By: Jennifer Gillette and Lola Reich
Photopheresis or extracorporeal photoimmunotherapy, is a procedure that could be recommended by your doctor to prevent or treat Graft Versus Host Disease (GVHD). It is a medical treatment that removes blood via a machine and isolates white blood cells. Then, these white cells are exposed to a medication called 8-methoxypsoralen, followed by UVA irradiation before the blood is returned to the patient.
Lola Reich had a transplant for her Myelodysplastic syndrome (MDS) in 2014 and has, through this interview, offered to share her unique experience and some pearls of wisdom in general regarding her transplant journey with our staff social worker, Jennifer Gillette, LMSW.
Note: the following is the opinion of one patient and should not treated as medical advice. If you have any relevant medical questions related to this subject, please be sure to follow up with your health care team.
- Why were you a candidate for photopheresis?
My GVHD was not responding well to first-line treatments. I had a bad dental infection in December 2016 and was on several antibiotics for this infection. My doctor questioned whether this infection could have triggered the sudden onset of my GVHD. In February 2017, a bumpy rash developed on my shoulder. I went back to my local oncologist who had treated my MDS; he confirmed it was GVHD. At first, I tried topical applications; however, the rash began to spread to other areas. Later, brown and silver-ish patches that had a lichen-like texture developed. The patches didn’t hurt or itch but they would not go away. It took time for my insurance to finally approve the photopheresis procedure, but once it was approved, I was ready to try the treatment.
- What where some of the hardest things you experienced with the treatment?
The first treatment I had was by an IV and my arm swelled a great deal. After this, the doctors decided to put in a central line. My immune system kept fighting the line. This situation was resolved when I figured out how to deal with central line and my reaction to it. There was no pain with the line. Within two months the rashes were turning around and they no longer were spreading. The treatment was twice a week for slightly over a year. The procedure was not bad at all. The first 12 weeks I went twice a week for two days in a row. The next 12 weeks the treatments were every other week. During the third 12 weeks period, the procedure was every three weeks; and then they occurred once a month. There were concerns about blood clots so we discontinued the treatments.When I tried to explain to my grandchild what was happening with my complications with this treatment, I named my immune system with her. We called it April. I would share that April did not like the line and was having a fit today. I wanted to make it less scary for her when we explained what was happening.
- Did your GVHD make a difference for you?
I had oral, vaginal, skin, and eye cGVHD and I feel I have beaten it. Every three months I go for a check- up and I am now off prednisone.
- Were there any after-effects that people should be aware of?
None that I can personally feel or have heard about. But here is a tip. There are two kinds of photo machines. Ask for a double-line machine because it reduces the total treatment time by three hours. It is called therakos. A single-line machine takes longer and puts more pressure on the patient’s veins. My central line was a pain at times, but it was better to have one than not. I also found the brand of bandages by Nexcare to be easier on my skin; they are waterproof. The first set of bandages made it much more difficult.
- Is there anything you wish you had known before that you now know?
– The bandages were a big help because I like long hot showers.
– I also wish that I wasn’t so apprehensive. It is not as big as it seems.
– Don’t eat high fatty foods the day before treatment.
– Know all of the cGVHD issues early; there were issues for me with my vagina closing.
– It would help for health care providers to give more information early on.
– Call your insurance provider as soon as you are diagnosed. Ask for a case worker or nurse navigator. Employed by the insurance company, they can explain things, help you find options, push for approval of certain procedures, help with expediting prescriptions, and let you know if the specialist you want is in network.
- Would you recommend this procedure to others?
- Is there anything else you have found helpful in managing you cGVHD?
Listen to your doctor, get second opinions, and ask your medical team to explain slowly if you are confused. It is so important for you to understand exactly what is going on. If you are confused, bring someone with you to appointments. Take warm socks to the procedures. And you don’t need someone with you when it is being done. Prepare to sit for four to six hours. Follow the rules: use sunscreen, stay out of the sun, wear hats to cover the face and be aware of your body.
- What has helped you cope the most with everything you have experienced and are there other words of wisdom you would like to share with others?
– Seek out a good GVHD doctor who listens to you. You will need a true GVHD specialist. I have heard from many medical people, “don’t worry about that symptom” but it is difficult not to worry. GVHD is very undertreated.
– If you are going through hell, just keep going forward. You will get to the other side.
– Keep a sense of humor
– Remember, you didn’t do anything to deserve this challenging illness; things just happen!
– Advocate for yourself, have a caregiver advocate and don’t leave with unanswered questions when you are at your appointments.
– Be positive. Join Be the Match
More information about photopheresis can be found at – mskcc.org.