By Sarah Gerth
I have been living in Lake Oswego, a small town outside of Portland, for more than 40 years. Originally, I am from the East Coast, growing up in Pennsylvania and Maryland, then moving to Portland in my early 20s.
I first had an outbreak of cutaneous lymphoma in 2005 and was diagnosed with mycosis fungoides (MF) Stage 1 by a local dermatologist. The diagnosis was made after a biopsy was done and sent to a specialty lab. In the past 10 years, I have had a variety of treatments. I have had radiation treatments twice on my right forearm and radiation on my right eyelid. The latter was especially difficult to endure, and radiation both times caused fatigue. The next three years, I did phototherapy treatments three times a week, but kept my time in each treatment low because my skin is very sensitive, and I burn easily. In 2017, the lesions covered over 15 percent of my body, so my oncologist started me on chemotherapy with vorinostat. This was a very difficult chemotherapy with severe side effects. I experienced fatigue, low blood cell counts, and an inability to eat much due to the strong taste in my mouth. I lost 10 pounds. Most of my hair fell out gradually over a period of four months then grew back in as curly (my hair is naturally straight).
In 2017, I found some improvement in the lesions using topical bexarotene and then topical nitrogen mustard. For the next two years, I returned to doing phototherapy treatments. My skin is so sensitive that I could only do treatments twice a week and at a low level. Therefore, it did not control the outbreaks, which again, covered over 15 percent of my skin. My lymph glands also became enlarged, putting me in Stage 2 of MF. Chemotherapy with gemcitabine was started in February of 2020. This again had severe side effects with fatigue, nausea, fevers, thinning hair, and low blood cell counts (neutropenia), so it was discontinued in May 2020.
I am happy to report I am now on an immunological chemotherapy treatment which is working well! It was necessary to have failed two previous chemotherapies to qualify for mogmulizumab as it is so expensive. I understand it has only been available for use in the past two years. I am so grateful to be getting it. I started receiving it in June and will continue infusions for the next year. There have been five treatment and I am showing some improvement in my symptoms already.
It has been a long, challenging struggle with MF these past 10 years. The treatments have been quite time consuming; applying all the lotions and gels every day, light treatment two or three times a week, and chemotherapy treatments lasting around four hours each week or so. I am so grateful for my treatments and for the care I receive from my oncology specialist and the hospital/clinic. I would recommend others who are getting treatment to find the most knowledgeable care providers and to get support from family members and friends.
I have found the Cutaneous Lymphoma Foundation (CLF) to be a great resource and encourage others to participate in it. They have answered my questions and concerns, and provided a wealth of information. The CLF provides a newsletter and online webinars. I have had access to participating in a networking group in which I have met others who are living with this rare disease. Prior to joining the networking group, I had not met anyone else who has this disease. We have shared our stories and supported one another. I was able to attend a conference in Portland presented by the CLF a few years ago and to greatly increase my knowledge and awareness. Research into new treatments and advocacy are also provided at the Foundation. I am grateful for all of the support CLF has provided for me. Knowing I am not alone in the struggle that others are living, learning, coping, and thriving with cutaneous lymphoma is heartening.
About the Cutaneous Lymphoma Foundation. Cutaneous lymphomas are cancers of lymphocytes (a type of white blood cells) that primarily involve the skin. Cutaneous lymphomas are classified based on whether they are cancers of B-lymphocytes (B-cell) or T-lymphocytes (T-cell). The Cutaneous Lymphoma Foundation (CLF) is an independent, non-profit patient advocacy organization dedicated to supporting every person affected by cutaneous lymphoma. CLF’s mission is to eliminate the burden of cutaneous lymphoma by promoting awareness, providing education, advancing patient care, and fostering research.
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374