Tag Archive for: lymphoma

DLBCL Care Partner Shared Decision-Making Planner

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PEN-153 DLBCL Planners_Caregiver.12.14.22

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DLBCL Shared Decision-Making Planner

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DLBCL Patient Shared Decision-Making Planner

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The Pro-Active Waldenström Macroglobulinemia Patient Toolkit Resource Guide

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DLBCL Treatment Decision Tree

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The Pro-Active DLBCL Patient Toolkit 2.0 Resource Guide

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The Pro-Active Follicular Lymphoma Patient Toolkit Resource Guide

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Lymphoma Rashes: Symptoms and Treatments

Editor’s Note: This resource, Lymphoma Rashes: Symptoms and Treatments, was originally published by MyHealthTeam.

When most people think of lymphoma symptoms, a rash isn’t usually something that comes to mind. For some types of lymphoma rashes aren’t an issue, but rashes are a symptom in several different lymphomas.

Cutaneous T-cell and B-cell lymphomas often manifest as a rash in their early stages. “When I first was diagnosed with cancer, I had a rash all over my abdominal area,” one MyLymphomaTeam member said. These conditions are a subset of non-Hodgkin lymphoma and are commonly slow growing. Many people with cutaneous lymphomas go years without a correct diagnosis. Unlike many other types of lymphomas, the lymph nodes are rarely affected until late into the condition and are not raised or swollen. Cutaneous T-cell lymphomas make up around 75 percent to 80 percent of all cutaneous lymphomas.

What Does a Lymphoma Rash Feel Like?

Lymphoma rashes can be localized or occur all over the body (also referred to as erythroderma). A cutaneous T-cell lymphoma called mycosis fungoides is responsible for around half of all skin lymphomas. In its early stages, mycosis fungoides is sometimes mistaken for psoriasis or eczema. “I was itching very bad from my neck to my feet. I went to nine different doctors [and] they all misdiagnosed me,” one member reported.

Lymphoma rashes are also called lesions. They are divided into three categories: patches, plaques, and tumors. Patches are flat, smooth, or scaly to the touch and look like a typical rash. Plaques are harder, thicker, and scaly to the touch. Tumors are raised bumps or nodules.

Sézary syndrome (Dermnet NZ)

Sézary syndrome (Dermnet NZ)

Erythrodermic (full-body) rashes are sometimes caused by Sezary syndrome, which makes up 15 percent of cutaneous lymphomas. The rash can feel hot, sore, and itchy. It is usually much more aggressive than mycosis fungoides. Cancerous lymphocytes are present in the blood in Sezary syndrome, but not with mycosis fungoides.

How Does a Rash Affect People With Lymphoma?

Members of MyLymphomaTeam described a variety of ways rashes have affected their lives. “This rash and itching is getting so frustrating. I can’t sleep well,” one MyLymphomaTeam member said. Another mentioned the difficulty a family member had with a rash. “I am always searching for information and ways to ease his pain and itching.” A third member who was reportedly in remission mentioned frustration with a possible recurrence. “I’m so irritated; I have new spots and went to a dermatologist and they tried to tell me that it’s eczema.”

What Causes a Lymphoma Rash?

Cutaneous lymphoma forms in the small number of lymphocytes that are present in the skin. A rash occurs when those lymphocytes mutate, become cancer cells, and grow uncontrollably. It is not considered a skin cancer because the initial source of cancer cells come from the lymphocytes instead of the skin cells themselves.

Skin Treatments for Lymphoma Rashes

Treatment options depend on what type of lymphoma is causing the rash. Most types of cutaneous lymphoma are slow progressing, and some cases never progress past the skin. Because of this, the American Cancer Society’s recommended treatments first target the skin. There are several different types of skin-directed therapies.

Topical Corticosteroids

Topical corticosteroids are the first line of treatment, like with many other skin conditions. The anti-inflammatory agents in them also kill lymphoma cells. They can be creams or ointments applied directly to the skin or injections given directly into affected areas. In addition to treating the rash, topical corticosteroids can decrease itching. Side effects can include skin thinning and hair growth. When used over a long period of time, they can affect the adrenal glands.

Topical Chemotherapy

Topical chemotherapy agents are usually given along with corticosteroids. Mechlorethamine is the most commonly used, and it works by blocking DNA replication in cancer cells. It is applied as a gel to the affected area. When used as a topical solution, it is not known to enter the blood. About 10 percent of those who are treated with Mechlorethamine develop contact dermatitis, a localized allergic reaction.

Another drug, Carmustine, is occasionally used as a supplement to Mechlorethamine. Unlike Mechlorethamine, it can be absorbed into the blood. Monitoring by a dermatologist is needed at higher doses.

Topical Immunotherapy

One commonly used drug is Imiquimod. When it is applied to the skin, it has been shown to clear cutaneous lymphoma lesions.


Retinoids are synthetic vitamin A medications that can cause certain types of cells to die. Retinoids are usually used when topical corticosteroids and chemotherapy agents are not effective. Since they can cause birth defects, women using the drug should not become pregnant.


Phototherapy uses two types of UV light (A and B) to destroy cancer cells. If UVA light is used in treatment, Psoralen drugs are used in conjunction with it. Psoralens make the skin more sensitive to UV light. UVB does not require any drug administration before treatment, but it is used on thinner lesions only. “I am getting UVB light therapy every Wednesday, but every time I get it, more rashes come out,” a MyLymphomaTeam member said.

Radiation Therapy

Two different types of radiation therapy are commonly used. Total skin electron beam (TSEB) therapy penetrates only a few layers of skin and does not have the severe effects of more invasive radiotherapy. Brachytherapy places radioactive isotopes under the skin for a period of time.

Systemic Treatments for Lymphoma Rashes

If Sezary syndrome is present, skin-based treatments are not used because the condition also affects the blood. Instead, systemic treatments target the whole body. Many of these treatments are similar to skin-based ones.


Interferons are cytokine compounds normally produced by cells as a response to disease. Interferons are typically injected three times a week for three to six months.


These are taken as an oral medication and not applied to the skin, but they work the same way as topical ones.

Histone Deacetylase (HDAC) Inhibitors

Histone deacetylase inhibitors work by targeting cells’ DNA in a way that allows cancer cells to die. The most commonly used drugs are vorinostat (Zolinza) and romidepsin (Istodax). Both are given intravenously. One MyLymphomaTeam member described a family member’s treatment with romidepsin, “She went for her initial treatment last Thursday and it seems to be working. Her itching has subsided significantly. Very slight side effects.”

Extracorporeal Photopheresis

Extracorporeal photopheresis takes white blood cells out of a sample of a person’s blood, exposes them to UV light, and puts them back into the bloodstream. The treated cells then act against the cancerous ones.


The most commonly used biologics to treat cutaneous T-cell lymphoma are monoclonal antibodies, which are developed to recognize specific types of cancer cells. Brentuximab vedotin (Adcetris) has been used to treat advanced cutaneous T-cell lymphoma. It works by targeting an antigen found on cancerous T cells.


While often used in combination to treat other cancers, chemotherapy agents are often used as “single agents” — one at a time — to treat cutaneous T-cell lymphoma.

Stem Cell Transplant

The only known cure for cutaneous lymphoma is a bone marrow transplant, also known as a stem cell transplant. Since this is a risky procedure, it is typically only done when the condition is very advanced or has come back repeatedly after other treatments.

MyLymphomaTeam Members’ Tips for a Lymphoma Rash

MyLymphomaTeam members have shared a variety of ways of dealing with rash. “You need treatment and creams to deal with the overwhelming itching,” one advised.

Specific topical treatments were mentioned by others:

  • “Use a good skin cream, a steroid cream of 0.05 percent.”
  • “I use a script from my dermatologist: 0.05 steroid cream, and every day I also use a good skin cream.”
  • “Using aloe vera now helps with inflammation and itching.”
  • “Try cannabis oil or cream.”
  • “My doctors at UC Davis in Sacramento and University of California, Sacramento, gave me a prescription of triamcinolone acetonide ointment USP, 0.1 percent. … This medicine took care of the rash.”

Nutritional measures helped ease the rash symptoms for one member. “I juice at times. (I mix carrots, celery, kale/spinach, apple, orange and lemon juices, mixed with berries like blueberries, raspberries, and strawberries; and add some ginger and turmeric). I walk daily (get out in the fresh air) and use an elliptical and weight machines.”

Find Your Team

You are not alone. When you join MyLymphomaTeam, you gain a support network of more than 12,000 people who understand what you’re going through.

Have any questions about rash and lymphoma? Do you have any tips for dealing with a rash? Comment below or start a conversation on MyLymphomaTeam.

Four Factors That Impact a DLBCL Treatment Decisions

Diffuse large B-cell lymphoma (DLBCL) treatment options may map differently depending on various patient factors. In the “Which Factors Impact DLBCL Treatment Decisions?” program, expert Dr. Justin Kline from University of Chicago Medicine explains key patient factors that effect DLBCL treatment decisions.

1. DLBCL Stage

The stage of diffuse large B-cell lymphoma (DLBCL) is a key factor in treatment decisions. Early stage DLBCL usually has more treatment options for patients. While later stage DLBCL – and other cancers – normally have fewer options since patients in later stages may have failed to show success with some previous treatments. Of course, other patient factors will impact the number of treatment options for each stage.

 2. Patient Age

DLBCL specialists will take age into account in treatment options. However, a patient’s age does not necessarily rule out an aggressive treatment option. Full dose therapy may still be prescribed for elderly patients even in their 80s when curing DLBCL is the overriding goal of treatment.

3. Health Issues

DLBCL treatment options must also take into account other health issues of the patient. Considerations like heart health, kidney health, physical fitness, and medical problems like diabetes and high blood pressure must be considered. In addition, the patient’s DLBCL symptoms must be weighed in the analysis for treatment decisions.

4. Quality of Life

The quality of life of a specific DLBCL patient must also be evaluated in treatment decisions. Quality of life is examined in two different situations. One situation involves treatment side effects. Treatment side effects can vary by treatment and commonly include issues like fatigue, nausea, vomiting, constipation, hair loss, mouth sores, and immune suppression among others. The second way that quality of life can come into play is for elderly patients or those who have many health issues. In these cases, a more gentle, palliative approach may be taken to maintain a better quality of life rather than a very aggressive approach that would be very difficult on the patient.

DLBCL treatment decisions take several factors under consideration for optimal patient care. If you’d like to learn more about DLBCL care and treatment, check out our DLBCL information.

What Should Patients Know About DLBCL Treatment and Research? Resource Guide

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Blood Cancer Awareness Month 2022

Five Things You Need to Know As a Newly Diagnosed Follicular Lymphoma Patient

What’s important for newly diagnosed follicular lymphoma patients to know? In the “Follicular Lymphoma Treatment Decisions: What’s Right for You?” program, expert Dr. Tycel Jovelle Phillips from the University of Michigan Rogel Cancer Center shares five things newly diagnosed follicular lymphoma patients should know about your care and treatment.

 1. Understand How Follicular Lymphoma Progresses

Follicular lymphoma progresses from stage I through stage IV, though you may be diagnosed after it has progressed past early stages. Stage I is when the cancer is localized to one area, stage II is on one side of the diaphragm, stage III is on both sides of the diaphragm, and stage IV could involve progression into an organ. The grade of follicular lymphoma indicates how large the cancer cells look under a microscope, starting with grade 1 and then grade 2, grade 3A, and grade 3B. 

 2. Learn About Factors in Treatment Decisions

Several factors can play into follicular lymphoma treatment decisions. A patient’s age, overall health, comorbidities, treatment side effects, and treatment goals must be considered in treatment options. Patients in early stages may have a more aggressive treatment approach, while later stage patients may have a treatment approach that prioritizes quality of life. But the age and physical condition must also be considered in the treatment approach. Make sure to talk to your doctor about any concerns you have about factors under consideration for your treatment options. 

3. Know What to Expect for Treatment

Starting treatment for follicular lymphoma immediately is not always a given. Your doctor or care team may sometimes advise a period of watch and wait to monitor your progression instead. Reasons for waiting may include things like avoiding treatment side effects when there would be little benefit to fighting the cancer at its current stage.

4. Understand Your Role As a Patient

Follicular lymphoma patients now have more options to learn about treatment options. You can talk to patients and experts on social media or support groups to build foundational knowledge  about available treatments. Also, getting second opinions is no longer the taboo that it used to be. In fact, many follicular lymphoma specialists also encourage their patients to get second opinions, since there is not currently a standard of care. Patients should not feel like you’re doing something wrong by seeking a second opinion.

5. Discover Why It’s Important to Speak Up

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer.

By taking time to learn more about their care and treatment, follicular lymphoma patients can gain confidence to work toward the best care for your unique situation.

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Three Ways to Partner in Your Waldenström Macroglobulinemia Care

How can Waldenström macroglobulinemia (WM) patients become partners in their care? In the “Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?” program, expert Dr. Jorge Castillo from Dana-Farber Cancer Institute shares three key ways that WM patients can take a more active role for optimal health outcomes.

1. Ask Your Doctor When the Appropriate Time to Treat Is

WM patients can often remain in the watch-and-wait phase of their disease for many years, but it’s important for the oncologist to monitor the patient during this time. Ask your doctor when the appropriate time to treat will be, make sure that your bloodwork is monitored on a regular basis, and report how you’re feeling and all of your symptoms.

 2. Establish Your Treatment Goals and Plan

Depending on each Waldenström macroglobulinemia patient, treatment goals may vary depending on the patient age, overall health, lifestyle, and other factors. Work together with your healthcare team to determine your treatment goals and then learn about treatment options. Take action to both ask your WM provider about treatment options and ask about credible Waldenström macroglobulinemia online resources to do further research. And then discuss your treatment options with your WM provider to determine the best treatment for you.

3. Become a Proactive Patient

WM patients can take actions to further advocate for their best care. Educate yourself about your condition by reading credible online resources like International Waldenstrom’s Macroglobulinemia Foundation, Lymphoma Research Foundation, and The Leukemia & Lymphoma Society. Bring a friend or family member to your appointments with your Waldenström macroglobulinemia doctor to help take notes or to ask questions – and make sure to advocate for yourself if you feel ignored or unheard.

By taking a more active role in their care, Waldenström macroglobulinemia patients can help determine the best treatment plan for optimal health outcomes.

Waldenström Macroglobulinemia Treatment Decisions: What’s Right For You? Resource Guide

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Waldenström Macroglobulinemia Patient First Office Visit Planner

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Waldenström Macroglobulinemia Patient Follow-Up Visit Planner

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