Post #35
Another ride on the roller coaster - hold on for a small drop

In Bill's words "I got ripped off this week, no chemo treatment". The blood count is too low to continue treatment this week. The WBC is 1.0, which is the lowest we have seen since treatment started. The Dr. wants to give Bill's system a rest to bounce back on it's own, prior to starting up with both Campath and Cladribine on Monday, September 6th.

Tomorrow Bill will have a mid week blood test to see if the numbers are moving in the right direction.

Now that we have a donor, the next step is for Dr. Ayala, the transplant Dr., to review the slides from the most recent biopsy to see if we can get the show on the road. If he concurs, there is a chance that Bill will not need to have another biopsy done before the transplant.

Speaking of donor's, here is a picture of Bill's brother Ed

Last week when the infusion center team found out that Bill had two perfect matches they took the time to put up congratulation signs and they gave him a card and flowers. They were all so happy for Bill. Although we don't like the disease Bill has or the treatment he is going through, the people that he deals with at the infusion center care about him and treat him as a friend. In Bill's words "Besides my family and my friends, they are also my rock"

Post # 34
Today is a great day!!!!!!

At 4:00pm today we received the news that two of Bill's siblings (Edward and Lucille) are 100% (10 out of 10) matches for Bill's bone marrow. That is the best news that we have received in the last 11 months. Dr. Ayala (bone marrow transplant doctor) has indicated that he prefers to have Edward since he is a male. Although Lucille is a perfect match, there is a slight increased chance of side effects due to her having had a baby. The great news is, we have a primary and a back up donor.

Ed will need to be in Tampa for 12 to 14 days. The first several days will be testing on Ed to make sure everything is in order with his vital organs, blood work, etc.... Once everything comes back good, the next step is to start Bill on preparative regimen (Chemo). At that same time they will start the process to harvest Ed's stem cell's through peripheral blood.

We also received the bone marrow biopsy results today by phone from Dr. Castro. The markers that were present in the first and second bone marrow biopsies indicating the presence of the disease are no longer present. The molecular analysis (T-cell rearrangement) shows two suspicious items that are to small to identify. Dr. Castro believes this is a great report. More good news today!!

The next step is to share the report with Dr. Ayala at Moffitt and Dr. Epner at Hershey. They will confer to determine how to proceed.

Wednesday Bill will receive his next scheduled injection of Campath. Treatment will continue until further notice.

Sharing some family photos:

Mike and Bill

Bill and his sister Lucille

Mary Ann (friend), Mike, Bill, Margy (sister) and Assunta (sister in law)

Mike's nieces and nephews: Stephan, Ryan, Alex, Sarah, Hannah, Sean, Samantha

Bill's son - Billy, grandson - Anthony and father - Papa Sam

Bill's daughter - Marie

Bill's Grandson's - Adrian and Alex

Post #33

Two weeks to go to hit 3 months of treatment

Yesterday was a good day. Bill was feeling good and had lots of energy.

Bill went to the infusion center for his Campath injection. His blood work shows that the Neupogen did its job. His WBC is now up to 7.6, which is in the normal range. His Neutrophil is 7.1, which is at the high end of normal. The great blood results does not change how Bill goes through his day because we have learned that the Neutrophil count can change quickly. It is not worth the risk to change his eating habits (Neutropenic diet) only to find out the next week that the levels have dropped. At the end of the month, which is only two weeks away, Bill will hit the three month mark. We were always told that he would have Campath for three months. We did confirm that if the biopsy results come back with Bill in remission, he would still need to get the injections until he receives the transplant.

After the injection we had an appointment with Dr. Castro. The Dr. thought we would have preliminary results from the bone marrow biopsy on Monday. That did not happen, however he did say he should have them Wednesday and via phone he would let us know the results. The preliminary results will show if there are any signs of the disease. The final results which will take a few weeks will check the T-cell arrangement and show if Bill is in molecular remission.

Tomorrow is the PET/CT scan at the hospital where I work. The purpose of the exam is to measure the spleen to determine if the size is back to normal. These are things that need to to be checked before the transplant.

On Sunday Bill and I downloaded Skype and had our first video conference with his son William (Billy). The installation process was very easy and we were up and running within a few minutes. The program is very easy to use. We have installed it on my lap top so we can bring it with us where ever we are. It is so nice to know that we will be able to see our friends and family during the next 12 to 15 months via video, especially during the three months that we will be in Tampa, FL. In the next few weeks we would like to test Skyping with any of our friends and family that have a camera and microphone on their computer. Our Skype name is Michael.Sitowitz

Post #32
Last week was a busy week

Last week was busy for treatment. Bill had seven injections of Neupogen, three Campath injections and a bone marrow biopsy. Before the Neupogen shots started, Bill's WBC was down to 1.0. Today before the Campath injection his blood will be checked and we will know how the Neupogen helped. I cannot believe we are in the third month of treatment already.

The bone marrow biopsy went well on Thursday. In the next two weeks we will be getting the results of the HLA testing of the siblings and Bill's bone marrow test. We are praying for good news.

All in all, with the exception of some minor side effects from the Neupogen, Bill has been feeling well. For the next week or so I will be posting one a week, unless something interesting comes up. As we progress towards transplant the posting will become more frequent.

Thanks for your comments and concerns and well wishes, they are much appreciated. Please do keep the comments coming!!!

Post #31
Today is the bone marrow biopsy

Today Bill will have his third bone marrow biopsy. This one is important as it will determine if Bill has achieved remission. Bill's sister Margy will be bringing him to the procedure and staying with him. The PET/CT were delayed and have been re-scheduled for next week.

My sister Nancy and her family were in from Windsor, CT and visited through out the week-end. We had a nice time with them.

Bill completed the five days of Cladribine with no problems. Monday when his blood work was checked his levels were very low, which is to be expected. He is getting the Neupogen shots again to boost his white cells for seven days. He started on Monday and will finish this coming Sunday.


We are one week post sibling kits being returned for HLA testing, we are anxious for the results, but it will be at lease another week, most likely two.

Error correction: In post #30, I stated that the bone marrow transplant was to be performed at my hospital. That was an incorrect statement. It should have read, the bone marrow biopsy will be performed at my hospital. This has been corrected in post #30. The bone marrow transplant can only be done at a transplant center. We are planning the transplant at Moffitt in Tampa, FL. I do apologize for any confusion it has created. Thanks to Marty for pointing this out.

Post # 30

Several tests to be performed

Monday we went to Dr. Castro to get a check on Bill's status. Several vials of blood were taken to test more than just his CBC. We did see a response to the Neupogen, nothing like the first round.

2.59 WBC

2.00 Neutrophils - Just enough to fight infection

0.22 Lymphocytes

We received an update on the second opinion for the bone marrow biopsy and it was not what we were expecting. The slides were not sent to NIH in Bethesda, MD. We requested that Dr. Castro call the lab at Moffitt and tell them the patient has requested the slides to be sent for the second opinion. We are hoping that will do the trick. It is very important to me that the second opinion is received to have piece of mind with the diagnosis.

Bill has been scheduled for a round of testing to determine if he has achieved remission.

8/10/10 - A PET/CT scan will be performed to determine the exact size of the spleen.

8/12/10 - The third bone marrow biospy will be performed - Bill's sister Margy will be the caregiver for the day. Help that is greatly appreciated.

8/16/10 - Follow up visit with Dr. Castro

The bone marrow biopy will be performed at Parrish Medical Center in Titusville, FL which is where I work. This is great news as we will not need to travel to Moffitt in Tampa. Since we are at least a month or two out from a possible date for the bone marrow transplant, it is not critical that we go to Moffitt this time. We were informed that just prior to the transplant Bill will need to have another biopsy done (#4), that one will need to be performed at Moffitt.

As of today all kits that were sent out to the siblings have been returned to Moffitt. They should have the last one by 10:00am tomorrow. In the afternoon we will call to confirm receipt.

This week is the IV drip, with Cladribine, every day Monday through Friday. As of today the count is as follows:

25 Campath injections

12 Cladribine - IV treatments

15 Neupogen Injections

24 Blood Draws
Neulasta

Pictures of Bill with the staff at the infusion center.

Bill with Janine

Bill with Ollie

Bill with Sylvia