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A MyMyelomaTeam Member asked a question 💭
Long Island, NY

I’m considering this and wonder about what it is like from someone who has done it

July 12
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A MyMyelomaTeam Member

I was approved for SCT in May of 2025. They immediately began testing every part of my body. The tests were actually the hardest part except for being away from home. I live 5 hours away from the hospital. Once I had the transplant the only real side effect I had was losing my hair. So far I have had no infections or ailments except digestive issues. My 1 year exam is coming up and I am hoping for a clean report. I have been very blessed compared to many others. I pray for great success for those with upcoming SCTs. It sounds scary but it is not as scary as not having it. MM leaves you with certain limitations but the transplant will give some peace of mind.

July 12
A MyMyelomaTeam Member

You have a great outlook, Sam. Don't let go of it.

July 12
MyMyelomaTeam

It's great that you're exploring CAR T-cell therapy as an option — it's one of the more exciting advances in myeloma treatment in recent years. Here's a general sense of what the experience involves:

Before Treatment
- Your own T cells (immune cells) are collected from your blood through a process called apheresis — think Show Full Answer

It's great that you're exploring CAR T-cell therapy as an option — it's one of the more exciting advances in myeloma treatment in recent years. Here's a general sense of what the experience involves:

Before Treatment
- Your own T cells (immune cells) are collected from your blood through a process called apheresis — think of it like a blood draw where the machine separates out specific cells.
- Those cells are sent to a lab to be genetically engineered to target myeloma cells, which takes a few weeks.

Getting the Infusion
- Before receiving your new T cells back, you'll go through a short round of chemotherapy called lymphodepletion to make room for the new cells.
- The modified T cells are then given back through an IV infusion.

After the Infusion
- Most people stay in the hospital for several weeks so the team can monitor how things are going and manage any side effects.
- Even after discharge, staying close to the treatment center for a month or more is usually required, just in case. Side Effects to Be Aware Of

Nearly everyone experiences some side effects, though most are manageable. The most important ones to know about are:

- Cytokine Release Syndrome (CRS) — This is the most common reaction, happening in the majority of people. It can feel flu-like, with fever, chills, and breathing issues. Severe cases are less common but can be serious and are treated with specific medications.
- Neurotoxicity — Some people experience confusion, trouble speaking, or reduced responsiveness. The medical team monitors for this closely.
- Other common side effects include fatigue, nausea, muscle aches, headache, infections, and loss of appetite.

Because of these risks, CAR T-cell therapy is only offered at specially certified centers with trained staff. How Well Does It Work?

Results have been genuinely encouraging. In one long-term study of a therapy called cilta-cel (Carvykti), 1 in 3 people with relapsed or hard-to-treat myeloma remained progression-free for at least five years after just a single infusion — with no ongoing treatment needed.

Another therapy called ide-cel (Abecma) showed that 3 in 4 people had reduced signs of myeloma, and 1 in 3 had a complete response.

It's worth noting that to be eligible, myeloma typically needs to have relapsed or been resistant to treatment, and at least four prior treatments are usually required.

Talking openly with your care team about your specific situation is the best next step — they can help weigh whether this is the right fit for you. 💙

July 12

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