T-PLL update
Yesterday was Bill's 10th injection of Campath. Other than weakness in his legs and fatigue, he has been doing well with the treatment. Bill has also been experiencing trouble eating due to pain in his stomach. The Dr. is puzzled since all the tests came back negative. Bill has been driving himself to the infusion center for the injections. Next Tuesday Bill will start his second round of Cladribine IV drip. Since the 4th of July will be celebrated on Monday the treatment will start on Tuesday and run through Saturday. That will be the first use of his new power port.
Yesterday Bill also had a visit with Dr. Castro. 6 vials of blood were taken for tests. The Flow Cytometry test will also be performed on the blood taken at this visit to give the doctors a look at the progress of the treatment.
Thursday July 15 Bill and I will be going to Tampa for a 3 to 4 hour meeting with the Bone Marrow Transplant Team (BMT). This meeting will be an introduction to the process as well as an assessment to determine if Bill is a candidate. After this meeting the kits will go out to Bill's siblings to determine if any of them are a match to be his donor.
We have started to do research on bone marrow transplantation and in the near future will be posting some links to sites that explain the process.
Tuesday, June 29, 2010
Thursday, June 24, 2010
T-PLL Update
So what has happened since the last update on Saturday?
Sunday, father’s day, was a good day for Bill. We took at ride to visit his sister Margy and her family. His son William and his grandson’s Adrian and Alex were there to see him as well. The visit was very nice, but towards the end Bill developed a low grade fever. By the time we got home the fever was gone.
Monday was Campath treatment number 8. After a trip to the infusion center for the injection Bill made a visit to my office. It is always nice to see Bill during the work day. My staff also appreciates a chance to see Bill, even if he is wearing his mask. We left to go to the appointment with Dr. Castro. The blood work showed that Bill’s neutrophils are down to 3,000, but still looking good at 1,000 above the low end of normal. The WBC is lower than normal at 3,190, normal is 4,500. I was able to get Bill an appointment for Tuesday to see the surgeon who eventually implanted the port.
Tuesday after the visit to the surgeon Bill went to the hospital to register for the procedure. He was put on the schedule for 3:00pm on Wednesday. The surgeon instructed Bill not to get his scheduled Campath injection on Wednesday. We made a call to Dr. Castro to get instructions on changing the scheduled treatment. Dr. Castro told Bill to skip Wednesday and pick up again on Friday.
Wednesday Bill waited for 2:00pm to go to the hospital for the procedure. The OR called around 12:30pm asking if Bill could come in earlier, they had a major case cancel. I headed home to pick him up and bring him to the OR. It is really nice to work at the hospital. I know most of the people that are treating Bill including the surgeon. My friend Sharon from High School and College also works in the OR and was scheduled to be in the room during Bill’s case. Unfortunately due to the time they were to start, it was past Sharon’s time to leave for the day. Sharon came out to see us as we waited for Bill to go in. Sharon keeps up with the blog, so she was expecting Bill to show up for the implant. The procedure took about an hour. A BARD Power Port was implanted in Bill’s left side of his chest just above the breast. See diagram below.
So what has happened since the last update on Saturday?
Sunday, father’s day, was a good day for Bill. We took at ride to visit his sister Margy and her family. His son William and his grandson’s Adrian and Alex were there to see him as well. The visit was very nice, but towards the end Bill developed a low grade fever. By the time we got home the fever was gone.
Monday was Campath treatment number 8. After a trip to the infusion center for the injection Bill made a visit to my office. It is always nice to see Bill during the work day. My staff also appreciates a chance to see Bill, even if he is wearing his mask. We left to go to the appointment with Dr. Castro. The blood work showed that Bill’s neutrophils are down to 3,000, but still looking good at 1,000 above the low end of normal. The WBC is lower than normal at 3,190, normal is 4,500. I was able to get Bill an appointment for Tuesday to see the surgeon who eventually implanted the port.
Tuesday after the visit to the surgeon Bill went to the hospital to register for the procedure. He was put on the schedule for 3:00pm on Wednesday. The surgeon instructed Bill not to get his scheduled Campath injection on Wednesday. We made a call to Dr. Castro to get instructions on changing the scheduled treatment. Dr. Castro told Bill to skip Wednesday and pick up again on Friday.
Wednesday Bill waited for 2:00pm to go to the hospital for the procedure. The OR called around 12:30pm asking if Bill could come in earlier, they had a major case cancel. I headed home to pick him up and bring him to the OR. It is really nice to work at the hospital. I know most of the people that are treating Bill including the surgeon. My friend Sharon from High School and College also works in the OR and was scheduled to be in the room during Bill’s case. Unfortunately due to the time they were to start, it was past Sharon’s time to leave for the day. Sharon came out to see us as we waited for Bill to go in. Sharon keeps up with the blog, so she was expecting Bill to show up for the implant. The procedure took about an hour. A BARD Power Port was implanted in Bill’s left side of his chest just above the breast. See diagram below.
Saturday, June 19, 2010
Things are still going well as of today. Bill has noticed that his ability to do things around the house has diminished. He can go for about five minutes and then his legs feel like rubber. I had time today to go through the blood work results from the last two weeks. It is amazing how treatment for two weeks has changed the results. For the first time in three years Bill's WBC is in the normal range.
Friday, June 18, 2010
Yesterday Bill was discharged from the hospital at noon. He thought his stomach was back to normal and ate dinner, only to have the pain return due to over eating. Going forward he needs to eat small portions through out the day, He made it through the night without a fever and loved to be in his own bed.
Today was Bill's 7th Campath shot and he felt strong enough to drive himself to the infusion center. Bill said he is more encouraged about the treatment since it seems like his body is learning to tolerate the chemo. This time he took the injection in is right thigh. Shortly after the injection Bill left the infusion center and went to the grocery store, without any effort, to pick up some food.
When I got home from work, I noticed that all the grocery bags were on the counter. When I asked Bill if he was OK he replied "When I got home my legs felt like rubber so I put the cold stuff in the freezer and fridge and ran for the couch". This will be Bill's first week-end since the start of treatment that he will be home and able to relax.
TODAY WAS A GOOD DAY!!! :)
Thursday, June 17, 2010
For those that are wondering what I look like, here is a picture of me (Mike).
And now about Bill
And now about Bill
Bill spoke with Dr. Castro after I left for work and asked him to write an order for a port. A referral was given to a surgeon that comes highly recommended. We were both hoping that Bill would be able to get the port while he is in the hospital but that is not going to work out. This evening the surgeon stopped by and told Bill the he wants to be sure that the fever is not caused by an infection before he implants the port. This means it will either be on Friday or Monday.
So far today Bill has not had a fever. Bill received his 6th Campath shot this afternoon, in his belly. This was the first shot where he experience pain in his belly. Several hours later the pain subsided. Hopefully Bill will be able to go home tomorrow.
So far today Bill has not had a fever. Bill received his 6th Campath shot this afternoon, in his belly. This was the first shot where he experience pain in his belly. Several hours later the pain subsided. Hopefully Bill will be able to go home tomorrow.
Wednesday, June 16, 2010
T-PLL update
It was nice to be home and sleep in our beds for the first time in over two weeks. Monday was a busy day for us. We had to set up an appointment with Dr. Castro before we could receive any treatment. During the visit blood was taken to determine levels. The neutrophils were at 1,200 which is welcomed news considering Bill was at 200 when we left Hershey. Then it was off to the infusion center to receive Bills 5th Campath treatment, 30mg. They gave him Tylenol and Benadryl. Starting with the next treatment they will be giving zyrtec instead of Benadryl. The Benadryl makes Bill very sleepy. In-between visits we picked up Bill's new iPad.
Last night I picked up Tweedy and brought him home. He was very happy to see me. As I was pulling into our community Bill called me with the news that he had a fever, his eyes were hurting and his head felt like it was going to explode. I got home and confirmed the temperature and noticed that Bill had a rash on his face, arms, legs, back and stomach. The rash looked like blotching. I called Dr. Castro and we were off to the Emergency Room in the hospital that I work at, which is in town. Dr. Castro had them put Bill in an isolation room to protect him from others who are sick. Several sticks for blood and an IV, each time asking Bill if he had a port. Just yesterday Bill called Dr. Castro and requested he put an order in for an infuse-a-port. This will eliminate some of the sticks in his veins for blood and all of the sticks for IV. The Neutrophil count last night was 5000, which is a big improvement.
The ER doctor started Bill on an IV of 0.90% sodium chloride and 25mg of Benadryl via IV. Blood cultures were done and a chest X-ray taken. It seems the procedures will be the same when admitted with neutropenic fever regardless of the hospital. Bill was admitted around midnight and put in a private room. The Dr. ordered the IV be changed to 0.45% sodium chloride and added the antibiotic Zosyn 3.375 grams IV Q6 (every six hours)
The first week went really well. The second week is when the treatment hit Bill and has now shown us the true impact of chemo.
We saw Dr. Castro this morning and he is going to keep Bill through tomorrow morning. He wants to give Bill his next Campath treatment, which is due for today, while he is in the hospital. This will allow him to have Bill's response monitored. There is a chance that the fever is his immune system response to the treatment. This will be a learning experience for us. Hopefully the fever is not related to infection and is just a response that will subside.
It was nice to be home and sleep in our beds for the first time in over two weeks. Monday was a busy day for us. We had to set up an appointment with Dr. Castro before we could receive any treatment. During the visit blood was taken to determine levels. The neutrophils were at 1,200 which is welcomed news considering Bill was at 200 when we left Hershey. Then it was off to the infusion center to receive Bills 5th Campath treatment, 30mg. They gave him Tylenol and Benadryl. Starting with the next treatment they will be giving zyrtec instead of Benadryl. The Benadryl makes Bill very sleepy. In-between visits we picked up Bill's new iPad.
Last night I picked up Tweedy and brought him home. He was very happy to see me. As I was pulling into our community Bill called me with the news that he had a fever, his eyes were hurting and his head felt like it was going to explode. I got home and confirmed the temperature and noticed that Bill had a rash on his face, arms, legs, back and stomach. The rash looked like blotching. I called Dr. Castro and we were off to the Emergency Room in the hospital that I work at, which is in town. Dr. Castro had them put Bill in an isolation room to protect him from others who are sick. Several sticks for blood and an IV, each time asking Bill if he had a port. Just yesterday Bill called Dr. Castro and requested he put an order in for an infuse-a-port. This will eliminate some of the sticks in his veins for blood and all of the sticks for IV. The Neutrophil count last night was 5000, which is a big improvement.
The ER doctor started Bill on an IV of 0.90% sodium chloride and 25mg of Benadryl via IV. Blood cultures were done and a chest X-ray taken. It seems the procedures will be the same when admitted with neutropenic fever regardless of the hospital. Bill was admitted around midnight and put in a private room. The Dr. ordered the IV be changed to 0.45% sodium chloride and added the antibiotic Zosyn 3.375 grams IV Q6 (every six hours)
The first week went really well. The second week is when the treatment hit Bill and has now shown us the true impact of chemo.
We saw Dr. Castro this morning and he is going to keep Bill through tomorrow morning. He wants to give Bill his next Campath treatment, which is due for today, while he is in the hospital. This will allow him to have Bill's response monitored. There is a chance that the fever is his immune system response to the treatment. This will be a learning experience for us. Hopefully the fever is not related to infection and is just a response that will subside.
Sunday, June 13, 2010
T-PLL Update
Saturday around noon, Bill was discharged from the hospital. At 12:30pm we were on the road back to Florida. We are both grateful that we have a motorhome. The motorhome has allowed us to travel to a place that has given us hope without the risk of being on an airplane. Flying is a risk to Bill due to the recirculated air. We stopped for the night in South Carolina and arrived home in Titusville, FL around 7:00pm
While in the hospital Bill was treated with Cefepime 1g IV, every eight hours. We never did find out what caused the infection. At the time of discharge Bill's Neutrophils were at 200, which is the lowest they have been.
Tomorrow we have an appointment with Dr. Castro and then off to the infusion center to receive the next dose of Campath.
Saturday around noon, Bill was discharged from the hospital. At 12:30pm we were on the road back to Florida. We are both grateful that we have a motorhome. The motorhome has allowed us to travel to a place that has given us hope without the risk of being on an airplane. Flying is a risk to Bill due to the recirculated air. We stopped for the night in South Carolina and arrived home in Titusville, FL around 7:00pm
While in the hospital Bill was treated with Cefepime 1g IV, every eight hours. We never did find out what caused the infection. At the time of discharge Bill's Neutrophils were at 200, which is the lowest they have been.
Tomorrow we have an appointment with Dr. Castro and then off to the infusion center to receive the next dose of Campath.
Saturday, June 12, 2010
T-PLL update
As of last night, the blood cultures did not show anything positive. We are thinking that Bill had a bug in his stomach that was not able to do any damage when his neutrophil count was above 500. Now that Bill has been below that level, the evil monsters are playing.
The doctors just came in and they are going to discharge Bill today. Bill is feeling ok, just weak. The Dr. said the spleen will continue to go down in size. When the doctor said we are going to let you go home today, Bill jumped up out of the bed and was ready to leave. The doctor reminded him that the paperwork needed to be completed. We are going to start out journey home as soon as we get the paper work. We are ready to jump in the motorhome and hit the road running.
We will keep you posted.
As of last night, the blood cultures did not show anything positive. We are thinking that Bill had a bug in his stomach that was not able to do any damage when his neutrophil count was above 500. Now that Bill has been below that level, the evil monsters are playing.
The doctors just came in and they are going to discharge Bill today. Bill is feeling ok, just weak. The Dr. said the spleen will continue to go down in size. When the doctor said we are going to let you go home today, Bill jumped up out of the bed and was ready to leave. The doctor reminded him that the paperwork needed to be completed. We are going to start out journey home as soon as we get the paper work. We are ready to jump in the motorhome and hit the road running.
We will keep you posted.
Friday, June 11, 2010
Today makes one week since Bill started treatment for T-PLL. We celebrated the first week anniversary in the hospital. We are glad that the infection happened before we left for Florida. It would have been a nightmare to find a hospital or physician that could treat Bill while in transit.
So far the infection is being controlled by the antibiotics. Bill was started on Cefepime - 1mg last night and has had three doses by IV as of this posting. If the fever goes away and does not come back tonight we will be able to go home tomorrow. And let me tell you we will run home. We will put the pedal to the medal in the motorhome.
We heard from the baby sitter that Tweedy misses us terribly. Wendy, who works with Mike, has been watching and caring for Tweedy while we are out of town. Tweedy is the department pet sitter. Many thanks to Wendy and Scott for taking our baby in.
Throughout the day Bill was not feeling good. He noticed that his vision was not normal so the Dr. had an Ophthalmologist do a consult. Bill passed the eye exam with flying colors. The doctor said it could be caused by the Chemo, so he shouldn't worry about the eyes. About an hour ago Bill took a shower and he has started to feel better.
Thank you to everyone that has sent e-mails, facebook posts and phone messages. Your well wishes and prayers are welcomed.
So far the infection is being controlled by the antibiotics. Bill was started on Cefepime - 1mg last night and has had three doses by IV as of this posting. If the fever goes away and does not come back tonight we will be able to go home tomorrow. And let me tell you we will run home. We will put the pedal to the medal in the motorhome.
We heard from the baby sitter that Tweedy misses us terribly. Wendy, who works with Mike, has been watching and caring for Tweedy while we are out of town. Tweedy is the department pet sitter. Many thanks to Wendy and Scott for taking our baby in.
Throughout the day Bill was not feeling good. He noticed that his vision was not normal so the Dr. had an Ophthalmologist do a consult. Bill passed the eye exam with flying colors. The doctor said it could be caused by the Chemo, so he shouldn't worry about the eyes. About an hour ago Bill took a shower and he has started to feel better.
Thank you to everyone that has sent e-mails, facebook posts and phone messages. Your well wishes and prayers are welcomed.
T-PLL update - Written by Mike using Bill's account
It is 1:45am and we have made our first trip to the emergency room. Bill had been feeling under the weather today. His stomach was unsettled and he felt like a flu was coming on. At 11:30pm he was starting to feel a little settled but had a head-ache and felt like his head was hot. He took his temp and it was 101.8. We called the Oncology emergency number and let them know what was happening and then left to the ER. The ER temp was 100.6
We thought we were leaving in the morning to return to Florida. That has been delayed since they are admitting him for observation. They started an IV and took three vials of blood. They also took a chest X-ray. He is currently on an IV drip and is waiting for the IV antibiotics and a room. The doctor said I am putting you in lockdown for the night :)
It is 1:45am and we have made our first trip to the emergency room. Bill had been feeling under the weather today. His stomach was unsettled and he felt like a flu was coming on. At 11:30pm he was starting to feel a little settled but had a head-ache and felt like his head was hot. He took his temp and it was 101.8. We called the Oncology emergency number and let them know what was happening and then left to the ER. The ER temp was 100.6
We thought we were leaving in the morning to return to Florida. That has been delayed since they are admitting him for observation. They started an IV and took three vials of blood. They also took a chest X-ray. He is currently on an IV drip and is waiting for the IV antibiotics and a room. The doctor said I am putting you in lockdown for the night :)
Thursday, June 10, 2010
T-PLL update
Yesterday was my first full day off from any form of treatment. My sister Marietta and her husband Al came to visit. I received a call from the doctor indicating that I should start taking the antibiotic due to my neutrophil level nearing the 500 mark. Last night I experience side effects from the treatment for the first time. It felt like a hot rush in my head.
Today I had a visit with Dr. Epner to review my progress and get his release to go home. The doctor told us that he will be in constant contact with Dr. Castro in Titusville to monitor what is going on. I had been experiencing nausea so Dr. Epner prescribed Zofran. During the exam the doctor noted that my spleen has reduced in size nicely and there is an enlarged lymph node in my left arm pit that needs to be watched. My blood work results from today showed a WBC of 3,600 and an absolute neutrophil count of 400. Since the level is so low I was given a shot of Neulasta.
What is Neulasta®?
Neulasta® is a prescription medication called a white cell booster that helps your body produce more white blood cells to reduce your risk of infection. A sufficient white blood cell count may enable your doctors to administer chemotherapy according to their treatment schedule.
With the help of a white cell booster, you can maintain a sufficient white blood cell count. Most doctors agree that sticking to the planned chemotherapy schedule may be the first step to success. Studies have proven the effectiveness of Neulasta® in helping to protect chemotherapy patients against the complications of a low white blood cell count.
Today I received my last dose of Campath (30mg) in Hershey, PA. All of the staff at Penn State Hershey Medical Center has been great. I will be heading home to Florida and will be starting treatment in my home town. Mike spoke with Dr. Castro in Titusville today and confirmed that he is ready to start treatment on Monday. He provided us his cell phone number if we ever need to get in touch with him directly.
I was so happy that my father, who is 86, made it down to Hershey, PA to see me before I left for Florida. It was a great visit. I have to thank Louie, my father’s son in law, for driving. Louie can make anyone laugh, so it was nice to have him here as well.
I have not felt much better than I did yesterday. I have been feeling like I have a flu that is not really there. I will have to take it as it comes.
In the morning we will start our trip back to Florida. To be continued…..
Yesterday was my first full day off from any form of treatment. My sister Marietta and her husband Al came to visit. I received a call from the doctor indicating that I should start taking the antibiotic due to my neutrophil level nearing the 500 mark. Last night I experience side effects from the treatment for the first time. It felt like a hot rush in my head.
Today I had a visit with Dr. Epner to review my progress and get his release to go home. The doctor told us that he will be in constant contact with Dr. Castro in Titusville to monitor what is going on. I had been experiencing nausea so Dr. Epner prescribed Zofran. During the exam the doctor noted that my spleen has reduced in size nicely and there is an enlarged lymph node in my left arm pit that needs to be watched. My blood work results from today showed a WBC of 3,600 and an absolute neutrophil count of 400. Since the level is so low I was given a shot of Neulasta.
What is Neulasta®?
Neulasta® is a prescription medication called a white cell booster that helps your body produce more white blood cells to reduce your risk of infection. A sufficient white blood cell count may enable your doctors to administer chemotherapy according to their treatment schedule.
With the help of a white cell booster, you can maintain a sufficient white blood cell count. Most doctors agree that sticking to the planned chemotherapy schedule may be the first step to success. Studies have proven the effectiveness of Neulasta® in helping to protect chemotherapy patients against the complications of a low white blood cell count.
Today I received my last dose of Campath (30mg) in Hershey, PA. All of the staff at Penn State Hershey Medical Center has been great. I will be heading home to Florida and will be starting treatment in my home town. Mike spoke with Dr. Castro in Titusville today and confirmed that he is ready to start treatment on Monday. He provided us his cell phone number if we ever need to get in touch with him directly.
I was so happy that my father, who is 86, made it down to Hershey, PA to see me before I left for Florida. It was a great visit. I have to thank Louie, my father’s son in law, for driving. Louie can make anyone laugh, so it was nice to have him here as well.
I have not felt much better than I did yesterday. I have been feeling like I have a flu that is not really there. I will have to take it as it comes.
In the morning we will start our trip back to Florida. To be continued…..
Wednesday, June 9, 2010
Yesterday was my 5th dose of Cladribine. Everything went well. My 3rd shot of Campath, 30mg which is what I will be getting going forward, was done in my belly. I think that is going to be a good site, since I don't have any pain from that shot.
My blood work results have dropped since I have started treatment.
6/1/10 6/7/10
WBC 21,800 10,700
Lymphocytes 19,900 9,800
Neutrophils 1,500 600
If my neutrophils go below 500 I will need to take additional medication and by body will not have the ability to fight off infection. The nurse told me going forward to be very careful with what I eat and what I do and to take precautions to prevent infection. Frequent hand washing is the number one remedy. The nurse told me to avoid tylenol as it will mask a fever, which is a sign I have an infection. If I get a fever of 99.5 I will need to call the doctor.
Yesterday was a big day for doctor communication. Mike spoke with Dr. Castro, who I see where I live, and filled in him. Dr. Castro is ready to take over my treatement on Monday when I return to Florida.
I have today off from treatment for my birthday, today I am 57.
My blood work results have dropped since I have started treatment.
6/1/10 6/7/10
WBC 21,800 10,700
Lymphocytes 19,900 9,800
Neutrophils 1,500 600
If my neutrophils go below 500 I will need to take additional medication and by body will not have the ability to fight off infection. The nurse told me going forward to be very careful with what I eat and what I do and to take precautions to prevent infection. Frequent hand washing is the number one remedy. The nurse told me to avoid tylenol as it will mask a fever, which is a sign I have an infection. If I get a fever of 99.5 I will need to call the doctor.
Yesterday was a big day for doctor communication. Mike spoke with Dr. Castro, who I see where I live, and filled in him. Dr. Castro is ready to take over my treatement on Monday when I return to Florida.
I have today off from treatment for my birthday, today I am 57.
Tuesday, June 8, 2010
The appointment yesterday went well. When I get back to Florida I will speak with the doctor about getting a port so I don’t have to get stuck all the time. If you are going to get Campath shots be prepared to be in pain. Both of my arms hurt from the Campath shots, it makes it difficult to sleep. If I roll over on my arms I have lots of pain. I can have the shot in other locations, but if it hurts in the arm, where else on my body do I want to hurt. I am dreading the dose I will get today since it is the maximum dose of 30mg. I don’t know how much worse the pain to get.
The Campath is a needle injection that takes a few seconds, unlike the Cladribine which is via IV drip and takes two hours.
The premeds were Zofran 8mg and Ativan 1mg. I received my fourth dose of Cladribine, 8mg. The IV took two hours.
Six vials of blood were taken for research; a seventh was taken for blood work.
Mike called Moffitt and was successful in obtaining a copy of the bone marrow biopsy results, which were faxed directly to Dr. Loughran’s coordinator. Mike also contacted Dr. Sokol’s nurse to try and facilitate the discussion of treatment in Florida. An e-mail was sent to me from Dr. Sokol’s office stating that contact has not made yet. The e-mail also had a note from Dr. Sokol that discussed the bone marrow results. “Bone marrow biopsy done at Moffitt Cancer Center confirmed diagnosis of T-PLL with normal cytogenetics. My treatment recommendation would be induction therapy with alemtuzumab followed by allogeneic stem cell transplantation”.
At this point the two doctors have different courses of treatment. Once they talk we believe that will be resolved.
I want to remind everyone that my disease was caught much earlier than the others that I have been in contact with that have T-PLL. Although this is my journey, I want to remind my friends and family that everyone’s journey is different. I am very lucky to have had no major side effects as opposed to the experience some of my new friends that have the same disease have been through. I call them my friends because they refer to people with T-PLL as an elite club with a terrible disease. Please feel free to click on the links to the right to read their stories.
Yesterday was Day 4 – Two months and 26 days and counting
The Campath is a needle injection that takes a few seconds, unlike the Cladribine which is via IV drip and takes two hours.
The premeds were Zofran 8mg and Ativan 1mg. I received my fourth dose of Cladribine, 8mg. The IV took two hours.
Six vials of blood were taken for research; a seventh was taken for blood work.
Mike called Moffitt and was successful in obtaining a copy of the bone marrow biopsy results, which were faxed directly to Dr. Loughran’s coordinator. Mike also contacted Dr. Sokol’s nurse to try and facilitate the discussion of treatment in Florida. An e-mail was sent to me from Dr. Sokol’s office stating that contact has not made yet. The e-mail also had a note from Dr. Sokol that discussed the bone marrow results. “Bone marrow biopsy done at Moffitt Cancer Center confirmed diagnosis of T-PLL with normal cytogenetics. My treatment recommendation would be induction therapy with alemtuzumab followed by allogeneic stem cell transplantation”.
At this point the two doctors have different courses of treatment. Once they talk we believe that will be resolved.
I want to remind everyone that my disease was caught much earlier than the others that I have been in contact with that have T-PLL. Although this is my journey, I want to remind my friends and family that everyone’s journey is different. I am very lucky to have had no major side effects as opposed to the experience some of my new friends that have the same disease have been through. I call them my friends because they refer to people with T-PLL as an elite club with a terrible disease. Please feel free to click on the links to the right to read their stories.
Yesterday was Day 4 – Two months and 26 days and counting
Sunday, June 6, 2010
Yesterday was another smooth day. The IV from Friday was still good so it did not need to be started again. I only received the 550ml of Saline with 8mg of Cladribine. I was only given the Zofran 8mg and Ativan 1mg before the infusion. Got back to the motor home and slept for an hour and a half. Before going to bed for the night I noticed that the spot where the Campath was given on day one was sore and pinkish in color. The rashes are just about gone. Can still see some traces.
Today I received my second shot of Campath, 10mg and my third dose of Cladribine 8mg via IV. I received the Zofran 8mg, Ativan 1mg, Tylenol 1000mg, and Benadryl 25mg. The Tylenol and Benadryl are only given on the days that I get Campath. The IV needle was removed today to prevent infection.
The nurses and doctors at the hospital are very nice. It helps that the staff is very thoughtful and compassionate. After three treatments I still feel good, with the exception of fatigue.
Today I had two visitors. Dr. Steve Karp who Mike went to High School and college with and my friend Jeff Manzutto, a long time friend from Florida.
We would like to extend a special thank you to Hannah and Nancy Cheney. They participated in the American Cancer Society - Relay for Life Friday night into Saturday morning. They walked for me, in addition to walking for others. Thank you for the luminary!!
Today I received my second shot of Campath, 10mg and my third dose of Cladribine 8mg via IV. I received the Zofran 8mg, Ativan 1mg, Tylenol 1000mg, and Benadryl 25mg. The Tylenol and Benadryl are only given on the days that I get Campath. The IV needle was removed today to prevent infection.
The nurses and doctors at the hospital are very nice. It helps that the staff is very thoughtful and compassionate. After three treatments I still feel good, with the exception of fatigue.
Today I had two visitors. Dr. Steve Karp who Mike went to High School and college with and my friend Jeff Manzutto, a long time friend from Florida.
We would like to extend a special thank you to Hannah and Nancy Cheney. They participated in the American Cancer Society - Relay for Life Friday night into Saturday morning. They walked for me, in addition to walking for others. Thank you for the luminary!!
Friday, June 4, 2010
We got to the hospital at 1:45pm for the 2:00pm appointment. The hospital does not order the meds until the patient arrives so they can avoid waste. Once the med’s were ready we were brought into the back. Since this was the first treatment we asked for a bed instead of an infusion chair. Dr. Epner’s coordinator stopped by to see us and gave Bill another prescription. Allopurinol 300mg tablet – once a day - to clean out the kidney’s from the waste produced by the chemo.
The nurse had two attempts in the right arm to start the IV. The second nurse came in and took two attempts on the left arm and finally had success. The IV drip was started with Saline only for the first 45 minutes. After the IV was started the following pills were given:
Tylenol 1000mg, Benadryl 25mg (for allergic reactions), Zofran 8mg (for nausea) and Ativan 1mg (nausea and nerves)
Before the Cladribine is administered two nurses must verify the dosing for safety. At 5:00pm the Cladribine was started. 8mg of Caldribine, 550ml of NaCl 0.9% (Saline). 279ml/hr. The drip took two hours. Bill slept for about an hour and 15 minutes during the two hour treatment. The Saline only drip was administered for 15 minutes after the Cladribine was done. The Campath shot was last to be received. Campath is 3mg today. The second dose on Sunday will be 10mg. The third dose on Tuesday will be 30mg.
The IV port was wrapped and left in for the next treatment tomorrow.
The nurse gave us several pamphlets:
Nutrition for the person with Cancer during treatment – American Cancer Society
Sexuality for the man with Cancer – American Cancer Society
Understanding Chemotherapy – American Cancer Society
Chemotherapy and you – US Dept of Health and Human Services – National Institutes of Health
Patient drug Information – Campath (Alemtuzumab)
Patient drug Information - Caldribine
he nurse also went over some precautions such as:
No flossing – May cause bleeding
No asprin – thins the blood
No razor (electric shaver) may cause bleeding
Avoid bumping into things, easily bruise
May experience dry mouth
Avoid buffets due to contamination
We stopped at the pharmacy to fill the new prescription and pick up some food. Went back to the campground and had dinner. Bill said “today was a piece of cake”. We hope the rest of the treatment is as smooth.
I believe it all started in 2006 while I was working as a self employed carpenter. Around that time I became more and more fatigued until it came to the point that my fatigue was so severe I had to consider doing less work. Along with the fatigue I started to lose my short term memory and went into a depression progressively as I was forced to slow down my business and eventually stop.
I was starting to lose my dignity because something was wrong and I could not figure it out. Working and being productive in the community is an important aspect of my life. Suddenly that was taken away from me against my will. Before all of this happened, I had a normal life and thought I was a healthy person.
From 2006 through the middle of 2009 I visited the doctor for various reasons such as: annual check-ups, sinus infections, allergies, etc… and each time a blood test was performed. Although the WBC was high, each doctor viewed it as a result of the reason for my visit. Several times I obtained my blood work results and noticed my WBC was higher each time. I was not sick and I had no symptoms. Something was not right. I believe this is the time frame that my disease T-PLL started to develop.
If there is one thing I can recommend to everyone that reads this blog, it would be to obtain a print out of your Complete Blood Count (CBC) results with differentials every time you have a blood test. You have to be your own doctor as trends can be unnoticed by the physician. One of my blood test results had a note on the bottom alerting the doctor to abnormal results, this was never addressed.
As a result of the Leukemia diagnosis I have gone back to the local hospital where my blood has been tested for the last four years and requested copies of all my CBC’s with the differentials. The differentials are important to show the components of the WBC, specifically the Lymphocytes and the Neutrophils. Depending on the lab you go to the normal ranges can vary slightly. From my experience normal ranges are as follows:
WBC 4.8 – 10.8 (in thousands) 4,800 – 10,800
Neutrophils 1.7 – 7.7 1,700 – 7,700
Lymphocytes 1.2 – 4.9 1,200 - 4,900
With the help of Mike, my partner for 15 years, we graphed out all of the WBC differentials to see if we could identify when the disease first started. In August 2006 my WBC was 8.0 and Lymphocytes were 4.2, just at the end of the normal range. From this point forward the levels continued to climb and never came back down to normal.
I have included table 1A which shows my blood level trend for WBC and Lymphocytes
In August 2009 I went back to my primary care physician where I previously lived before I moved to Titusville. He took one look at my most recent blood work and told me I needed to see a hematologist. My WBC was 14.9 and my lymphocytes were 13.0. As of June 1, 2010 my WBC is 21.8 and my lymphocytes are 19.9 the highest they have been since I started tracking.
I went to the local cancer center where additional blood work was performed and a bone marrow biopsy was scheduled. My initial diagnosis was Chronic Lymphocytic Leukemia (CLL), a disease that can be lived with for many years without treatment. The doctors monitor it with watch and wait by taking blood tests every three months. After the bone marrow biopsy the diagnosis was changed to Large Granular Lymphocytic Leukemia (LGL)
As defined by Memorial Sloan-Kettering Cancer Center:
LGL Leukemia
Large granular lymphocytic (LGL) leukemia is a chronic leukemia of T lymphocytes -- white blood cells that originate in the lymph system and in the bone marrow, and that help fight infection. Rarely, LGL leukemia is a disease of natural killer cells, which are lymphocytes that normally attack tumor cells. The disease usually affects people in their sixties. Symptoms include anemia, low levels of platelets and infection-fighting neutrophils in the blood (conditions called, respectively, thrombocytopenia and neutropenia), and an enlarged spleen. Doctors diagnose this disease through a biopsy of the bone marrow, or by using flow cytometric analysis of the circulating blood or bone marrow cells, a procedure in which various types of blood or bone marrow cells are separated, identified, and counted. Treatment usually involves chemotherapy, sometimes granulocyte-colony stimulating factor (G-CSF), and possibly surgery to remove the spleen. A closely related T-lymphocyte disorder is called T gamma disease; it is essentially the same as LGL leukemia.
At this point I was referred to Dr. Sokol at Moffitt Cancer Center in Tampa, FL, since LGL is a rare form of leukemia. In October of 2009 I visited Moffitt and 23 vials of blood were taken. Seven of the twenty three were taken to be used for research on LGL at Moffitt. At this point I was doing research on the internet every day to find information on LGL so I could get educated. In my search I found a doctor in Hershey, PA, Dr. Loughran, who seemed to be the expert on LGL Leukemia. Dr. Loughran and Dr. Sokol previously worked together. Both had written extensively on LGL. I contacted Dr. Loughran and he told me about a study he was doing on LGL and referred me to the research coordinator. A month later I had blood drawn for the study in Penn State Hershey – Milton S. Hershey Medical Center.
One of the tests done at Moffitt from the 23 vials was a flow cytometry report. As written in Wikipedia “Flow cytometry (abbreviated: FCM) is a technique for counting and examining microscopic particles, such as cells and chromosomes, by suspending them in a stream of fluid and passing them by an electronic detection apparatus. It allows simultaneous multiparametric analysis of the physical and/or chemical characteristics of up to thousands of particles per second. Flow cytometry is routinely used in the diagnosis of health disorders, especially blood cancers”
My Flow Cytometry report came back with a comment of “There is a marked increase in abnormal CD4 positive T cells expressing weaker than normal CD4, suggestive of a T Cell chronic lymphoproliferative disorder”. During my April 2010 appointment at Moffitt I was told that I had both LGL and T-Cell Prolymphocytic Leukemia (TPLL). Now my head really began to spin. LGL is rare, TPLL is extremely rare. I asked the doctor what the time frame was and he said 2 to 3 years, WOW!!! Looking at my blood work trending I calculate that I have had TPLL for at least three years, maybe longer. Time became a commodity.
After the dual diagnosis I had so many questions I scheduled a follow up with Dr. Sokol at Moffitt for May 24th 2010, which is when the latest blood work and Flow Cytometry was to be available.
According to Wikipedia:
"T-cell-prolymphocytic leukemia (T-PLL) is a mature T-cell leukemia with aggressive behavior and predilection for blood, bone marrow, lymph nodes, liver, spleen, and skin involvement. T-PLL is a very rare leukemia, primarily affecting adults over the age of 30. It represents 2% of all small lymphocytic leukemias in adults. Other names include T-cell chronic lymphocytic leukemia, "knobby" type of T-cell leukemia, and T-prolymphocytic leukemia/T-cell lymphocytic leukemia."
As I desperately searched the internet for anything on TPLL I found several blogs that gave me hope. These blogs are written by individuals and their significant others, to document their journey with TPLL. (Dennis Pyritz, Mark Vancura, Shirley Fischer, I hope I didn’t leave anyone out). These individuals are the inspiration for me writing my blog. They are leaving a trail for people like me to have hope, I want to make a difference for those who are diagnosed after me.
Here are links to their blogs, I encourage you to visit them to get educated on the disease and to read their story.
http://diaryofanillness.com/
http://beingcancer.net/about-t-pll/
http://tpllsupportnet.blogspot.com/
http://curingvancura.blogspot.com/
http://www.cancercompass.com/
The May 24th visit revealed, via Flow Cytometry, that I only had one disease and it was TPLL. Most of the literature I found stated that TPLL had a mean life expectancy of 7 months after diagnosis. After reading the blogs it was clear to me that getting treatment was something that needed to happen sooner than later. My doctor at Moffitt ordered another bone marrow to be resulted at Moffitt. Pending the results and confirmation of TPLL, the slides would be sent to National Institute of Health (NIH) for a second look. Then he would start treatment with Campath, a bio-therapy drug.
During these last few weeks, Dr. Sokol at Moffitt was in communication with Dr. Loughran in Hershey, PA discussing my case. On May 26th I was contacted by Dr. Loughran’s coordinator Hershey, PA, Dr. Loughran wanted me to see a colleague of his that has treated several cases of TPLL. He believed I should start treatment immediately. At this point things started to move very quickly. By the end of the week I had an appointment with Dr. Epner in Hershey, PA for June 3rd.
Friday May 28th Mike and I left for a trip to Long Island, NY in our motorhome to visit both my family and Mike’s. The plan was for me to stay in New York and spend time with family until June 2nd and then travel with the motorhome to Hershey, PA for the appointment. Mike was going to fly back to Florida on Memorial Day, work Tuesday and Wednesday and then meet me in Hershey, PA on June 3rd. During the ride to NY I experience pain in my stomach, especially after I ate something. I assumed it was the spleen. I also noticed some bumps on my arms. I was having trouble sitting up for long periods of time so Mike had to do most of the driving. Everyone that knows me will agree that I love to drive, especially the motorhome, and I never turn down the opportunity to drive.
We arrived in NY at Mike’s father’s house at 4:00am on Saturday May 29th. Just after parking we noticed large bumps on both of my arms. We had never seen bumps like these so we called Moffitt to see if we needed to get to the emergency room. One of the symptoms that occurs with TPLL are rashes. The attending on call told us that she believed it could wait until our appointment June 3rd.
Picture of rashes
We really enjoyed spending time with both families however, Sunday the bumps broke and turned into rashes. This became more concerning so we made the decision to drive to Hershey, PA Sunday afternoon in hopes of seeing someone on Monday. I wanted to be close to the hospital that would be able to treat me with this rare disease if things got worse. Monday being Memorial Day, it was not a good day to be seen as most of the hospital was off. We didn’t want to go to the emergency room since very few doctors have heard of TPLL. We walked around the hospital to get familiar with where to go and decided to wait until Tuesday morning to call the doctor. Mike canceled his flight and called his boss to let him know what was happening. We are staying at the Hershey High Meadow Campground, which is 1.5 miles from the hospital. The campground has wireless internet which allows Mike to work when we are not at appointments.
Tuesday morning we called Dr. Epner’s coordinator and explained what we had experience over the week-end and asked if Dr. Epner would like to see me at the hospital.
Several hours later we received a call telling us an order was placed for blood work, and Dr. Epner would see us after the results were received. We went in and Dr. Epner examined the rashes and felt my spleen and said it was necessary to reduce the size of the spleen to normal. He felt that treatment should start right way.
On Wednesday I had another examination and was scheduled to start treatment on Friday June 4, 2010. Dr. Epner is using two drugs to treat my disease. Campath and Cladribine. The Campath will be administered via injection three times a week for three months. The Cladribine will be administered via IV for five consecutive days, once a month for three months.
Tomorrow I get my first dose of Cladribine by IV which should take approximately 2 – 3 hours. I will also get my first dose of Campath.
My schedule for the first five days is:
Friday 6/4/10 – 2:00pm – Campath and Cladribine
Saturday 6/5/10 – 2:00pm – Caldribine
Sunday 6/6/10 – 8:30am – Campath and Cladribine
Monday 6/7/10 – 10:00am – Caldrine
Tuesday 6/8/10 – 4:00pm – Campath and Cladribine
In addition to the treatment I have been prescribed several drugs to avoid infection:
Bactrim – Friday and Tuesdays – 1 tablet twice a day to prevent infection
Acyclovir 800mg – 1 tablet once a day to prevent herpes viruses
If my Neutrophils go below 500 I will need to take the following in addition to the medications above:
Cipro 500mg – 1 tablet twice a day to fight infection
Fluconazole 200mg – 1 tablet once a day – antifungal to fight thrush
I was starting to lose my dignity because something was wrong and I could not figure it out. Working and being productive in the community is an important aspect of my life. Suddenly that was taken away from me against my will. Before all of this happened, I had a normal life and thought I was a healthy person.
From 2006 through the middle of 2009 I visited the doctor for various reasons such as: annual check-ups, sinus infections, allergies, etc… and each time a blood test was performed. Although the WBC was high, each doctor viewed it as a result of the reason for my visit. Several times I obtained my blood work results and noticed my WBC was higher each time. I was not sick and I had no symptoms. Something was not right. I believe this is the time frame that my disease T-PLL started to develop.
If there is one thing I can recommend to everyone that reads this blog, it would be to obtain a print out of your Complete Blood Count (CBC) results with differentials every time you have a blood test. You have to be your own doctor as trends can be unnoticed by the physician. One of my blood test results had a note on the bottom alerting the doctor to abnormal results, this was never addressed.
As a result of the Leukemia diagnosis I have gone back to the local hospital where my blood has been tested for the last four years and requested copies of all my CBC’s with the differentials. The differentials are important to show the components of the WBC, specifically the Lymphocytes and the Neutrophils. Depending on the lab you go to the normal ranges can vary slightly. From my experience normal ranges are as follows:
WBC 4.8 – 10.8 (in thousands) 4,800 – 10,800
Neutrophils 1.7 – 7.7 1,700 – 7,700
Lymphocytes 1.2 – 4.9 1,200 - 4,900
With the help of Mike, my partner for 15 years, we graphed out all of the WBC differentials to see if we could identify when the disease first started. In August 2006 my WBC was 8.0 and Lymphocytes were 4.2, just at the end of the normal range. From this point forward the levels continued to climb and never came back down to normal.
I have included table 1A which shows my blood level trend for WBC and Lymphocytes
In August 2009 I went back to my primary care physician where I previously lived before I moved to Titusville. He took one look at my most recent blood work and told me I needed to see a hematologist. My WBC was 14.9 and my lymphocytes were 13.0. As of June 1, 2010 my WBC is 21.8 and my lymphocytes are 19.9 the highest they have been since I started tracking.
I went to the local cancer center where additional blood work was performed and a bone marrow biopsy was scheduled. My initial diagnosis was Chronic Lymphocytic Leukemia (CLL), a disease that can be lived with for many years without treatment. The doctors monitor it with watch and wait by taking blood tests every three months. After the bone marrow biopsy the diagnosis was changed to Large Granular Lymphocytic Leukemia (LGL)
As defined by Memorial Sloan-Kettering Cancer Center:
LGL Leukemia
Large granular lymphocytic (LGL) leukemia is a chronic leukemia of T lymphocytes -- white blood cells that originate in the lymph system and in the bone marrow, and that help fight infection. Rarely, LGL leukemia is a disease of natural killer cells, which are lymphocytes that normally attack tumor cells. The disease usually affects people in their sixties. Symptoms include anemia, low levels of platelets and infection-fighting neutrophils in the blood (conditions called, respectively, thrombocytopenia and neutropenia), and an enlarged spleen. Doctors diagnose this disease through a biopsy of the bone marrow, or by using flow cytometric analysis of the circulating blood or bone marrow cells, a procedure in which various types of blood or bone marrow cells are separated, identified, and counted. Treatment usually involves chemotherapy, sometimes granulocyte-colony stimulating factor (G-CSF), and possibly surgery to remove the spleen. A closely related T-lymphocyte disorder is called T gamma disease; it is essentially the same as LGL leukemia.
At this point I was referred to Dr. Sokol at Moffitt Cancer Center in Tampa, FL, since LGL is a rare form of leukemia. In October of 2009 I visited Moffitt and 23 vials of blood were taken. Seven of the twenty three were taken to be used for research on LGL at Moffitt. At this point I was doing research on the internet every day to find information on LGL so I could get educated. In my search I found a doctor in Hershey, PA, Dr. Loughran, who seemed to be the expert on LGL Leukemia. Dr. Loughran and Dr. Sokol previously worked together. Both had written extensively on LGL. I contacted Dr. Loughran and he told me about a study he was doing on LGL and referred me to the research coordinator. A month later I had blood drawn for the study in Penn State Hershey – Milton S. Hershey Medical Center.
One of the tests done at Moffitt from the 23 vials was a flow cytometry report. As written in Wikipedia “Flow cytometry (abbreviated: FCM) is a technique for counting and examining microscopic particles, such as cells and chromosomes, by suspending them in a stream of fluid and passing them by an electronic detection apparatus. It allows simultaneous multiparametric analysis of the physical and/or chemical characteristics of up to thousands of particles per second. Flow cytometry is routinely used in the diagnosis of health disorders, especially blood cancers”
My Flow Cytometry report came back with a comment of “There is a marked increase in abnormal CD4 positive T cells expressing weaker than normal CD4, suggestive of a T Cell chronic lymphoproliferative disorder”. During my April 2010 appointment at Moffitt I was told that I had both LGL and T-Cell Prolymphocytic Leukemia (TPLL). Now my head really began to spin. LGL is rare, TPLL is extremely rare. I asked the doctor what the time frame was and he said 2 to 3 years, WOW!!! Looking at my blood work trending I calculate that I have had TPLL for at least three years, maybe longer. Time became a commodity.
After the dual diagnosis I had so many questions I scheduled a follow up with Dr. Sokol at Moffitt for May 24th 2010, which is when the latest blood work and Flow Cytometry was to be available.
According to Wikipedia:
"T-cell-prolymphocytic leukemia (T-PLL) is a mature T-cell leukemia with aggressive behavior and predilection for blood, bone marrow, lymph nodes, liver, spleen, and skin involvement. T-PLL is a very rare leukemia, primarily affecting adults over the age of 30. It represents 2% of all small lymphocytic leukemias in adults. Other names include T-cell chronic lymphocytic leukemia, "knobby" type of T-cell leukemia, and T-prolymphocytic leukemia/T-cell lymphocytic leukemia."
As I desperately searched the internet for anything on TPLL I found several blogs that gave me hope. These blogs are written by individuals and their significant others, to document their journey with TPLL. (Dennis Pyritz, Mark Vancura, Shirley Fischer, I hope I didn’t leave anyone out). These individuals are the inspiration for me writing my blog. They are leaving a trail for people like me to have hope, I want to make a difference for those who are diagnosed after me.
Here are links to their blogs, I encourage you to visit them to get educated on the disease and to read their story.
http://diaryofanillness.com/
http://beingcancer.net/about-t-pll/
http://tpllsupportnet.blogspot.com/
http://curingvancura.blogspot.com/
http://www.cancercompass.com/
The May 24th visit revealed, via Flow Cytometry, that I only had one disease and it was TPLL. Most of the literature I found stated that TPLL had a mean life expectancy of 7 months after diagnosis. After reading the blogs it was clear to me that getting treatment was something that needed to happen sooner than later. My doctor at Moffitt ordered another bone marrow to be resulted at Moffitt. Pending the results and confirmation of TPLL, the slides would be sent to National Institute of Health (NIH) for a second look. Then he would start treatment with Campath, a bio-therapy drug.
During these last few weeks, Dr. Sokol at Moffitt was in communication with Dr. Loughran in Hershey, PA discussing my case. On May 26th I was contacted by Dr. Loughran’s coordinator Hershey, PA, Dr. Loughran wanted me to see a colleague of his that has treated several cases of TPLL. He believed I should start treatment immediately. At this point things started to move very quickly. By the end of the week I had an appointment with Dr. Epner in Hershey, PA for June 3rd.
Friday May 28th Mike and I left for a trip to Long Island, NY in our motorhome to visit both my family and Mike’s. The plan was for me to stay in New York and spend time with family until June 2nd and then travel with the motorhome to Hershey, PA for the appointment. Mike was going to fly back to Florida on Memorial Day, work Tuesday and Wednesday and then meet me in Hershey, PA on June 3rd. During the ride to NY I experience pain in my stomach, especially after I ate something. I assumed it was the spleen. I also noticed some bumps on my arms. I was having trouble sitting up for long periods of time so Mike had to do most of the driving. Everyone that knows me will agree that I love to drive, especially the motorhome, and I never turn down the opportunity to drive.
We arrived in NY at Mike’s father’s house at 4:00am on Saturday May 29th. Just after parking we noticed large bumps on both of my arms. We had never seen bumps like these so we called Moffitt to see if we needed to get to the emergency room. One of the symptoms that occurs with TPLL are rashes. The attending on call told us that she believed it could wait until our appointment June 3rd.
Picture of rashes
We really enjoyed spending time with both families however, Sunday the bumps broke and turned into rashes. This became more concerning so we made the decision to drive to Hershey, PA Sunday afternoon in hopes of seeing someone on Monday. I wanted to be close to the hospital that would be able to treat me with this rare disease if things got worse. Monday being Memorial Day, it was not a good day to be seen as most of the hospital was off. We didn’t want to go to the emergency room since very few doctors have heard of TPLL. We walked around the hospital to get familiar with where to go and decided to wait until Tuesday morning to call the doctor. Mike canceled his flight and called his boss to let him know what was happening. We are staying at the Hershey High Meadow Campground, which is 1.5 miles from the hospital. The campground has wireless internet which allows Mike to work when we are not at appointments.
Tuesday morning we called Dr. Epner’s coordinator and explained what we had experience over the week-end and asked if Dr. Epner would like to see me at the hospital.
Several hours later we received a call telling us an order was placed for blood work, and Dr. Epner would see us after the results were received. We went in and Dr. Epner examined the rashes and felt my spleen and said it was necessary to reduce the size of the spleen to normal. He felt that treatment should start right way.
On Wednesday I had another examination and was scheduled to start treatment on Friday June 4, 2010. Dr. Epner is using two drugs to treat my disease. Campath and Cladribine. The Campath will be administered via injection three times a week for three months. The Cladribine will be administered via IV for five consecutive days, once a month for three months.
Tomorrow I get my first dose of Cladribine by IV which should take approximately 2 – 3 hours. I will also get my first dose of Campath.
My schedule for the first five days is:
Friday 6/4/10 – 2:00pm – Campath and Cladribine
Saturday 6/5/10 – 2:00pm – Caldribine
Sunday 6/6/10 – 8:30am – Campath and Cladribine
Monday 6/7/10 – 10:00am – Caldrine
Tuesday 6/8/10 – 4:00pm – Campath and Cladribine
In addition to the treatment I have been prescribed several drugs to avoid infection:
Bactrim – Friday and Tuesdays – 1 tablet twice a day to prevent infection
Acyclovir 800mg – 1 tablet once a day to prevent herpes viruses
If my Neutrophils go below 500 I will need to take the following in addition to the medications above:
Cipro 500mg – 1 tablet twice a day to fight infection
Fluconazole 200mg – 1 tablet once a day – antifungal to fight thrush
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