Post # 29
HLA Testing Kits
Bill has been feeling much better these past two days while he is on the Neupogen. We are both hoping that the effects will last long after his last injection today. Bill's next appointment with Dr. Castro is Monday morning, the blood results will tell the story. We should also find out what the next steps are regarding treatment and testing, such as bone marrow biopsy and ultra sound of the spleen.
I called Moffitt the other day to find out the status of the testing kits since none of the siblings had received one. It seems there was a delay in getting insurance authorization and there for two week delay in sending out kits. I was informed that the kits were sent out on Tuesday.
Well, the Kits have starting arriving at the siblings houses!! Margy received her kit and had the blood sample drawn and back in the mail the same day. Lue received her kit on Thursday and will have to wait until Monday to have the blood sample taken. Ed will probably receive his kit today and will have his sample drawn on Monday or Tuesday. The instructions indicate that the blood sample should be taken on a Monday or a Tuesday. We assume that is due to the time between draw and receipt of the sample at Moffitt. If the blood sample gets there late Friday or during the week-end it might not be usable, since the staff that do the HLA testing are probably not working during the week-end. The lag time from receipt of the blood sample at Moffitt to results will take between two to three weeks. Remember, each of the siblings has a 25% chance of being a match.
We would love to hear from our followers, so please post a comment on the blog. Words of support, inspiration, questions, comments, things we are noting posting that you would like us to include.
Friday, July 30, 2010
Wednesday, July 28, 2010
Post #28
Where did the week go?
This has been an extremely long week for me. I have been working non stop since last Thursday to finish the hospital budget for fiscal year 2011. We thought we were done this week-end when we got the word to reduce expenses. Needless to say I am done and can now concentrate on Bill and his journey!! Please accept my apologies for the delay in updates a lot has happened.
I will start with Thursday's doctor appointment and bring you up to date. Today was Bill's last Neupogen shot. If you recall, the last time we went to the local doctor, we saw Katie because Dr. Castro was on vacation. We saw doctor Castro on Thursday everything was positive. The first positive news was Bill's weight. He is now 136.8, up 3 pounds from his weight at Moffitt.
The next piece of good news was his blood work.
11.10 WBC - normal is between 4.50 - 11.00
10.33 Neutrophils - normal is between 2.0 - 7.80
This is the best these two readings have been since Bill started this journey.
We brought the results from the Bone Marrow biopsy that we picked up when we were last in Moffitt as ask Dr. Castro to explain the results. We then reviewed the results of the Flow Cytometry with Dr. Castro and he was very pleased with the results, as Dr. Ayala was.
The next discussion was around the results of the second opinion on the bone marrow biopsy, the slides that were to be sent to Elaine Jaffe, at the National Institute of Health. We were unsuccessful in getting any information from Moffitt so Dr. Castro offered to find out on our behalf. It is important to me to get the results of the second opinion.
It is time to start thinking about the next bone marrow biopsy and ultra sound of the spleen. Bill is just about done with two months of treatment and although the flow cytometry looks good, the bone marrow biopsy is the definitive test to determine if Bill has reached the big R, remission.
Dr. Castro informed Bill that August 2nd is when he will start his third round of Cladribine, and hopefully his last. Dr. Castro wanted to confer with Dr. Epner (Hershey) to make sure the next steps are appropriate.
Friday was Bill's next injection of Campath.
Saturday afternoon Bill's son called and invited us to join their family at the mall. That seems to be the best place for Bill to get out and exercise during the Florida summer heat. We met them and had a very nice time. Bill's oldest grandson, Adrian who is 7, asked me if grandpa was sick. Bill wears a mask when he is in public to avoid the risk of infection. I explained to Adrian that "grandpa has a problem with his blood and he wears the mask to make sure he does not get sick. He is going to have a procedure done that will make him better"
Sunday was not a good day for Bill. He was feeling very fatigued and couldn't move. He was dragging and had no energy. It seemed odd he would feel this way after the excellent blood work he received on Thursday.
Monday was Bill's next injection of Campath. Before Sylvia, his nurse, would do the treatment she wanted to check his blood work. It was a good thing she did, things had changed dramatically from Thursday to Monday.
1.6 WBC - Normal is 4.5 - 11.0. On Thursday the WBC was 11.10
0.9 Neutrophil - Normal is 2.0 - 7.8. On Thursday the Neutrophil was 10.33
This explains the way Bill felt on Sunday. Since he has started his treatment he has been following a neutropenic diet to protect himself from infection. Not knowing what the Neutrophil count will be from day to day, you can't take a change. The results above prove that Bill is doing the right thing by following the neutropenic diet.
What is a neutropenic diet?
A neutropenic (nu-tro-PEE-nik) diet is for people with weakened immune systems. This diet helps protect them from bacteria and other harmful organisms found in some food and drinks. If your immune system is not working well, your body may have a hard time protecting itself from these bacteria.
•Avoid all fresh fruits and vegetables,
including all fresh garnishes. Cooked vegetables, canned fruits, and juices
are fine.
• Avoid raw or rare-cooked meat, fish, and eggs. Meat should be cooked to the “well- done” stage. All eggs should be thoroughly cooked (no runny yolks).
• Avoid salad bars, fruit bars, and deli counters. Buy vacuum-packed lunch meats rather than freshly sliced meats.
• Avoid raw nuts. You may eat baked
products with these ingredients.
• Make sure all of the dairy products you eat are pasteurized.
• Avoid yogurt and yogurt products with live and active cultures.
• Be safe in the way you handle foods. Wash your hands before handling food. Wash all surfaces, cutting boards and cutting utensils thoroughly. Keep hot food hot and cold food cold.
• At home, you may use tap water. If you choose to use bottled water, be sure it is labeled as follows:
° reverse osmosis or
° distillation or
° filtered through an absolute
1 micron or smaller filter
Sylvia called Dr. Castro and informed him of the blood results. Dr. Castro ordered 5 more injections of Neupogen, 300mg each, to start on Monday 7/26 and end on Friday 7/30. Monday and Tuesday were not good days, Bill spent most of those days on the couch. Today has been better, Bill has spent less time on the couch.
Bill would like to thank everyone for all the cards, e-mails and posted comments on the blog that he has been receiving. He looks foward to receiving them everyday.
Where did the week go?
This has been an extremely long week for me. I have been working non stop since last Thursday to finish the hospital budget for fiscal year 2011. We thought we were done this week-end when we got the word to reduce expenses. Needless to say I am done and can now concentrate on Bill and his journey!! Please accept my apologies for the delay in updates a lot has happened.
I will start with Thursday's doctor appointment and bring you up to date. Today was Bill's last Neupogen shot. If you recall, the last time we went to the local doctor, we saw Katie because Dr. Castro was on vacation. We saw doctor Castro on Thursday everything was positive. The first positive news was Bill's weight. He is now 136.8, up 3 pounds from his weight at Moffitt.
The next piece of good news was his blood work.
11.10 WBC - normal is between 4.50 - 11.00
10.33 Neutrophils - normal is between 2.0 - 7.80
This is the best these two readings have been since Bill started this journey.
We brought the results from the Bone Marrow biopsy that we picked up when we were last in Moffitt as ask Dr. Castro to explain the results. We then reviewed the results of the Flow Cytometry with Dr. Castro and he was very pleased with the results, as Dr. Ayala was.
The next discussion was around the results of the second opinion on the bone marrow biopsy, the slides that were to be sent to Elaine Jaffe, at the National Institute of Health. We were unsuccessful in getting any information from Moffitt so Dr. Castro offered to find out on our behalf. It is important to me to get the results of the second opinion.
It is time to start thinking about the next bone marrow biopsy and ultra sound of the spleen. Bill is just about done with two months of treatment and although the flow cytometry looks good, the bone marrow biopsy is the definitive test to determine if Bill has reached the big R, remission.
Dr. Castro informed Bill that August 2nd is when he will start his third round of Cladribine, and hopefully his last. Dr. Castro wanted to confer with Dr. Epner (Hershey) to make sure the next steps are appropriate.
Friday was Bill's next injection of Campath.
Saturday afternoon Bill's son called and invited us to join their family at the mall. That seems to be the best place for Bill to get out and exercise during the Florida summer heat. We met them and had a very nice time. Bill's oldest grandson, Adrian who is 7, asked me if grandpa was sick. Bill wears a mask when he is in public to avoid the risk of infection. I explained to Adrian that "grandpa has a problem with his blood and he wears the mask to make sure he does not get sick. He is going to have a procedure done that will make him better"
Sunday was not a good day for Bill. He was feeling very fatigued and couldn't move. He was dragging and had no energy. It seemed odd he would feel this way after the excellent blood work he received on Thursday.
Monday was Bill's next injection of Campath. Before Sylvia, his nurse, would do the treatment she wanted to check his blood work. It was a good thing she did, things had changed dramatically from Thursday to Monday.
1.6 WBC - Normal is 4.5 - 11.0. On Thursday the WBC was 11.10
0.9 Neutrophil - Normal is 2.0 - 7.8. On Thursday the Neutrophil was 10.33
This explains the way Bill felt on Sunday. Since he has started his treatment he has been following a neutropenic diet to protect himself from infection. Not knowing what the Neutrophil count will be from day to day, you can't take a change. The results above prove that Bill is doing the right thing by following the neutropenic diet.
What is a neutropenic diet?
A neutropenic (nu-tro-PEE-nik) diet is for people with weakened immune systems. This diet helps protect them from bacteria and other harmful organisms found in some food and drinks. If your immune system is not working well, your body may have a hard time protecting itself from these bacteria.
•Avoid all fresh fruits and vegetables,
including all fresh garnishes. Cooked vegetables, canned fruits, and juices
are fine.
• Avoid raw or rare-cooked meat, fish, and eggs. Meat should be cooked to the “well- done” stage. All eggs should be thoroughly cooked (no runny yolks).
• Avoid salad bars, fruit bars, and deli counters. Buy vacuum-packed lunch meats rather than freshly sliced meats.
• Avoid raw nuts. You may eat baked
products with these ingredients.
• Make sure all of the dairy products you eat are pasteurized.
• Avoid yogurt and yogurt products with live and active cultures.
• Be safe in the way you handle foods. Wash your hands before handling food. Wash all surfaces, cutting boards and cutting utensils thoroughly. Keep hot food hot and cold food cold.
• At home, you may use tap water. If you choose to use bottled water, be sure it is labeled as follows:
° reverse osmosis or
° distillation or
° filtered through an absolute
1 micron or smaller filter
Sylvia called Dr. Castro and informed him of the blood results. Dr. Castro ordered 5 more injections of Neupogen, 300mg each, to start on Monday 7/26 and end on Friday 7/30. Monday and Tuesday were not good days, Bill spent most of those days on the couch. Today has been better, Bill has spent less time on the couch.
Bill would like to thank everyone for all the cards, e-mails and posted comments on the blog that he has been receiving. He looks foward to receiving them everyday.
Tuesday, July 20, 2010
Post # 27
Pin Cushion
T-PLL update
As of tomorrow Bill will have had 21 blood draws (many more vials) 20 Campath injections, 10 doses of Cladribine, 9 Neupogen injections and 1 Neulasta injection. He is a human pin cushion.
All in all Bill has been feeling well. Since he started the Neupogen injections he has been getting a low grade fever every night. Two more Neupogen injections and he will be done for this round. Bill had his blood tested on Monday and the results were very good.
WBC 7.5 - Normal
RBC 3.66 - Low - Normal is 4.2-4.5
Neutrophil 6.6 - Normal!!
The next Dr. appointment is on Thursday, so that will be the next update.
Pin Cushion
T-PLL update
As of tomorrow Bill will have had 21 blood draws (many more vials) 20 Campath injections, 10 doses of Cladribine, 9 Neupogen injections and 1 Neulasta injection. He is a human pin cushion.
All in all Bill has been feeling well. Since he started the Neupogen injections he has been getting a low grade fever every night. Two more Neupogen injections and he will be done for this round. Bill had his blood tested on Monday and the results were very good.
WBC 7.5 - Normal
RBC 3.66 - Low - Normal is 4.2-4.5
Neutrophil 6.6 - Normal!!
The next Dr. appointment is on Thursday, so that will be the next update.
Thursday, July 15, 2010
Post #26
Bone Marrow Transplant Consultation
Today was a very long day. We got to Moffitt at 9:15am and left at 4:00pm. All meetings were very productive and we learned a lot.
First meeting was with Kristy, Dr. Ayala's PA. Kristy took Bill's history and physical and answered most of the questions we had on our list. Then we met with Dr. Ayala, the Dr. that would manage the transplant and treatment. Next we met with Sandy, one of Dr. Ayala's nurses and finally Heather, the social worker. Each person took as much time as we needed and did not leave until all questions were asked. As everyone knows, I always have one more questions :)
What did we learn?
To be a candidate for the program, the following must happen:
-Obtain remission - Chemo treatments (Campath and Cladribine)
-Find a donor.
-HLA (Human Leukocyte Antigen System) testing to determine Bill's type
-HLA testing kits sent out to siblings to see if they are an exact match (10 out of 10)
-If no siblings are matches - National Marrow registry search - Moffitt will perform
-Vital Organ testing (one to two days) Kidney, Liver, Heart and Lungs.
-Dental clearance - Mouth is free from signs and symptoms of infection, broken teeth, the need for root canals or crowns.
-Care giver must commit to be with Bill for the entire process (can be more than one)
Obtaining Stem Cells for transplant:
-There is a 1 in 4 chance that each of Bill's siblings will be an exact match.
-There are 8 million plus donors in the National Registry - 70% to 75% change of finding a match, usually takes three weeks.
-If no match in the National donor registry, Umbilical cord registry is an option. Two units will need to be found that match each other and then match Bill. (least preferred option).
If a sibling is a match, they would come to Moffitt to donate stem cells. If the donor is from the registry they will harvest the stem cells where they live.
The donor would need to be tested for the hepatitis virus, human immunodeficiency virus (HIV) and other infectious diseases. The process can take one to two days and is done with a process called apheresis (similar to dialysis). A needle is placed in the donors arm, blood is run through the apheresis machine, components are separated, stems cells are harvested and the remaining blood is return to the donor.
What to expect with Transplantation:
Pre-admission:
Three days before admission, a triple lumen-catheter will be implanted. The power port will be used, but cannot be used for the transplant.
Admission - Week one:
-The first four days in the hospital Bill will be treated with Busulfan/Fludarabine (Chemo) to kill his bone marrow and blood counts.
-Day five and six will be days to allow the chemo to exit his body.
-Day seven - Bill's new birthday - Stem cell (bone marrow) transplant. The actual transplant is the easiest part of the procedure. It will take between 45 minutes to an hour to complete. The transplant is done via the catheter, similar to a blood transfusion.
Admission - Week two:
The second week is the worst of the process. Bill's body will have no immune system. He will be on antibiotics and anti rejection medication. He will have no energy and may have pain. Bill will probably need 1-2 red blood cell transfusions and 3-4 platelet transfusions during his stay.
Admission - Week three:
Bill will be extremely tired and fatigued, require transfusions, antibiotics and fluids. At the end of the third week Bill will start recovery. His appetite and energy will begin to return.
Admission - Week four:
By the end of the fourth week, if all goes well and there are no major complications, Bill will be discharged from the hospital.
While Bill is in the hospital I will be able to stay with him, in the room for the entire stay. They require a caregiver be with him at all times. He will be in a private room, with a built in desk, and guest cot. I will be able to work remotely. The hospital allows up to two visitors in the room, and they must be healthy without sickness. If a visitor has just gotten over a cold or has one they will not be permitted to enter the unit. This is for Bill's safety and the other patients. With no immune system we cannot risk someone coming to see him with a cold, it could be deadly.
Discharge:
Post transplant Bill and his caregiver must stay near the hospital for 100 days. The 100 days includes the inpatient stay. The American Cancer Society runs a hope lodge on the Moffitt campus, which provides free lodging post transplant (if there is vacancy when the patient is discharged). Moffitt has 41 apartments within two miles of the clinic that can be rented for $65 per day. They provide shuttle service to and from both the hope lodge and the apartments.
Bill and the caregiver will need to have daily visits to the outpatient clinic to start. Then over the next 60 days, the visits will be further apart until Bill is released to go home. Then Bill will need to come to Moffitt once a week, then every other week, once a month, then every other month and so on for the first year. The largest risk is during the first two months after discharge.
There are three concerns after transplant: Graft vs Host Disease (GVHD), Infections and organ damage. this is the main reason for needing to be right near the hospital post discharge.
There is a 30%-40% chance of getting acute GVHD when the stem cells are from a sibling.
There is a 60%-70% chance of getting acute GVHD when the stem cells are from an unrelated donor. Acute GVHD usually happens in the first 30-40 days post transplant.
Chronic GVHD is possible for several years after transplant. It is not frequent, but must be treated.
What are the risks with the transplant?
20% of transplant patients die due to transplant related complications.
1 in 1000 patients experience rejection.
1/4 to 1/3 of patients experience relapse.
There is a 40% to 50% chance of survival - alive and well with bone marrow transplant.
The important thing to remember, and the doctor pointed this out, you need to compare the risks with the alternative - death.
Dr. Ayala shared the results of a retrospective study that was done of 28 patients from all over the world, treated for T-PLL between 1996 and 2008. 13 of those patients received an allogenic stem cell transplant. Some of the statistics were obtain from this study. The study was published in the British journal of haematology (2010 Blackwell Publishing, LTD.).
Dr. Ayala did point out that back in 1996 the treatment pre-transplant was more toxic and harmful to the body than what is used today, so there is a good chance the outcomes will be better than the statistics he stated.
When we were done with Dr. Ayala he said that Bill is a good candidate and he recommends that he get the transplant.
Six vials of blood were taken, some for the HLA typing. Bill was also able to get his 3rd injection of Neupogen while we were at Moffitt.
We did get the Flow Cytometry report back on Monday. We reviewed it with Dr. Ayala and he said Bill is responding very well to treatment. The diagnosis on the report: "Peripheral blood with markedly decreased T and B lymphocytes. No significant immunophenotypic abnormalities are detected".
That is it for now. I am sure I will have more to add as I re-read what I have written tomorrow.
Bone Marrow Transplant Consultation
Today was a very long day. We got to Moffitt at 9:15am and left at 4:00pm. All meetings were very productive and we learned a lot.
First meeting was with Kristy, Dr. Ayala's PA. Kristy took Bill's history and physical and answered most of the questions we had on our list. Then we met with Dr. Ayala, the Dr. that would manage the transplant and treatment. Next we met with Sandy, one of Dr. Ayala's nurses and finally Heather, the social worker. Each person took as much time as we needed and did not leave until all questions were asked. As everyone knows, I always have one more questions :)
What did we learn?
To be a candidate for the program, the following must happen:
-Obtain remission - Chemo treatments (Campath and Cladribine)
-Find a donor.
-HLA (Human Leukocyte Antigen System) testing to determine Bill's type
-HLA testing kits sent out to siblings to see if they are an exact match (10 out of 10)
-If no siblings are matches - National Marrow registry search - Moffitt will perform
-Vital Organ testing (one to two days) Kidney, Liver, Heart and Lungs.
-Dental clearance - Mouth is free from signs and symptoms of infection, broken teeth, the need for root canals or crowns.
-Care giver must commit to be with Bill for the entire process (can be more than one)
Obtaining Stem Cells for transplant:
-There is a 1 in 4 chance that each of Bill's siblings will be an exact match.
-There are 8 million plus donors in the National Registry - 70% to 75% change of finding a match, usually takes three weeks.
-If no match in the National donor registry, Umbilical cord registry is an option. Two units will need to be found that match each other and then match Bill. (least preferred option).
If a sibling is a match, they would come to Moffitt to donate stem cells. If the donor is from the registry they will harvest the stem cells where they live.
The donor would need to be tested for the hepatitis virus, human immunodeficiency virus (HIV) and other infectious diseases. The process can take one to two days and is done with a process called apheresis (similar to dialysis). A needle is placed in the donors arm, blood is run through the apheresis machine, components are separated, stems cells are harvested and the remaining blood is return to the donor.
What to expect with Transplantation:
Pre-admission:
Three days before admission, a triple lumen-catheter will be implanted. The power port will be used, but cannot be used for the transplant.
Admission - Week one:
-The first four days in the hospital Bill will be treated with Busulfan/Fludarabine (Chemo) to kill his bone marrow and blood counts.
-Day five and six will be days to allow the chemo to exit his body.
-Day seven - Bill's new birthday - Stem cell (bone marrow) transplant. The actual transplant is the easiest part of the procedure. It will take between 45 minutes to an hour to complete. The transplant is done via the catheter, similar to a blood transfusion.
Admission - Week two:
The second week is the worst of the process. Bill's body will have no immune system. He will be on antibiotics and anti rejection medication. He will have no energy and may have pain. Bill will probably need 1-2 red blood cell transfusions and 3-4 platelet transfusions during his stay.
Admission - Week three:
Bill will be extremely tired and fatigued, require transfusions, antibiotics and fluids. At the end of the third week Bill will start recovery. His appetite and energy will begin to return.
Admission - Week four:
By the end of the fourth week, if all goes well and there are no major complications, Bill will be discharged from the hospital.
While Bill is in the hospital I will be able to stay with him, in the room for the entire stay. They require a caregiver be with him at all times. He will be in a private room, with a built in desk, and guest cot. I will be able to work remotely. The hospital allows up to two visitors in the room, and they must be healthy without sickness. If a visitor has just gotten over a cold or has one they will not be permitted to enter the unit. This is for Bill's safety and the other patients. With no immune system we cannot risk someone coming to see him with a cold, it could be deadly.
Discharge:
Post transplant Bill and his caregiver must stay near the hospital for 100 days. The 100 days includes the inpatient stay. The American Cancer Society runs a hope lodge on the Moffitt campus, which provides free lodging post transplant (if there is vacancy when the patient is discharged). Moffitt has 41 apartments within two miles of the clinic that can be rented for $65 per day. They provide shuttle service to and from both the hope lodge and the apartments.
Bill and the caregiver will need to have daily visits to the outpatient clinic to start. Then over the next 60 days, the visits will be further apart until Bill is released to go home. Then Bill will need to come to Moffitt once a week, then every other week, once a month, then every other month and so on for the first year. The largest risk is during the first two months after discharge.
There are three concerns after transplant: Graft vs Host Disease (GVHD), Infections and organ damage. this is the main reason for needing to be right near the hospital post discharge.
There is a 30%-40% chance of getting acute GVHD when the stem cells are from a sibling.
There is a 60%-70% chance of getting acute GVHD when the stem cells are from an unrelated donor. Acute GVHD usually happens in the first 30-40 days post transplant.
Chronic GVHD is possible for several years after transplant. It is not frequent, but must be treated.
What are the risks with the transplant?
20% of transplant patients die due to transplant related complications.
1 in 1000 patients experience rejection.
1/4 to 1/3 of patients experience relapse.
There is a 40% to 50% chance of survival - alive and well with bone marrow transplant.
The important thing to remember, and the doctor pointed this out, you need to compare the risks with the alternative - death.
Dr. Ayala shared the results of a retrospective study that was done of 28 patients from all over the world, treated for T-PLL between 1996 and 2008. 13 of those patients received an allogenic stem cell transplant. Some of the statistics were obtain from this study. The study was published in the British journal of haematology (2010 Blackwell Publishing, LTD.).
Dr. Ayala did point out that back in 1996 the treatment pre-transplant was more toxic and harmful to the body than what is used today, so there is a good chance the outcomes will be better than the statistics he stated.
When we were done with Dr. Ayala he said that Bill is a good candidate and he recommends that he get the transplant.
Six vials of blood were taken, some for the HLA typing. Bill was also able to get his 3rd injection of Neupogen while we were at Moffitt.
We did get the Flow Cytometry report back on Monday. We reviewed it with Dr. Ayala and he said Bill is responding very well to treatment. The diagnosis on the report: "Peripheral blood with markedly decreased T and B lymphocytes. No significant immunophenotypic abnormalities are detected".
That is it for now. I am sure I will have more to add as I re-read what I have written tomorrow.
Post # 25
Nulasta vs. Neupogen
T-PLL update
Monday Bill had an appointment with the local cancer center. His doctor was out of town so we saw Katie who is a PA. Katie was great and spent a lot of time with us to make sure she addressed all of our questions and concerns. Dr. Castro indicated that Bill should get a Neulasta shot but it was not clear so it was put off until Tuesday. Here Bill ran into a minor bump in the road. As the saying goes "you learn something new everyday". Neulasta has a window of opportunity - 24 hours after treatment, but not more than 72 hours. Monday at noon was the end of the window of treatment with Neulasta. Since Bill missed that window he now needs to get Neupogen. Neulasta is one injection, Neupogen is 10 injections over ten days. For 10 days straight Bill will need to have treatment, either Campath and Neupogen or just Neupogen. So far Bill has had two injections of Neupogen.
Today is the big Bone Marrow Transplant (BMT) meeting. We are in the BMT clinic waiting for our appointment. As soon as we are done at Moffitt today we will need to race back to Titusville so Bill can get his Neupogen shot. We will never miss the window of opportunity for Neulasta again.
Nulasta vs. Neupogen
T-PLL update
Monday Bill had an appointment with the local cancer center. His doctor was out of town so we saw Katie who is a PA. Katie was great and spent a lot of time with us to make sure she addressed all of our questions and concerns. Dr. Castro indicated that Bill should get a Neulasta shot but it was not clear so it was put off until Tuesday. Here Bill ran into a minor bump in the road. As the saying goes "you learn something new everyday". Neulasta has a window of opportunity - 24 hours after treatment, but not more than 72 hours. Monday at noon was the end of the window of treatment with Neulasta. Since Bill missed that window he now needs to get Neupogen. Neulasta is one injection, Neupogen is 10 injections over ten days. For 10 days straight Bill will need to have treatment, either Campath and Neupogen or just Neupogen. So far Bill has had two injections of Neupogen.
Today is the big Bone Marrow Transplant (BMT) meeting. We are in the BMT clinic waiting for our appointment. As soon as we are done at Moffitt today we will need to race back to Titusville so Bill can get his Neupogen shot. We will never miss the window of opportunity for Neulasta again.
Sunday, July 11, 2010
Post # 24
How to become a follower
We have heard that some of our followers are having difficulty becoming a registered follower. Below are step by step instructions:
Click on the Follow button just below the follower heading:
if you already have one of the accounts listed in the screen below you can log in with that account. If you do not have one of the accounts listed, at the bottom of the screen click on "Create a new Google Account".
Type in your e-mail address and a password, confirm your password, deselect stay signed in and enable web history, enter your birthday and the word verification. When you are ready, click on the "I accept. Create my account" button.
That is it, you will then be able to join Bill's blog as a follower. The more followers the easier it will be for Bill to get the search engines, such as google, to index his blog so it shows up in an Internet search for T-PLL.
Thanks
How to become a follower
We have heard that some of our followers are having difficulty becoming a registered follower. Below are step by step instructions:
Click on the Follow button just below the follower heading:
if you already have one of the accounts listed in the screen below you can log in with that account. If you do not have one of the accounts listed, at the bottom of the screen click on "Create a new Google Account".
Type in your e-mail address and a password, confirm your password, deselect stay signed in and enable web history, enter your birthday and the word verification. When you are ready, click on the "I accept. Create my account" button.
That is it, you will then be able to join Bill's blog as a follower. The more followers the easier it will be for Bill to get the search engines, such as google, to index his blog so it shows up in an Internet search for T-PLL.Thanks
T-PLL Update
Last week was a long week of treatment, one sometimes two every day. Bill is very happy that the 5 days of Cladribine are behind him for another month. The sores in Bill's mouth have healed, and other than being fatigued he is feeling good.
Friday night we had a phone call with Max and Shirley who live in Buffalo, NY. Max is 10 plus months post bone marrow transplant. His first birthday is coming up soon and will be a great celebration. During the call Max and Shirley shared their experience from getting to remission, pre-transplant, post transplant while in the hospital and then at home. There is nothing like first hand information when it comes to preparing and what to expect. Bill and I had many questions and Max and Shirley were great. I was able to type all the main points and developed a question sheet we will bring to our bone marrow team meeting at Moffitt this Thursday, July 15th. We are grateful to Max and Shirley for taking the time to help, words cannot express our gratitude.
Tomorrow Bill has his 16th Campath injection and then a follow up with Dr. Castro's office. Maybe the flow cytometry reports will be back. We are curious to see where Bill's blood levels are and if he will need a Neulasta injection to help bring up his WBC.
As promised, I have attached some links for information on bone marrow transplantation. The links can be found to the right of the blog, just below the followers under that heading "Bone Marrow Transplantation".
The first link (Blood and Marrow Stem Cell Transplantation Guide) is a document I read on the Leukemia & Lymphoma Societies website. The document explains the entire bone marrow process in layman's terms. Bill will be getting an allogeneic transplant. Bill's siblings are his best chance for an HLA match (human leukocyte antigen system). A person's HLA type is governed by genes on chromosome 6 in tissue cells. A sibling match is one in four due to each parent having two identifiers, only one from each is transferred to the child. See below:
http://www.bmtinfonet.org/ The second link: "Blood & Marrow Transplant Information Network" is a great site full on information and free reading material on bone marrow transplant that can be mailed to your home.
www.leukemia-lymphoma.org/hm_lls The third link: "The Leukemia and Lymphoma Society" home page. Do a search on bone marrow and many articles are returned.
http://www.marrow.org/ The fourth link: "National Marrow Donor Program" contains information on how to become a donor as well as information for patients and families.
Last week was a long week of treatment, one sometimes two every day. Bill is very happy that the 5 days of Cladribine are behind him for another month. The sores in Bill's mouth have healed, and other than being fatigued he is feeling good.
Friday night we had a phone call with Max and Shirley who live in Buffalo, NY. Max is 10 plus months post bone marrow transplant. His first birthday is coming up soon and will be a great celebration. During the call Max and Shirley shared their experience from getting to remission, pre-transplant, post transplant while in the hospital and then at home. There is nothing like first hand information when it comes to preparing and what to expect. Bill and I had many questions and Max and Shirley were great. I was able to type all the main points and developed a question sheet we will bring to our bone marrow team meeting at Moffitt this Thursday, July 15th. We are grateful to Max and Shirley for taking the time to help, words cannot express our gratitude.
Tomorrow Bill has his 16th Campath injection and then a follow up with Dr. Castro's office. Maybe the flow cytometry reports will be back. We are curious to see where Bill's blood levels are and if he will need a Neulasta injection to help bring up his WBC.
As promised, I have attached some links for information on bone marrow transplantation. The links can be found to the right of the blog, just below the followers under that heading "Bone Marrow Transplantation".
The first link (Blood and Marrow Stem Cell Transplantation Guide) is a document I read on the Leukemia & Lymphoma Societies website. The document explains the entire bone marrow process in layman's terms. Bill will be getting an allogeneic transplant. Bill's siblings are his best chance for an HLA match (human leukocyte antigen system). A person's HLA type is governed by genes on chromosome 6 in tissue cells. A sibling match is one in four due to each parent having two identifiers, only one from each is transferred to the child. See below:
http://www.bmtinfonet.org/ The second link: "Blood & Marrow Transplant Information Network" is a great site full on information and free reading material on bone marrow transplant that can be mailed to your home.
www.leukemia-lymphoma.org/hm_lls The third link: "The Leukemia and Lymphoma Society" home page. Do a search on bone marrow and many articles are returned.
http://www.marrow.org/ The fourth link: "National Marrow Donor Program" contains information on how to become a donor as well as information for patients and families.
Friday, July 9, 2010
T-PLL Update
Tuesday Bill's sister Margy picked him up and brought him to the infusion center for his second dose of Cladribine. Since this was the first time at the infusion center with Cladribine, I dropped in to confirm that everything was ordered properly. The nurse from the hospital one Monday made sure the infusion center got a copy of the updated orders so everything was good to go. Margy was very impressed with the staff at the infusion center and the way they treated Bill. Margy said "I can leave today knowing that my brother is in good hands and is getting the best care possible. I have complete faith in the staff treating Bill".
In the picture below is: Margy, Mike and Bill
Wednesday I made arrangements to have the Healing in motion van pick Bill up and bring him to the infusion center for his third dose of Cladribine. The van is an employee funded program to help those without transportation get to and from the hospital and clinics for treatment. The van provided me a healing experience by allowing me to continue working and not have to go home and pick Bill up. When treatment was nearing the 2 hour mark, I went over to the infusion center to see the staff and then bring Bill home. My office is less than 5 minutes from the infusion center. Bill also received his 14th injection of Campath.
Thursday, the healing in motion van picked Bill up again and brought him to the infusion center. Bill e-mails me when the Cladribine IV drip starts and that provides me with a two hour warning so I can get there just as treatment is ending. My goal is to never have Bill wait for me after treatment. The treatments have been going well all week. Talking last night Bill said he feels pretty good. The Campath gives him more trouble than the Cladribine. The Campath injection takes 5 to 10 seconds, the Cladribine IV takes two hours. It is amazing how a small injection can make you feel bad. We are grateful that Bill is not getting the Campath via IV, that is brutal. The only problem that Bill has been having this last week is sores in his mouth. That is a side effect that we were warned about. Bill does have medication for this. He was prescribed 800mg of Acyclovir. The doctor instructed Bill to take one pill every day to prevent sores from starting. If the sores appeared, his was instructed to take one pill twice a day. Tuesday Sylvia called the doctor and asked him to prescribe Lidocaine/Nystatin (magic wash/swish and swallow). Bill is to use the magic wash every six hours as needed when he has sores. As of bedtime last night Bill was starting to have some relief, hopefully today the sores will be gone or the pain will no longer be there.
Below is a picture of Bill with his nurse Sylvia.
I must say that everyone has been great to me. My staff constantly offer to help in any way needed. Margy has done a day with Bill that I was not able to do. The healing in motion van has provided me a healing experience this week. I am truly honored. It is amazing how everyone comes together to help and be there in action, not just in words. As we move into the bone marrow transplant phase we are going to need lots of help.
Today Bill gets his final dose of Cladribine for this round. That makes 10 doses of Cladribine. He also gets his 15th dose of Campath. I will drop him off this morning and the healing in motion van will bring Bill home when treatment is completed.
Tonight we have a call with Shirley and Max to talk about Max's experience with his bone marrow transplant. Max just turned 10 months old (since transplant). We wish Max continued success with his journey.
Tuesday Bill's sister Margy picked him up and brought him to the infusion center for his second dose of Cladribine. Since this was the first time at the infusion center with Cladribine, I dropped in to confirm that everything was ordered properly. The nurse from the hospital one Monday made sure the infusion center got a copy of the updated orders so everything was good to go. Margy was very impressed with the staff at the infusion center and the way they treated Bill. Margy said "I can leave today knowing that my brother is in good hands and is getting the best care possible. I have complete faith in the staff treating Bill".
In the picture below is: Margy, Mike and Bill
Wednesday I made arrangements to have the Healing in motion van pick Bill up and bring him to the infusion center for his third dose of Cladribine. The van is an employee funded program to help those without transportation get to and from the hospital and clinics for treatment. The van provided me a healing experience by allowing me to continue working and not have to go home and pick Bill up. When treatment was nearing the 2 hour mark, I went over to the infusion center to see the staff and then bring Bill home. My office is less than 5 minutes from the infusion center. Bill also received his 14th injection of Campath.Thursday, the healing in motion van picked Bill up again and brought him to the infusion center. Bill e-mails me when the Cladribine IV drip starts and that provides me with a two hour warning so I can get there just as treatment is ending. My goal is to never have Bill wait for me after treatment. The treatments have been going well all week. Talking last night Bill said he feels pretty good. The Campath gives him more trouble than the Cladribine. The Campath injection takes 5 to 10 seconds, the Cladribine IV takes two hours. It is amazing how a small injection can make you feel bad. We are grateful that Bill is not getting the Campath via IV, that is brutal. The only problem that Bill has been having this last week is sores in his mouth. That is a side effect that we were warned about. Bill does have medication for this. He was prescribed 800mg of Acyclovir. The doctor instructed Bill to take one pill every day to prevent sores from starting. If the sores appeared, his was instructed to take one pill twice a day. Tuesday Sylvia called the doctor and asked him to prescribe Lidocaine/Nystatin (magic wash/swish and swallow). Bill is to use the magic wash every six hours as needed when he has sores. As of bedtime last night Bill was starting to have some relief, hopefully today the sores will be gone or the pain will no longer be there.
Below is a picture of Bill with his nurse Sylvia.
I must say that everyone has been great to me. My staff constantly offer to help in any way needed. Margy has done a day with Bill that I was not able to do. The healing in motion van has provided me a healing experience this week. I am truly honored. It is amazing how everyone comes together to help and be there in action, not just in words. As we move into the bone marrow transplant phase we are going to need lots of help.
Today Bill gets his final dose of Cladribine for this round. That makes 10 doses of Cladribine. He also gets his 15th dose of Campath. I will drop him off this morning and the healing in motion van will bring Bill home when treatment is completed.
Tonight we have a call with Shirley and Max to talk about Max's experience with his bone marrow transplant. Max just turned 10 months old (since transplant). We wish Max continued success with his journey.
Monday, July 5, 2010
T-PLL update
Happy 4th of July!!
Sunday Bill and I took a ride to the Merritt Island mall. Bill wanted to get some exercise walking and we felt being inside would be better for him than outside. We walked most of the mall before Bill got tired and had to take a break. We sat for a few minutes and then headed for the car and went home. We had a very quiet and relaxing 4th of July.
Today was the beginning of Bill's second round of Cladribine IV and his 13th injection of Campath. Due to today being an observed holiday, the infusion center was closed so the treatment took place in the hospital. We were there for seven hours due to a few items. One, when in the hospital you get treated as if you were an inpatient which requires more steps. Second, the order for the premeds for Campath was not received, so that had to be resolved. Third, blood had to be taken and resulted to make sure Bill's levels were OK to receive the treatment. Although it took as many hours as it did, the nurses were great. They really took the time to not only explain everything that they were doing, but also to address items that they wanted to be sure Bill was aware of such as eating right and exercise.
When the treatment was ready to begin, the nurse accessed the power port. This was the first time the port was used and it was great. Bill did not feel anything when the needle was inserted. The nurse was able to draw the blood for the tests through the port and then started the saline IV. The saline was replaced with the Cladribine for the two hour infusion. When the IV finished Bill was given the Campath injection in his right thigh.
Bill was weighed when we got to the room and he is now down to 130 pounds. That is a loss of 13 pounds since May 2010. Bill's WBC is 2.1, which is 2.2 below the bottom of the normal range. Bill's Neutrophil count is 1.8, down from the count of 5.3 on June 15th and slightly higher than the count of 1.52 on June 28th. The doctor mention to Bill that he will probably need another Neulasta injection when this round of Cladribine is done.
Tomorrow Bill's sister Margy will be taking him to the infusion center for his next Cladribine infusion. Four more to go before this round of Cladribine is over.
We spent some time on Saturday night looking at video's about the bone marrow transplant process that were posted on the internet by Moffitt and Duke university. We learned a lot about the process and what to expect. We are starting our list of questions for the transplant team. Some time this week I will post some of the links for your reference.
Happy 4th of July!!
Sunday Bill and I took a ride to the Merritt Island mall. Bill wanted to get some exercise walking and we felt being inside would be better for him than outside. We walked most of the mall before Bill got tired and had to take a break. We sat for a few minutes and then headed for the car and went home. We had a very quiet and relaxing 4th of July.
Today was the beginning of Bill's second round of Cladribine IV and his 13th injection of Campath. Due to today being an observed holiday, the infusion center was closed so the treatment took place in the hospital. We were there for seven hours due to a few items. One, when in the hospital you get treated as if you were an inpatient which requires more steps. Second, the order for the premeds for Campath was not received, so that had to be resolved. Third, blood had to be taken and resulted to make sure Bill's levels were OK to receive the treatment. Although it took as many hours as it did, the nurses were great. They really took the time to not only explain everything that they were doing, but also to address items that they wanted to be sure Bill was aware of such as eating right and exercise.
When the treatment was ready to begin, the nurse accessed the power port. This was the first time the port was used and it was great. Bill did not feel anything when the needle was inserted. The nurse was able to draw the blood for the tests through the port and then started the saline IV. The saline was replaced with the Cladribine for the two hour infusion. When the IV finished Bill was given the Campath injection in his right thigh.
Bill was weighed when we got to the room and he is now down to 130 pounds. That is a loss of 13 pounds since May 2010. Bill's WBC is 2.1, which is 2.2 below the bottom of the normal range. Bill's Neutrophil count is 1.8, down from the count of 5.3 on June 15th and slightly higher than the count of 1.52 on June 28th. The doctor mention to Bill that he will probably need another Neulasta injection when this round of Cladribine is done.
Tomorrow Bill's sister Margy will be taking him to the infusion center for his next Cladribine infusion. Four more to go before this round of Cladribine is over.
We spent some time on Saturday night looking at video's about the bone marrow transplant process that were posted on the internet by Moffitt and Duke university. We learned a lot about the process and what to expect. We are starting our list of questions for the transplant team. Some time this week I will post some of the links for your reference.
Friday, July 2, 2010
T-PLL Update
Now that things are on a regular schedule with Bill's treatment we will only have a post a few times a week. We are grateful that he has not experienced any setbacks. This week-end marks one month since Bill started treatment. Today Bill will receive his 12th dose of Campath.
Yesterday Bill had a follow up appointment with the Dr. that implanted the port. The incision is healing nicely so Bill does not need to do another follow up. The first use of the port is only three days away.
Next week Bill will receive his second round of Cladribine IV. The chemo will be administered for five consecutive days starting n Monday July 5th at the infusion center. The nurses wanted to know exactly what the procedure was and what to expect before, during and after the treatment. Bill directed them to the blog and they were able to see exactly how the process was done at Hershey; premeds, doses and all. This blog has proved to be a useful tool for the nurses at the infusion center.
I will be with Bill on Monday, His sister Margy will be with him on Tuesday. If all goes well the first two days, the healing in motion van will provide Bill transportation to the infusion center on Wednesday, Thursday and Friday. I will join Bill towards the end of his treatment each day to bring him home.
Now that things are on a regular schedule with Bill's treatment we will only have a post a few times a week. We are grateful that he has not experienced any setbacks. This week-end marks one month since Bill started treatment. Today Bill will receive his 12th dose of Campath.
Yesterday Bill had a follow up appointment with the Dr. that implanted the port. The incision is healing nicely so Bill does not need to do another follow up. The first use of the port is only three days away.
Next week Bill will receive his second round of Cladribine IV. The chemo will be administered for five consecutive days starting n Monday July 5th at the infusion center. The nurses wanted to know exactly what the procedure was and what to expect before, during and after the treatment. Bill directed them to the blog and they were able to see exactly how the process was done at Hershey; premeds, doses and all. This blog has proved to be a useful tool for the nurses at the infusion center.
I will be with Bill on Monday, His sister Margy will be with him on Tuesday. If all goes well the first two days, the healing in motion van will provide Bill transportation to the infusion center on Wednesday, Thursday and Friday. I will join Bill towards the end of his treatment each day to bring him home.
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