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.