What a busy few days. An oncologist came by Rassie's room yesterday and his Fellow (resident type doctor) came by today. He says he does not see any reason to prolong trying to get Rassie on the Gleevec. Another doctor had initially mentioned waiting until the whole rehab problem was over with. I also talked to a case manager for the oncology department. I have to get our insurance card to her so she can make a copy front and back. Not sure what happened to the first copy. They are going to try getting Gleevec approved through our insurance company again. *fingers, eyes and toes crossed* and of course lots of praying that it goes through this time! The doctor that stopped by said that Rassie has the 926 strain of CML. I am going to have to double check that number because I can't remember for sure. He also said that they were definite on it being CML and really the only reason for a bone marrow biopsy now is for completion of diagnosis in his charts. I know Rassie does not really want to do the biopsy but it's just one of those things he has to do.
On to the few hours get away! The physical therapists had Rassie call me at noon today. They wanted me to be there at 1 for his PT time. Bad news! Both babies were down for a nap and there was no way I was waking both of them. But they said that was fine and so I have to be there at 9 in the morning. What they really want is my car! They are going to see how Rassie transitions from the wheel chair to the car and back again. If the transition goes well they are going to talk with the doctor about getting a pass to come home for a few hours on Sunday. YAY! We have a Dodge Journey that I drive. For those of you who don't know its a cross over between a SUV and a Mini Van. At least that's what I am told. Rassie and I both agree it might be too high to transition so we are going with the PT Cruiser instead. It should be a perfect height and make the transition alot easier, plus it still has tons of room. Now all I have to do is switch out the carseats. I am so excited and hope the transition goes well!
Oh, and there's more progress. Rassie walked the entire length of the parallel bars yesterday. I forgot to ask about today because we went to a little (lobby) Halloween Party and outside for a bit. I have also noticed when I help him move his legs that he is using them more on his own. I can tell that he's putting weight on his left leg and that he is trying to lift his right leg more by himself. I told him that I had noticed this and that I am so very proud of him for working so hard at it.
Slow progress is still PROGRESS and that's what counts.
Friday, October 30, 2009
Wednesday, October 28, 2009
Taking Steps
First, I want to thank everyone who is following our story and praying for Rassie and our family. It means so mcuh.
Rassie's CML is doing ok. Dr. R lowered his dosage of hydroxyurea a little too much. His white count went up again to 58k yesterday. The physical therapy doctor went ahead and increased the dosage. Next Monday, November 2nd. We will meet with the oncologist and have Rassie's first official appointment. Hopefully we can get the Gleevec worked out then. It may not happen right away but the good news is the hydroxyurea is keeping it under control in the meantime.
Rassie's back injury is so-so. He is still unable to really feel his right leg and both feet. Just pins and needles. But he is making progress of sometime. He is able to move his left leg more without the pain in his back. He seems to think his left foot is waking up more. And yesterday he took his first TWO steps! I am so very proud of him. Today he took a total of TEN steps! I am so excited for him. They physical therapists helped him up to the parallel bars twice. The first time he took four steps and the second time he took 6 steps. He says that all the pins and needles in his right foot and leg turn into nails and a sharp pain goes up all the way from his foot up to his back. He says its very painful but he knows he has to try so that he can and will get better. I have to tell you though, these are extremely supported steps. He has a belt they put around his waist to help hold him up, plus the parallel bars and then the two physical therapists who are right there along side of him the entire time. They PT's do have to help him to get on the bars. They have to lock his legs with their legs. What this means is one stands in front of him and puts their toes to his toes and their knees to his knees and then they pull him up.
He is still doing physical therapy twice a day and occupational therapy is down to a group therapy once a day. Occupation therapy thinks he is doing great and doesn't need anymore therapy in the area of being able to take care of himself. As for the physical therapy, he still has a ways to go. But the progress he is making is just amazing and I will take anything we can get right now. Did I mention how proud of him I am?! Tuesday he has an elvalutaion with the rehab floor doctors. They will make their decision then on whether he gets to come home and continue with rehab as an outpatient or if he needs to stay another week.
That's our update for now.
Rassie's CML is doing ok. Dr. R lowered his dosage of hydroxyurea a little too much. His white count went up again to 58k yesterday. The physical therapy doctor went ahead and increased the dosage. Next Monday, November 2nd. We will meet with the oncologist and have Rassie's first official appointment. Hopefully we can get the Gleevec worked out then. It may not happen right away but the good news is the hydroxyurea is keeping it under control in the meantime.
Rassie's back injury is so-so. He is still unable to really feel his right leg and both feet. Just pins and needles. But he is making progress of sometime. He is able to move his left leg more without the pain in his back. He seems to think his left foot is waking up more. And yesterday he took his first TWO steps! I am so very proud of him. Today he took a total of TEN steps! I am so excited for him. They physical therapists helped him up to the parallel bars twice. The first time he took four steps and the second time he took 6 steps. He says that all the pins and needles in his right foot and leg turn into nails and a sharp pain goes up all the way from his foot up to his back. He says its very painful but he knows he has to try so that he can and will get better. I have to tell you though, these are extremely supported steps. He has a belt they put around his waist to help hold him up, plus the parallel bars and then the two physical therapists who are right there along side of him the entire time. They PT's do have to help him to get on the bars. They have to lock his legs with their legs. What this means is one stands in front of him and puts their toes to his toes and their knees to his knees and then they pull him up.
He is still doing physical therapy twice a day and occupational therapy is down to a group therapy once a day. Occupation therapy thinks he is doing great and doesn't need anymore therapy in the area of being able to take care of himself. As for the physical therapy, he still has a ways to go. But the progress he is making is just amazing and I will take anything we can get right now. Did I mention how proud of him I am?! Tuesday he has an elvalutaion with the rehab floor doctors. They will make their decision then on whether he gets to come home and continue with rehab as an outpatient or if he needs to stay another week.
That's our update for now.
Monday, October 26, 2009
Not Much to Update On
There's not much to update on. Rassie's white count went up a little from 17k to 30k. Could be they went to low on his hydroxyurea or could be that his bone marrow just let off extra that day. He has an oncology appointment rescheduled for November 2nd. If he is still in the hospital they will arrange for him to be taken to the appointment.
As for his back injury. There's not much of an update. He's in the rehab unit. He does 1.5 hours of physcial rehab and 1.5 hours of occupational rehab a day. Sometimes it is group therapy and they talk about things. They are still playing around with his pain meds to see what works best for him. They rearranged the meds today and Rassie seems to think they are working a little better. It still hurts him alot to try to move his right leg (at the hip joint) . He said it is becoming easier to move the left leg, less painful. Rassie also thinks the pins and needles in his left foot seems to be getting better. He hasn't really noticed any improvement in the entire right legt. (The right leg is the one that's all pins and needles, not just the foot). They are still thinking a total of 2 weeks in the rehab unit before they send him home. They want to make sure his pain is under control and he is as capable as possible of taking care of himself and being independent.
That's about all for now. I'll update you when I have more news.
As for his back injury. There's not much of an update. He's in the rehab unit. He does 1.5 hours of physcial rehab and 1.5 hours of occupational rehab a day. Sometimes it is group therapy and they talk about things. They are still playing around with his pain meds to see what works best for him. They rearranged the meds today and Rassie seems to think they are working a little better. It still hurts him alot to try to move his right leg (at the hip joint) . He said it is becoming easier to move the left leg, less painful. Rassie also thinks the pins and needles in his left foot seems to be getting better. He hasn't really noticed any improvement in the entire right legt. (The right leg is the one that's all pins and needles, not just the foot). They are still thinking a total of 2 weeks in the rehab unit before they send him home. They want to make sure his pain is under control and he is as capable as possible of taking care of himself and being independent.
That's about all for now. I'll update you when I have more news.
Wednesday, October 21, 2009
STC-4 Here We COME!
Rassie is getting moved to STC -4 today (special treatment center, floor 4). That's the rehab unit! We are super excited about this. The attending doctor for the rehab unit thinks that Rassie will only be there 2 weeks before he comes home. I am hoping sooner. Their goal to get him home is to get him to be as independent as possible. So that does not mean he has to be walking before he comes home just mobile. Walking will come with time but he is making progress. He is already able to get himself to the wheel chair with minimal help. He also is able to get himself to the bathroom and the shower. All these are good, positive things! Today the physical therapist helped him to stand twice with the walker. As painful as it might be, he did it. I am very proud of him.
That's my short update of the day. No new news on the CML.. Since his numbers are doing well its on the back burnere for a short time. He is still on the hydroxyurea and allopurinol though.
That's my short update of the day. No new news on the CML.. Since his numbers are doing well its on the back burnere for a short time. He is still on the hydroxyurea and allopurinol though.
Tuesday, October 20, 2009
Rehab is in the near future
Rassie's white count is still hanging in there at 17k as of today. Not bad at all.
Rehab is in the near future for Rassie. They really want to get him moved down to the rehab unit of the hospital. This excites me. I am sure it excites Rassie too he just doesn't show it as much. He still has a little bit to go before he gets there. First, they want him on oral pain meds only and IV free. It is in the orders that he can get pain meds through the IV if needed but so far he is hanging in strong since yesterday with oral meds only! Second, he has to be up to doing 3 hours of physical therapy a day. This doesn't mean 3 hours consecutively, just throughout the day it needs to add up to 3 hours worth. I really do have faith that Rassie can do this. Once he gets moved to the rehab until we will only be able to visit between the hours of 5 and 9 because they do therapy sessions during the day. I can so handle this if it means getting my husband better and home!
Today two physical therapists came in. They helped Rassie scoot to the edge of the bed and stand up using the walker. You have no idea how AWESOME that is!!!!! His feet and right leg are still pins and needles but the fact that he was able to do this is just....WOW! I am so very proud of him.
I cannot wait for the day I update you guys and he's moved to the rehab unit and even better the day I update to say he's coming home!!!
Rehab is in the near future for Rassie. They really want to get him moved down to the rehab unit of the hospital. This excites me. I am sure it excites Rassie too he just doesn't show it as much. He still has a little bit to go before he gets there. First, they want him on oral pain meds only and IV free. It is in the orders that he can get pain meds through the IV if needed but so far he is hanging in strong since yesterday with oral meds only! Second, he has to be up to doing 3 hours of physical therapy a day. This doesn't mean 3 hours consecutively, just throughout the day it needs to add up to 3 hours worth. I really do have faith that Rassie can do this. Once he gets moved to the rehab until we will only be able to visit between the hours of 5 and 9 because they do therapy sessions during the day. I can so handle this if it means getting my husband better and home!
Today two physical therapists came in. They helped Rassie scoot to the edge of the bed and stand up using the walker. You have no idea how AWESOME that is!!!!! His feet and right leg are still pins and needles but the fact that he was able to do this is just....WOW! I am so very proud of him.
I cannot wait for the day I update you guys and he's moved to the rehab unit and even better the day I update to say he's coming home!!!
Monday, October 19, 2009
Not Much News Today
So there's isn't much news today in the way of Rassie's CML. They didn't do labs today because his numbers are looking so well there really isn't a need to do them everyday. He was scheduled to only do them once a week anyways. If it weren't for the back injury they would not have been doing them everyday .
So here we are a week and a day after the accident and there still isn't any improvement. After a nurse failed to do her job yesterday. Rassie was left waiting in a wheel chair for over 2 hours for sheets to be put on his bed so he could get back into it, get the pressure off of his back and his feet propped back up. It caused both legs to go numb from the hips down and tremendous swelling. After asking to speak to a charge nurse, Rassie's nurse had sheets put on his bed and then left him to move himself from the wheel chair to the bed. He's able to move his upper body over but having no feeling in his legs he is still unable to move them back and forth from bed to wheel chair and vice versa.. So he had to wait some more! I was at home with the babies so I was not happy to hear about this. It also caused his lower back to swell up and bruise. ( I will try to get a picture uploaded later but I must warn you it looks nasty) The doctors seem to think that leaving him in the wheelchair so long aggitated something in his back and they also said it was very unacceptable of the nurse to do that. They sent him for another ct scan today. This time they did not use contrast. And they also did an ultrasound on both legs to make sure they were free from blood clots. All we're waiting for are the ct results. I plan on going to the hospital in the morning to catch the doctors and ask all the questions that Rassie forgets.
For now, all I can say is Keep Praying!
So here we are a week and a day after the accident and there still isn't any improvement. After a nurse failed to do her job yesterday. Rassie was left waiting in a wheel chair for over 2 hours for sheets to be put on his bed so he could get back into it, get the pressure off of his back and his feet propped back up. It caused both legs to go numb from the hips down and tremendous swelling. After asking to speak to a charge nurse, Rassie's nurse had sheets put on his bed and then left him to move himself from the wheel chair to the bed. He's able to move his upper body over but having no feeling in his legs he is still unable to move them back and forth from bed to wheel chair and vice versa.. So he had to wait some more! I was at home with the babies so I was not happy to hear about this. It also caused his lower back to swell up and bruise. ( I will try to get a picture uploaded later but I must warn you it looks nasty) The doctors seem to think that leaving him in the wheelchair so long aggitated something in his back and they also said it was very unacceptable of the nurse to do that. They sent him for another ct scan today. This time they did not use contrast. And they also did an ultrasound on both legs to make sure they were free from blood clots. All we're waiting for are the ct results. I plan on going to the hospital in the morning to catch the doctors and ask all the questions that Rassie forgets.
For now, all I can say is Keep Praying!
Sunday, October 18, 2009
The weekend
Rassie's white count was down to 17,000 today. I cannot believe what progress he has made with that. The Doctors are very impressed. It makes them a little less concerned about the leukemia for the time being so that they can focus on his back injury.
Speaking of his injury. Things are about the same. No feeling in either foot, except for the tingling. And the right leg is still numb. He still has lots of pain and is unable to stand or walk. He has a knot on his lower back where the cable hit him. It seems to be getting bigger. The physical therapist seems to think it is fluid build up. Dr. R said she doesn't think its fluid and she will let the nueroligist know tomorrow, Monday. So, pretty much the only progress that has been made is Rassie is able to move himself to and from a wheel chair. He does need some help though moving his legs from the bed to the wheel chair and vice versa. He is not able to stay in the wheel chair long or both legs go numb and start swelling. I am really hoping for some answers and some improvement soon. For now, all I can do is support him and Pray.
Speaking of his injury. Things are about the same. No feeling in either foot, except for the tingling. And the right leg is still numb. He still has lots of pain and is unable to stand or walk. He has a knot on his lower back where the cable hit him. It seems to be getting bigger. The physical therapist seems to think it is fluid build up. Dr. R said she doesn't think its fluid and she will let the nueroligist know tomorrow, Monday. So, pretty much the only progress that has been made is Rassie is able to move himself to and from a wheel chair. He does need some help though moving his legs from the bed to the wheel chair and vice versa. He is not able to stay in the wheel chair long or both legs go numb and start swelling. I am really hoping for some answers and some improvement soon. For now, all I can do is support him and Pray.
Friday, October 16, 2009
So....
Today's white count was down to 26,000! I am so excited that Rassie is doing do well on the hydroxyurea. I am still ancy about the whole leukemia thing. There are still questions I want answers to. Dr. R came by again today. She is going to see if she can get Dr. O (the lady who is going to be Rassie's oncologist) to come by and see him while he's in the hospital since we have no idea how long he will be there. We did have someone stop by the room today and she mentioned that the oncologist deptartment is still working with the insurance to get the Gleevac covered. Hmm, that's news to us. But we did miss Monday's appointment and all that good stuff so who knows! *fingers crossed*
The back injury - Rassie seems to be moving his upper body a little better. It is still really painful to do so because obviously your back is part of that! He got to sit in a wheel chair for a while today. He didn't sit long because sitting straight up puts more pressure on your back and it really got to him. It also made his legs go completely numb. Rassie's right leg is still pretty numb and lifeless. The good news: it feels tingly which means he does have feeling in it. Now if we could just get his back feeling better maybe the feeling in his legs would come back. The nuerologist explained what happened to Rassie's back like this: ' Think about when you hit your funny bone, how your arm goes numb and tingly for a minute or so. Well Rassie's injury is like a badass version of that. The cable hit his back causing his leg to go numb and tingly' He said they would hope it would get better anywhere from a few days to a week or so.
The MRI came back and it confirms a herniated or slipped disk. The neurologist said the slipped disk doesn't really explain the numbing of the leg and only part of the extreme pain in the back. But, the cable hitting Rassie in the back does explain his symptoms. So I guess we're still at a stand still with what is actually wrong?
The physcial therapy physician came by this afternoon. She is hoping that we can get Rassie moving a little more. That will get him from the acute care unit to the rehab unit. Once he is in the rehab unit they'll work on helping to get him even more mobile so that we can move him home. She thinks its in our best interest right now to wait until the pain he's having subsides some and he can move himself around more easily (from bed to wheel chair, etc) before we consider moving him home. They are taking into account that we have 2 small babies at home already and it would take too much out of me to have to care for him too. Which is a good thing. Man oh man am I ready for him to come home! But I will do whatever it takes to get him better. And I will wait as long as we need to make sure everything is ok.
The back injury - Rassie seems to be moving his upper body a little better. It is still really painful to do so because obviously your back is part of that! He got to sit in a wheel chair for a while today. He didn't sit long because sitting straight up puts more pressure on your back and it really got to him. It also made his legs go completely numb. Rassie's right leg is still pretty numb and lifeless. The good news: it feels tingly which means he does have feeling in it. Now if we could just get his back feeling better maybe the feeling in his legs would come back. The nuerologist explained what happened to Rassie's back like this: ' Think about when you hit your funny bone, how your arm goes numb and tingly for a minute or so. Well Rassie's injury is like a badass version of that. The cable hit his back causing his leg to go numb and tingly' He said they would hope it would get better anywhere from a few days to a week or so.
The MRI came back and it confirms a herniated or slipped disk. The neurologist said the slipped disk doesn't really explain the numbing of the leg and only part of the extreme pain in the back. But, the cable hitting Rassie in the back does explain his symptoms. So I guess we're still at a stand still with what is actually wrong?
The physcial therapy physician came by this afternoon. She is hoping that we can get Rassie moving a little more. That will get him from the acute care unit to the rehab unit. Once he is in the rehab unit they'll work on helping to get him even more mobile so that we can move him home. She thinks its in our best interest right now to wait until the pain he's having subsides some and he can move himself around more easily (from bed to wheel chair, etc) before we consider moving him home. They are taking into account that we have 2 small babies at home already and it would take too much out of me to have to care for him too. Which is a good thing. Man oh man am I ready for him to come home! But I will do whatever it takes to get him better. And I will wait as long as we need to make sure everything is ok.
Thursday, October 15, 2009
Even Lower
Rassie actually got to see Dr. R this morning. She is a resident and this week she is doing rounds in acute care where Rassie is. What a coincidence. His white count what down even lower! 30,000. So amazing. She went ahead and lowerd his dosage of hydroxyurea. Great news. I am so happy about that. We haven't gotten a chance to call over to oncology yet and set up another appointment to get things rolling there, but we will.
As for the injury. I was so happy to see Rassie this morning and so were the kids. A few doctors came in while I was there. I didn't catch their names. There have been so many names to keep up with lately. They ordered another MRI and they are also going to do a nerve study. He is still having a numbing sensation in his right leg. He could not wiggle his toes or bend his ankle. They also poked him with a safety pin all the way up his leg and he could not feel it until they got to the outside of the upper thigh. Yikes! Good news is when they hit it with the little hammer thing (name?) to check his reflexes they are good. But this is what the nerve study is for. For now, they are thinking that the slipped disc is pushing or pinching a nerve and causing this. We will know more once we get the results of the MRI. (which was ordered at 11 am and he was in by noon, it didn't take over 24 hours, yay!) I am hoping no surgery is needed but we will see. Occupational and Physical Therapy have already made a trip to his room. They moved his legs around for him as much as possible without hurting him. They also had helped him to stand twice. It was VERY supported standing and caused a lot of pain. So like I said, it was only done twice. Physical Therapy will come everyday and Occupation Therapy will come every few days. Once they get him doing at least 3 hours of physical therapy a day the doctors will decide whether or not he is ready to come home and be seen on an out patient basis.
That's about it for now. Just waiting on results and still need to reschedule oncology appointments. Thanks to all of you who have said a prayer for us.
As for the injury. I was so happy to see Rassie this morning and so were the kids. A few doctors came in while I was there. I didn't catch their names. There have been so many names to keep up with lately. They ordered another MRI and they are also going to do a nerve study. He is still having a numbing sensation in his right leg. He could not wiggle his toes or bend his ankle. They also poked him with a safety pin all the way up his leg and he could not feel it until they got to the outside of the upper thigh. Yikes! Good news is when they hit it with the little hammer thing (name?) to check his reflexes they are good. But this is what the nerve study is for. For now, they are thinking that the slipped disc is pushing or pinching a nerve and causing this. We will know more once we get the results of the MRI. (which was ordered at 11 am and he was in by noon, it didn't take over 24 hours, yay!) I am hoping no surgery is needed but we will see. Occupational and Physical Therapy have already made a trip to his room. They moved his legs around for him as much as possible without hurting him. They also had helped him to stand twice. It was VERY supported standing and caused a lot of pain. So like I said, it was only done twice. Physical Therapy will come everyday and Occupation Therapy will come every few days. Once they get him doing at least 3 hours of physical therapy a day the doctors will decide whether or not he is ready to come home and be seen on an out patient basis.
That's about it for now. Just waiting on results and still need to reschedule oncology appointments. Thanks to all of you who have said a prayer for us.
Wednesday, October 14, 2009
A Good Update
During the middle of everything going on with Rassie's accident I forgot to update on the good. According to the ER doctor on Sunday, Rassie's white count was 56,000. Thats down about 300,000 from where it started and that is AWESOME in my opinion. It is a big relief to see such progress.
On another note, Rassie is being transferred home to S&W hospital as we speak. We are both extremely happy about that. At first JPS was releasing him completely and said he could come home! But the had not even done a PT workup and Rassie cannot get out of bed by himself or walk so that was not a good idea. He still has numbness in his right leg and extreme pain in his back but he is feeling better.
Once he gets to S&W we will be able to reschedule his oncolgy appointment and see what we can do about getting him a new script since his was left at work when he got injured and no one can seem to find it. I am so excited to see him in the morning!
On another note, Rassie is being transferred home to S&W hospital as we speak. We are both extremely happy about that. At first JPS was releasing him completely and said he could come home! But the had not even done a PT workup and Rassie cannot get out of bed by himself or walk so that was not a good idea. He still has numbness in his right leg and extreme pain in his back but he is feeling better.
Once he gets to S&W we will be able to reschedule his oncolgy appointment and see what we can do about getting him a new script since his was left at work when he got injured and no one can seem to find it. I am so excited to see him in the morning!
Tuesday, October 13, 2009
The Day We Found Out
I was just going through pictures on my phone from the day we found out Rassie had CML. I thought I would share.
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The first one is my visitors pass from the ER so I could go back and see Rassie. I had no idea the news I was about to face.
This one is of Rassie. He didn't realize I was snapping his picture and wasn't all that happy about it either. But I told him not to worry. It was just his face and he looked fine. I love him no matter what!
This was our view from NT806. You can see the old part of the hospital. The sky is such a beautiful blue.
And this next picture is actually from the day Rassie got discharged. Our 2 sweet babies waiting to bring Daddy home. We were all worn out and ready to be home for good.
A few answers on the accident injury
JPS actually got Rassie in for an MRI last night and he got to se a nuerosurgeon today. He has a chronic slipped disk in his back. They let him take off the neck brace and sit up. They are also feeding him finally. It's about time. I know he was starving. Today is the first day he has had anything to eat or drink since Saturday. Yesterday they finally gave in and let him have a few ice chips but other than that he was getting nothing but a saline drip.
The nuerosurgeon suggested transferring Rassie to Scott & White because his recovery will take 4-6 weeks and it would be better if he were closer to home. Because if they do let him come home he will need extensive physical therapy and we can't drive back and forth 2 hours one way everytime he has a pt appointment. But, once Rassie get's here to Scott & White their treatment may be different than what JPS would do. So it's just a wait and see situation. Right now we are waiting for the transfer to be approved. It is a whole process of JPS calling S&W and getting a doctor here to accept Rassie as a patient. Getting dishcharge papers from JPS getting and ambulance transport in between 911 calls and finally the trip down here. We are pretty sure since it's already 8 pm that the transfer is not going to happen tonight but are really praying it does tomorrow. So keep us in your prayers for an approved transfer and a safe drive down here.
Rassie's employer is also giving us trouble and saying Rassie was admitted to the hospital due to a personal illness and not because of his injury at work. We are trying to get that worked out and are considering talking to an attorney. We already have a few picked out that we are going to call for a consult to see if we want to go any further. Maybe just the consult will get his employers on the right path and stop them from denying him workmans comp during his recovery.
The nuerosurgeon suggested transferring Rassie to Scott & White because his recovery will take 4-6 weeks and it would be better if he were closer to home. Because if they do let him come home he will need extensive physical therapy and we can't drive back and forth 2 hours one way everytime he has a pt appointment. But, once Rassie get's here to Scott & White their treatment may be different than what JPS would do. So it's just a wait and see situation. Right now we are waiting for the transfer to be approved. It is a whole process of JPS calling S&W and getting a doctor here to accept Rassie as a patient. Getting dishcharge papers from JPS getting and ambulance transport in between 911 calls and finally the trip down here. We are pretty sure since it's already 8 pm that the transfer is not going to happen tonight but are really praying it does tomorrow. So keep us in your prayers for an approved transfer and a safe drive down here.
Rassie's employer is also giving us trouble and saying Rassie was admitted to the hospital due to a personal illness and not because of his injury at work. We are trying to get that worked out and are considering talking to an attorney. We already have a few picked out that we are going to call for a consult to see if we want to go any further. Maybe just the consult will get his employers on the right path and stop them from denying him workmans comp during his recovery.
Bad News
Rassie was supposed to go in for weekly labs today and his first two outpatient appointments for his leukemia. He didn't make it. I had to call and cancel. It explains everything below.
Let me start off by saying the bad news is not about Rassie's CML.
This past Saturday night / Sunday morning Rassie had an accident on the oil rig. He injured his lower back. From what he has told me, it was between 2 and 2:30 am. He slipped on wet oil based mud and his feet came out from under him but he never actually hit the ground because the other guys threw his tongs and there was slack in the cable and it came back and slapped him in the back picking him back up onto his feet before he could fall all the way. I know you guys have no idea what I am talking about and don't worry I don't really know what exactly everything is but I do understand that this is a very strong cable and slapping someone in the back can cause major injury. So let me finish. Rassie was in a lot of pain and told his driller who then told him to go down and tell the pusher (the boss). So Rassie (with his back injury) had to walk down a steep flight of steps to the pushers shack. Here he was not feeling so well and needed to sit down so he took a seat on the step outside the pusher's shack (trailer/office) After about 30 minutes of agonizing pain he realized he could not stand up. He was left sitting in the misty/rainy weather until almost 4:30. That's TWO hours. Finally the pusher had 2 members of the crew come down and help Rassie into the change house where they set him in a metal chair. He sat there until about 5:30-6 am when the safety guy made it out to the rig. The safety guy just kind of picked Rassie up over his shoulders and drug him to the truck and then drove him to the hospital.
I would like to stop for a minute and get out all of my frustrations. If someone has a back injury DO NOT LET THEM WALK. ESPECIALLY DOWN STAIRS!!!! They should have called for help right then and there. And their 2nd mistake. They waited FOUR HOURS until they took him to the emergency room that was I think 45 minutes away.
So they get him to North Texas Medical Center. They do a CT Scan that shows negative. But Rassie is in a lot of pain and unable to move his right leg without the pain in his back becoming excruciating. Not to mention he can't feel his right leg all that well. They want to do an MRI but decide they need to send him to a trauma hospital. Rassie requested Scott & White. They told him no and sent him to John Peter Smith Hospital in Ft. Worth. NEVER USE THIS HOSPITAL.
We have had nothing but trouble since Rassie got transferred to JPS. They wouldn't contact Scott & White to get him back on his leukemia meds which I couldn't find at his job so he couldn't take them. Finally after a day one nurse called and got the confirmation and dosage. The first doctor in the ER told me it would not hurt Rassie to be off his meds for a day or two that they were only worried about his back injury. I was steamed! Somewhere between ER and the Observation floor they lost the workman's comp insurance papers. After waiting 24 hours the MRI had NOT been done because they only have one MRI machine and they do out patients before trauma patients. Doesn't that seem odd to you? We spent all day today requesting to be transferred to Scott & White 1) for faster, better care 2) to be closer to home.
The doctor refused to transfer. Want to know his reason? Because too much time would be lost and Scott & White would have to start all over. Get this! They have had patients ordered for an MRI stat waiting for 2 days! And they are worried about another hospital having to start the process over when they haven't even started the process here other than pushing the pain meds to keep him passed out. Every time we asked to speak to someone they would give him pain meds to knock him out. We asked for a patient advocate and all she did was take the doctors side and then we caught them both in lies.
We are stuck at a county hospital with a workers comp claim and in my opinino they won't transfer him because they know they will get paid no matter what for this patient. Anyways! That's my rant. I will let you know more when I can. For now I am home with the kids because I couldn't get a babysitter past tonight. So Rassie is 2 hours away, laid up in a hospital bed all alone and its killing me.
Please Please Please say a Prayer for Rassie and our family. We are facing a lot right now. Not sure when this storm will pass but I know we could use the prayers.
Let me start off by saying the bad news is not about Rassie's CML.
This past Saturday night / Sunday morning Rassie had an accident on the oil rig. He injured his lower back. From what he has told me, it was between 2 and 2:30 am. He slipped on wet oil based mud and his feet came out from under him but he never actually hit the ground because the other guys threw his tongs and there was slack in the cable and it came back and slapped him in the back picking him back up onto his feet before he could fall all the way. I know you guys have no idea what I am talking about and don't worry I don't really know what exactly everything is but I do understand that this is a very strong cable and slapping someone in the back can cause major injury. So let me finish. Rassie was in a lot of pain and told his driller who then told him to go down and tell the pusher (the boss). So Rassie (with his back injury) had to walk down a steep flight of steps to the pushers shack. Here he was not feeling so well and needed to sit down so he took a seat on the step outside the pusher's shack (trailer/office) After about 30 minutes of agonizing pain he realized he could not stand up. He was left sitting in the misty/rainy weather until almost 4:30. That's TWO hours. Finally the pusher had 2 members of the crew come down and help Rassie into the change house where they set him in a metal chair. He sat there until about 5:30-6 am when the safety guy made it out to the rig. The safety guy just kind of picked Rassie up over his shoulders and drug him to the truck and then drove him to the hospital.
I would like to stop for a minute and get out all of my frustrations. If someone has a back injury DO NOT LET THEM WALK. ESPECIALLY DOWN STAIRS!!!! They should have called for help right then and there. And their 2nd mistake. They waited FOUR HOURS until they took him to the emergency room that was I think 45 minutes away.
So they get him to North Texas Medical Center. They do a CT Scan that shows negative. But Rassie is in a lot of pain and unable to move his right leg without the pain in his back becoming excruciating. Not to mention he can't feel his right leg all that well. They want to do an MRI but decide they need to send him to a trauma hospital. Rassie requested Scott & White. They told him no and sent him to John Peter Smith Hospital in Ft. Worth. NEVER USE THIS HOSPITAL.
We have had nothing but trouble since Rassie got transferred to JPS. They wouldn't contact Scott & White to get him back on his leukemia meds which I couldn't find at his job so he couldn't take them. Finally after a day one nurse called and got the confirmation and dosage. The first doctor in the ER told me it would not hurt Rassie to be off his meds for a day or two that they were only worried about his back injury. I was steamed! Somewhere between ER and the Observation floor they lost the workman's comp insurance papers. After waiting 24 hours the MRI had NOT been done because they only have one MRI machine and they do out patients before trauma patients. Doesn't that seem odd to you? We spent all day today requesting to be transferred to Scott & White 1) for faster, better care 2) to be closer to home.
The doctor refused to transfer. Want to know his reason? Because too much time would be lost and Scott & White would have to start all over. Get this! They have had patients ordered for an MRI stat waiting for 2 days! And they are worried about another hospital having to start the process over when they haven't even started the process here other than pushing the pain meds to keep him passed out. Every time we asked to speak to someone they would give him pain meds to knock him out. We asked for a patient advocate and all she did was take the doctors side and then we caught them both in lies.
We are stuck at a county hospital with a workers comp claim and in my opinino they won't transfer him because they know they will get paid no matter what for this patient. Anyways! That's my rant. I will let you know more when I can. For now I am home with the kids because I couldn't get a babysitter past tonight. So Rassie is 2 hours away, laid up in a hospital bed all alone and its killing me.
Please Please Please say a Prayer for Rassie and our family. We are facing a lot right now. Not sure when this storm will pass but I know we could use the prayers.
Wednesday, October 7, 2009
Wednesday Wishes
This Wednesday's Wish is to share time with the ones you
love and to provide them and yourself
with memories
that will last more than a lifetime.
love and to provide them and yourself
with memories
that will last more than a lifetime.
Rassie did that this week by spending time with his two sweet babies.
Daddy & Lane watching the Cowboys Football Game
Daddy & Scarlett reading 'Daddy's Girl'
Tuesday, October 6, 2009
Our First Obstacle
I want to start off by saying that Gleevec, the pill they want to put Rassie on, costs an outrageous amount each month. One that we cannot afford to pay. And now after some miscommunication by the case worker on the 8th floor we face our first obstacle
Dr. H and Dr. R both told us it would take a while to get our hands on Gleevec. They said it would be hard to get the insurance to cover it and if we did get coverage the copay could be $500-$1000 a month. Talk about a shocker! The Monday before Rassie was discharged the 8th floor case manager came in and told us that the insurance had approved Gleevec and there was a $0 copay. We were thrilled. It seemed way too good to be true but who were we to complain.
This past Friday we got a letter in the mail from our insurance company saying they denied the request for authorization of Gleevec. What? How? Yesterday and today we spent on the phone trying to get ahold of the case manager from the hospital. We finally got her only to learn that "I didn't tell you that your insurance covered it" and then "There must have been miscommunication somewhere". It had to be on her end. Rassie and I did not hear her say the same thing twice about being covered and having no copay. But that's that.
Now we are supposed to take in a pay stub so we can try to get coverage through a program. The first program the case manager is going to try is to get the pill company itself to pay for Rassie's prescription. We are really hoping that this happens for us or that the insurance company changes their mind. We do plan on contacting the insurance to see exactly why they denied Gleevec. Rassie and I think that the insurance company may be under the impression that the Leukemia is a pre existing condition since we have only been with them for about a month. And if that's the case and we can prove it was not pre existing maybe they will change their minds and provide coverage for the Gleevec.
Please keep us in your prayers that one way or another we will get assistance to help pay for the Gleevec. If we have to make a copay that is fine with us but without some type of assistance we will never be able to afford it.
Dr. H and Dr. R both told us it would take a while to get our hands on Gleevec. They said it would be hard to get the insurance to cover it and if we did get coverage the copay could be $500-$1000 a month. Talk about a shocker! The Monday before Rassie was discharged the 8th floor case manager came in and told us that the insurance had approved Gleevec and there was a $0 copay. We were thrilled. It seemed way too good to be true but who were we to complain.
This past Friday we got a letter in the mail from our insurance company saying they denied the request for authorization of Gleevec. What? How? Yesterday and today we spent on the phone trying to get ahold of the case manager from the hospital. We finally got her only to learn that "I didn't tell you that your insurance covered it" and then "There must have been miscommunication somewhere". It had to be on her end. Rassie and I did not hear her say the same thing twice about being covered and having no copay. But that's that.
Now we are supposed to take in a pay stub so we can try to get coverage through a program. The first program the case manager is going to try is to get the pill company itself to pay for Rassie's prescription. We are really hoping that this happens for us or that the insurance company changes their mind. We do plan on contacting the insurance to see exactly why they denied Gleevec. Rassie and I think that the insurance company may be under the impression that the Leukemia is a pre existing condition since we have only been with them for about a month. And if that's the case and we can prove it was not pre existing maybe they will change their minds and provide coverage for the Gleevec.
Please keep us in your prayers that one way or another we will get assistance to help pay for the Gleevec. If we have to make a copay that is fine with us but without some type of assistance we will never be able to afford it.
Monday, October 5, 2009
Hydroxyurea - The Medication Currently being used
Hydroxyurea is the medication that Rassie is currently on to lower his white count. It seems to be doing it's job. Rassie's white count initially started out at 358,000. As of this past Friday it was down to 150,000.
We did have a bump in the road this past Tuesday. Rassie's white count went up instead of down. His dosage had to be upped from 4 pills a day to 6 pills a day. Which means 2,000 mg a day to 3,000 mg a day. I am very thankful for hydroxyurea right now and its ability to lower Rassie's white count so that he can be home with us, his family.
I have been researching hydroxyurea. There are lots of articles out there. They do not all relate to CML so I kept searching until I found one that did. I wanted a better understanding of what this medication is doing for Rassie. Here is an article I found on WebMD that helps to explain it in much better terms than me.
Hydroxyurea
Generic Name: Hydroxyurea Brand Name: Droxia, Hydrea
Hydroxyurea is available as a pill you can swallow. It is also known as hydroxycarbamide.
How It Works
Hydroxyurea keeps cancer cells from growing. It is used to treat chronic myelogenous leukemia (CML) and, rarely, chronic lymphocytic leukemia (CLL) or acute myelogenous leukemia (AML). It is sometimes used to treat sickle cell disease or other cancer.
How Well It Works
CML and CLL can cause your white blood cell count to get too high. Hydroxyurea can reduce white blood cell counts within 1 or 2 days. It can be used during pregnancy in many cases.
Side Effects
Side effects of hydroxyurea are generally mild and can include:
Hydroxyurea should be used only under the supervision of a medical oncologist or hematologist. He or she will monitor your blood counts regularly.
Hydroxyurea is still an experimental treatment in children. Long-term effects of the drug on children are not yet known.
We did have a bump in the road this past Tuesday. Rassie's white count went up instead of down. His dosage had to be upped from 4 pills a day to 6 pills a day. Which means 2,000 mg a day to 3,000 mg a day. I am very thankful for hydroxyurea right now and its ability to lower Rassie's white count so that he can be home with us, his family.
I have been researching hydroxyurea. There are lots of articles out there. They do not all relate to CML so I kept searching until I found one that did. I wanted a better understanding of what this medication is doing for Rassie. Here is an article I found on WebMD that helps to explain it in much better terms than me.
Hydroxyurea
Generic Name: Hydroxyurea Brand Name: Droxia, Hydrea
Hydroxyurea is available as a pill you can swallow. It is also known as hydroxycarbamide.
How It Works
Hydroxyurea keeps cancer cells from growing. It is used to treat chronic myelogenous leukemia (CML) and, rarely, chronic lymphocytic leukemia (CLL) or acute myelogenous leukemia (AML). It is sometimes used to treat sickle cell disease or other cancer.
Why It Is Used
Hydroxyurea is used to treat CML and CLL because it works fast and does not cause many side effects.How Well It Works
CML and CLL can cause your white blood cell count to get too high. Hydroxyurea can reduce white blood cell counts within 1 or 2 days. It can be used during pregnancy in many cases.
Side Effects
Side effects of hydroxyurea are generally mild and can include:
- Low blood counts, which may increase the risk of infection and bleeding.
- Nausea or vomiting.
- Loss of appetite.
- Diarrhea.
- Hoarseness.
- Fever or chills.
- Mouth sores (stomatitis).
- Blackening of the fingernails and toenails.
- Skin ulcers (uncommon side effect).
- Rashes.
Hydroxyurea should be used only under the supervision of a medical oncologist or hematologist. He or she will monitor your blood counts regularly.
Hydroxyurea is still an experimental treatment in children. Long-term effects of the drug on children are not yet known.
Sunday, October 4, 2009
Learning about Gleevec
I don't know about all of you out there, but Rassie and myself are very curious about this miracle pill called Gleevec. We want to know all there is to know about this pill that will replace chemothereapy, avoid a bone marrow transplant and keep Rassie healthy. So far, this is what I have come up with. There are several articles out there but this one does a pretty good overview of everything.
1. What is Gleevec?
Gleevec, also known as STI571, is a new drug that was approved by the Food and Drug Administration in 2001 for the treatment of chronic myeloid leukemia (CML), a cancer of white blood cells, and for the treatment of a rare form of stomach cancer called gastrointestinal stromal tumor (GIST) in 2002. It was designed in the laboratory to target an abnormal version of a normal cellular protein, present in nearly all CML patients. The abnormal protein is much more active than the normal version and is probably the cause of the disease. By blocking the abnormal protein, called BCR-ABL, Gleevec kills the leukemia cells.
2. Why is Gleevec different from most chemotherapy drugs?
Gleevec represents a new class of cancer drugs and a new way of thinking about cancer. These molecularly targeted drugs are different because they target abnormal proteins that are fundamental to the cancer itself. Most current cancer therapies lack specificity, killing both cancer and normal cells. This is one reason why many people who undergo chemotherapy experience unwanted side effects from their medications. But Gleevec and other drugs in development are designed to zero in on specific cancer-causing molecules, eliminating cancer cells while avoiding serious damage to other, non-cancerous cells. In the case of Gleevec, the drug is targeted at the bcr-abl protein in CML cells. (Gleevec also affects other messenger systems in a cell which may contribute to its toxicity.)
3. What were the results of the previous clinical trials with Gleevec?
In June 1998, the first clinical trial of Gleevec was launched. This small, initial study sought primarily to determine whether Gleevec is safe in people, not its effectiveness as a cancer drug. However, as the doctors gradually increased the dose of the drug, they noticed dramatic responses in their patients, all of whom were no longer benefitting from previous therapy.
In December 1999, Brian Druker, M.D., and his collaborators reported the preliminary results of this early study. Their data showed that once patients reached an effective daily dose of 300 mg or more, 31 out of 31 patients had their blood counts return to normal, a sign that a treatment is working. In nine of the 20 patients who were treated for five months or longer, no leukemia cells could be found, which showed that the drug was eliminating the source of the cancer. They also noted that side effects were minimal in these patients. Such dramatic results are rarely seen in such an early clinical study.
In April 2001, Druker and colleagues reported the results of a larger follow-up study of Gleevec in the New England Journal of Medicine. They reported that Gleevec restored normal blood counts in 53 out of 54 chemotherapy-resistant CML patients, a response rate rarely seen in cancer with a single agent. Fifty-one of these patients were still doing well after a year on the medicine, and most reported few side effects.
4. What is chronic myelogenous leukemia, or CML?
CML is a disease in which too many white blood cells are made in the bone marrow. The bone marrow is the spongy tissue inside the large bones in the body. The bone marrow makes red blood cells (which carry oxygen and other materials to all tissues of the body), white blood cells (which fight infection), and platelets (which make the blood clot).
Normally, bone marrow cells called blasts mature into several different types of blood cells that have specific jobs in the body. CML affects the blasts that develop into multiple cell types in the bone marrow, including the white blood cells (granulocytes). The white blood cells do not mature normally and become too numerous. Immature white blood cells are then found in the blood and the bone marrow. Most people with CML have an abnormal chromosome, known as the Philadelphia chromosome, in which segments of chromosomes 9 and 22 are fused together to create the abnormal protein at the root of CML.
CML is diagnosed in about 4,500 Americans each year, usually people who are middle-aged or older, although the cancer also can occur in children. In the first stages of CML, most people don't have symptoms and the disease progresses slowly.
Treatment with interferon alfa may produce partial or complete remissions in chronic phase CML, restoring normal blood counts in up to 70 percent of patients. Complete cytogenetic responses (disappearance of cancer cells) have been reported in up to 20 percent of patients with a delay of disease progression and prolongation of survival. Bone marrow transplantation in the chronic phase is the only treatment known to cure CML. However, many patients are not young or healthy enough to tolerate a transplantation or don't have a suitable marrow donor, and the procedure can cause serious side effects or death.
5. Is it possible to target abnormal proteins in other tumors with molecular-targeting drugs?
Yes, provided that the target is correctly chosen. It is important to note that Gleevec builds on an observation that was first made in 1960. Scientists then had just learned how to isolate and study human chromosomes, and they noticed that CML patients often had an unusually small chromosome that is not found in other people. They named it the Philadelphia chromosome, after the city in which the research was conducted. This set in motion decades of work to determine its cause, which was eventually found to be a genetic mistake in which segments of chromosomes 9 and 22 stick together to form the Philadelphia chromosome. The bcr-abl gene is located at the place where chromosome 9 and 22 are fused together.
With the emergence of gene cloning technologies in the late 1980s, scientists later isolated the bcr-abl gene and characterized its aberrant, cancer-causing protein. By the early 1990s, scientists at CIBA-Geigy, later Novartis Pharmaceuticals, were able to use this well-defined target to create Gleevec, designing it to shut off the BCR-ABL protein in people with CML.
Given the success of Gleevec and the recent explosion of powerful molecular technology now available in cancer research, scientists are searching intensively to discover the correct targets in other cancers. At NCI, for example, several initiatives are under way to accelerate the discovery process. These include: Cancer Genome Anatomy Project; Director's Challenge: Toward a Molecular Classification of Cancer; the Molecular Targets Initiative; and Molecular Target Laboratories.
6. Does the approval of Gleevec mean that scientists now will stop studying the drug after only a few clinical trials?
No. Though the results of the first clinical trials have been dramatic, many research questions remain to be answered. These include:
7. Where can I find out more about clinical trials with Gleevec?
There are several options. By telephone, contact the NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237); deaf and hard of hearing callers with TTY equipment may call 1-800-332-8615. Or, on the Internet, visit the Clinical Trials section of the NCI's Web site. It provides a comprehensive list of clinical trials now under way to study Gleevec. The Web site address is: http://www.cancer.gov/clinicaltrials/search. The site also contains helpful background information on Gleevec.
1. What is Gleevec?
Gleevec, also known as STI571, is a new drug that was approved by the Food and Drug Administration in 2001 for the treatment of chronic myeloid leukemia (CML), a cancer of white blood cells, and for the treatment of a rare form of stomach cancer called gastrointestinal stromal tumor (GIST) in 2002. It was designed in the laboratory to target an abnormal version of a normal cellular protein, present in nearly all CML patients. The abnormal protein is much more active than the normal version and is probably the cause of the disease. By blocking the abnormal protein, called BCR-ABL, Gleevec kills the leukemia cells.
2. Why is Gleevec different from most chemotherapy drugs?
Gleevec represents a new class of cancer drugs and a new way of thinking about cancer. These molecularly targeted drugs are different because they target abnormal proteins that are fundamental to the cancer itself. Most current cancer therapies lack specificity, killing both cancer and normal cells. This is one reason why many people who undergo chemotherapy experience unwanted side effects from their medications. But Gleevec and other drugs in development are designed to zero in on specific cancer-causing molecules, eliminating cancer cells while avoiding serious damage to other, non-cancerous cells. In the case of Gleevec, the drug is targeted at the bcr-abl protein in CML cells. (Gleevec also affects other messenger systems in a cell which may contribute to its toxicity.)
3. What were the results of the previous clinical trials with Gleevec?
In June 1998, the first clinical trial of Gleevec was launched. This small, initial study sought primarily to determine whether Gleevec is safe in people, not its effectiveness as a cancer drug. However, as the doctors gradually increased the dose of the drug, they noticed dramatic responses in their patients, all of whom were no longer benefitting from previous therapy.
In December 1999, Brian Druker, M.D., and his collaborators reported the preliminary results of this early study. Their data showed that once patients reached an effective daily dose of 300 mg or more, 31 out of 31 patients had their blood counts return to normal, a sign that a treatment is working. In nine of the 20 patients who were treated for five months or longer, no leukemia cells could be found, which showed that the drug was eliminating the source of the cancer. They also noted that side effects were minimal in these patients. Such dramatic results are rarely seen in such an early clinical study.
In April 2001, Druker and colleagues reported the results of a larger follow-up study of Gleevec in the New England Journal of Medicine. They reported that Gleevec restored normal blood counts in 53 out of 54 chemotherapy-resistant CML patients, a response rate rarely seen in cancer with a single agent. Fifty-one of these patients were still doing well after a year on the medicine, and most reported few side effects.
4. What is chronic myelogenous leukemia, or CML?
CML is a disease in which too many white blood cells are made in the bone marrow. The bone marrow is the spongy tissue inside the large bones in the body. The bone marrow makes red blood cells (which carry oxygen and other materials to all tissues of the body), white blood cells (which fight infection), and platelets (which make the blood clot).
Normally, bone marrow cells called blasts mature into several different types of blood cells that have specific jobs in the body. CML affects the blasts that develop into multiple cell types in the bone marrow, including the white blood cells (granulocytes). The white blood cells do not mature normally and become too numerous. Immature white blood cells are then found in the blood and the bone marrow. Most people with CML have an abnormal chromosome, known as the Philadelphia chromosome, in which segments of chromosomes 9 and 22 are fused together to create the abnormal protein at the root of CML.
CML is diagnosed in about 4,500 Americans each year, usually people who are middle-aged or older, although the cancer also can occur in children. In the first stages of CML, most people don't have symptoms and the disease progresses slowly.
Treatment with interferon alfa may produce partial or complete remissions in chronic phase CML, restoring normal blood counts in up to 70 percent of patients. Complete cytogenetic responses (disappearance of cancer cells) have been reported in up to 20 percent of patients with a delay of disease progression and prolongation of survival. Bone marrow transplantation in the chronic phase is the only treatment known to cure CML. However, many patients are not young or healthy enough to tolerate a transplantation or don't have a suitable marrow donor, and the procedure can cause serious side effects or death.
5. Is it possible to target abnormal proteins in other tumors with molecular-targeting drugs?
Yes, provided that the target is correctly chosen. It is important to note that Gleevec builds on an observation that was first made in 1960. Scientists then had just learned how to isolate and study human chromosomes, and they noticed that CML patients often had an unusually small chromosome that is not found in other people. They named it the Philadelphia chromosome, after the city in which the research was conducted. This set in motion decades of work to determine its cause, which was eventually found to be a genetic mistake in which segments of chromosomes 9 and 22 stick together to form the Philadelphia chromosome. The bcr-abl gene is located at the place where chromosome 9 and 22 are fused together.
With the emergence of gene cloning technologies in the late 1980s, scientists later isolated the bcr-abl gene and characterized its aberrant, cancer-causing protein. By the early 1990s, scientists at CIBA-Geigy, later Novartis Pharmaceuticals, were able to use this well-defined target to create Gleevec, designing it to shut off the BCR-ABL protein in people with CML.
Given the success of Gleevec and the recent explosion of powerful molecular technology now available in cancer research, scientists are searching intensively to discover the correct targets in other cancers. At NCI, for example, several initiatives are under way to accelerate the discovery process. These include: Cancer Genome Anatomy Project; Director's Challenge: Toward a Molecular Classification of Cancer; the Molecular Targets Initiative; and Molecular Target Laboratories.
6. Does the approval of Gleevec mean that scientists now will stop studying the drug after only a few clinical trials?
No. Though the results of the first clinical trials have been dramatic, many research questions remain to be answered. These include:
- How long does Gleevec control CML?
- Does Gleevec actually cure patients of CML? Or, does the drug delay the onset of more advanced forms of the cancer? If so, how long does Gleevec keep CML in check?
- Can the effectiveness of Gleevec be enhanced in combination with other drugs?
- Why does Gleevec not help all people with CML?
7. Where can I find out more about clinical trials with Gleevec?
There are several options. By telephone, contact the NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237); deaf and hard of hearing callers with TTY equipment may call 1-800-332-8615. Or, on the Internet, visit the Clinical Trials section of the NCI's Web site. It provides a comprehensive list of clinical trials now under way to study Gleevec. The Web site address is: http://www.cancer.gov/clinicaltrials/search. The site also contains helpful background information on Gleevec.
Saturday, October 3, 2009
A pharmacy you CAN'T rely on
Everything is good here. Rassie is feeling great. He helped weed eat the yard yesterday. He wanted to cook out steaks but we couldn't get the grill lit. We think the ignition switch is broken.
Anyways, on to the Pharmacy! Do NOT use Wal-Mart pharmacy if you have a really important prescription. I can understand waiting a few days on an antibiotic or acid control or even have to start over with birth control. Something little like that. But when you need a script to help keep your white count down so that you don't end up back in the hospital, its not something to play around with.
Rassie got out of the hospital on Tuesday. Dr. R had prescribed a 30 day supply of hydroxyurea. Wal-Mart pharmacy claimed they only had a 3 day supply but their shipment would be in the next day. So Rassie took the partial. We called back Wednesday. No shipment yet. When we stopped by Thursday they told us they still had not gotten anymore in their shipment. But by some miracle they could give Rassie another 3 day supply. We called Friday and the lady said it still didn't come in but would for sure be here Monday. If Rassie wanted to come in and get another 3 day partial just to feel safe he could! That would mean 9 days worth of pills when they initially claimed they only had a 3 day supply!!! But we decided we would pick it up today, Saturday, because his supply will run out Sunday and it would put Rassie's mind at ease to have 3 more days worth. We get there and they told us that they didn't have any and Rassie would have to wait until Monday. Then the pharmacist said, "Oh, we did get the shipment in. I can fill the complete prescription, I just wanted to wait until Monday because we are so busy". I was not happy. Nevertheless, she fill the script and we are good to go for the month. We will not be using the Wal-Mart pharmacy for Rassie's prescriptions anymore.
Anyways, on to the Pharmacy! Do NOT use Wal-Mart pharmacy if you have a really important prescription. I can understand waiting a few days on an antibiotic or acid control or even have to start over with birth control. Something little like that. But when you need a script to help keep your white count down so that you don't end up back in the hospital, its not something to play around with.
Rassie got out of the hospital on Tuesday. Dr. R had prescribed a 30 day supply of hydroxyurea. Wal-Mart pharmacy claimed they only had a 3 day supply but their shipment would be in the next day. So Rassie took the partial. We called back Wednesday. No shipment yet. When we stopped by Thursday they told us they still had not gotten anymore in their shipment. But by some miracle they could give Rassie another 3 day supply. We called Friday and the lady said it still didn't come in but would for sure be here Monday. If Rassie wanted to come in and get another 3 day partial just to feel safe he could! That would mean 9 days worth of pills when they initially claimed they only had a 3 day supply!!! But we decided we would pick it up today, Saturday, because his supply will run out Sunday and it would put Rassie's mind at ease to have 3 more days worth. We get there and they told us that they didn't have any and Rassie would have to wait until Monday. Then the pharmacist said, "Oh, we did get the shipment in. I can fill the complete prescription, I just wanted to wait until Monday because we are so busy". I was not happy. Nevertheless, she fill the script and we are good to go for the month. We will not be using the Wal-Mart pharmacy for Rassie's prescriptions anymore.
Friday, October 2, 2009
Just a quick Update
It's Friday. Everything is going good. Rassie is feeling just fine. That seems to be the question on everyone's mind. I just want to let everyone know that Rassie never felt bad. He had some swelling and some bruising and went to the doctor as a precuation. We never thought that the blood work would come back with the diagnosis of leukemia.
Rassie's white count is down to 150,000 today. That means the higher dosage is doing its job.
The only complaint we have had is about the Wal-Mart pharmacy. This will be last time we try to get his prescription of hydroxyurea filled there. They are supposed to give him a 1 month supply but apparently they haven't gotten any in their shipments. Therefore, they've only been giving him a 3 day supply at a time. Which in my opinion is dumb. It also means that they have more than what they are handing out. If they give you a 3 day supply because that is all they have and you go back the next day to get the rest but it didn't come on their shipment how are they going to give you another 3 day supply! I guess we should both just be thankful and not complain. But we know he needs this medication and Wal-Mart pharmacy seems to be playing around. Talk about irritating!
Rassie's white count is down to 150,000 today. That means the higher dosage is doing its job.
The only complaint we have had is about the Wal-Mart pharmacy. This will be last time we try to get his prescription of hydroxyurea filled there. They are supposed to give him a 1 month supply but apparently they haven't gotten any in their shipments. Therefore, they've only been giving him a 3 day supply at a time. Which in my opinion is dumb. It also means that they have more than what they are handing out. If they give you a 3 day supply because that is all they have and you go back the next day to get the rest but it didn't come on their shipment how are they going to give you another 3 day supply! I guess we should both just be thankful and not complain. But we know he needs this medication and Wal-Mart pharmacy seems to be playing around. Talk about irritating!
Happy Thursday
Thursday we spent the day enjoying time together. After taking Lane to his well baby we decided to take Scarlett to the park. Scarlett and Daddy had a blast playing together!
Finding a Donor
Finding a bone marrow donor is a simple yet difficult task. They prefer a sibling match over a non related relative match. Mother and Father will NOT be a match because you get one chromosome from each parent so they will not have both chromosomes needed.
To find out if you are a match, all that is need is a sample of your blood.
To donate if you are a match, you are hooked up to an IV that is placed on the left or right side on the front of your shoulder area. They give you a medication that will increas your white blood cell count. They will monitor your white count as it rises and when it gets to the number they are looking for they will take the white blood cells from you.
The difficult part is finding a donor that matches.
To find out if you are a match, all that is need is a sample of your blood.
To donate if you are a match, you are hooked up to an IV that is placed on the left or right side on the front of your shoulder area. They give you a medication that will increas your white blood cell count. They will monitor your white count as it rises and when it gets to the number they are looking for they will take the white blood cells from you.
The difficult part is finding a donor that matches.
A Set Back
A set back, or so we thought. Rassie's labs came back on Tuesday and his white count had gone up from 190,000 to 240,000. They were supposed to go down. We were so worried and wanted to know why the medications were not working. Would we have to speed up treatment? There were so many questions and the doctor took forever coming by.
Dr. R finally showed up about 3:30 and set our minds at ease. Rassie would still get to go home. Dr. R said that the bone marrow had just let out more of the 'bad cells' and all that meant was we needed to up his dosage of hydroxyurea. He was to come back once a week for labs to make sure it was doing the job.
They went over everything with us. Said Rassie would do labs once a week and they they would get us a clinic appointment set up with Dr. O (I think this is the Fellow). From the clinic appointment we would get the bone marrow biopsy set up and talk about getting Rassie on the Gleevac.
We were all so happy to be bringing Rassie home!!! We celebrated with dinner out with Mexican food.
Dr. R finally showed up about 3:30 and set our minds at ease. Rassie would still get to go home. Dr. R said that the bone marrow had just let out more of the 'bad cells' and all that meant was we needed to up his dosage of hydroxyurea. He was to come back once a week for labs to make sure it was doing the job.
They went over everything with us. Said Rassie would do labs once a week and they they would get us a clinic appointment set up with Dr. O (I think this is the Fellow). From the clinic appointment we would get the bone marrow biopsy set up and talk about getting Rassie on the Gleevac.
We were all so happy to be bringing Rassie home!!! We celebrated with dinner out with Mexican food.
Good News Monday 9/28/2009
On Monday, our day played out pretty much the same. The kids and I made it to the hospital to see Rassie in the morning. We took him ham, egg and cheese sandwiches for breakfast. Took the kids home for nap and let his parent's stay there and watch them while I went back to the hospital.
Dr. H came by close to 4. He had GREAT news. Rassie's white count was down to 190,000 and he said he would most likely get to come home the next day, Tuesday. What a relief. Dr. H also went over the options of the pill Gleevec and the bone marrow transplant again. Then he told Rassie that they would want to do a bone marrow biopsy to further study the leukemia cells. He told Rassie that he could do this before he was discharged from the hospital or on an out patient basis at the clinic. Rassie opted for the out patient procedure. He still needed to let it sink in a little.
We both slept a little easier that night knowing that he would probably get to come home the next day.
Dr. H came by close to 4. He had GREAT news. Rassie's white count was down to 190,000 and he said he would most likely get to come home the next day, Tuesday. What a relief. Dr. H also went over the options of the pill Gleevec and the bone marrow transplant again. Then he told Rassie that they would want to do a bone marrow biopsy to further study the leukemia cells. He told Rassie that he could do this before he was discharged from the hospital or on an out patient basis at the clinic. Rassie opted for the out patient procedure. He still needed to let it sink in a little.
We both slept a little easier that night knowing that he would probably get to come home the next day.
Sunday Sunday
I didn't make it to the hospital to see Rassie as early on Sunday. Scarlett slept in until 8 and then we still had to get showers and swing by McDonalds to grab daddy breakfast. Rassie wasn't too hot on the hospital food. We made it to the hospital by 10. We were slow getting started that morning. I missed the Fellow (doctor). Rassie's parents showed up about 20-30 minutes after me. We set around talking and letting Scarlett play with daddy. Rassie spoiled Scarlett with icecream and cookies while she was there, but that's ok. I kept waiting for Dr. H to come by on his rounds. After waiting for what seemed like forever he never came and we all went back to the house about 1 so that I could get the kids down for nap.
Rassie and I were both curious about his white count and how low they wanted it before they would let him come home. The Dr. had said 2-3 days in the hospital but the nurses would look at the chart and say it would be a while before Rassie would get to go home. We just wanted answers. Before I made it back to the hospital Dr. H did come by. He told Rassie that he wanted the count to come down to around 110,000 before sending him home and that would probably take 1-2 more days. That was good news and we were excited that the stay would not be much longer.
Later that night I went home to see the kids and play with them for a bit before getting them in bed. Then I went back and sat with Rassie until about midnight. He wasn't tired that night and wanted the company. I didn't mind.
Rassie and I were both curious about his white count and how low they wanted it before they would let him come home. The Dr. had said 2-3 days in the hospital but the nurses would look at the chart and say it would be a while before Rassie would get to go home. We just wanted answers. Before I made it back to the hospital Dr. H did come by. He told Rassie that he wanted the count to come down to around 110,000 before sending him home and that would probably take 1-2 more days. That was good news and we were excited that the stay would not be much longer.
Later that night I went home to see the kids and play with them for a bit before getting them in bed. Then I went back and sat with Rassie until about midnight. He wasn't tired that night and wanted the company. I didn't mind.
Meeting the Oncologist 9/26/2009
I woke up bright and early Saturday morning so that I could get myself and a few things for Rassie ready. Then I headed up to Scott & White to see Rassie and catch the oncologist. I did not want to miss meeting the doctor when he did his rounds. We waited and waitied. They started their rounds on the other side of the floor and Rassie's room was on the tail end and one of the last to be seen. While we were waiting, Rassie's brother Jerry and his wife Hayley came to visit and keep us company for a while.
Finally, about 12:30 Dr. H (the staff doctor), Dr. R (the resident) and a Fellow (some type of doctor) came in. Dr. H was wonderful. He explained everything in great detail in a language that we could actually understand. He was not just an in and out doctor and that really meant alot. Dr. H told us that Rassie's white blood cell had started out at 358,000 on Friday when they had done his labs. The normal range for white count is 4,000 to about 10,000. Dr. H explained that the hydroxyurea and allopurinol that Rassie had been put on was to help lower his white count and to get rid of the dead cells. So far they were doing their job. Rassie's white count had come down to 238,000.
Then Dr. H went over treatment options. There are two different ones they are considering for Rassie.
1) Gleevec - A pill that Rassie would take on a daily basis.
2) Bone Marrow Transplant
Although, with a bone marrow transplant, the leukemia could be cured and gone for good, it is a risky option. Gleevec would not be so risky.
A bone marrow transplant would mean extensive chemotherapy to kill off and destroy all the white counts, finding a donor that matched, the transplant itself and then immunosuppression if the bone marrow started attacking the new body it's in. I would be a long, hard process. The pill, Gleevec, which a chemical will replace chemotherapy treatments. You take it on a daily basis and are able to live your life as usual with no restrictions. I specifically asked Dr. H to make sure of the side effects Gleevec would have on Rassie and would it affect what he would be able to do. Dr. H responded with "why shouldd it?" . This pill only has minor side effects reported. Headaches, nausea, rash, little things like this. Other than that Rassie should feel no different than he ever has and will be able to continue with his activities and job regardless of how strenuous.
Dr. H had said they would probably keep him 2 to 3 more days until they could get his white count down a little more and then they would see him on an out patient basis at the clinic.
Once Dr. H left, a lady from admissions came in to go over paperwork with us. Then she told us how she prayed over the patient files for all of the patients that she sees. It was words from her prayer that gave us the inspiration to share our story. "Share your story to spread His Glory". And with that we agreed we would start a blog.
After that news, I went to pick up Scarlett at mom's and came back to the hospital. Scarlett was happy to see her daddy and daddy was happy to see both of his babies. Rassie's parents came into town and met us at the hospital about 4:30. We talked Rassie into getting out of the room and getting his mind off of things. We went down to the Healing Garden outside. It was nice but the mosquitos were awful so we moved things inside to the huge lobby. Rassie took Scarlett walking all around. She met some old men and gave them high fives. Rassie was having a good time too. Then we went back to his room and visited until about 7ish. I had to go home and get the kids fed and in bed. Scarlett was out before we made it home. She was exhausted from everything. Lane took a little longer to get to sleep but I finally headed back to the hospital with a grilled cheese in hand for Rassie. Rassie got hooked up for a blood transfusion before I made it back. His hemoglobin was pretty low, only at a 7. Dr. R felt it was safer to go ahead and get a transfusion then wait it out at that number. They ended up giving him 2 units of blood and it only brought his count up to an 8.8. I stayed with Rassie until about 11 p.m. and then I went home to get some rest.
Finally, about 12:30 Dr. H (the staff doctor), Dr. R (the resident) and a Fellow (some type of doctor) came in. Dr. H was wonderful. He explained everything in great detail in a language that we could actually understand. He was not just an in and out doctor and that really meant alot. Dr. H told us that Rassie's white blood cell had started out at 358,000 on Friday when they had done his labs. The normal range for white count is 4,000 to about 10,000. Dr. H explained that the hydroxyurea and allopurinol that Rassie had been put on was to help lower his white count and to get rid of the dead cells. So far they were doing their job. Rassie's white count had come down to 238,000.
Then Dr. H went over treatment options. There are two different ones they are considering for Rassie.
1) Gleevec - A pill that Rassie would take on a daily basis.
2) Bone Marrow Transplant
Although, with a bone marrow transplant, the leukemia could be cured and gone for good, it is a risky option. Gleevec would not be so risky.
A bone marrow transplant would mean extensive chemotherapy to kill off and destroy all the white counts, finding a donor that matched, the transplant itself and then immunosuppression if the bone marrow started attacking the new body it's in. I would be a long, hard process. The pill, Gleevec, which a chemical will replace chemotherapy treatments. You take it on a daily basis and are able to live your life as usual with no restrictions. I specifically asked Dr. H to make sure of the side effects Gleevec would have on Rassie and would it affect what he would be able to do. Dr. H responded with "why shouldd it?" . This pill only has minor side effects reported. Headaches, nausea, rash, little things like this. Other than that Rassie should feel no different than he ever has and will be able to continue with his activities and job regardless of how strenuous.
Dr. H had said they would probably keep him 2 to 3 more days until they could get his white count down a little more and then they would see him on an out patient basis at the clinic.
Once Dr. H left, a lady from admissions came in to go over paperwork with us. Then she told us how she prayed over the patient files for all of the patients that she sees. It was words from her prayer that gave us the inspiration to share our story. "Share your story to spread His Glory". And with that we agreed we would start a blog.
After that news, I went to pick up Scarlett at mom's and came back to the hospital. Scarlett was happy to see her daddy and daddy was happy to see both of his babies. Rassie's parents came into town and met us at the hospital about 4:30. We talked Rassie into getting out of the room and getting his mind off of things. We went down to the Healing Garden outside. It was nice but the mosquitos were awful so we moved things inside to the huge lobby. Rassie took Scarlett walking all around. She met some old men and gave them high fives. Rassie was having a good time too. Then we went back to his room and visited until about 7ish. I had to go home and get the kids fed and in bed. Scarlett was out before we made it home. She was exhausted from everything. Lane took a little longer to get to sleep but I finally headed back to the hospital with a grilled cheese in hand for Rassie. Rassie got hooked up for a blood transfusion before I made it back. His hemoglobin was pretty low, only at a 7. Dr. R felt it was safer to go ahead and get a transfusion then wait it out at that number. They ended up giving him 2 units of blood and it only brought his count up to an 8.8. I stayed with Rassie until about 11 p.m. and then I went home to get some rest.
Thursday, October 1, 2009
The Initial Diagnosis 9/25/2009
On the morning of Friday, September 25, 2009, Rassie was seen at the Scott & White Clinic for a routine check up because we had some concerns with a few things. In the past few months Rassie had noticed that the left side of his stomach was tight and had a hard spot. It also had become bruised. The bruise had gone away previously but had returned within the past few weeks. Rassie's feet had also started swelling, some days it was pretty bad. He started bruising more easily too. We didn't think anything of that because of his strenuous job.
That morning, Rassie saw Dr. R. (a resident) at the clinic. Dr. R. was concered about the hard spot on the left side of his stomach. She ordered immediate labwork and set up a ct scan for 2:30 that same afternoon. After doing labs Rassie came home for lunch. At 2 p.m. he was getting ready to head back for his ct scan when my cell phone rang. It was Dr. R. She explained that Rassie's white blood count was really high, too high to be just an infection. She wanted him to skip the ct scan that had been ordered and go straight to the ER to be admitted.
So I sent him on his way and told him I would be there just as soon as I could get the kids taken care of. Matt and Ashley came over to watch them until Mom could get here. I got the diaper bags ready while I waited. They were here in about 20-30 minutes. I called Rassie and told him I was on my way. It took all of 10 minutes to get to the ER but I was too late. Dr. R had already given Rassie the diagnosis. I felt just awful that she would break the news to him while he was there alone. She then told me what was going on. Rassie has Leukemia. CML - Chronic Myelogenous Leukemia to be exact. The good news was that it is chronic and not acute. This means that it is slow moving instead of fast paced. Dr. R could not really tell us much more until we talked to the oncologist. She left the room and we did our hugging and crying for a few minutes. Then we were interrupted. The ER went ahead and did a ct scan and confirmed that Rassie's spleen was enlarged from working over time. The bone marrow was putting out excess white blood cells and the spleen was trying to take care of them all.
They were done with tests for the time being and all we were waiting on then was a room on the oncology floor so that Rassie could be moved into it. I ran home to meet my mom and get the kids sent home with her. Rassie called and said they had a room that they were getting ready for him so I made my way back to the hospital. Room NT 806. I beat Rassie to the room. Dr. R came in and she explained to me again what type of leukemia Rassie had so that I could write it down. Finally transportation brought Rassie up. Dr. R said that Rassie would be put on a saline drip for hydration and two different oral medications to help lower his white blood count. Hydroxyurea and Allopurinol. She said we would meet with Dr. H, the oncologist, in the morning to discuss treatment options.
Rassie's brother came down with his wife and son to visit that night. They ordered him pizza and kept him entertained for a while. I stayed until about 11 or so and then went hom to get some sleep. That first night was the hardest. There were still so many unanswered questions and the main question of "why Rassie?" "why our family?" These are questions that we still do not have the answer to and probably never will.
That morning, Rassie saw Dr. R. (a resident) at the clinic. Dr. R. was concered about the hard spot on the left side of his stomach. She ordered immediate labwork and set up a ct scan for 2:30 that same afternoon. After doing labs Rassie came home for lunch. At 2 p.m. he was getting ready to head back for his ct scan when my cell phone rang. It was Dr. R. She explained that Rassie's white blood count was really high, too high to be just an infection. She wanted him to skip the ct scan that had been ordered and go straight to the ER to be admitted.
So I sent him on his way and told him I would be there just as soon as I could get the kids taken care of. Matt and Ashley came over to watch them until Mom could get here. I got the diaper bags ready while I waited. They were here in about 20-30 minutes. I called Rassie and told him I was on my way. It took all of 10 minutes to get to the ER but I was too late. Dr. R had already given Rassie the diagnosis. I felt just awful that she would break the news to him while he was there alone. She then told me what was going on. Rassie has Leukemia. CML - Chronic Myelogenous Leukemia to be exact. The good news was that it is chronic and not acute. This means that it is slow moving instead of fast paced. Dr. R could not really tell us much more until we talked to the oncologist. She left the room and we did our hugging and crying for a few minutes. Then we were interrupted. The ER went ahead and did a ct scan and confirmed that Rassie's spleen was enlarged from working over time. The bone marrow was putting out excess white blood cells and the spleen was trying to take care of them all.
They were done with tests for the time being and all we were waiting on then was a room on the oncology floor so that Rassie could be moved into it. I ran home to meet my mom and get the kids sent home with her. Rassie called and said they had a room that they were getting ready for him so I made my way back to the hospital. Room NT 806. I beat Rassie to the room. Dr. R came in and she explained to me again what type of leukemia Rassie had so that I could write it down. Finally transportation brought Rassie up. Dr. R said that Rassie would be put on a saline drip for hydration and two different oral medications to help lower his white blood count. Hydroxyurea and Allopurinol. She said we would meet with Dr. H, the oncologist, in the morning to discuss treatment options.
Rassie's brother came down with his wife and son to visit that night. They ordered him pizza and kept him entertained for a while. I stayed until about 11 or so and then went hom to get some sleep. That first night was the hardest. There were still so many unanswered questions and the main question of "why Rassie?" "why our family?" These are questions that we still do not have the answer to and probably never will.
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