straight in my own mind, we'll go to St. George Sunday evening to get labs done and then do a Velcade treatment Monday morning. Then sometime Monday or Tuesday we should get the word on the assistance and get the Revlimid shipped to me. I don't know when it will get here, so I'll go back up Thursday evening, get labs done and then on Friday have a Velcade and Arida (the bone medicine) treatment and then sometime after that begin the 28 day cycle (21 on - 7 off) of the Revlimid.
I've been feeling very good the last few days since all the medications are pretty much out of my system, so we've enjoyed that, but now were back on treatment and looking forward (being sarcastic) to everything that goes with that. I hope everyone has a good Pioneer Days weekend and is safe.
On Monday we traveled to Coral Canyon and spent the night, then we went to my appointment on Tuesday morning. Every thing happened pretty much like we thought it would. Dr. Te talked to us and we were informed I would be changing to the Revlimid medication. He also decided that because of changing it was time to do another bone and marrow biopsy to see what was really happening inside of me and it would give a good baseline for the progress of the Velcade and now the Revlimid. So we coordinated with Christi, Dr. Te's medical assistant to schedule the bone biopsy for next Monday and waited for the Pharmacy to call us about getting the Revlimid shipped to us. And then everything changed again.
We headed back for Vegas and got home in good time. I got a call from Christi letting me know the good news and the not so good news. The good news - my insurance will cover 80% of the cost of the Revlimid (there was debate whether they would). The not so good news - each cycle is 21 pills and they cost about $360 each for a prescription co-pay of around $1500 each month. She let me know the Pharmacy together with some cancer funds have access to some programs to help pay that but that it might take a few days to get everything sorted out. So a while later Dr. Te called and let me know he had talked to Dr. Petersen in Salt Lake and they both decided it would be better if I didn't go another week without any treatment at all - It had been my week off the week previous. So we scheduled a quick trip to St. George for Thursday to get a Velcade treatment since his office was closed on Friday in honor of Pioneer Day.
I got a call on Wednesday from the Pharmacy to verify the information that Christi had told us about the price of the Revlimid and she told me someone else from her company would be calling me to get information so they could submit my case to one of the cancer funds to see if we could get some assistance with the co-pay. This should happen sometime Thursday or Friday.
Thursday morning we got up, Patty had some work things she had to do until 9:30 or 10:00 so after that we headed for St. George. When we got up there, I decided I needed some food on my stomach before the treatment so we stopped into a place to eat. While there, I got a call from the Pharmacy to get my information to submit to the cancer funds to get the assistance. The lady sounded pretty confident that we would be getting some good help, so I gave her the information and we are suppose to hear by Monday whether or not we get the assistance. Thank goodness for my Canseco supplemental insurance, it will help with anything that doesn't get covered by the assistance.
We went to treatment and everything was good. They started asking about my schedule next week. I mentioned that it would be good if I could have the treatment on the same day as the biopsy (Monday) because Patty had some work she needed to do on Tuesday. They started working that out, but they finally figured out that somewhere Dr. Te had canceled the biopsy for Monday, he wasn't in the office right then, so we couldn't ask him why, but we will ask on Monday during treatment when or if the biopsy will be re-scheduled.
So, just to keep it straight in my own mind, we'll go to St. George Sunday evening to get labs done and then do a Velcade treatment Monday morning. Then sometime Monday or Tuesday we should get the word on the assistance and get the Revlimid shipped to me. I don't know when it will get here, so I'll go back up Thursday evening, get labs done and then on Friday have a Velcade and Arida (the bone medicine) treatment and then sometime after that begin the 28 day cycle (21 on - 7 off) of the Revlimid.
I've been feeling very good the last few days since all the medications are pretty much out of my system, so we've enjoyed that, but now were back on treatment and looking forward (being sarcastic) to everything that goes with that. I hope everyone has a good Pioneer Days weekend and is safe.
Sunday, July 18, 2010
7/18/2010 Sunday, Back from Salt Lake
We had a good day Friday in Salt Lake and had a good dinner with the Pronk family Friday evening, we got up Saturday and made out way back home, we stopped in Parowan to say Hi to mom and dad and Bruce and Cara and then drove back. We were thinking about staying in Coral Canyon Saturday night, but decided to go on home. I think it was a good decision even though I am drained and did virtually nothing today.
We're still soaking in what Dr. Petersen said to us at LDS Hospital, it's getting easier to take and makes sense, we're hopeful that the new medicine will do what we need it to.
I am still trying to recover from the fatigue of traveling, I don't know why it hit me so hard (I have a couple of ideas), but the travel, sleeping in strange beds, different food, too much food and generally not doing anything I normally do really ripped me up. I am very hopeful that recovery is coming tomorrow. Meanwhile, we'll rest and recover the best we can.
We are still on track for taking a trip to St. George Monday evening for labs and then my doctor's appointment with Dr. Te on Tuesday morning. We should find out then what our schedule will be for the next couple of months.
I do want to thank Patty and Amanda, my wonderful wife and daughter for taking care of me, taking us to Salt Lake, driving and generally doing everything to make our trip the best it could be. I love you both very much and can't imagine going through any of this without their support and the support of the rest of our family.
We're still soaking in what Dr. Petersen said to us at LDS Hospital, it's getting easier to take and makes sense, we're hopeful that the new medicine will do what we need it to.
I am still trying to recover from the fatigue of traveling, I don't know why it hit me so hard (I have a couple of ideas), but the travel, sleeping in strange beds, different food, too much food and generally not doing anything I normally do really ripped me up. I am very hopeful that recovery is coming tomorrow. Meanwhile, we'll rest and recover the best we can.
We are still on track for taking a trip to St. George Monday evening for labs and then my doctor's appointment with Dr. Te on Tuesday morning. We should find out then what our schedule will be for the next couple of months.
I do want to thank Patty and Amanda, my wonderful wife and daughter for taking care of me, taking us to Salt Lake, driving and generally doing everything to make our trip the best it could be. I love you both very much and can't imagine going through any of this without their support and the support of the rest of our family.
Thursday, July 15, 2010
7/15/2010 We're in Salt Lake
Stayed in Parowan last night, got up this morning and drove up to Salt Lake to meet with LDS Hospital people at 11:00 this morning which lasted until about 2:30.
We met with various staff at LDS and they were all very nice, we met with Dr. Petersen, the director of the BMT - Bone Marrow Transplant center located on the 8th floor of the hospital. We got some news that changes things a little, my "m" spike, or the proteins that identify me as having multiple myeloma has gone up again a little, so chances are I will be changing medication to something called Revlimid which is taken orally with the Dex that I already take. It has shown to be stronger in dealing with mm protein spikes. I'll find out on Tuesday exactly how it will work and I'll post to let everyone know. It looks like the treatments will last longer than originally we thought, so we probably won't end up in Salt Lake for the transplant until at least into October.
The hospital will be sending me a letter next week, so after talking to Dr. Te on Tuesday and getting the letter from the hospital after that, we'll know more what we're talking about. I can't say that it wasn't a little disappointing, but after Dr. Petersen explain why the numbers have to be better for the transplants to work, I think we all understood a little better and I'm determined to do what it takes to give us the best chance for a successful transplant scenario.
We're hanging out in Salt Lake tomorrow, planning on having dinner with the Pronks tomorrow night and starting for home on Saturday morning, depends on how soon we make it out of Salt Lake on Saturday whether we make it all the way to Vegas or wait until Sunday to finish the trip.
We met with various staff at LDS and they were all very nice, we met with Dr. Petersen, the director of the BMT - Bone Marrow Transplant center located on the 8th floor of the hospital. We got some news that changes things a little, my "m" spike, or the proteins that identify me as having multiple myeloma has gone up again a little, so chances are I will be changing medication to something called Revlimid which is taken orally with the Dex that I already take. It has shown to be stronger in dealing with mm protein spikes. I'll find out on Tuesday exactly how it will work and I'll post to let everyone know. It looks like the treatments will last longer than originally we thought, so we probably won't end up in Salt Lake for the transplant until at least into October.
The hospital will be sending me a letter next week, so after talking to Dr. Te on Tuesday and getting the letter from the hospital after that, we'll know more what we're talking about. I can't say that it wasn't a little disappointing, but after Dr. Petersen explain why the numbers have to be better for the transplants to work, I think we all understood a little better and I'm determined to do what it takes to give us the best chance for a successful transplant scenario.
We're hanging out in Salt Lake tomorrow, planning on having dinner with the Pronks tomorrow night and starting for home on Saturday morning, depends on how soon we make it out of Salt Lake on Saturday whether we make it all the way to Vegas or wait until Sunday to finish the trip.
Sunday, July 11, 2010
7/11/2010 Sunday - Here comes Salt Lake
It's been a few days since I posted, don't know why, I guess I just let life get in the way of life.
Patty's week didn't get any easier after Monday and Tuesday, she was running all week and I felt bad that my little condition just added to her stress and lack of time. We ended up taking Addie to St. George with us for treatment because Amanda's Zoey was having some problems and we didn't need two sick dogs in the family. Addie is a pretty good traveler and we've packed her around enough this summer where she doesn't stress too much over where she is at the time - which is one of the issues we needed to work with her this summer. Bruce and Cara were at the house so we got to see and spend time with them on Thursday night.
Friday morning's treatment was a little strange, it was very busy, not sure why, usually Fridays are pretty slow and quiet, but maybe it was still busy because of the office being closed on Monday. And besides being busy, they were short a nurse so it took a long time to get me hooked up and running, it went good once I was hooked up. I met another lady that has mm and is now in remission doing the follow up treatments. I wasn't able to ask her all my questions, hope I see her again so I can ask a little more about her experiences.
I think the side effects from treatments are a little compounding over time, it seems that I use to bounce back between treatments, but the fatigue is getting to be a regular thing, with some days being OK and others a little worse. I've got a week off coming, hope I can bounce back and have a good trip to Salt Lake this week to visit with the staff and doctors at LDS Hospital and spend a couple of days up there with Patty and Amanda.
Patty's week didn't get any easier after Monday and Tuesday, she was running all week and I felt bad that my little condition just added to her stress and lack of time. We ended up taking Addie to St. George with us for treatment because Amanda's Zoey was having some problems and we didn't need two sick dogs in the family. Addie is a pretty good traveler and we've packed her around enough this summer where she doesn't stress too much over where she is at the time - which is one of the issues we needed to work with her this summer. Bruce and Cara were at the house so we got to see and spend time with them on Thursday night.
Friday morning's treatment was a little strange, it was very busy, not sure why, usually Fridays are pretty slow and quiet, but maybe it was still busy because of the office being closed on Monday. And besides being busy, they were short a nurse so it took a long time to get me hooked up and running, it went good once I was hooked up. I met another lady that has mm and is now in remission doing the follow up treatments. I wasn't able to ask her all my questions, hope I see her again so I can ask a little more about her experiences.
I think the side effects from treatments are a little compounding over time, it seems that I use to bounce back between treatments, but the fatigue is getting to be a regular thing, with some days being OK and others a little worse. I've got a week off coming, hope I can bounce back and have a good trip to Salt Lake this week to visit with the staff and doctors at LDS Hospital and spend a couple of days up there with Patty and Amanda.
Tuesday, July 6, 2010
7/6/2010 Treat, ment after Holiday Weekend
I had Monday off work, Patty didn't, she had to work at two stores, should have been 3 but couldn't work the third into the mix - no time. So we got out of town a little later than we like to, but it was plenty early enough, I drove up to give her a rest. Josh left about 4:00 to head back to Phoenix, he got caught going over the dam and took him a while to get home, but he made it safely.
We had Pizza with Bruce, Cara and Tyler, Cara had to work on Monday also and so Bruce and Tyler were down, we had a pretty good night, but went to bed early.
Tuesday, this morning was treatment, Dr. Te's Office was busier than normal since they were closed yesterday. The nurses did a good job keeping up with the extra demands, but they were off their game just a little as it took 4 different tries before she found a good vein to give me treatment. Once they got me hooked up, everything worked real well and I was out of there in about an hour.
We met Mom and Dad for lunch at Applebees and talked with them for quite a while, they said they came down to see us and to make a summer run to Costco. It was good to see them and they brought us some additional information to send into the Downwinder's claim office, which was very nice.
Patty and I ran a a couple of errands, went back to Coral Canyon to pick up our stuff and then headed for home. We got home safe and then ran over to Amanda's to get Addie - she is so confused as to where she lives and who are her people, I think the only thing she knows is where her cage goes - so does she. One more treatment before we go to Salt Lake next week for our meeting at LDS Hospital.
We had Pizza with Bruce, Cara and Tyler, Cara had to work on Monday also and so Bruce and Tyler were down, we had a pretty good night, but went to bed early.
Tuesday, this morning was treatment, Dr. Te's Office was busier than normal since they were closed yesterday. The nurses did a good job keeping up with the extra demands, but they were off their game just a little as it took 4 different tries before she found a good vein to give me treatment. Once they got me hooked up, everything worked real well and I was out of there in about an hour.
We met Mom and Dad for lunch at Applebees and talked with them for quite a while, they said they came down to see us and to make a summer run to Costco. It was good to see them and they brought us some additional information to send into the Downwinder's claim office, which was very nice.
Patty and I ran a a couple of errands, went back to Coral Canyon to pick up our stuff and then headed for home. We got home safe and then ran over to Amanda's to get Addie - she is so confused as to where she lives and who are her people, I think the only thing she knows is where her cage goes - so does she. One more treatment before we go to Salt Lake next week for our meeting at LDS Hospital.
Saturday, July 3, 2010
7/3/2010 Treatment Report - Happy 4th of July
We made it up Thursday night to have dinner with Bruce and Cara and Kimberly for Bruce's birthday. Kim came down because she was on the way to the LV airport to fly to Mexico City to join her family which had been in Mexico for a couple of weeks.
Friday we all got up, Patty had to work with a new person at Smith's so she dropped me off at treatment, it was my long treatment where I got the Arida for bone repair and then the nausea, Velcade and then saline to mix it all up. The good news was that the Procrit that I was suppose to get was held back because it had worked so well that my numbers were up to a level they decided I didn't need it. Two weeks earlier my iron had been 27, last week it was 30 and Friday it was 32 which was good. The treatment was about 3 1/2 hours, but it all went well. Patty was still at work, so Bruce and Kim came to pick me up and we went to lunch with Cara.
Kim and I went back to Coral Canyon to wait for Patty to be done working, when she got done and got back, we loaded up and headed to Vegas with Kim. Then we went to dinner with Amanda, Ryan and Matt, showed Kim Matt's new house and then took her to the airport to catch her flight. She had about 10 - 12 more hours of travel ahead of her, hopefully it all went well.
Josh came up last night, Addie was happy to see him. He made pretty good time coming up, and got here safe. He has Monday off so will head back to Phoenix then.
Today we are going over to Amanda's to enjoy the 4th weekend. I'm feeling pretty good, but I am fatigued for some reason, hope not to be a drag on their fun today. I've got one more week of treatment until we take our trip to Salt Lake to check out the facilities for my treatment up there. Hope everyone has a great and safe holiday weekend this weekend.
Friday we all got up, Patty had to work with a new person at Smith's so she dropped me off at treatment, it was my long treatment where I got the Arida for bone repair and then the nausea, Velcade and then saline to mix it all up. The good news was that the Procrit that I was suppose to get was held back because it had worked so well that my numbers were up to a level they decided I didn't need it. Two weeks earlier my iron had been 27, last week it was 30 and Friday it was 32 which was good. The treatment was about 3 1/2 hours, but it all went well. Patty was still at work, so Bruce and Kim came to pick me up and we went to lunch with Cara.
Kim and I went back to Coral Canyon to wait for Patty to be done working, when she got done and got back, we loaded up and headed to Vegas with Kim. Then we went to dinner with Amanda, Ryan and Matt, showed Kim Matt's new house and then took her to the airport to catch her flight. She had about 10 - 12 more hours of travel ahead of her, hopefully it all went well.
Josh came up last night, Addie was happy to see him. He made pretty good time coming up, and got here safe. He has Monday off so will head back to Phoenix then.
Today we are going over to Amanda's to enjoy the 4th weekend. I'm feeling pretty good, but I am fatigued for some reason, hope not to be a drag on their fun today. I've got one more week of treatment until we take our trip to Salt Lake to check out the facilities for my treatment up there. Hope everyone has a great and safe holiday weekend this weekend.
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