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.

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.

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.

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!!! :)

Bill with his new toy, I mean ipad

For those that are wondering what I look like, here is a picture of me (Mike).

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.

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.

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.

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.

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.