The results are back from the bone marrow biopsy and the results are good, there are no detectable plasma cells in the bone marrow, the doctor says I am in complete remission. The hope was to have 10% or less, but they are currently non-detectable. This is the best position to be in before the stem cell transplant.
I am currently off all drugs and looking forward to lots of energy in the next three weeks before the stem cell transplant process starts. They stopped all drugs to allow the stem cell collection to go smoother, some of the drugs make it harder to collect stem cells.
I have sailed through the first part of the journey, I believe the second part will be a bit harder, but I am ready for it to be done.
Tuesday, June 21, 2011
Saturday, June 18, 2011
June 2011 - The Actual Tests
Yesterday was my visit to Rush for required tests and meetings to prepare for the stem cell transplant. The tests were no big deal, though dealing with some people give me concern. I have to say all the technicians performing the tests were great people.
Here is how my day went.
- Arrived at the hospital at 7:00 am
- Registered for my first appointment
- 7:05 Vitals and Blood Draw. This is were things start to get intresitng. The nurse prints out labels for my blood draw, fifteen labels = fifteen vials of blood. The nurse then leaves to get the Phlebotomist. The Phlebotomist comes in, reads the labels chuckles and then leaves the room. She comes back and I inquire about what was so funny and come to find out one of the blood tests to be drawn was a pregnancy test.
- 7:30 Next it was off to meet with the patient coordinator (SD). We have 30 minutes before my next appointment. She informs me that my schedule for today has changed, due to the fact that she has to leave early today to go play golf with her Dad, really? I know it fathers day weekend, but really? So we start getting some papers signed early in the time we have.
- 8:00 off to the pulmonary function test. This test was rather easy, basically I sat in a glass box and did breathing in a tube through my mouth with my nose pinched shut. Below is a picture of the actual box I sat in.
Once in the glass booth I had to breath normally, inhale and exhale as deep as I could. Just when you think you have exhaled all the air from your lungs the technician tells you to keep going.
- 9:00 Psychosocial Meeting, believe or not this was one of my highlights of the day. This doctor was fantastic. She suggested services we were not aware of and truly had concern for my well being. She also suggested I start taking a new medicine and would talk this over with SD and Dr. HF. She knew a lot about the stem cell process and helped me prepare for the days to come. I believe this meeting went longer than expected, but it was time well spent.
- 10:00 back to meet with SD, so she can leave early, this was a change from the original schedule. SD already has the prescription for the new drug from the 9:00 meeting, funny since Dr. HF is out of the office today. We go over some more papers and then I sign the papers. We have a few minutes for some of my questions, but we are starting to run late for the next appointment. The tour of the unit were I will be staying has to be postponed until the next visit.
- 11:15 or there about. Time to meet with the surgeon who will put in the central line. This is somewhat of an interesting visit. First the nurse that works with this doctor is either new or very frazzled. She has to enter my medications that I take into the computer, at times I don't think she is familiar with the medication names. Next she tries to take my temperature but is unsure how to use the device and eventually gives up. Then she tries to take my blood pressure and states she will have the doctor do it since he is much better at this than her. Where am I, did I just enter a new dimension? Next the doctor comes in, seems to be upset that we were late for the appointment. He explains how and were the central line will be placed and has a sample central line so we know what it looks like. He takes my blood pressure and it is high, which gives him concern and states I should alert this to my primary doctor. Next he has a paper with the surgery date of July 6th, I state that I thought the surgery was scheduled for July 7th. He checks something comes back and agrees it will be July 7th. I also remember the new prescription I just received and bring that to the doctors attention. Not remembering the drug name I have to pull the prescription out to show him. He asks, did you see Dr. HF today; he knew he was not in; and I state no I did not. I think I might have gotten someone in trouble. I do not leave this appointment with a level of comfort.
12:30 - time to switch buildings and find the nuclear medicine department. On our way to nuclear medicine we pass a cafeteria and grab a quick sandwich, what a relief I thought I was going to miss lunch.
1:00 - Muga Scan. I register and proceed to the waiting room. I start to read the paperwork as we wait and notice my diagnosis is listed as Hodgkins Lymphoma, though I don't think this has anything to do with how the scan will be done I bring this up to the technician. He agrees that it does not impact the test, but he would get it changed. The Muga scan test is another easy test. I lay down on a table, the technician draws a vial of blood. He then mixes the blood with a isotope (marker) which takes about 15 minutes. Then he injects the blood back into my body. Next three leads are attached to my chest, then I am slid into or near the machine that will take pictures of my heart. Each picture takes ten minutes and two pictures are taken. Below is a picture of the machine used.
2:30 - EKG. The quickest test by far. The technician puts ten leads at different points on my body. One on each leg, two at the top of the chest and the rest at different points on the left side of the chest. After the leads are hooked up, she runs the test, which seemed like 30-60 seconds and then she removes the leads.
3:00 - Chest X-Ray. Another quick test, though this part of the hospital seems to be very old and outdated. The test is rather simple, stand in front of the X-Ray machine and the picture is taken.
That is it, the day of testing is complete.
Here is how my day went.
- Arrived at the hospital at 7:00 am
- Registered for my first appointment
- 7:05 Vitals and Blood Draw. This is were things start to get intresitng. The nurse prints out labels for my blood draw, fifteen labels = fifteen vials of blood. The nurse then leaves to get the Phlebotomist. The Phlebotomist comes in, reads the labels chuckles and then leaves the room. She comes back and I inquire about what was so funny and come to find out one of the blood tests to be drawn was a pregnancy test.
- 7:30 Next it was off to meet with the patient coordinator (SD). We have 30 minutes before my next appointment. She informs me that my schedule for today has changed, due to the fact that she has to leave early today to go play golf with her Dad, really? I know it fathers day weekend, but really? So we start getting some papers signed early in the time we have.
- 8:00 off to the pulmonary function test. This test was rather easy, basically I sat in a glass box and did breathing in a tube through my mouth with my nose pinched shut. Below is a picture of the actual box I sat in.
Once in the glass booth I had to breath normally, inhale and exhale as deep as I could. Just when you think you have exhaled all the air from your lungs the technician tells you to keep going.
- 9:00 Psychosocial Meeting, believe or not this was one of my highlights of the day. This doctor was fantastic. She suggested services we were not aware of and truly had concern for my well being. She also suggested I start taking a new medicine and would talk this over with SD and Dr. HF. She knew a lot about the stem cell process and helped me prepare for the days to come. I believe this meeting went longer than expected, but it was time well spent.
- 10:00 back to meet with SD, so she can leave early, this was a change from the original schedule. SD already has the prescription for the new drug from the 9:00 meeting, funny since Dr. HF is out of the office today. We go over some more papers and then I sign the papers. We have a few minutes for some of my questions, but we are starting to run late for the next appointment. The tour of the unit were I will be staying has to be postponed until the next visit.
- 11:15 or there about. Time to meet with the surgeon who will put in the central line. This is somewhat of an interesting visit. First the nurse that works with this doctor is either new or very frazzled. She has to enter my medications that I take into the computer, at times I don't think she is familiar with the medication names. Next she tries to take my temperature but is unsure how to use the device and eventually gives up. Then she tries to take my blood pressure and states she will have the doctor do it since he is much better at this than her. Where am I, did I just enter a new dimension? Next the doctor comes in, seems to be upset that we were late for the appointment. He explains how and were the central line will be placed and has a sample central line so we know what it looks like. He takes my blood pressure and it is high, which gives him concern and states I should alert this to my primary doctor. Next he has a paper with the surgery date of July 6th, I state that I thought the surgery was scheduled for July 7th. He checks something comes back and agrees it will be July 7th. I also remember the new prescription I just received and bring that to the doctors attention. Not remembering the drug name I have to pull the prescription out to show him. He asks, did you see Dr. HF today; he knew he was not in; and I state no I did not. I think I might have gotten someone in trouble. I do not leave this appointment with a level of comfort.
12:30 - time to switch buildings and find the nuclear medicine department. On our way to nuclear medicine we pass a cafeteria and grab a quick sandwich, what a relief I thought I was going to miss lunch.
1:00 - Muga Scan. I register and proceed to the waiting room. I start to read the paperwork as we wait and notice my diagnosis is listed as Hodgkins Lymphoma, though I don't think this has anything to do with how the scan will be done I bring this up to the technician. He agrees that it does not impact the test, but he would get it changed. The Muga scan test is another easy test. I lay down on a table, the technician draws a vial of blood. He then mixes the blood with a isotope (marker) which takes about 15 minutes. Then he injects the blood back into my body. Next three leads are attached to my chest, then I am slid into or near the machine that will take pictures of my heart. Each picture takes ten minutes and two pictures are taken. Below is a picture of the machine used.
2:30 - EKG. The quickest test by far. The technician puts ten leads at different points on my body. One on each leg, two at the top of the chest and the rest at different points on the left side of the chest. After the leads are hooked up, she runs the test, which seemed like 30-60 seconds and then she removes the leads.
3:00 - Chest X-Ray. Another quick test, though this part of the hospital seems to be very old and outdated. The test is rather simple, stand in front of the X-Ray machine and the picture is taken.
That is it, the day of testing is complete.
Thursday, June 16, 2011
June 2011 - Test Time
Things seem to be moving fast, and the stem cell transplant is approaching quickly now. I had another bone marrow biopsy on Tuesday of this week, won't get the test results until next week, at least I hope to get the results next week. I have an appointment with the local doctor on Monday 6/20.
Getting ready to spend the day in the city tomorrow (Friday 6/17) for a full day of testing. I need to arrive at the hospital by 7:00 am. The day looks something like this:
7:00 Register, vitals and blood draw
8:00 Pulonary Function Test
9:00 Psychosocial Consult
10:00 Chest Xray
10:30 EKG
11:15 Surgery consult (for central line)
1:00 Muga Scan
2:30 Consent signing and tour of bone marrow transplant unit
4:00 Back on the road home, just in time for rush hour on Friday.
What is a central line you ask? Of all of the stuff I have to go through in the next month the central line and the high dose Chemo are my two least favorites. The central line is a catheter they will surgically implant in my neck / chest. They will put this in on July 7th and hopefully remove it when I am released from the hospital.
Once the central line is in place, it is used to extract the stem cells, blood draws, administer medications and to put the stem cells back. I am sure there are other purposes also.
Well if you read my last post you understand how I am know the patient liaison between the local doctor and the stem cell transplant doctor. It even gets more interesting, I had a list 13 blood tests that were ordered last week, the blood was drawn at the local hospital. Well it seems the hospital did at least one test in in error (a test that was not on my orders, who pays for this one?) and missed a few tests that were on the orders. I wondered why there was 13 tests and only 8 vials of blood, maybe the blood can be shared among tests or maybe not. Rush will draw the blood tomorrow for the missing and tests done in error? I feel I need to have my orders with me and ask the Phlebotomist what each tube of blood is for. Do you think this stuff happens all the time, kind of scary when your life depends on the tests they are doing.
Well I will post an update after tomorrows visit.
Getting ready to spend the day in the city tomorrow (Friday 6/17) for a full day of testing. I need to arrive at the hospital by 7:00 am. The day looks something like this:
7:00 Register, vitals and blood draw
8:00 Pulonary Function Test
9:00 Psychosocial Consult
10:00 Chest Xray
10:30 EKG
11:15 Surgery consult (for central line)
1:00 Muga Scan
2:30 Consent signing and tour of bone marrow transplant unit
4:00 Back on the road home, just in time for rush hour on Friday.
What is a central line you ask? Of all of the stuff I have to go through in the next month the central line and the high dose Chemo are my two least favorites. The central line is a catheter they will surgically implant in my neck / chest. They will put this in on July 7th and hopefully remove it when I am released from the hospital.
Once the central line is in place, it is used to extract the stem cells, blood draws, administer medications and to put the stem cells back. I am sure there are other purposes also.
Well if you read my last post you understand how I am know the patient liaison between the local doctor and the stem cell transplant doctor. It even gets more interesting, I had a list 13 blood tests that were ordered last week, the blood was drawn at the local hospital. Well it seems the hospital did at least one test in in error (a test that was not on my orders, who pays for this one?) and missed a few tests that were on the orders. I wondered why there was 13 tests and only 8 vials of blood, maybe the blood can be shared among tests or maybe not. Rush will draw the blood tomorrow for the missing and tests done in error? I feel I need to have my orders with me and ask the Phlebotomist what each tube of blood is for. Do you think this stuff happens all the time, kind of scary when your life depends on the tests they are doing.
Well I will post an update after tomorrows visit.
Saturday, June 4, 2011
June 2011 - My Second Job
Who knew I had more than one job, well my second job I don't get paid for in dollars, but have other rewards.
I have found out this week that no matter how much insurance pays the doctors it is still my job to make sure the doctors talk to each other and order the tests that each other requests. I have a local hematologist (PM) who administers treatments and performs monthly checkups. I have a transplant doctor at Rush (HF) that will perform the actual transplant. I also have patient coordinator (SD) at Rush, who is responsible for scheduling all tests and taking care of all logistics with the transplant.
Here is the problem and where my second job comes in. SD sent PM a letter on May 12th listing all the tests that need to be done before I can proceed to Rush. SD called me one week ago last Thursday to see how things were going in cycle 4 and stated she was scheduling some pre-transplant tests for Friday June 17th at Rush. These tests are done to make sure my heart, lungs, kidneys...are healthy enough for a transplant. SD stated she would call me back on Friday or the Tuesday after Memorial Day. Well Thursday rolled around last week at still no call from SD, so I called her. Things are all set for June 17th, and she wanted to know if I had my tests scheduled that needed done locally with PM. These tests are used to stage the disease before the transplant. Well as far as I knew nothing had been scheduled. SD stated the tests need to be done on June 13th and she needed the results by June 20th. I had to go to PM's office Friday for a treatment, so I checked to see if the tests had been scheduled. Well at first glance at my file I was told they had not received the letter from SD. Then they tracked down the doctor and found he had the letter, but nothing had been scheduled and no orders had been placed for the tests. PM assured me he would place the orders and that I could schedule the tests next week at the local hospital, which I plan to do Monday morning. I have my fingers crossed that PM follows through in a timely manner.
Here is how I thought the above would happen. SD would contact PM. PM would schedule the tests and call me with the dates and times. I guess it is my job to make sure the tests are scheduled and scheduled on time.
The other thing SD told me is we are sticking to the dates she had originally gave me and starting July 7th I should plan to be off for 3 months.
I have found out this week that no matter how much insurance pays the doctors it is still my job to make sure the doctors talk to each other and order the tests that each other requests. I have a local hematologist (PM) who administers treatments and performs monthly checkups. I have a transplant doctor at Rush (HF) that will perform the actual transplant. I also have patient coordinator (SD) at Rush, who is responsible for scheduling all tests and taking care of all logistics with the transplant.
Here is the problem and where my second job comes in. SD sent PM a letter on May 12th listing all the tests that need to be done before I can proceed to Rush. SD called me one week ago last Thursday to see how things were going in cycle 4 and stated she was scheduling some pre-transplant tests for Friday June 17th at Rush. These tests are done to make sure my heart, lungs, kidneys...are healthy enough for a transplant. SD stated she would call me back on Friday or the Tuesday after Memorial Day. Well Thursday rolled around last week at still no call from SD, so I called her. Things are all set for June 17th, and she wanted to know if I had my tests scheduled that needed done locally with PM. These tests are used to stage the disease before the transplant. Well as far as I knew nothing had been scheduled. SD stated the tests need to be done on June 13th and she needed the results by June 20th. I had to go to PM's office Friday for a treatment, so I checked to see if the tests had been scheduled. Well at first glance at my file I was told they had not received the letter from SD. Then they tracked down the doctor and found he had the letter, but nothing had been scheduled and no orders had been placed for the tests. PM assured me he would place the orders and that I could schedule the tests next week at the local hospital, which I plan to do Monday morning. I have my fingers crossed that PM follows through in a timely manner.
Here is how I thought the above would happen. SD would contact PM. PM would schedule the tests and call me with the dates and times. I guess it is my job to make sure the tests are scheduled and scheduled on time.
The other thing SD told me is we are sticking to the dates she had originally gave me and starting July 7th I should plan to be off for 3 months.
Tuesday, May 31, 2011
May 2011 - Induction - Cycle 4 - Day 9
Back to the clinic today for a treatment, not much new to report. They did a CBC today and most of my numbers are up, actually all numbers are up but platelets.
Talked to the patient coordinator at Rush last week, sounds like we might be sticking pretty close to the dates I posted a few weeks back. She was trying to get everything scheduled and was supposed to call me back last Friday or today, but not to my surprise I have not heard from her yet.
Made a connection with another person in Texas who had a stem cell transplant when he was 44, he is now 52. He gave me a nice outline of how his process went, though it seems to be different for everyone I am hoping the more people I find around my age might give me a better idea of what to expect. I am in the minority, only 3% of the people diagnosed with this disease are in there 40's, the majority of people are 65 and older.
Hope everyone had a nice memorial day weekend. We had two days of rain and one sunny hot and humid day. All in all it was good.
| WBC | 8.8 | Up |
| Grans | 7.8 | Up |
| Hemoglobin | 14.7 | Up |
| Platelets | 110 | Down |
Talked to the patient coordinator at Rush last week, sounds like we might be sticking pretty close to the dates I posted a few weeks back. She was trying to get everything scheduled and was supposed to call me back last Friday or today, but not to my surprise I have not heard from her yet.
Made a connection with another person in Texas who had a stem cell transplant when he was 44, he is now 52. He gave me a nice outline of how his process went, though it seems to be different for everyone I am hoping the more people I find around my age might give me a better idea of what to expect. I am in the minority, only 3% of the people diagnosed with this disease are in there 40's, the majority of people are 65 and older.
Hope everyone had a nice memorial day weekend. We had two days of rain and one sunny hot and humid day. All in all it was good.
Monday, May 23, 2011
May 2011 - Induction - Cycle 4 - Day 1
Here we go, last induction cycle. It was questionable if cycle 4 would be done due to my good response to the treatment so far, but the decision was made to move forward. The idea is since I don't have many side effects, why not try and beat it down as much as possible.
Met with the local doctor today, he was in a very upbeat mood, cracking jokes and very attentive and not rushed. He told me due to number of questions I normally have, he blocks out 30 minutes for me rather than the normal 15 minutes. That was nice to hear. He was also very concerned about the patient coordinator at Rush not following through and doing what she tells us she is going to do. She was to already contact the local doctor and has not...concerned. Makes second guess my decision to go to Rush for such an important procedure.
Though the doctor did not have all the blood test results from some of Fridays blood test, which I don't understand why they can't get these tests done in time for my scheduled visits. One of the most important aspects of our visit is to discuss the results. So we discussed some of the test results that he did not have from the last visit at the end of cycle 2. Which were all very good. I can't get the doctor to say I am in complete remission, he likes to use the term partial complete remission. Though I think he is holding out for the bone marrow biopsy, which will probably be done in about 3 weeks. If that comes back with 10% or less plasma cells then I might be in complete remission, which is a good place to be in before the stem cell transplant. All in all very positive news, I have to say this is the first time the local doctor gave us hope.
I follow some other blog posts of people with Myeloma, and found a gentleman by the name of Nick who lives in California and receives treatment at the University Medical Center Arkansas, a well known Myeloma treatment center. I had researched and weighed my options of going there myself. Nick is similar in age and has already gone through a stem cell transplant, he is a wealth of information. I have trade e-Mails with him and he answers all my questions, seems to be a great guy. He posted on his blog how UMAS prescribes more of the Revlimid drug than anyone else in the world and the drug is very promising. That is one of the drugs I have been taking and will most likely be on a reduced dose for maintenance therapy after the stem cell transplant.
The doctor made the comment today that I looked physically good and similar to Stephanie's comment people who see me probably can't tell I am sick or going through treatments. They are both right. Other than getting tired at times, I pretty much can do what I want, or should I say anything the boss (Jane) feels is safe. Yard work requires gloves, touch anything or anyone the hand sanitizer comes out. She opens doors for me; which by the way makes me feel like a looser; but I understand why she does it. Hands are the number way germs are passed.
Well back to Iowa tomorrow morning for work, time to get to bed for hopefully a good night sleep.
Met with the local doctor today, he was in a very upbeat mood, cracking jokes and very attentive and not rushed. He told me due to number of questions I normally have, he blocks out 30 minutes for me rather than the normal 15 minutes. That was nice to hear. He was also very concerned about the patient coordinator at Rush not following through and doing what she tells us she is going to do. She was to already contact the local doctor and has not...concerned. Makes second guess my decision to go to Rush for such an important procedure.
Though the doctor did not have all the blood test results from some of Fridays blood test, which I don't understand why they can't get these tests done in time for my scheduled visits. One of the most important aspects of our visit is to discuss the results. So we discussed some of the test results that he did not have from the last visit at the end of cycle 2. Which were all very good. I can't get the doctor to say I am in complete remission, he likes to use the term partial complete remission. Though I think he is holding out for the bone marrow biopsy, which will probably be done in about 3 weeks. If that comes back with 10% or less plasma cells then I might be in complete remission, which is a good place to be in before the stem cell transplant. All in all very positive news, I have to say this is the first time the local doctor gave us hope.
I follow some other blog posts of people with Myeloma, and found a gentleman by the name of Nick who lives in California and receives treatment at the University Medical Center Arkansas, a well known Myeloma treatment center. I had researched and weighed my options of going there myself. Nick is similar in age and has already gone through a stem cell transplant, he is a wealth of information. I have trade e-Mails with him and he answers all my questions, seems to be a great guy. He posted on his blog how UMAS prescribes more of the Revlimid drug than anyone else in the world and the drug is very promising. That is one of the drugs I have been taking and will most likely be on a reduced dose for maintenance therapy after the stem cell transplant.
The doctor made the comment today that I looked physically good and similar to Stephanie's comment people who see me probably can't tell I am sick or going through treatments. They are both right. Other than getting tired at times, I pretty much can do what I want, or should I say anything the boss (Jane) feels is safe. Yard work requires gloves, touch anything or anyone the hand sanitizer comes out. She opens doors for me; which by the way makes me feel like a looser; but I understand why she does it. Hands are the number way germs are passed.
Well back to Iowa tomorrow morning for work, time to get to bed for hopefully a good night sleep.
Friday, May 13, 2011
May 2011 - Induction - Cycle 3 - Day 18
No injections this week or next week. Next week will be my week off of medications except for the dreaded steroid, seems the longer I take the steroid the more it beats me up, mainly affecting my sleep pattern. I can go 24 hours on Monday; usually get at least 4 hours of sleep Monday night; but that eventually catches up with me. This week has been rough on sleep, I drove to Iowa on Wednesday, thunderstorms Wednesday night at 3:00 and a day in Chicago on Thursday. Fell asleep last night at 7:30, Jane woke me up about 9:00 to go to bed and to my surprise told me James Durbin was voted off American Idol, but that is a story for another blog. I woke up at 4:00 this morning starving and had to get something to eat. Usually by the weekend I am back to normal, then start it over again on Monday.
Only had an INR blood test for the blood thinner, next CBC and other blood tests schedule for Friday of next week. Then meet with the doctor on Monday May 23rd.
Yesterday Jane and I spent most of the day at Rush University Medical Center, we had an appointment with the doctor and nurse coordinator to go over a list of questions I had comprised. Our appointment was at 12:00, though I was told to arrive at 11:15 for vitals before we meet. I met my end of the bargain, despite the traffic and going to the eighth level of the parking garage I checked in at 11:16, pretty good. We sat in the waiting room, and sat and sat; the time was 12:30; then shortly the nurse coordinator came out to get us. The doctor had another meeting so his time was limited. The nurse coordinator looked over my list of questions and had the doctor answer the questions she felt she could not answer, then the doctor was excused to go to his meeting. Don't get me wrong, I am not really complaining, the nurse coordinator was able to answer the rest of the questions and was extremely knowledgable. She spent over 2 hours with us and I am sure the time she spent with us might have made her late to other appointments she had. So I can understand why she could have been late for our appointment. I had over 50 questions in an organized document, anyone who knows me well knows that I am a highly detailed and organized person. I spend so much time analyzing and researching, I am continually finding more information to read.
I will highlight a few questions:
Stem cell collection
Question
The standard is to collect enough stem cells for 2 stem cell transplants, which is about 4 million total. I wanted to know if they could collect more and if there would be a benefit to this. My fear here is I have read once I get the high dose chemotherapy stem cells cannot be collected
Answer
The doctor stated stem cells only have a shelf life of 10 years. He also reassured me that in 5 years they could recollect even after the high dose chemotherapy.
Vaccinations
Question
Do I need to be concerned if Lexie just received the chicken pox vaccine or if my niece or nephews have vaccines?
Answer
Chicken pox vaccine is not a live vaccine and there is no concern. What I took away from this is as long as the vaccine is not a live virus there is not a problem. Though I was told I will need to be revaccinated in a year after the SCT.
Hospital Visitors
Question
The hospital sent me information that stated the ward I will be in cannot have any visitors under the age of 12. Lexie is 10, almost 11 any exceptions?
Answer
No exceptions, and the reason why is very understandable. The point that was made is that Lexie might have virus's that I am immune to, but the person one room over might not have that immunity. When Lexie comes to visit she will wait in the family room and I can come out to see her once I suit up with a mask, gloves and gown.
That is just a small sampling, there were many more questions. Probably one of the more important questions was will there be 3 or 4 cycles of induction therapy and what is the schedule for the SCT?
The doctor stated there will be 4 induction cycles, even with my good response. We are just going to keep hammering the bad cells out. So with that information we have a very tentative schedule.
All of these date are very tentative and will most likely be refined or changed, but the steps will most likely be the same.
Only had an INR blood test for the blood thinner, next CBC and other blood tests schedule for Friday of next week. Then meet with the doctor on Monday May 23rd.
Yesterday Jane and I spent most of the day at Rush University Medical Center, we had an appointment with the doctor and nurse coordinator to go over a list of questions I had comprised. Our appointment was at 12:00, though I was told to arrive at 11:15 for vitals before we meet. I met my end of the bargain, despite the traffic and going to the eighth level of the parking garage I checked in at 11:16, pretty good. We sat in the waiting room, and sat and sat; the time was 12:30; then shortly the nurse coordinator came out to get us. The doctor had another meeting so his time was limited. The nurse coordinator looked over my list of questions and had the doctor answer the questions she felt she could not answer, then the doctor was excused to go to his meeting. Don't get me wrong, I am not really complaining, the nurse coordinator was able to answer the rest of the questions and was extremely knowledgable. She spent over 2 hours with us and I am sure the time she spent with us might have made her late to other appointments she had. So I can understand why she could have been late for our appointment. I had over 50 questions in an organized document, anyone who knows me well knows that I am a highly detailed and organized person. I spend so much time analyzing and researching, I am continually finding more information to read.
I will highlight a few questions:
Stem cell collection
Question
The standard is to collect enough stem cells for 2 stem cell transplants, which is about 4 million total. I wanted to know if they could collect more and if there would be a benefit to this. My fear here is I have read once I get the high dose chemotherapy stem cells cannot be collected
Answer
The doctor stated stem cells only have a shelf life of 10 years. He also reassured me that in 5 years they could recollect even after the high dose chemotherapy.
Vaccinations
Question
Do I need to be concerned if Lexie just received the chicken pox vaccine or if my niece or nephews have vaccines?
Answer
Chicken pox vaccine is not a live vaccine and there is no concern. What I took away from this is as long as the vaccine is not a live virus there is not a problem. Though I was told I will need to be revaccinated in a year after the SCT.
Hospital Visitors
Question
The hospital sent me information that stated the ward I will be in cannot have any visitors under the age of 12. Lexie is 10, almost 11 any exceptions?
Answer
No exceptions, and the reason why is very understandable. The point that was made is that Lexie might have virus's that I am immune to, but the person one room over might not have that immunity. When Lexie comes to visit she will wait in the family room and I can come out to see her once I suit up with a mask, gloves and gown.
That is just a small sampling, there were many more questions. Probably one of the more important questions was will there be 3 or 4 cycles of induction therapy and what is the schedule for the SCT?
The doctor stated there will be 4 induction cycles, even with my good response. We are just going to keep hammering the bad cells out. So with that information we have a very tentative schedule.
| Tentative Date |
Step |
|---|---|
| June 13 | Bone Marrow Biopsy Skeletal Survey 24 Hour Urine Test Labs - Complete Panel |
| June 17 | Muga Scan Pulmonary function test Chest Xray EKG ... |
| July 7 | Line surgically implanted in my chest |
| July 8 | Start Neupogen Shots - These shots are self administered and cause the body to start producing more stem cells. I was told these are $23,000 a shot, thanks goodness for insurance. |
| July 11 | Mobilization Shot - Tells the stem cells to leave the bone marrow and move into the blood stream |
| July 12-15 | Stem Cells Collected |
| July 18 | Office Visit |
| July 20 | High Dose Chemo |
| July 21 | Admitted to Hospital |
All of these date are very tentative and will most likely be refined or changed, but the steps will most likely be the same.
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