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

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.

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.

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.

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.