Dad is having a SCT atthe Hutch

[KWJ]

My dad is leaving in 2 weeks to the Hutch for a mini SCT. It is a new protocol done at the Hutch only. His brother Tommy is coming out from Florida to be his donor.

His counts are still in the toilet after his attempts as dacogen. His WBC is at 1000 and his platelets hover around 0, he has to be transfused with those every 3-4 days, reds once a week. It seems that he always low on something so he feels pretty crummy.

He feels that this is his only shot. I am pretty much terrified!

They will be in Seattle until April. Here is overview of the protocol.

131-I Radiolabeled Antibody Therapy
Fred Hutchinson Cancer Research Center
Protocol 1432

This letter will give you information about radiolabeled antibody therapy. We are combining targeted radiation therapy with a non-ablative transplant. You will be scheduled to meet with John Pagel, MD, PhD and Wendy Wilson, RN, OCN to explain the protocol and answer your questions. This letter briefly describes what your schedule will be if you choose to go on this protocol. We will go over this more in detail when we meet with you.

What is the BC8 (anti-CD45) Antibody?
The antibody is a protein that is developed in the Fred Hutchinson’s lab. It attaches to another protein called CD45 that is present on the surface of the white blood cells in your body as well as most leukemia cells. When this antibody is infused through your Hickman catheter it immediately recognizes and attached to these cells in your body.

What is HAMA?
The BC8 antibody is created using a mouse antibody. HAMA stands for Human Anti-murine (mouse) Antibody. Your body will eventually make antibodies against this antibody because it is different than your natural antibodies. For this reason we must check to be sure you have not done so before each dose, Dosimetry and Therapy. It is unlikely, but if you become HAMA positive the treatment will not work for you and you will be removed from this protocol.

What is 131-I?
131-I is a form of radioactive iodine that can be attached to the BC8 antibody. This is called labeling. The radiolabeled antibody is then infused into your Hickman catheter and the antibody delivers the 131-I to the white blood cells. Most of the body’s white blood cells are in the bone marrow, spleen and liver. These are the sites that we would like to target your therapy.

Why am I taking Iodine drops?
Your thyroid is a large gland that is responsible for producing and secreting important hormones that regulate various things such as metabolism. The gland uses iodine to function and therefore attracts it. Radiation to the thyroid can result in a condition known as hypothyroidism. Because our treatment has radiolabeled iodine we attempt to trick the thyroid by saturating it with non-radioactive iodine before infusing the 131-I.
If you develop Hypothyroidism it is easily treated by a small inexpensive pill that is taken daily for the rest of your life.

What is the Dosimetry Dose?
The Dosimetry Dose, also known as Biodistribution Test Dose, is used to determine how the radiolabeled antibody is distributed throughout your body.

You will receive the full dose of antibody with a trace amount of radiation (131-I). This will be done at the University Of Washington Medical Center (UWMC) in the GCRC department. You will not be radioactive after this infusion. The test dose is administered slowly over 5-7 hours. It is common to have some mild reactions to the antibody. These include symptoms of nausea, fever, chills, low blood pressure, headache, muscle pain, joint pain, or tightness in chest. You will be closely monitored by you research nurse throughout the infusion. You will also receive several medications prior to the infusion to reduce the chances of having a reaction. If you do have a reaction your nurse will give you the appropriate medications to help you feel more comfortable. Because this is an all day infusion and you may feel very tired afterwards you must have someone to accompany you home. They are welcome to stay throughout the infusion and keep you company.

It is recommended that you eat a nice breakfast before and bring some reading material, or maybe a DVD to watch. Lunch will be provided for you.
What are Gamma Scans?

To determine the optimal dose for you we will take pictures to identify how well the antibody has distributed throughout your body. These pictures are called Gamma Scans. We will take pictures at the UWMC before your Dosimetry Dose, immediately following and again once everyday over the following three days. The images accurately measure the radioactivity within your body. This information is used in combination with your organ volumes, which have been obtained through a CT scan, to accurately determine the highest, safest dose we can give you in hopes of eliminating your disease.

Therapy Infusion, What to Expect?
Assuming you HAMA remains negative you will be admitted to the UWMC for your treatment dose and a 5-7 day stay in radiation isolation. The Therapy Dose is the same amount of antibody you received during you Dosimetry infusion, however, it has the individually calculated amount of 131-I attached to it.

Radiation Isolation takes place in lead lined room, this room will look and feel just like any other room in the hospital. The room has a TV, a window looking out over the canal, a telephone, a private bathroom, shower and sink. The door to the room can stay open and you may have visitors speak to you from the hallway. The medical staff will only come into your room if necessary. You will be given completely safe competent care.
To reduce unnecessary exposure to the hospital nursing staff you will be responsible for taking your vital signs, changing you Hickman dressing, and drawing your own blood. You will be taught how to do this and asked to do so when they are needed. Practice doing your own Hickman dressing changes the week prior to admission. If you have questions ask your team nurse they can assist you or schedule a class for you so you will feel comfortable by the time you are admitted.
The radiation will partly excrete through your skin in your sweat; this means anything you touch will become somewhat radioactive (contaminated). For this reason you must be careful what you bring into the room with you. You may cover items such as your laptop, in plastic to protect them or wear plastic gloves when operating them. “Unless protected, what goes in the room stays in the room”. Plan to wear hospital clothing during your stay to avoid contaminating your own. Bring small supplies of the toiletries you will need. Bring a box of Ziploc bags to store food items you cannot finish (this will reduce smells in your room). We will talk more about all of this prior to your admission. Nuclear Medicine will visit you daily and measure your radioactivity. You will be discharged from radiation isolation when you are 7mR/m/hr or less. You will then return to the care of the SCCA outpatient department for your stem cell transplant coordination.

[willie]

KWJ Your dad couldn’t be at a better place. Did they tell you how long the overall stay at the SCCA will be? I know it is hard but try to get a second caregiver to help. You do not appear to be far away but when you are housed in a condo by yourself all the distances seem far. Good luck to him. Willie

[Russ]

KWJ, A very complex procedure. Thanks for the detailed description. Prayers that all will work well for your Dad.

[katiebear]

KWJ, my dad is going to Sloan on the 19th of this month for a mini transplant. I am also very fearful. They are going to use a combination of three chemo drugs that have never been used before. His doctor seems pretty confident, but we are all still terrified. I will keep you and your dad in my prayers. Good luck to you.

Katie

[Kathy7964]

K–my prayers are with you and your family. Keep me posted on how he doing.

Hope all goes well for him.

Kathy

[Jimbob]

KWJ,
Since OHSU would not accept yor dad, he couldn’t have a better “second” choice. I was lucky to have OHSU carry out my SCT in spite of the high blasts and WBC count. Different type of disease, I suppose and they had me from the very beginning. It will be rough being hours instead of minutes away but the Hutch is known to make it as easy as possible for family to be nearby and support the patient. Also, if yur dad authorizes it, they will keep you very aware of what is going on and what options are available every step of the way. Know that there are many here hoping and praying for your dad and your family.
Jim

[KWJ]

Thanks everyone. I am trying to stay positive. My mom is going to set up a caring site, she just bought a laptop, so I will post the link after she gets it.

They are supposed to be at SCCA until April. I guess we are having Christmas in Seattle!

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