A Journey to Self-Advocacy and Community Connection with CTCL Skin Symptoms

 

Acknowledgment: This story is sponsored by Mallinckrodt Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

Learn more about CTCL skin symptoms and hear from other inspiring patients at the THERAKOS® Facebook page and YouTube Channel.

A Journey to Diagnosis

Shelia is living with cutaneous T-cell lymphoma (CTCL) skin symptoms, and being treated with THERAKOS® Photopheresis therapy. Please remember that the information discussed in this article should not replace conversations with your healthcare provider. Shelia is being compensated by Mallinckrodt to share her own experiences. Please keep in mind that every patient’s experience is different and results vary.

What is UVADEX (methoxsalen) Sterile Solution?
UVADEX (methoxsalen) Sterile Solution is used with the THERAKOS CELLEX Photopheresis System for the treatment of skin problems associated with CTCL in patients who have not responded to other types of treatment given by their doctor.

IMPORTANT SAFETY INFORMATION

UVADEX (methoxsalen) Sterile Solution should only be used by doctors who have special skills in the diagnosis and treatment of CTCL and who have received special training and have experience in the THERAKOS CELLEX Photopheresis System.

Please see additional Important Safety Information at the end of this article. Please click here for the full Prescribing Information, including BOXED WARNING.


Cutaneous T-Cell Lymphoma (CTCL) Skin Symptoms

Cutaneous T-cell lymphoma is a rare cancer which forms in white blood cells called T-lymphocytes, or T-cells. Normally, these T-cells play a role in immune response. However, in CTCL, the T-cells become abnormal. As abnormal and malignant T-cells accumulate, skin symptoms appear – including skin redness, rashes, or scaly plaques. There are multiple CTCL subtypes, including mycosis fungoides and Sézary syndrome, among others. Sézary syndrome and mycosis fungoides are the most common forms. Symptoms vary based on subtype. If you’re interested in learning more about the skin symptoms associated with CTCL, take a look at this helpful information from Mallinckrodt Pharmaceuticals.

Shelia: My Story

Shelia is living with cutaneous T-cell lymphoma (or CTCL) skin symptoms, and being treated with THERAKOS Photopheresis therapy.

Growing up, I was raised in a single parent home. I’m the oldest of three, with two brothers who are about five years younger than me. My mother was – oh my god – the epitome of service. And one of the areas where she really served us was the kitchen. She had a lot of honor, a lot of pride, a lot of love. That was one of the ways she demonstrated her love language. My mother used the kitchen as a tool not to teach me how to cook but how to work together, how to work as a team, how to connect. She passed this desire for connection and service on to me.

My mother also taught me about accountability – to take ownership of my decisions and to trust myself. By the time I was sixteen, I was a teenage mom. I am now the proud mother to two daughters and the proud grandmother of three grandchildren. I knew that I wanted to make the best life for my family. So after receiving my undergraduate degree in Organizational Leadership, I went back to school to pursue, and eventually complete, my MBA with a focus in marketing. I traveled, I loved, I cooked.

Years later, I was faced with a new potential challenge – a random breakout of round, raised, itchy skin, almost like hives. This was an itch you couldn’t even imagine. Now, as a child, I had asthma and eczema so I knew what those felt like. In fact, I had to get weekly allergy shots.

This was an altogether new situation. My mother was an LPN and was adamant about me knowing my body. So as soon as this breakout occurred, I immediately knew that it wasn’t eczema. At the time, I was a project manager for a natural gas distributor. I wondered whether this was the result of environmental or industrial allergens. But a trip to the allergist showed nothing.

After a referral to a dermatologist who had more experience dealing with African-American skin. I was given a topical steroid and the breakout went away. I felt like that chapter was closed and there was no reason to really keep an eye on it.

The Diagnosis

Years later, the breakout came back. My skin was red, itchy, and irritated. It began shedding; my granddaughter, who was four or five at the time, used to call my skin “itching crumbs.” When I went back to the allergist, I was told that I might be dealing with an autoimmune condition. Since my half-sister has lupus and my mother had scleroderma, that made sense to me.

At my dermatologist appointment, I learned a valuable lesson in patient advocacy. There was a note in my file: Patient should be tested for CTCL every 6 months. When I asked for clarification, I heard Lymphoma. I knew enough to know that meant cancer. I was shocked; it was a hard hit to say the least. When I was going through all my tests, I didn’t ask for copies. At appointments, I didn’t take notes or ask too many questions. I wish I did, but I didn’t know.

For anybody who has recently gotten a diagnosis, that is the one thing I want to stress to you: you have to understand what is going on in your body. It is important to learn how to be your own advocate or have someone else who can support you.

I was referred to the head of dermatology at a medical center, whose father also has CTCL skin symptoms. After bloodwork, a CT scan, and the presence of an enlarged lymph node found during my annual mammogram, my Stage 1A/1B CTCL skin symptom diagnosis was confirmed. The doctor tried to reassure me, but I was terrified, overwhelmed, and unsure how to move forward.

I began doing phototherapy but, after time, my T-cells went up to 7:1, which meant that treatment was no longer working for me. My skin at that point had also gotten worse, with an all-over burning itch, inflammation, and shedding.

With support from my amazing family and the fantastic nurses, my doctor and I decided to try something different: THERAKOS® Photopheresis. I am so grateful that I had such great human beings taking care of me.

I knew I wasn’t done yet. I’m going to continue to be as spunky as I can, so I wasn’t going to give up on treatment.

THERAKOS® Photopheresis

During my treatment, I am connected to the THERAKOS Photopheresis system with an IV line. After the system removes some blood, it is separated – red cells from white cells. The doctors treat the white blood cells, where the T-cells are, with UVADEX and then, through the same machine, expose the cells to UV-A light. Then the treated cells are returned back into my body, and I’m able to get up and go. During the 24 hours after treatment, I avoid exposure to sunlight. If I go outside, I wear UVA-absorbing wrap around glasses and protect my skin.

When I first started, I asked my doctors why we couldn’t just take the abnormal cells out. My doctor laughed and said, “Shelia, we can’t just take your T-cells out.” This is really the benefit of speaking with your doctor. Don’t be afraid to ask questions and learn about your condition, your treatment, and what could happen. Being informed is the first step to being the greatest self-advocate.

Right now, I feel that THERAKOS® Photopheresis is working well for me. I do still have periodic flare-ups, and I know just by the pure nature of having CTCL skin symptoms that this will happen sometimes. This is just my experience and I encourage everyone to talk to their doctor about what is right for them.

Sharing my Story

Much like my mother, I really find joy in serving others – and hope that sharing my story can bring comfort or help to others. It takes an average person with CTCL skin symptoms seven to eight years to receive a diagnosis. People have been initially diagnosed with psoriasis or eczema, so I want to raise awareness that their skin symptoms may indicate CTCL as a possibility.

I want people to really understand that any of us can be impacted by illness or other problems at any given time. None of us are immune to that. I also think it’s very important to talk about how this affects people-of-color considering the disparities in the healthcare system. We are one of the last groups to get information so if sharing my story helps – and I think it really does – then I can hopefully inspire someone else to reach out, find help, or pursue their own diagnosis.

One thing I do in my treatment center is talk to other patients. The nurses – who I love to death – will connect me to new patients and I’ve met several local people with CTCL skin symptoms that way. I love doing that. I try to stay as engaged and active as I can within the community because it is my life and it is important.

Self-Advocacy

I know that it can be tough getting a diagnosis. It’s a lot. And when they tell you that there’s no cure, it’s tough. Unless you’ve experienced something rare, people really have no idea. But at the end of the day, whatever those things are that life throws at us, we have no control. So do what you can to make your journey better. Ask questions: “What are you doing? What does that treatment do?”

For me, part of staying accountable for my general health is staying hydrated by drinking lots of water every day. Another part is determining what is important for me. I try to eat healthy and have cut down on meat, carbs and alcohol. I’m so grateful for my oldest daughter who came over and helped me get rid of unhealthy food so that I could fuel my body in a way that is better for my general health and help it fight.

Of course, when I need to feel my mom’s spirit, I still get into the kitchen, put on my favorite music, and whip up something delicious. But I am doing my part to get where I need to be to help my body fight.

If you or your loved one is newly diagnosed, it’s a lot to process and absorb. But once you get your balance back, take accountability, learn to be your own advocate, and try to focus on all of the blessings and reasons to be grateful.


The information below is about the use of UVADEX® (methoxsalen) Sterile Solution with the THERAKOS® CELLEX® Photopheresis System for the treatment of skin conditions associated with Cutaneous T-Cell Lymphoma (CTCL).

It is recommended that you discuss the therapy and your conditions with your doctor.

What is UVADEX (methoxsalen) Sterile Solution?
UVADEX (methoxsalen) Sterile Solution is used with the THERAKOS CELLEX Photopheresis System for the treatment of skin problems associated with CTCL in patients who have not responded to other types of treatment given by their doctor.

IMPORTANT SAFETY INFORMATION

UVADEX (methoxsalen) Sterile Solution should only be used by doctors who have special skills in the diagnosis and treatment of CTCL and who have received special training and have experience in the THERAKOS CELLEX Photopheresis System.

DO NOT USE UVADEX IF:
• You are allergic to methoxsalen, any product similar or related to it, such as psoralen, or any of the other ingredients in UVADEX.
• You have a history of a light-sensitive condition or disease.
• You have had an eye lens removed; use of UVADEX in this condition can increase the risk of retinal damage.

WARNINGS
• You may be at greater risk of sun sensitivity with UVADEX. Tell your doctor if you are taking other medications that cause sensitivity to sunlight, such as anthralin, coal tar or coal tar derivatives, griseofulvin, phenothiazines, nalidixic acid, halogenated salicylanilides (bacteriostatic soaps), sulfonamides, tetracyclines, thiazides, and certain organic staining dyes, such as methylene blue, toluidine blue, rose bengal, and methyl orange.
• If you are pregnant or plan to become pregnant, tell your doctor. Methoxsalen can harm your unborn baby. Tell your doctor right away if you become pregnant during your UVADEX treatment. If you are breastfeeding or plan to breastfeed, tell your doctor. It is not known if methoxsalen passes into your breast milk.
• After UVADEX is given, exposure to sunlight and/or ultraviolet radiation may result in premature aging of your skin.
• Let your doctor know if you currently have skin cancer or if you had skin cancer in the past.
• If you are given too much UVADEX, you may get serious burns from UVA or sunlight (even through window glass).
• Avoid exposure to sunlight during the 24 hours after treatment.
• Exposure to UVA light when UVADEX is used can cause cataract formation if proper eye protection is not used.
• You must wear UVA light-absorbing, wrap-around sunglasses for the 24 hours after treatment with UVADEX when you are exposed to direct or indirect sunlight, whether you are outdoors or exposed through a window.
• If you are being treated for Graft vs Host Disease (GVHD), consult your physician for information regarding blood clots involving the lung and other parts of the body which have been reported in these patients. The use of UVADEX for the treatment of GVHD is not approved by the FDA.
• Safety of UVADEX in children has not been shown.

SIDE EFFECTS OF UVADEX
• Side effects of UVADEX used with THERAKOS Photopheresis System are mainly related to low blood pressure.

For the THERAKOS CELLEX Photopheresis System procedure:

What is the THERAKOS Photopheresis System procedure?
The THERAKOS CELLEX Photopheresis System procedure is a medical procedure in which blood from a patient is collected into a specialized machine that separates the white blood cells from the other blood components. The other blood components are returned to the patient and white blood cells are then treated with UVADEX, which makes them sensitive to ultraviolet light. The treated white blood cells are exposed to UVA irradiation inside the machine, and then returned to the patient. This medical procedure is used to treat skin problems associated with CTCL in patients who have not been responsive to other forms of treatment given by their doctor.

DO NOT UNDERGO THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE IF:
• You have a condition that makes you unable to tolerate loss of blood volume.
• You are allergic or hypersensitive to 8-methoxypsoralen, methoxsalen, or psoralen compounds.
• Your doctor has diagnosed you with a blood-clotting or bleeding problem that can lead to either a blood clot or excessive bleeding.
• You have had your spleen removed.

WARNINGS FOR THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
• Treatments with THERAKOS Photopheresis System should always be performed where standard medical emergency equipment is available.
• THERAKOS Photopheresis System procedure should not be performed on the same day as procedures that can cause fluid changes, such as renal dialysis.

SIDE EFFECTS OF THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
• Low blood pressure can occur with the THERAKOS Photopheresis System procedure.
• You may get an infection and/or feel pain at the site of injection.
• Fevers of 100–102°F (37.7–38.9°C) have been seen in some patients within 6 to 8 hours after treatment. Redness of the skin may also occur with the fever.
• A decrease in red blood cells can occur if the THERAKOS Photopheresis System procedure is given too frequently. Low levels of red blood cells may cause you to feel tired.

These are not all of the possible side effects of the THERAKOS Photopheresis System procedure.
Tell your doctor about any side effects that bother you, or that do not go away. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to the FDA.

Call 1-800-FDA-1088 or visit www.fda.gov/medwatch. You may also report side effects by calling Mallinckrodt at 1-877-566-9466

Please see the FULL PRESCRIBING INFORMATION, including the BOXED WARNING, for UVADEX.


Learn more about CTCL skin symptoms and hear from other inspiring patients at the THERAKOS® Facebook page and YouTube Channel. Follow the helpful links below:


Mallinckrodt, the “M” brand mark and the Mallinckrodt Pharmaceuticals logo are trademarks of a Mallinckrodt Pharmaceuticals company. Other brands are trademarks of a Mallinckrodt Pharmaceuticals company or their respective owners.

Acknowledgment: This story is sponsored by Mallinckrodt Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

© 2022 Mallinckrodt. US-2200443 05/22

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