Day +1123: I’m bleeding out, I’m bleeding out for you…

12/27/2013: Seated in a comfy recliner with my iPad, I’m in the midst of my first ECP treatment at Johns Hopkins this afternoon. I’m learning the new routine. Vitals checked, large needle inserted in port (small ouch), nothing happens, nurse Joyce frowns. Heparin flush, blood observed…ah, that’s better. Moments later the machine complains…beeping. Occlusion. Joyce frowns again: “Do you know what size port you got? It seems small.” Images of port replacement immediately flash silently through my mind: Please, no, not again. Not another mistake, another procedure, another delay. Another heparin flush. I hold my breath. Joyce smiles. “Now it’s flowing.” During the next hour, this scene is repeated several times. Finally the first of three draws is complete….

Extracorporeal Photopheresis (ECP)

In 1972, medical technologist Herb Cullis invented the first blood cell separator, the Fenwal CS3000™. The prototype has been on display at the Smithsonian Institution in Washington, D.C. since 2002 and is claimed to be the only invention on display while still in production. An estimated count of 3,500 machines worldwide are still in active use for apheresis (from Latin aphaeresis – to take away), a procedure where blood is drawn and separated into its components via centrifugation (see diagram below). Some components are retained, and the rest reinfused.

Photopheresis, invented by Dr. Richard Edelson at Yale University in the early 1980s, is a type of apheresis in which white blood cells (buffy coat in diagram) are treated with a photoactive drug and then exposed to ultraviolet (UVA) light before reinfusion. Photoactive drugs are inert until they’re irradiated. The term extracorporeal means simply that the cells are treated outside the body. This treatment originally targeted cutaneous T-cell lymphoma but is now used to treat graft-versus-host disease (GvHD), organ transplant rejection, and a number of autoimmune disorders, as well.


  • ECP is very safe, having fewer acute side effects and less toxicity than systemic drug therapies. No long-term side effects have been observed.

  • In contrast to immunosuppressant and steroid therapies, ECP does not suppress the immune system and therefore does not add to the risk for opportunistic infections.
  • Unlike PUVA or UVA1 phototherapies or topical drugs, ECP treats multi-organ GvHD.
  • Secondary malignancies have not been associated with ECP.
  • ECP retains graft-versus-leukemia effects so does not increase risk for relapse associated with the use of conventional immunosuppressants.


  • It may take months of treatment to see a response, and overall response rates are estimated at 50-60%.
  • ECP is expensive, ~$4600 per treatment.
  • Therapy sessions are time-consuming, 3-4 hours per session.
  • ECP may not be available at a nearby facility.
  • Because intravenous (IV) access is required, most patients have catheters or ports and therefore are at some risk for infection or blood clots. If a port is not used, there is a risk of collapsing the vein.
  • ECP is associated with a few acute side effects from the therapy itself, including increased sensitivity to light, occasional hypotension (low blood pressure), mild fever, itching, or general tiredness and lethargy. My apheresis nurses say that very few of their patients complain of any side effects.

Specifics of My ECP Therapy

  • I receive treatments twice a week at Johns Hopkins, using the THERAKOS™ UVAR XTS® Photopheresis System pictured below. The photopheresis area is on the opposite side of the same room where I had my UVA1 treatments.
  • My clinical apheresis nurses are Dawn and Joyce. Both are extremely skilled and kind, as well as patient with my seemingly endless questions.

  • The machine takes 15 minutes to prime. During this time, a nurse checks my blood pressure and temperature. An IV is started via my port, using a 16 gauge x 1″ high flow, straight, non-coring needle. It hurts a bit going in. A tube of blood is drawn for CBC and CMP tests once a week. I’m connected to the photopheresis machine with plastic tubing.

  • About 10% of my blood is treated each session in three “large bowl” cycles of 225ml each. Volume is estimated based on body weight.
  • Each cycle, whole blood is drawn and separated by the centrifuge. White cells (buffy coat) are retained, and red cells, platelets, and plasma are reinfused via my port to complete the cycle. The pictured tray of cells look slightly peachy pink because a few red cells and platelets inevitably end up in the mix.

Buffy Coat

  • After the third cycle, the bag of about 250ml of accumulated buffy coat cells are injected with a syringe (~3-5cc) of the photoactive drug, methoxsalen, and exposed to UVA light. Time of exposure varies with a baseline of 8 minutes and an additional 1 to 60 minutes calculated by the machine based on hematocrit, volume, and light intensity (bulb age).
  • The treated cells are reinfused via my port.
  • The nurse flushes my port with heparin and disconnects the line. She rechecks my blood pressure and temperature.
  • The entire process takes 3 to 3-1/2 hours. An attending dermatologist and a resident stop by about halfway through to ask how it’s going. DVD movies are available, or I can bring my own. I can eat and drink during the treatment but there are no bathroom breaks. I wish I’d known that before I drank the 24oz bottle of water on my way to the treatment center!

That’s about it! The only aftereffect I noticed was fatigue. My port was sore, too, but I don’t think it’s completely healed yet. Let me know if you have questions or notice any errors/misinformation. I’ll keep you posted with my progress.


  1. I checked the tagline. Cute title for the group. Definitely made me think of you and your collection. 🙂
    Three to four hours for eCh treTment. That’s a lot of time. At least one to two movies depending what you watch. Hope you have lots. I didn’t notice how often you have to go for the treatments. Once a week, month, or….? Hope it helps in your recovery. It amazes me how we have such advances in the medical field. Hope it continues. There are still lots of things to work on. One step at a time. You are a trooper!
    Cathy 🙂

  2. Hope you see results sooner than target! I often marvel how lucky you are to have such outstanding insurance.

    Happy New Year!

  3. Hey Karen!
    Happy New Year to you both!
    That ECP is pretty fascinating stuff. Now I have to go read up on the drug to understand exactly what it is doing to your WBCs.
    Hope the New Year brings you joy!

  4. Happy New Year!

    Now you’ll finally have time to watch Babylon 5!

  5. Good luck!! I am thinking of you!!! I hope this works!

  6. That is cool. I’m glad that you have access to such rare treatments. Too bad the treatment chairs look so…clinial. That is a long time to spend in there.

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