Well today we went to visit a new local oncologist to see if we could get one that could treat me up here in an emergency, prescribe blood tests and drugs and carry out the instructions of Dr. Kipps if I wanted to be treated locally instead of in La Jolla.
We had to choose one that is under our insurance, can admit to my insurance covered hospital (LB Memorial), and that would agree with Dr. Kipps on a treatment plan. This is not an easy thing to do, but we may have succeeded. Dr. Curti was recommended by my friend Tom B. who knew him thru Los Alamitos Hospital. He is on the younger side, and seems open to having a 'worldwide expert' (his words, not mine), who would be directing the treatment plan.
He listened intently to my ordeal and seemed genuinely interested. He of course, treats CLL using the protocols that he has found effective. He told me that he would want to treat me a certain way, but he would call Dr. Kipps and find out what his recommendation would be and unless it was off the wall, he would follow his recommendations.
He was curious as to why I had not had a Cat Scan done, and was going to ask Dr. Kipps that question as well. He was impressed by the binder that we brought in, and about our knowledge of the disease and the treatment options. He also liked that we got a second opinion from a leading doctor in the field. He did take some blood and my Red Count has gone up slightly to 11.8 (from 11.6) and my whites have gone down a little to 116,000 (from (119,000).
He is going to call Dr. Kipps and talk to him about my case, and treatment options, etc. I have an appointment with Dr. Kipps (along with another IVIG therapy) on Thursday of next week, and then an appointment with Dr. Curti next Friday to discuss what the plan will be. We are still unsure it we want to get treated up here or down in La Jolla. I guess we will have to cross that bridge when we come to it.
I hope next week will give us an idea of where the Auto Immune Hemolytic Anemia is going, and if I can start tapering off of the Prednisone.
Overall, I am still felling pretty good, not overly tired or short of breath. Still trying to get over a pulled muscle in my back that I did at golf last week, but that seems to be healing.
Hope everyone had a Merry Christmas, and you will have a Great New Year.
Terry
Friday, December 28, 2007
Sunday, December 23, 2007
Wednesday, December 19, 2007
12/19/07 IVIG Infusion
Well, today was a pretty good day. I had my regularly scheduled IVIG (Immunoglobulin) infusion today. This is the same procedure that I have had twice previously. It just boosts your immune system and really has no side affects other than it being a long procedure. I got there at 10:30 and left at 5pm. The actual infusion only takes 3 hours, so you can see there is a lot of waiting around for someone to do something.
This was also the day where they checked my blood levels to determine if I was going to need another transfusion and / or have some other treatment. There was also a standing order to give me Aranesp if my hemoglobin level was below 10. Aranesp is an ESA. Drugs known as ESAs, or erythropoiesis-stimulating agents, work by stimulating the bone marrow to make more red blood cells. They prescibe an ESA to increase your red blood cell count to avoid the need for a red blood cell transfusion.
The good news is that my hemoglobin has now risen to 11.6, which is the highest it has been since October. So I did not get Aranesp, and I did not need to have a transfusion. On a side note, my White Count (WBC) has gone down to 129,000, which is also the lowest that it has been since last December.
So I may be turning the corner on the Anemia. Of course we don't still know if it is the Prednisone that is artificially boosting the numbers.
I did not talk to any of my medical team today, but am going to call tomorrow to determine where we are going from here. My guess is that they might want to start tapering me off of the Prednisone, but I don't know how long that will take.
I do have an appointment scheduled next week with a local oncologist to see how willing he may be to take me on as a patient and work with Dr. Kipps. Other than that, my next appointment in La Jolla is on January 2nd for another IVIG.
Take Care and have a MERRY CHRISTMAS!
This was also the day where they checked my blood levels to determine if I was going to need another transfusion and / or have some other treatment. There was also a standing order to give me Aranesp if my hemoglobin level was below 10. Aranesp is an ESA. Drugs known as ESAs, or erythropoiesis-stimulating agents, work by stimulating the bone marrow to make more red blood cells. They prescibe an ESA to increase your red blood cell count to avoid the need for a red blood cell transfusion.
The good news is that my hemoglobin has now risen to 11.6, which is the highest it has been since October. So I did not get Aranesp, and I did not need to have a transfusion. On a side note, my White Count (WBC) has gone down to 129,000, which is also the lowest that it has been since last December.
So I may be turning the corner on the Anemia. Of course we don't still know if it is the Prednisone that is artificially boosting the numbers.
I did not talk to any of my medical team today, but am going to call tomorrow to determine where we are going from here. My guess is that they might want to start tapering me off of the Prednisone, but I don't know how long that will take.
I do have an appointment scheduled next week with a local oncologist to see how willing he may be to take me on as a patient and work with Dr. Kipps. Other than that, my next appointment in La Jolla is on January 2nd for another IVIG.
Take Care and have a MERRY CHRISTMAS!
Terry
Monday, December 17, 2007
12/12/07 Bone Marrow Biopsy
Yesterday I got a call that they wanted me to come down on Wed (Dec 12) to have a bone marrow biopsy. They apparently had a cancellation and wanted to get me in to do the test. I really didn't want to go, or wanted it in conjunction with my next IVIG therapy (Dec 19th), but they said he was already booked into February for this test, so I should take the appointment. Reluctantly I agreed.
I had read all kinds of horror stories about this test. People being in bed afterwards, it being the most pain they had felt, etc. So I was a little apprehensive about this test. It turned out to be pretty painless and easy. They numb you up quite a bit around the area, but can't numb the bone. They go into your hip and pull out some marrow for testing. I think it has a lot to do with who does the procedure (how experienced they are). It was a little uncomfortable, but It was a pretty quick procedure. I felt good enough afterwards that Donna and I went out to lunch, and then went Christmas shopping at South Coast Plaza.
This test is necessary to look at things like gene mutation, and to develop prognostic indicators to determine what your reaction will be to certain treatments. It is also sometimes necessary if you are going to be in a clinical trial.
When I was there for the bone marrow test they did another blood test and my hemoglobin had dropped from 11.1 to 10.6. They told me that I was still hemolizing (killing off the red blood cells), but they still had hope that I would stabilize and start producing my own. I go down to La Jolla again on Wednesday the 19th, and they will do a blood test to see if my hemoglobin has dropped any more. If it has dropped, they will want me to get another transfusion on Thursday.
If the red count is still dropping, then we will begin to explore other options to try to stop the hemolizing. Keep in mind that the anemia (AIHA) is still the most critical thing to get under control, and right now the leukemia is secondary.
I had read all kinds of horror stories about this test. People being in bed afterwards, it being the most pain they had felt, etc. So I was a little apprehensive about this test. It turned out to be pretty painless and easy. They numb you up quite a bit around the area, but can't numb the bone. They go into your hip and pull out some marrow for testing. I think it has a lot to do with who does the procedure (how experienced they are). It was a little uncomfortable, but It was a pretty quick procedure. I felt good enough afterwards that Donna and I went out to lunch, and then went Christmas shopping at South Coast Plaza.
This test is necessary to look at things like gene mutation, and to develop prognostic indicators to determine what your reaction will be to certain treatments. It is also sometimes necessary if you are going to be in a clinical trial.
When I was there for the bone marrow test they did another blood test and my hemoglobin had dropped from 11.1 to 10.6. They told me that I was still hemolizing (killing off the red blood cells), but they still had hope that I would stabilize and start producing my own. I go down to La Jolla again on Wednesday the 19th, and they will do a blood test to see if my hemoglobin has dropped any more. If it has dropped, they will want me to get another transfusion on Thursday.
If the red count is still dropping, then we will begin to explore other options to try to stop the hemolizing. Keep in mind that the anemia (AIHA) is still the most critical thing to get under control, and right now the leukemia is secondary.
12/4/07 IVIG Infusion & Dr Visit
Well, today I had my IVIG therapy* a blood test and my appt with Dr Kipps. I can honestly say that all in all, it was a very good day.
The IVIG was uneventful (3 hours). They took my blood as soon as we got there, and we got the results back after about an hour. My Hemoglobin level has increased to 11.1, which is the highest it has been in over 8 weeks. My last transfusion was last Wednesday and I was at 8.5. Two units should have increased it to 10.5, but over the span of a week, it has always gone back down to lower levels. What this tells us is that I am producing my own red blood cells and I am not Hemolizing (destroying) them. The question now, is whether or not I can produce them on my own unassisted by the Steroids. My WBC was at 173,000, which is down from last weeks 189,000.
Then we had the Dr appt. He is extremely happy with my progress, but is still concerned about me being able to produce my own red blood cells without steroids. He wants to take me off the steroids, but will wait until next week to determine what the timeline should be. (He wants another blood test next week to see where I am). The name of this anemic condition is AIHA or auto immune hemolytic anemia. To show you how serious this is, his quote today was "AIHA if left untreated will kill you, your CLL right now will not". All of my lymph glands have decreased in size and my spleen has shrunk by about 1/2.
After we get the AIHA out of the picture he can begin to once again treat the CLL. He wants to treat me with High dosage Rituxan (a monoclonal antibody treatment not chemotherapy) combined with a PULSE high dose of steroids. I know this is confusing because above I said he wants to get me off the steroids. But this plan would be for a two day extremely high dose of steroids. He thinks that this treatment in my particular situation would give me a Complete Response rate, which effectively puts the CLL in remission (for how long is anyone's guess). He does not want to treat me as this time with Fludura and Cytoxan because those are Chemo drugs which attack the bone marrow and kill both white and red cells. He really wants to keep me away from more transfusions if possible.
All of this is dependent on me being at a stable level for a couple of weeks. At this time I don't know if I will be stable and have the Rituxan treatment before Christmas or not. I am kind of guessing not, but we will see.
I still feel pretty good, just some weakness (probably from the Prednisone), but no shortness of breath. I am even thinking about getting back on the golf course.
Keep those prayers coming in, they are working.
Terry
* Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors). IVIG's effects last between 2 weeks and 3 months. IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients which have decreased or abolished antibody production capabilities. IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity. Treatment is given every 3-4 weeks.
The IVIG was uneventful (3 hours). They took my blood as soon as we got there, and we got the results back after about an hour. My Hemoglobin level has increased to 11.1, which is the highest it has been in over 8 weeks. My last transfusion was last Wednesday and I was at 8.5. Two units should have increased it to 10.5, but over the span of a week, it has always gone back down to lower levels. What this tells us is that I am producing my own red blood cells and I am not Hemolizing (destroying) them. The question now, is whether or not I can produce them on my own unassisted by the Steroids. My WBC was at 173,000, which is down from last weeks 189,000.
Then we had the Dr appt. He is extremely happy with my progress, but is still concerned about me being able to produce my own red blood cells without steroids. He wants to take me off the steroids, but will wait until next week to determine what the timeline should be. (He wants another blood test next week to see where I am). The name of this anemic condition is AIHA or auto immune hemolytic anemia. To show you how serious this is, his quote today was "AIHA if left untreated will kill you, your CLL right now will not". All of my lymph glands have decreased in size and my spleen has shrunk by about 1/2.
After we get the AIHA out of the picture he can begin to once again treat the CLL. He wants to treat me with High dosage Rituxan (a monoclonal antibody treatment not chemotherapy) combined with a PULSE high dose of steroids. I know this is confusing because above I said he wants to get me off the steroids. But this plan would be for a two day extremely high dose of steroids. He thinks that this treatment in my particular situation would give me a Complete Response rate, which effectively puts the CLL in remission (for how long is anyone's guess). He does not want to treat me as this time with Fludura and Cytoxan because those are Chemo drugs which attack the bone marrow and kill both white and red cells. He really wants to keep me away from more transfusions if possible.
All of this is dependent on me being at a stable level for a couple of weeks. At this time I don't know if I will be stable and have the Rituxan treatment before Christmas or not. I am kind of guessing not, but we will see.
I still feel pretty good, just some weakness (probably from the Prednisone), but no shortness of breath. I am even thinking about getting back on the golf course.
Keep those prayers coming in, they are working.
Terry
* Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors). IVIG's effects last between 2 weeks and 3 months. IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients which have decreased or abolished antibody production capabilities. IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity. Treatment is given every 3-4 weeks.
11/27/07 Blood Draw & More Transfusions
Well, on Monday I went in for a blood test and at 5pm that night we got a call that my Hemoglobin went to 9.2, which is the highest it has been in over a month. The case manager said she was going to check with the Dr and see if he still thought I should get another transfusion, or was I OK at that level. It may be that high because of the transfusion (which I got on Friday and Saturday), or it could be because I am now creating my own red blood cells.
Today got a call that the Dr would like it to be above 10, so yes, another transfusion is in order. But the draw they took on Saturday for the type and cross match was no good, so I had to drive to La Jolla today and have them draw blood. Quick trip, just down and back.
Then got a call at 5pm saying the blood was ready, and for me to come in on Wed at 9am to get two more units of blood.
Also, have another round of IVIG on Tuesday of next week, along with a Dr. appt. on that day.
So if the red blood cells are kicking in and I remain around 10, then I wouldn't have any more transfusions, and I would be on a 2 week cycle of IVIG for 6 rounds, with probably more chemo in January.
Today I actually feel pretty good and went out to the store on my way back from La Jolla. I have some good days, and on some days not so good. It seems to go up and down. Some days I can drive, other days I just don't feel like it. I have actually felt pretty good since Saturday when I got the last unit of the transfusion. I hope this is a continuing trend.
Terry
Today got a call that the Dr would like it to be above 10, so yes, another transfusion is in order. But the draw they took on Saturday for the type and cross match was no good, so I had to drive to La Jolla today and have them draw blood. Quick trip, just down and back.
Then got a call at 5pm saying the blood was ready, and for me to come in on Wed at 9am to get two more units of blood.
Also, have another round of IVIG on Tuesday of next week, along with a Dr. appt. on that day.
So if the red blood cells are kicking in and I remain around 10, then I wouldn't have any more transfusions, and I would be on a 2 week cycle of IVIG for 6 rounds, with probably more chemo in January.
Today I actually feel pretty good and went out to the store on my way back from La Jolla. I have some good days, and on some days not so good. It seems to go up and down. Some days I can drive, other days I just don't feel like it. I have actually felt pretty good since Saturday when I got the last unit of the transfusion. I hope this is a continuing trend.
Terry
11/25/07 More Transfusions
Well, continuing the ongoing saga.
You may remember that Friday I was supposed to go down and get blood. I was supposed to be down there at 1:30, because they couldn't get the blood until noon. I was also supposed to get 2 units, but arriving that late I could only get one unit on Friday because they close at 4:00pm. So I had to come back at 9:30 on Saturday to get the other unit. Luckily for us we have some wonderful relatives (Lisette and Angelo) who live 15 minutes from the Infusion Center. So we got to spend the night with them instead of driving back home and then back again the following morning.
I got the second unit on Saturday and then they tested my blood to see what my Red numbers were. When I went in on Friday they were 6.9, and when I left they were 8.4. So I have gone up some, but still am going down on a regular basis. The goal is to get the Red (Hemoglobin) up to around 9.0 for a couple of weeks so I can have the next round of Chemo. I am still hoping that the Prednisone and the IVIG will allow me to start producing and keeping my own Red Cells. My Whites continue down and they were 153,000 yesterday, which is the lowest they have been.
My guess is that I will need a couple of units of blood at the end of next week. But I guess only time will tell.
Terry
You may remember that Friday I was supposed to go down and get blood. I was supposed to be down there at 1:30, because they couldn't get the blood until noon. I was also supposed to get 2 units, but arriving that late I could only get one unit on Friday because they close at 4:00pm. So I had to come back at 9:30 on Saturday to get the other unit. Luckily for us we have some wonderful relatives (Lisette and Angelo) who live 15 minutes from the Infusion Center. So we got to spend the night with them instead of driving back home and then back again the following morning.
I got the second unit on Saturday and then they tested my blood to see what my Red numbers were. When I went in on Friday they were 6.9, and when I left they were 8.4. So I have gone up some, but still am going down on a regular basis. The goal is to get the Red (Hemoglobin) up to around 9.0 for a couple of weeks so I can have the next round of Chemo. I am still hoping that the Prednisone and the IVIG will allow me to start producing and keeping my own Red Cells. My Whites continue down and they were 153,000 yesterday, which is the lowest they have been.
My guess is that I will need a couple of units of blood at the end of next week. But I guess only time will tell.
Terry
11/22/07 IVIG
Well, today was another adventure.
We got to San Diego at 8:45am. We went to the infusion center (which is huge), and because of its size they can do a blood transfusion, which they can't do in LB unless they put you in Memorial. We had originally planned to have a 3 hour IVIG therapy and 2 units of blood. But of course, we knew that would not happen because they first have to take my blood to do a type and cross match (which has taken 6-8 hours), then they have to give me the blood at a rate of 2 hours / unit.
So they said that they wanted me to come back on Friday to get the two units of blood. But of course on our way home, they called us and told me that they will only have one unit on Friday and they will have to get the second unit on Saturday. Our guess is that they have to do another type and cross match on Friday so they can get one more unit for Saturday.
So the plan now is to drive down there on Friday for a 1:30 appt, then stay the night, and get the second unit, if there is such a thing, on Saturday.
I still feel pretty good, with no fatigue or shortness of breath.
We got the blood tests back from this morning and my white count continues to go down (now at 183,000), but my Hemoglobin has dropped from 8.4 to 7.5. This is not critically low, but still way below the NORMAL range and something that has to be dealt with. The hope is that the steroids, the IVIG therapy, and the transfusions will help bring this up and stabilize it. Until that happens I will not have any more chemo. Their guess is that I will not be ready for chemo until sometime in January.
Terry
We got to San Diego at 8:45am. We went to the infusion center (which is huge), and because of its size they can do a blood transfusion, which they can't do in LB unless they put you in Memorial. We had originally planned to have a 3 hour IVIG therapy and 2 units of blood. But of course, we knew that would not happen because they first have to take my blood to do a type and cross match (which has taken 6-8 hours), then they have to give me the blood at a rate of 2 hours / unit.
So they said that they wanted me to come back on Friday to get the two units of blood. But of course on our way home, they called us and told me that they will only have one unit on Friday and they will have to get the second unit on Saturday. Our guess is that they have to do another type and cross match on Friday so they can get one more unit for Saturday.
So the plan now is to drive down there on Friday for a 1:30 appt, then stay the night, and get the second unit, if there is such a thing, on Saturday.
I still feel pretty good, with no fatigue or shortness of breath.
We got the blood tests back from this morning and my white count continues to go down (now at 183,000), but my Hemoglobin has dropped from 8.4 to 7.5. This is not critically low, but still way below the NORMAL range and something that has to be dealt with. The hope is that the steroids, the IVIG therapy, and the transfusions will help bring this up and stabilize it. Until that happens I will not have any more chemo. Their guess is that I will not be ready for chemo until sometime in January.
Terry
11/14/07 Getting out of the Hospital
A Birthday to Remember!
Well, as Gene Wilder said in Young Frankenstein "He's ALIIIIIVE!"
After the adventure yesterday I had no idea of what to expect. Once again I checked in around 3 or so, and then they had to find the blood. As Donna mentioned in her email, they had taken 14 vials of blood at UCSD, and then when I got the bed they took 4 more, then 2 more today, so I had 20 vials of blood drawn. No wonder I needed a transfusion!
They once again told me what a difficult match I was, and it took them until 11:30 pm to find the blood. And guess where they found it. the Red Cross Blood Bank in Los Angeles. Go figure. So, I got 4 units at about 2.5 hours / unit, so I got done around 9am, Of course they monitor you all night long, so I probably got 3 hours sleep. Then they had to draw blood to test my counts an hour after the last transfusion, then waited 2 hours for the results, then 2 hours to be discharged. We got home around 3:30pm.
The tests showed a steady decrease in WBC now at 209,000, but right now that is not the real problem. Hemoglobin went from 4.6 to 8.4, but normal is 12, so it is still below normal, but at least functioning. They decided not to keep me in the hospital, but to start me on a high dosage of steroids (look out Barry Bonds***). This will have two affects. One, keep lowering the WBC (then the problem is that it is too low, and at risk now for infections), and Two, allowing the Red Count to rise. He wants me to have blood tests every two days to make sure I am doing OK. There is no guarantee that the transfusions will keep me at this level. He thinks my red cells are being destroyed or rejected, but doesn't know which. But he thinks the steroids will keep the antibodies in check, so I will start producing my own red cells.
I am also looking for a new Hematologist up here that Dr. Kipps, from down there can coordinate with. I just don't feel my current guy is right for me. Dr Kipps even came over to the hospital today at about 10am (not normal Dr round times) to just check on me. He said he was really concerned about me, and wanted to make sure I was doing OK, and understood the next steps. What a great guy.
Well, let's just hope the Red counts continue to rise.
All for now
Terry
Well, as Gene Wilder said in Young Frankenstein "He's ALIIIIIVE!"
After the adventure yesterday I had no idea of what to expect. Once again I checked in around 3 or so, and then they had to find the blood. As Donna mentioned in her email, they had taken 14 vials of blood at UCSD, and then when I got the bed they took 4 more, then 2 more today, so I had 20 vials of blood drawn. No wonder I needed a transfusion!
They once again told me what a difficult match I was, and it took them until 11:30 pm to find the blood. And guess where they found it. the Red Cross Blood Bank in Los Angeles. Go figure. So, I got 4 units at about 2.5 hours / unit, so I got done around 9am, Of course they monitor you all night long, so I probably got 3 hours sleep. Then they had to draw blood to test my counts an hour after the last transfusion, then waited 2 hours for the results, then 2 hours to be discharged. We got home around 3:30pm.
The tests showed a steady decrease in WBC now at 209,000, but right now that is not the real problem. Hemoglobin went from 4.6 to 8.4, but normal is 12, so it is still below normal, but at least functioning. They decided not to keep me in the hospital, but to start me on a high dosage of steroids (look out Barry Bonds***). This will have two affects. One, keep lowering the WBC (then the problem is that it is too low, and at risk now for infections), and Two, allowing the Red Count to rise. He wants me to have blood tests every two days to make sure I am doing OK. There is no guarantee that the transfusions will keep me at this level. He thinks my red cells are being destroyed or rejected, but doesn't know which. But he thinks the steroids will keep the antibodies in check, so I will start producing my own red cells.
I am also looking for a new Hematologist up here that Dr. Kipps, from down there can coordinate with. I just don't feel my current guy is right for me. Dr Kipps even came over to the hospital today at about 10am (not normal Dr round times) to just check on me. He said he was really concerned about me, and wanted to make sure I was doing OK, and understood the next steps. What a great guy.
Well, let's just hope the Red counts continue to rise.
All for now
Terry
11/13/07 Dr Kipps appt & going into Hospital
Update from Donna because Terry is in the hospital AGAIN!
Well, it's been a long day. Today was his consult with Dr. Kipps in San Diego at UCSD. Our appointment was at 11:15 but we got there about 1/2 hour early to fill out forms. They sent him to the lab where 13 vials of blood were drawn--and that's not so good when you're as anemic as he is.
They finally put him into an examining room at 1pm and Dr. Kipps came in shortly thereafter. He first addressed Terry's low hemoglobin and hematocrit which were 4.6/16.6--dangerously low levels....he immediately wanted to do a direct admit to Thornton Hospital for a transfusion of 4 units packed red blood cells and IV administration of high dose glucocorticoids (steroids) to help with the anemia and enlarged neck nodes. Another vial needed to be drawn--that made 14! I think Dr. Kipps was amazed at how well Terry had been functioning with such a low H&H. An EKG was done to make sure his heart hadn't been under undo strain--it checked out good. Dr. Kipps did a thorough exam of Terry and took copious notes. We were very impressed with him.
His nurse escorted us over to the hospital where Terry was admitted quickly. He was put in a bed and began what we now know all too well, as the waiting game; waiting for them to crossmatch the blood with one that he will not reject. They even were going to call Memorial to find out what blood they used.
I decided I best come home or I wouldn't be capable of driving him home tomorrow. He is hoping to be discharged around noon. We will ask Dr. Kipps to refer us to a physician up here who will follow out Dr. Kipps plan of treatment.
Thank you for all your prayers and warm support.
Love,
Donna and Terry
Well, it's been a long day. Today was his consult with Dr. Kipps in San Diego at UCSD. Our appointment was at 11:15 but we got there about 1/2 hour early to fill out forms. They sent him to the lab where 13 vials of blood were drawn--and that's not so good when you're as anemic as he is.
They finally put him into an examining room at 1pm and Dr. Kipps came in shortly thereafter. He first addressed Terry's low hemoglobin and hematocrit which were 4.6/16.6--dangerously low levels....he immediately wanted to do a direct admit to Thornton Hospital for a transfusion of 4 units packed red blood cells and IV administration of high dose glucocorticoids (steroids) to help with the anemia and enlarged neck nodes. Another vial needed to be drawn--that made 14! I think Dr. Kipps was amazed at how well Terry had been functioning with such a low H&H. An EKG was done to make sure his heart hadn't been under undo strain--it checked out good. Dr. Kipps did a thorough exam of Terry and took copious notes. We were very impressed with him.
His nurse escorted us over to the hospital where Terry was admitted quickly. He was put in a bed and began what we now know all too well, as the waiting game; waiting for them to crossmatch the blood with one that he will not reject. They even were going to call Memorial to find out what blood they used.
I decided I best come home or I wouldn't be capable of driving him home tomorrow. He is hoping to be discharged around noon. We will ask Dr. Kipps to refer us to a physician up here who will follow out Dr. Kipps plan of treatment.
Thank you for all your prayers and warm support.
Love,
Donna and Terry
11/07/07 Last day of Chemo
Well today I had my last round (3 treatments) of the first batch of chemo. I still feel pretty good, a little tired, but all in all, better than I have felt in a month really. Pretty short treatments with just the two drugs, so I am only there for about 3 hours total. They took a blood test and my WBC is still around 600,000, which is where it was last Sunday morning, and my Red went down from 21 to 19, but I still have energy. I don't get winded taking a shower or climbing the stairs, which is good. The last two times I have had a transfusion, I have been at 16, so I am not there yet, but we have to watch it. I can pretty much tell when I need one.
One of the reasons why my WBC has not dropped dramatically with the new drugs is that they take from 7-12 days to complete their job. So, hopefully I will be seeing some drops next week.
I am still on track to go to UCSD next Tuesday, and then back to my local Dr. next Friday. With no treatments or appts until then, I probably won't have much to say unless I have to have another transfusion.
So if you don't hear from me, that is a GOOD thing.
All for now
Terry
One of the reasons why my WBC has not dropped dramatically with the new drugs is that they take from 7-12 days to complete their job. So, hopefully I will be seeing some drops next week.
I am still on track to go to UCSD next Tuesday, and then back to my local Dr. next Friday. With no treatments or appts until then, I probably won't have much to say unless I have to have another transfusion.
So if you don't hear from me, that is a GOOD thing.
All for now
Terry
11/5/07 First Round of Chemo
Well, I am happy to report that this has been a pretty good day. I was only in the infusion center for 3 hours and got two types of the new Chemo (Fludura and cyclophosphamide) , and some pre-meds for nausea, anxiety (not that I have any of that) , etc.
My white counts are down from 787 to 607, and my red counts are up from 16 to 21. I feel pretty good in general. After the treatment we went out to lunch, and then went to Costco for short shopping trip.
Although I don't really have any side affects right now, they say they could take 3-4 days to develop, although some people don't ever get any.
Tomorrow and Wed are two more days of the same treatment, so they should both be short (which lately is a good thing).
They won't take another blood test until after the treatment on Wednesday, so I really won't know how it is working until Thursday. I still have a Dr. appt on Wed to review everything.
All for now.
Thanks for the emails of encouragement, they really do help.
Terry
My white counts are down from 787 to 607, and my red counts are up from 16 to 21. I feel pretty good in general. After the treatment we went out to lunch, and then went to Costco for short shopping trip.
Although I don't really have any side affects right now, they say they could take 3-4 days to develop, although some people don't ever get any.
Tomorrow and Wed are two more days of the same treatment, so they should both be short (which lately is a good thing).
They won't take another blood test until after the treatment on Wednesday, so I really won't know how it is working until Thursday. I still have a Dr. appt on Wed to review everything.
All for now.
Thanks for the emails of encouragement, they really do help.
Terry
11/4/07 Hospital Transfusion
Yesterday at 7:30 am we got a call from the hospital saying they had a bed and the blood for the transfusion. So we packed up and got admitted about 9, checked in and got up to the floor about 9:30. We then find out that there is NO blood ready. They misplaced the sample from the day before, so they had to draw more blood. They then tried all day to do the type and cross match for the transfusion. They finally had to get the Pathology doctor involved. About 6:30 they came in and told me that they had a match for 3 units of blood, and it turns out it was the same type that they used last time. They then had to pre-med me, and they finally got the blood going about 8pm. 3 units take about 9 hours. Because it is not an exact match they have to watch the transfusion very carefully, taking my vitals every 15 min, so you can imagine what my night was like.
So I got done about 5:30, but then they had to draw more blood for the CBC, but then of course the computers were down, so 2 hours later we got the blood drawn and I got to go home. So it was about a 23 hour day.
Came home and took a nap. Feeling better than I have, still tired, but I think that is from lack of sleep more than anything.
Tomorrow I go for my first round of the Fludura, cyclophosphamide, Rituxan cocktail, not sure how long that will take, but am scheduled to go at 9am.
All for now
Terry
So I got done about 5:30, but then they had to draw more blood for the CBC, but then of course the computers were down, so 2 hours later we got the blood drawn and I got to go home. So it was about a 23 hour day.
Came home and took a nap. Feeling better than I have, still tired, but I think that is from lack of sleep more than anything.
Tomorrow I go for my first round of the Fludura, cyclophosphamide, Rituxan cocktail, not sure how long that will take, but am scheduled to go at 9am.
All for now
Terry
11/2/07 Last round of Rituxan
Well, as the old saying goes 'things never go quite as planned' Today I had my infusion therapy and the good new is that it only took 6 hours this time, the bad news is that the white count is not dropping, and the red count is not going up. My white is at 787,000, which is the highest it has been, and my red count has dropped back to 16, which was where it was when I went in the hospital for the transfusion. It appears the Rituxan is not lowering the white cells they way it should.
So the latest plan is that they will put me back in the hospital tomorrow (after they find the correct blood), and transfuse me with 3 units of blood (last time it was two units). It is sort of an out-patient, in the hospital. They will keep me only as long as it takes to do the transfusion. So probably about 10 hours or so. They will call me tomorrow when they have the blood and the bed is ready. Hopefully this will take care of the fatigue that I am suffering when I do the least bit of activity. Everyone tells me that I ' look good' and I am not nearly as pale as I was when I went in the hospital the last time.
It has also been decided that because the Rituxan is not working the way it should, we will begin a full-blown chemotherapy on Monday, Tuesday and Wednesday. (probably about 4-5 hours) each treatment. This protocol, because it is more invasive, will knock the white count down to VERY low levels and this of course opens the doors for potential infections.
The main side affect of this treatment is fatigue, which I have already experienced.
All for now
Terry
So the latest plan is that they will put me back in the hospital tomorrow (after they find the correct blood), and transfuse me with 3 units of blood (last time it was two units). It is sort of an out-patient, in the hospital. They will keep me only as long as it takes to do the transfusion. So probably about 10 hours or so. They will call me tomorrow when they have the blood and the bed is ready. Hopefully this will take care of the fatigue that I am suffering when I do the least bit of activity. Everyone tells me that I ' look good' and I am not nearly as pale as I was when I went in the hospital the last time.
It has also been decided that because the Rituxan is not working the way it should, we will begin a full-blown chemotherapy on Monday, Tuesday and Wednesday. (probably about 4-5 hours) each treatment. This protocol, because it is more invasive, will knock the white count down to VERY low levels and this of course opens the doors for potential infections.
The main side affect of this treatment is fatigue, which I have already experienced.
All for now
Terry
10/31/07 Local Dr Visit
Well today I had my weekly Dr visit and analysis of my blood work that was done on Monday. Unfortunately the numbers don't look as good as we had hoped. My WBC (white blood count) has dropped slightly, but the good news is that my hematocrit is higher than it was on Friday and much higher than it was a week ago. It is still not in the normal range, but the fact that it is not falling to those previous levels is a positive sign.
He wants to do one more round of Rituxan on this Friday and see if they can get any more positive results. If not, then we are probably looking at the more invasive treatment the following week.
The more invasive procedure will probably take my WBC down to BELOW normal levels, and then the risk of infection becomes much greater until you have a chance to rebuild. The only real reaction that most people have to this treatment is extreme fatigue, which I have already experienced.
He wants to do one more round of Rituxan on this Friday and see if they can get any more positive results. If not, then we are probably looking at the more invasive treatment the following week.
The more invasive procedure will probably take my WBC down to BELOW normal levels, and then the risk of infection becomes much greater until you have a chance to rebuild. The only real reaction that most people have to this treatment is extreme fatigue, which I have already experienced.
10/27/07 Second Round of Rituxan
Well, it's time for my update. Yesterday I had my second treatment of Rituxan and it went fairly well, all things considered. As you might remember, my first treatment last week lasted 11 1/2 hours, and this week it only took 8 1/2. They still could not increase the flow rate of the drug to more than 150 (last week it was 100), so that is why it took a while to infuse. It reaches a certain point and I get a tightness in my chest and then they have to lower it back down. They said that next week the time would probably be shorter as my body adjusts to the treatment.
They did tell me that my white count had gone back up to now 669 from 390, but they said that it is normal for it to fluctuate when you are first getting the treatments. The good news is that my red count is holding its own. Not as high as it should be, but not dangerously low like it was last week.
I actually felt pretty good when I got home and then after about 2 hours I got light headed and had to lay down, but after about an hour I felt pretty good again.
Had a good nights sleep, and today I am not short of breath, like I was last week. Just a little weak.
So, let's hope that the red count goes up so I don't need another transfusion this week, and we can get to next Friday's treatment.
All for now
Terry
They did tell me that my white count had gone back up to now 669 from 390, but they said that it is normal for it to fluctuate when you are first getting the treatments. The good news is that my red count is holding its own. Not as high as it should be, but not dangerously low like it was last week.
I actually felt pretty good when I got home and then after about 2 hours I got light headed and had to lay down, but after about an hour I felt pretty good again.
Had a good nights sleep, and today I am not short of breath, like I was last week. Just a little weak.
So, let's hope that the red count goes up so I don't need another transfusion this week, and we can get to next Friday's treatment.
All for now
Terry
10/23/07 First Hospital Transfusion
I know this saga gets confusing (even for me), but I would like to give you all a quick update on what happened yesterday.
Yesterday I was feeling as poorly as I have, even though I had that first treatment last Friday. I was thinking that this red blood transfusion would help, but I was not supposed to get that until Wednesday, and I wasn't sure I could wait that long.
So then I got a call from the Dr's office telling me the good news is that my white count had dropped almost by 200,000, but the bad news was that the red count had also dropped. So they wanted to do the red transfusion as soon as possible, but they were unable to find a match for my blood /antibody issues. So, I asked 'what now?' and they said that they would try to find a 'best match', but that could not be done at the Infusion Center and I had to be admitted to the hospital so they could monitor me more closely (more risk of complications from an inexact match). So, they would call me when they found some 'closely compatible' blood. Around 5pm they called and said they found some blood, and so they tried to get me admitted into the hospital they were told 'no room at the inn'. So the Hospital would call me when they got a room available. Finally at 8:15pm we got a call, and a room was available. So we went to the hospital, and finally after a series of complications (room not ready, Dr not signing the order to give me blood) They started the transfusion at 11:45pm. With no complications, I was out of there at 6:30am.
I am not short of breath like yesterday, but still very weak. I have a call in to the Dr to see what all this means, and to figure out what my next steps will be. I am still thinking I will have my other treatment on Friday, but we shall see.
All for now.
Terry
Yesterday I was feeling as poorly as I have, even though I had that first treatment last Friday. I was thinking that this red blood transfusion would help, but I was not supposed to get that until Wednesday, and I wasn't sure I could wait that long.
So then I got a call from the Dr's office telling me the good news is that my white count had dropped almost by 200,000, but the bad news was that the red count had also dropped. So they wanted to do the red transfusion as soon as possible, but they were unable to find a match for my blood /antibody issues. So, I asked 'what now?' and they said that they would try to find a 'best match', but that could not be done at the Infusion Center and I had to be admitted to the hospital so they could monitor me more closely (more risk of complications from an inexact match). So, they would call me when they found some 'closely compatible' blood. Around 5pm they called and said they found some blood, and so they tried to get me admitted into the hospital they were told 'no room at the inn'. So the Hospital would call me when they got a room available. Finally at 8:15pm we got a call, and a room was available. So we went to the hospital, and finally after a series of complications (room not ready, Dr not signing the order to give me blood) They started the transfusion at 11:45pm. With no complications, I was out of there at 6:30am.
I am not short of breath like yesterday, but still very weak. I have a call in to the Dr to see what all this means, and to figure out what my next steps will be. I am still thinking I will have my other treatment on Friday, but we shall see.
All for now.
Terry
11/20/07 First Rituxan Treatment
Well, I am back home after the 'easy treatment' I am not sure who came up with that definition, but it was anything but.
The treatment lasted 11 1/2 hours, all at the infusion center by Long Beach Memorial. I wound up being the last patient there and walked out with the staff as they turned out the lights.
I had some scary moments around noon when my Blood pressure dropped from 110/64 to 67/47. They quickly adjusted all the meds, and added some new ones to the IV mix, but still had to keep the infusion at a much slower rate than normal.
The staff at the Infusion center was absolutely great and was really my advocate during this whole ordeal. They were in constant contact with the Dr, and even got an earlier appt on my transfusion.
I feel a little better to day, still a little light headed, but drinking a lot of water to flush all the excess white blood cells out. I have none of the other symptoms that can be associated with this drug, so that is a good sign.
I go in Monday for my red blood cell transfusion which will be about a 6 hour deal, then go back on next Friday for my next round of Rituxan, which hopefully will be a shorter and more pleasant experience.
All for now
Terry
The treatment lasted 11 1/2 hours, all at the infusion center by Long Beach Memorial. I wound up being the last patient there and walked out with the staff as they turned out the lights.
I had some scary moments around noon when my Blood pressure dropped from 110/64 to 67/47. They quickly adjusted all the meds, and added some new ones to the IV mix, but still had to keep the infusion at a much slower rate than normal.
The staff at the Infusion center was absolutely great and was really my advocate during this whole ordeal. They were in constant contact with the Dr, and even got an earlier appt on my transfusion.
I feel a little better to day, still a little light headed, but drinking a lot of water to flush all the excess white blood cells out. I have none of the other symptoms that can be associated with this drug, so that is a good sign.
I go in Monday for my red blood cell transfusion which will be about a 6 hour deal, then go back on next Friday for my next round of Rituxan, which hopefully will be a shorter and more pleasant experience.
All for now
Terry
10/17/07 Time to Begin Treatment
Well, the good news is that they did not put me in the hospital today, the bad news is that it is time to begin treatment.
Today we went and saw my Hematologist / Oncologist to find out why I am feeling so tired. It was no surprise that he told me that my white blood count (WBC) has now gone up to 540,000 (keep in mind, normal is 5-10,000). It is doubling every six months, which is an indicator for treatment. With this high of a white count, the red cells are just being crowded out, which accounts for the anemia. There is more lymph node enlargements present, and I have experienced a 20 lb weight loss over 2 1/2 years (wouldn't recommend it as a way to lose weight). Along with being so tired, I can't walk up a flight of stairs without resting after I get there.
He had a recommendation for treatment, which is the most common protocol used when treatment is required. It is a chemotherapy cocktail of three drugs, Fludura, Cyclophosphamide, and Rituxan, or FCR. It is given IV over a multi week day cycle. This is a highly toxic regimen and leaves you open for other types of infections, and must be monitored closely.
I then told him we had a 2 week trip to France planned in November and I guessed I couldn't go on that. He then thought for a minute and said, why don't we go to option B, which would be Rituxan alone, which can be given over the next 4 weeks. You can read the description of Rituxan below. Rituxan is not chemotherapy, but is immunotherapy, so it doesn't have the same side effects as the FCR combination. What he said this would do, is GREATLY lower my white count. It would also dramatically shrink my lymph nodes (because that the hangout for all those white cells looking for a place to live.) He also said that after the couple of doses of the Rituxan if I was still tired they would just give me a couple of pints of Packed Red Blood cells to give me all my energy back. This would give me 2 - 4 - 6 months of remission, but it would not give me the long lasting results as the FCR combination would give me. When my counts go back up they would then begin the FCR protocol. He did not think that using the Rituxan approach would in any way affect my long term prognosis.
I asked him about going down to see Dr Kipps at UCSD for a second opinion and he was fine with that, and thought with all of my tests and lab results that Dr. Kipps would agree with the FCR protocol for ultimate treatment.
They will get all the insurance clearances tomorrow and set up the procedure for Friday or early next week.
Well, that's all for now, thanks to everyone for being concerned and keeping me in their thoughts and prayers.
Love
Terry
RITUXAN
Rituxan is an immunotherapy that has been administrated to thousands of patients worldwide. Immunotherapy uses your body's immune system to help fight cancer. This type of therapy targets certain types of cells and helps the immune system destroy them. Rituxan specifically targets CD20-positive B-cells-the cells involved in some types of NHL.
Healthy B-cells help your body fight infection. But in NHL, B-cells become cancerous and form tumors. Rituxan targets B-cells in tumors. It also targets healthy B-cells. But it leaves most other types of cells alone. Rituxan may be used on its own or in combination with chemotherapy. Side effects such as fever, chills, and shaking may occur with immunotherapy. If it is used along with another treatment, you may experience side effects from both.
Rituxan attaches to a certain marker, called CD20, on the surface of most B-cells.
Today we went and saw my Hematologist / Oncologist to find out why I am feeling so tired. It was no surprise that he told me that my white blood count (WBC) has now gone up to 540,000 (keep in mind, normal is 5-10,000). It is doubling every six months, which is an indicator for treatment. With this high of a white count, the red cells are just being crowded out, which accounts for the anemia. There is more lymph node enlargements present, and I have experienced a 20 lb weight loss over 2 1/2 years (wouldn't recommend it as a way to lose weight). Along with being so tired, I can't walk up a flight of stairs without resting after I get there.
He had a recommendation for treatment, which is the most common protocol used when treatment is required. It is a chemotherapy cocktail of three drugs, Fludura, Cyclophosphamide, and Rituxan, or FCR. It is given IV over a multi week day cycle. This is a highly toxic regimen and leaves you open for other types of infections, and must be monitored closely.
I then told him we had a 2 week trip to France planned in November and I guessed I couldn't go on that. He then thought for a minute and said, why don't we go to option B, which would be Rituxan alone, which can be given over the next 4 weeks. You can read the description of Rituxan below. Rituxan is not chemotherapy, but is immunotherapy, so it doesn't have the same side effects as the FCR combination. What he said this would do, is GREATLY lower my white count. It would also dramatically shrink my lymph nodes (because that the hangout for all those white cells looking for a place to live.) He also said that after the couple of doses of the Rituxan if I was still tired they would just give me a couple of pints of Packed Red Blood cells to give me all my energy back. This would give me 2 - 4 - 6 months of remission, but it would not give me the long lasting results as the FCR combination would give me. When my counts go back up they would then begin the FCR protocol. He did not think that using the Rituxan approach would in any way affect my long term prognosis.
I asked him about going down to see Dr Kipps at UCSD for a second opinion and he was fine with that, and thought with all of my tests and lab results that Dr. Kipps would agree with the FCR protocol for ultimate treatment.
They will get all the insurance clearances tomorrow and set up the procedure for Friday or early next week.
Well, that's all for now, thanks to everyone for being concerned and keeping me in their thoughts and prayers.
Love
Terry
RITUXAN
Rituxan is an immunotherapy that has been administrated to thousands of patients worldwide. Immunotherapy uses your body's immune system to help fight cancer. This type of therapy targets certain types of cells and helps the immune system destroy them. Rituxan specifically targets CD20-positive B-cells-the cells involved in some types of NHL.
Healthy B-cells help your body fight infection. But in NHL, B-cells become cancerous and form tumors. Rituxan targets B-cells in tumors. It also targets healthy B-cells. But it leaves most other types of cells alone. Rituxan may be used on its own or in combination with chemotherapy. Side effects such as fever, chills, and shaking may occur with immunotherapy. If it is used along with another treatment, you may experience side effects from both.
Rituxan attaches to a certain marker, called CD20, on the surface of most B-cells.
10/14/07 - Things are a changin'
As some of you may be aware, I have developed some new symptoms in the last month. I can actually point to the day I recognized this because I was walking playing golf and at the end of the round I was dog tired. It was Sept 10th. Donna has also mentioned to me that I looked pale in the last 3 weeks or so. Well, one of the symptoms on the list is Anemia, and my self diagnosis tells me that is where I am going. So, a week ago Monday I had some blood work done and the results sent to my Oncologist/Hematologist. They said they would have them by Wed / Thursday. So on Tuesday I called the Dr to try to make an appt and they said, come in on Friday the 19th, I said I think after he sees the results of the tests he may want to see me sooner. And yes, he does. On Wed of last week I got the call and I have an appt for next Wed (the 16th) for him to go over the results with me.
I have been feeling very tired lately, and even just going up the stairs to the bedroom gets me a little out of breath. Even the slightest exertion makes my heart rate go up. I am actually having less night sweats, and my nodes are about the same, so I am not sure what is really going on.
Also on Tuesday I called the Cancer Center at UCSD to talk to them about being seen by Dr. Kipps who is the head of the CLL Research Consortium. I now also have an appt to see Dr. Kipps on Nov. 13th. That was the earliest I could get in, but I feel good about seeing the head of the whole CLL project. I am hoping that I don't have to immediately start treatment so I can still go and see him and review my options.
http://cll.ucsd.edu/index.htm
The consortium is the group that is doing all the research with about 8 centers involved.
Some of you may remember that I had been talking about going to MD Anderson in Houston for a second opinion and treatment recommendations (and maybe even treatment there), but after careful consideration I really wondered why I would fly to Houston when I can drive to La Jolla (especially if I am going to be seen personally by the head guy). I think a lot of people that post on the CLL boards talking about going to MD Anderson are from the Midwest and even the East and it is easier for them to get to Houston.
I have been feeling very tired lately, and even just going up the stairs to the bedroom gets me a little out of breath. Even the slightest exertion makes my heart rate go up. I am actually having less night sweats, and my nodes are about the same, so I am not sure what is really going on.
Also on Tuesday I called the Cancer Center at UCSD to talk to them about being seen by Dr. Kipps who is the head of the CLL Research Consortium. I now also have an appt to see Dr. Kipps on Nov. 13th. That was the earliest I could get in, but I feel good about seeing the head of the whole CLL project. I am hoping that I don't have to immediately start treatment so I can still go and see him and review my options.
http://cll.ucsd.edu/index.htm
The consortium is the group that is doing all the research with about 8 centers involved.
Some of you may remember that I had been talking about going to MD Anderson in Houston for a second opinion and treatment recommendations (and maybe even treatment there), but after careful consideration I really wondered why I would fly to Houston when I can drive to La Jolla (especially if I am going to be seen personally by the head guy). I think a lot of people that post on the CLL boards talking about going to MD Anderson are from the Midwest and even the East and it is easier for them to get to Houston.
Subscribe to:
Posts (Atom)