Halfway Treatment?

[Statmatics]

I saw the hematologist a few days ago. He diagnosed me with "MDS with excess blasts." He gave me three treatment options: (1) weekly blood draws and weekly retacrit, (2) vidaza, (3) stem cell transplant.

I am wondering if there is a "halfway treatment" stronger than (1) but less intimidating than (2)?

They tell me vidaza is chemotherapy. I've seen many family members and friends devastated by chemotherapy. I am intimidated by it.

[Neil Cuadra]

The range of optional your hematologist offered is reasonable. Those are the same choices other MDS patients face.

It's hard to recommend which treatment is best for somebody else, since it's such a personal decision for you, your family, and your hematologist, but here's some information that might help you.

Retacrit is an ESA (erythropoiesis-stimulating agents) which may boost your red count. It's considered to be "supportive care." It may keep you comfortable, if a low red count is your primary symptom, but it doesn't address the underlying disease.

Azacitidine (brand name Vidaza) is what's called a hypomethylating agent. It interferes with the ability of your bad (MDS) cells in your bone marrow to reproduce, while not affecting reproduction of the healthy cells. It's quite different from the chemo drugs used for other types of cancer. Many patients tolerate it well, without serious side effects, and benefit from it for years, keeping the MDS from progressing, while not actually curing it. But you'd have to be closely monitored for side effects.

There are other drugs for MDS. Perhaps your hematologist has already focused on azacitidine because of the characteristics of your MDS, but it's worth asking why he/she recommends that specific drug. Other than trying other drugs, there's no "halfway treatment" as you describe.

There is another option, which is less than your choice (1). That's called "watch and wait," which means that you don't start any treatment while waiting to see if the MDS is stable and whether you can live with the symptoms. It's a tradeoff, because some treatments are best started sooner rather than later. Another topic to discuss with the hematologist.

A stem call transplant is the only possible cure for MDS. It requires a stem cell donor, which can be a relative or even a stranger who has similar bone marrow characteristics (called the HLA type).

Doctors often recommend transplants for patients who are healthy enough for the procedure and who have a well-matched donor. The transplant process requires a stay in the hospital, where azacitidine, which is less risky, is given by injection in outpatient visits.

Doctors are more likely to recommend only supportive treatment for an older or infirm MDS patient, to keep them comfortable, especially if only their red blood cell count is a problem. If you have a low white cell count or a low platelet count, then other medications could be needed.

It would be helpful if you speak to the hematologist about which blood cells are being affected by your MDS, whether he/she thinks you are a good candidate for transplant (and who your donor would be), and whether your MDS is considered lower risk or higher risk (RAEB-1 or RAEB-2). You should also check what your insurance covers. Quite often, patients are advised to try azacitidine first, before proceeding to transplant, even if they are a good transplant candidate.

The Aplastic Anemia & MDS International Foundation can offer advice about these choices as well. You can contact them at aamds.org or info@aamds.org or 800-747-2820.