Friday we came up to OKC to meet with Stevan's new doctor, Dr Hummer, intern for endocrinology, who will be working on his adrenal gland deficiency. We got up at 3:30 this morning to get on the road for pre-lab work at 8am and then a series of blood draws after a dose of medicine to see what his adrenal gland is doing. They believe that he doesn't really have an adrenal problem, but after nine and a half rounds of Revlimid, it has his adrenal gland temporarily not working. This lab work today should tell her what's going on with it as well as if there are some other issues going on that we are not aware of.
This afternoon we meet with Dr White, Orthopedic Oncology, about Stevan bone infection issue. We are hoping they tell us that all looks good and the infection is cleared or clearing up. He will have some x-rays taken of his arm and possibly more blood work. Poor guy is always getting stuck!
School started for me last Monday. We got kids in the classroom on Wednesday. Another year has begun. Did I mention I'm also taking an online graduate math class this semester? Yeah... Like I don't have enough to do... I know. With this class and one more in the spring, I should be ready to teach college full time, if I'm given the opportunity.
Off for now.... More info when we have it.
Us before Myeloma
Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Monday, August 27, 2012
Friday, August 3, 2012
Home Day +72
Yesterday was a day for us to relax and catch up on things. I want to follow up with what happened to lead Stevan to be released.
Stevan felt so much better on Wednesday morning. He had not ran a fever since Monday night. He had not had his Vancomycine since Sunday night. Dr White had ran a bone scan and saw that the infection had been responding to the antibiotic and looked better than before. His Potassium was on the low side, so they gave him some per IV and in a couple of pills and then was able to have his picc line removed. They sent the end of it to the lab to check for bacteria or infection.
They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.
Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.
Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.
With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.
They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.
Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.
Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.
With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.
Wednesday, August 1, 2012
Headed Home Day +70
We are headed home right now. We will be tired by the time we get there, so I will post the details of today tomorrow. Thank you for your thoughts and prayers. God has carried us through another set of unforeseen circumstances. He is an amazing God.
Tuesday, July 31, 2012
Finally Day +69
Right after I posted my last post we asked the nurse to call Stevan's doctors and see if we could find out what was going on since no one had been back to talk to us. She did and we got to talk to him over the phone.
Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.
So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.
They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.
Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.
So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.
They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.
A Night Mare Of A Day Explained Day +69
Yesterday was a really bad day. I need to fill in what happened to bring us to a room here at OU Medical Center.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
Stevan slept the rest of the drive to OKC. He had to turn in his 24 hour urine sample and give a blood sample at the lab. They couldn't get it to draw on the first poke and on the second it was going slow (they said he was dehydrated from throwing up earlier). Before they got the comlete sample, Stevan passed out and began throwing up. He was blackout for a good bit (estimate about a minute) before coming too. The lab tech's called the medics and got him a cot but he didn't want to lay down. He was beginning to feel better by the time the medics got there and began checking him out.
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
 |
| Only with God's strength was I able to get through yesterday. |
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
As they took him into the elevator, Dr White was coming down the hall. I walked with him downstairs to tell him what had been happening today. White caught up to Stevan and told him that he had to go to the hospital and that he would come over and check him out over there.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Monday, July 30, 2012
Hello Hospital Room Day + 68
I'm going to make this short. It's been a L O N G D A Y..... I will go into detail tomorrow what today has dished out to us. In short, this morning we left the house to go to Dr Whites office for his appointment at 11am to discuss the possibility of pulling out the rod in his left humorous that was put in last year but has caused him to develop the bone infection after his transplant. We got a mile from the house and he had me stop so he could throw up. I gave him some Immotrole but a few miles down the road he had to purge again. We were able to keep going with out any further problems. We had to stop at the lab to drop off his 24 hour urine sample, which also meant that they had to draw a blood sample to go along with it... That's when all of Stevan's problems began to get worse. I will leave these next details til tomorrow.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
Saturday, July 28, 2012
"I'm sick" Day +66
Everything was going so well with Stevan's transplant... now it seems like everything is going wrong.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
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