What to Expect

Yesterday was an eventful day!

At 1:00 am, we learned that the tree in our front driveway had fallen onto our house during the storm. The wind gusts had also caused some heavy limbs to fall onto the play structure in our backyard, smashing it up on one side. In the morning, we began making calls to the insurance adjuster and to a tree removal service. Fortunately, by the end of the day, the tree was removed, and we learned there was minimal damage to the house. Whew!

During all of this, we had a phone meeting with Ian, the nurse practitioner who will be administering the Interleukin 2 protocol. Ian explained the process in detail:

• Arrive and check-in on Monday, the 18^th, at 7-7:30 am
• Meet with the team who will be involved in Mark’s care, including the oncologist.
• During the morning, a temporary intravenous tube (central venous catheter) will be inserted into a large vein in the neck, placed by a doctor in diagnostic imaging. The catheter will remain in place for the duration of the hospital stay. IL-2, fluids, blood transfusions, antibiotics, and other medicines can be given through this catheter. (Ian explained that the medicine is too caustic for the arm's blood vessels; thus, a larger vessel in the neck is used.)
• The first IL-2 treatment is usually at 3:00 pm on the day of admission.
• The infusion will last for 20-30 minutes and will be given every 8 hours for up to 14 total doses. An alarm will sound when the infusion is about to start to alert the staff.
•  It is common to withhold some doses of IL-2 because of side effects. Although 14 doses are planned, the average number received is 11-12 during the first cycle.
• Release from the hospital will be at least 12 hours after the last IL-2 dose or longer if needed. (Saturday, the 23rd, if all goes well.)

 Ian then emphasized that side effects are to be expected. In fact, side effects are an indication that the drugs are doing their job of activating the immune system to release T-cells in the bloodstream into the tissue to attack invaders such as cancer. (He said to imagine the bloodstream as a garden hose with lots of tiny holes leaking out the T-cells!)

    High-dose IL-2 generally causes significant side effects in all patients that may be severe:
    ·       fatigue, chills, fever,
    ·       skin reddening and itching with peeling of the top layer of skin, (Itching being most irritating!)
    ·       loss of appetite, heartburn,
    ·       nausea, vomiting, diarrhea,
    ·       fluid retention, weight gain,
    ·       nasal congestion, eye redness, mouth sores,
    ·       sore muscles, sore joints, and headaches. 

     These side effects generally increase in frequency and severity as more IL-2 doses are given and go away quickly after IL-2 is stopped. (Some may last several days to a week.)

 More severe side effects that can occur with IL-2 include:

    ·       lowering of the blood pressure to the point of feeling light-headed, dizzy, or even black-out. Low blood pressure can usually be treated with IV fluids or a medicine called phenylephrine to raise your blood pressure. This medicine requires close heart and blood pressure monitoring that is generally provided on the oncology unit but rarely may have to be provided in the ICU. Although blood pressure might be normal at rest in bed, it tends to drop when getting up or to go to the bathroom. If blood pressure drops when out of bed, you could pass out, fall, and injure yourself. For your safety, a nurse or other staff member will assist with ALL out of bed activity, including use of the restroom.

     ·       Fluid retention in the lungs can result in cough, shortness of breath, and wheezing. Fluid can also collect around the outside of the lungs in the chest cavity.

     ·       Changes in thinking and perception can occur and range from mild confusion to complete disorientation (delirium, hallucinations), belligerence, or coma. (Ian said not to be surprised if Mark saw bunnies hopping over his bed!)

     ·       A temporary decrease of liver function resulting in jaundice, and liver cell damage.

     ·       Decreased ability of the blood to clot can result from liver damage.

     ·       Changes in other blood tests such as magnesium, calcium, phosphorus, sodium, potassium, uric acid, protein, albumin, and glucose commonly occur.

     ·       A small percentage of patients have experienced serious infections requiring IV antibiotics. The risk of infection is greatly reduced by giving antibiotics throughout the treatment cycle.

     ·       The ability to produce red blood cells and platelets, both of which may occasionally lead to blood counts low enough to require a transfusion(s).

 Other rare side effects that have occurred with the use of IL-2 include:

·       stroke,

·       gangrene (infected and dead skin and tissue),

·       fluid around the heart, fluid in the abdomen,

·       a clot around the IV catheter through which the IL-2 is given, and a blood clot in a vein that reduces blood flow to the area below the clot.

·       inflammation of normal organs due to autoimmune diseases such as joint (arthritis) and thyroid conditions (overactive or under-active thyroid). The symptoms of thyroid conditions may include heart pounding and feeling very tired or anxious.

·       Small white patches on the skin called vitiligo, which is usually harmless but is a permanent change. Vitiligo has only been seen in patients with melanoma.

·       In rare instances, this treatment can cause death.

 Despite the potentially severe side effects of IL-2 treatment, thousands of patients have been treated with high-dose IL-2 since its approval. The doctors will manage IL-2 side effects with medication or by skipping or stopping IL-2 dosing, if necessary. Each patient will receive the maximum safe number of IL-2 doses based on their individual side effects.

 After that thrilling phone conversation, we were content to get back to the business of tree removal!

 I had already felt that this treatment would be much harder than others have been, so I was not surprised by some of the side effects, but wow, it seems pretty intense! While Mark is not excited about going through it, he is not afraid and continues to be at peace. I think it’s been good to have plenty of other things to keep us occupied!  We did manage to get in a movie last night and ate a pint of Graeter’s ice cream the night before!! 😀

We will keep you updated on his response to the IL2 treatment. How we appreciate your love and support!