What to Expect When Starting CAR T-Cell Therapy for Multiple Myeloma

CAR T-cell therapy transforms white blood cells into medication that can fight this cancer. It’s a long process but can be lifesaving.

If your doctor has recommended CAR T-cell immunotherapy to treat your multiple myeloma, chances are you’ve already tried multiple treatments that have either stopped working or weren’t effective.

This treatment, in which the CAR stands for chimeric antigen receptor, is relatively new and highly promising. White blood cells are extracted from the blood and genetically engineered in a lab to create “personalized” medication, which is then given by infusion.

“Myeloma CAR T-cell therapy has shown unprecedented effectiveness in reducing myeloma disease,” says Hans Lee, MD, an associate professor in the department of lymphoma/myeloma at The University of Texas MD Anderson Cancer Center in Houston.

It’s also a time-consuming process that takes several months to complete. Before you agree to receive it, learn about all the steps involved, so you’re prepared for each one.

Before You Start CAR T-Cell Therapy for Multiple Myeloma

As with most complex cancer treatments, a fair amount of preparation is necessary before CAR T-cell therapy can begin. This will include tests to evaluate the health of your heart and lungs, because the first phase of the treatment — leukapheresis, in which white blood cells are removed from your blood — can weaken both of these organs.

What It’s Like to Receive CAR T-Cell Therapy

Your treatment will take place at a research hospital or certified cancer center that specializes in it, says Verina. CAR T-cell therapy is a multistep process that typically takes two to three months to complete.

Step 1: Collecting the T Cells

T cells are collected through a process called leukapheresis. Here’s what to expect during the procedure.

  1. Once you arrive at the treatment center, a nurse will settle you into a bed or reclining chair and place a thin tube, called a catheter, into a vein in your neck.
  2. The catheter will be connected to a machine that looks similar to a dialysis machine.
  3. The machine draws your blood in through one of the tubes connected to the catheter, where it extracts T cells and then returns the blood to your body.
  4. During the procedure, a nurse will monitor you for side effects. You may feel some numbness, tingling, or muscle spasms, likely caused by a drop in calcium levels that’s common during leukapheresis. If this happens, you may be given calcium orally or through an IV to offset the effects.
  5. Once enough T cells have been extracted and your blood has been returned to your body, the nurse will remove the catheter and apply a bandage to your neck where the catheter was inserted. The area will bleed a bit, so you’ll be instructed to keep pressure on it for three to five minutes.
  6. The entire process will take two to four hours. You’ll likely feel tired afterward, which is why you’ll need your designated caregiver to take you home.

Step 2: Making the CAR T Cells

Once your T cells are collected, they’ll be sent to a lab to be genetically engineered and packaged into a medication that you’ll later receive by infusion. This will take four to six weeks, during which:

  1. A technician will add a special receptor called a chimeric antigen receptor (the “CAR” in CAR T-cell modification) to the T cells.
  2. The modified T cells will be multiplied in the lab over the course of four to six weeks.
  3. When enough T cells have formed, they’ll be prepared as an infusion and sent back to the treatment center.

Step 3: Starting Pre-Infusion Chemotherapy

Five days before your CAR T-cell infusion, you’ll receive infusions of two chemotherapy medications — cyclophosphamide and fludarabine — to prepare your body. You’ll get them once a day for three days in a row. The goal of these sessions is to deplete some of the white blood cells to make room in your blood for the CAR T cells. After your third session, you’ll have two days of rest before your T-cell infusion.

Each day of chemotherapy will be basically the same:

  1. After you arrive at the treatment center and check in, a doctor or nurse will bring you into an exam room to check your vitals. They’ll also have you step on a scale, as the dose of medication will be based partly on your weight.
  2. Next, you’ll be taken into the infusion area and settled into a comfortable chair. A nurse will insert an IV into a vein in your arm.
  3. The two chemotherapy drugs, which will be mixed together in an infusion bag, will flow directly into your bloodstream through a tube connecting the bag to the IV. It will take about 30 minutes for the bag to empty.
  4. When the infusion is finished, the nurse will remove the IV from your arm, and your caregiver will be able to take you home.

Step 4: Receiving the T-Cell Infusion

After a day or two of following the chemotherapy, you’ll go to the hospital for your infusion. The actual procedure will only take about an hour, but because your healthcare team will need to monitor you for at least a week afterward, you’ll stay in the hospital during that time. Here’s what to expect.

  1. A week or two before your T-cell infusion, you should have had a pretreatment evaluation appointment, during which your doctor and nurse coordinator should have reviewed your treatment plan with you.
  2. The day of the infusion, you’ll arrive at the hospital and check in. 
  3. After you’re settled in your room, a nurse will come around to connect you to an IV pole, which will be with you for most of your hospital stay. 
  4. Once the infusion is ready, you’ll receive a central venous catheter (CVC) in one of the larger veins in your body, in either an arm or your upper chest. The medication, as well as fluids, electrolytes, and blood transfusions, will be administered through the CVC.
  5. Once the catheter is in, you can sit back and relax for the next 30 to 60 minutes, while the medication flows directly into your bloodstream.
  6. During this time, a member of your healthcare team will check your vitals (blood pressure, heart rate, etc.). They’ll also draw some blood to check your white and red blood cell counts.
  7. After the infusion is over, the nurse will take out the CVC, and you’ll be monitored for side effects.
  8. You’ll stay in the hospital for at least seven days, so your healthcare team can continue to monitor you and treat any side effects that may occur. Your caregiver will need to be on hand throughout this time and for at least the first two weeks after you’re discharged, to provide extra monitoring and support.

Sometimes the infusion is given as an outpatient procedure. In that case, you’ll still need to be monitored by a care team and may need to be admitted to the hospital if you develop side effects.

How to Prep for T-Cell Collection

To help prevent the side effects of calcium loss and post-collection fatigue, as well as make the procedure as comfortable as possible:
  • Eat high-calcium foods. For one to two days before your T-cell collection, fill up on calcium-rich foods, such as cottage cheese, Greek yogurt, and milk. This can help keep your calcium levels from dropping too low during leukapheresis.
  • Dress for the procedure. Wear comfortable, loose clothing. Because the catheter will be inserted into your neck, choose a top with a zipper or buttoned opening. You may also want to bring a blanket in case the infusion center is cold and doesn’t provide them.
  • Bring some entertainment. To pass the time, Verina recommends bringing something to read, listen to, or watch — a book or magazine, for example, or your tablet or phone with music, a podcast, or a movie downloaded. If you opt for the latter, make sure you bring headphones or earbuds.
  • Invite your caregiver. Your caregiver will need to drive you home after your procedure, but you can also ask them to take you there and stay with you to keep you company.

How to Prep for Chemotherapy Infusions

Chemotherapy can be difficult to go through, but there are a few steps you can take to help make it tolerable.

Drink Lots of Water

Cyclophosphamide can irritate the bladder and leave it vulnerable to infection. During the three days of chemo, drink plenty of fluids — more than you normally might, even — to help flush the medication out of your bladder.

Ask Your Caregiver to Come With You

There’s a good chance you’ll be exhausted after each chemo session. Consider having your caregiver come with you or at least pick you up afterward to help you get home. (The value in having them with you during the procedure is that you’ll have someone to talk to, if that would help the time go faster.)

Keep Clear of Anyone Who’s Sick

The medications can suppress your immune system, so keep your distance from family members and friends who may be sick. This includes your caregiver: If they become ill during your chemotherapy, let your doctor or a member of your healthcare team know.

Treatment Timeline

The entire CAR T-cell therapy procedure — from collecting the T cells to receiving the infusion and being monitored — can take two to three months. Here’s what you can expect to occur and when.

Are There Side Effects or Other Concerns?

CAR T-cell therapy carries the risk of two key side effects, which typically appear in the first week or so after treatment but sometimes don’t develop for a month. One of these is cytokine release syndrome (CRS), which is caused by a rapid increase of chemicals called cytokines in the immune system. The other common side effect of CAR T-cell therapy is neurological problems.

Other Potential Complications

These can occur weeks, or even months, after a T-cell infusion:

  • Anemia: Abnormally low levels of red blood cells that can leave you feeling tired, short of breath, or lightheaded
  • Neutropenia: Low levels of white blood cells that can increase your risk of infection
  • Low blood platelet count: Can lead to bruising or prolonged bleeding from cuts

What If CAR T-Cell Therapy Hasn’t Worked for Me?

If the cancer continues to progress after a month or so, your doctors may recommend another type of treatment for multiple myeloma, such as a bispecific antibody that targets a different protein, says Dr. Lee.

The Voice of Experience: Real-Life Tips for CAR T-Cell Therapy

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