Stem cell transplants and need for donors

A simple swab of your cheek cells is all it takes fo ryou to
become a bone marrow or stem cell donor. See the entry
for info on how to donate.

Stem cell transplants for MPN patients are pretty rare--and they should be for reasons I'll explain as we go. But understanding this process is something we ET patients should have in our bank o' knowledge about our disease.

In a stem cell transplant, the stem cells from a matching donor are infused into your bloodstream. In some cases, your own stem cells (saved from your cord blood as an infant, for instance) can be used. The stem cells then enter your bone marrow from your bloodstream, and the hope is that those stem cells will reverse the fibrosis caused by your MPN. A cure happens in about 50 percent of cases.

It sounds great, but, as with any transplant, there are risks and dangers. Dr. Abhinav Deol, Karmanos Cancer Institute, who spoke at the MPN conference I attended back in March, noted that mortality rates among healthier MPN patients are actually higher after a stem cell transplant than among the highest risk patients. So stem cell transplant is only warranted for patients whose disease is high risk and is not responding to other medications. As you might guess patients with the most stubborn cases of myelofibrosis are those who receive stem cell transplants.

Finding a donor. Finding a compatible donor can be an obstacle for stem cell transplant candidates. As with bone marrow and other organ donations, siblings make the best match. Those who cannot find donors in their family may go through a registry to find a match.

Stem cell donor matches come from those whose genetic make-up is similar to your own, and that means that ethnicity is an important factor in finding a match. Dr. Deol noted that donor registries have plenty of white European donors; about 90 percent of white patients can find a match. However, fewer than half of non-whites usually find a donor from the registry. Certainly there are cultural and historical reasons for why some ethnic groups are hesitant to participate in these donations. But more donors from non-white ethnic groups would help more people.

While those of us with MPNs cannot be donors, you may wish to let friends and family know about the stem cell/bone marrow registry. For more information visit Be the Match. Volunteering involves taking a swab of sells from the inside of your mouth. It is totally painless. Donor criteria is here.

The process. Donor stem cells are infused (like a blood transfusion), so the donation itself doesn't involve invasive surgery. But preparing for a stem cell transplant can be grueling. Patients must be hospitalized to receive high chemo doses to normalize their blood counts. Once the doctor is satisfied with blood count, the donor stem cells will be infused.

After the donated stem cells are infused, patients have to spend time in the hospital for recovery and monitoring of their blood counts. This process can last for three or four months, and anti-rejection meds have to be taken.

Stem cell recipients must be monitored frequently to manage problems that might arise. They also must follow a regular health maintenance program to ensure that they stay in the best shape possible.

Paying for transplant.  Stem cell transplants aren't cheap. They cost somewhere in the neighborhood of $800,000, and a patient's ability to pay may depend on how good his insurance policy is. Medicare and Medicaid to pay for the transplants. This changed in January 2016. In addition, patients will not be able to work as they prepare and recover from the transplant.

If you want more info on stem cell transplants, discuss this with your hematologist.

Meantime, be well!

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