What is the life expectancy of someone with mycosis fungoides?

The overall survival and disease-specific survivals of our 525 patients with MF are shown in Figure 1. The median survival was 11.4 years, and the actuarial overall survival rates at 5, 10, and 30 years were 68%, 53%, and 17%, respectively. The median follow-up time was 5.5 years (range, 0.1-38.5 years).
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How fast does mycosis fungoides progress?

Consequently, the overall average disease duration in progressing patients is 12.4 years. Blast transformation occurs in 85% of all cases in the tumor stage. Conclusions: The course of progressing MF is chronic and advancing. The progression is initially slow and later accelerates.
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What is the survival rate of mycosis fungoides?

Survival in stage IB mycosis fungoides is significantly reduced in up to one in five patients, with death within 5 years of diagnosis. Survival is poor in advanced mycosis fungoides and Sezary syndrome, and 5-year survival rates range from 20–60%.
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Can you survive mycosis fungoides?

Mycosis fungoides is an indolent cutaneous T-cell lymphoma. Long term survival is common among patients in the early stages, but deaths from this disorder regrettably remain common among those with more advanced disease.
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What is the best treatment for mycosis fungoides?

Treatment methods for mycosis fungoides include photochemotherapy (PUVA), topical steroids, short courses of UVB (during winter months), a drug known as topical nitrogen mustard (mechlorethamine), interferons, oral retinoid therapy, and/or photopheresis.
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Virtual Patient Conference: Mycosis Fungoides



What causes mycosis fungoides to flare up?

Mycosis fungoides occurs when T-cell lymphocytes become cancerous. When these cancerous lymphocytes circulate in the blood, they are called Sézary cells. Sézary syndrome occurs when you have large numbers of T-cell lymphocytes — called Sezary cells — in the blood that can go to the skin and lymph nodes.
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Can mycosis fungoides go into remission?

Mycosis fungoides is rarely cured, but some people stay in remission for a long time. In early stages, it's often treated with medicines or therapies that target just your skin.
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Does mycosis fungoides always progress?

Mycosis fungoides usually occurs in adults over age 50, although affected children have been identified. Mycosis fungoides may progress slowly through several stages, although not all people with the condition progress through all stages.
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How often does mycosis fungoides progress?

Consistently, the results of this and other recent studies10,12,13 indicate that the risk of disease progression within the first 10 years after diagnosis is about 5% to 10% for patients with stage Ia and between 17% and 39% for patients with stage Ib disease.
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What are the stages of mycosis fungoides?

Mycosis fungoides may go through the following phases:
  • Premycotic phase: A scaly, red rash in areas of the body that usually are not exposed to the sun. ...
  • Patch phase: Thin, reddened, eczema-like rash.
  • Plaque phase: Small raised bumps (papules) or hardened lesions on the skin, which may be reddened.
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How long can you live with T-cell lymphoma?

Overall, people with non-Hodgkin lymphoma (including T-cell lymphoma along with other types) have a five-year RS of 66.9 percent. Those with T-cell NHL specifically have a slightly lower survival rate of 63.1 percent.
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Can mycosis fungoides come and go?

Classic mycosis fungoides

They can disappear spontaneously, stay the same size or slowly enlarge. They are most common on the chest, back or buttocks but can occur anywhere. They are often mistaken for more common skin conditions, such as eczema or psoriasis, sometimes for many years.
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How long can you live with skin lymphoma?

Patients who have stage IIB disease with cutaneous tumors have a median survival rate of 3.2 years (10-year survival rate of 42%) Patients who have stage III disease (generalized erythroderma) have a median survival rate of 4-6 years (10-year survival rate of 83%)
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Does mycosis fungoides cause fatigue?

The majority of respondents had mycosis fungoides (89%). Respondents were bothered by skin redness (94%) and by the extent of symptoms that affected their choice of clothing (63%). For most patients, the disease had a functional impact, rendering them tired or affecting their sleep.
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What does mycosis fungoides look like?

In its earliest form, mycosis fungoides often looks like a red rash (or scaly patch of skin). It begins on skin that gets little sun, such as the upper thigh, buttocks, back, belly, groin, chest, or breasts.
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Is there a blood test for mycosis fungoides?

A sign of mycosis fungoides is a red rash on the skin. In Sézary syndrome, cancerous T-cells are found in the blood. Tests that examine the skin and blood are used to diagnose mycosis fungoides and Sézary syndrome.
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Is mycosis fungoides a non-Hodgkin lymphoma?

Mycosis fungoides (MF) constitutes the most common primary cutaneous T cell lymphoma. Its classic form is defined as an indolent CD4+ non-Hodgkin lymphoma which manifests itself initially as scaly patches that may evolve into plaques and/or tumors. Multiple clinicopathological variants have been reported.
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Is mycosis fungoides caused by a fungal infection?

The name mycosis fungoides is very misleading—it loosely means "mushroom-like fungal disease". The disease, however, is not a fungal infection but rather a type of non-Hodgkin's lymphoma. It was so named because Alibert described the skin tumors of a severe case as having a mushroom-like appearance.
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Is mycosis contagious?

It is not an infection and cannot be passed from person to person. HOW COMMON IS MYCOSIS FUNGOIDES? As a group, CTCL is a rare family of diseases.
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Is cutaneous T-cell lymphoma treatable?

T-cell lymphoma is not curable but it is treatable. Yale Medicine's Department of Dermatology offers expert, multidisciplinary care and advanced treatments, including phototherapy for this unusual type of lymphoma.
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What is the difference between mycosis fungoides and Sezary syndrome?

CTCLs are a type of non-Hodgkin's lymphoma. Other CTCLs, such as mycosis fungoides, mostly affect the skin in the form of a red rash. But in Sézary syndrome, cancerous lymphocytes (Sézary cells) spread from the skin to the blood. The cancer can also travel to the lymph nodes and other areas of the body.
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Is cutaneous lymphoma hereditary?

Some people inherit DNA mutations (changes) from a parent that increase their risk of developing some types of cancer. But lymphoma of the skin is not one of the cancer types often caused by inherited mutations. DNA changes related to lymphoma of the skin are usually acquired after birth, rather than being inherited.
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How common is cutaneous T-cell lymphoma?

CTCL is a rare form of T-cell lymphoma. There are about 3,000 new cases of CTCL in the U.S. each year, and about 16,000 – 20,000 Americans have mycosis fungoides.
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Is Hypopigmented mycosis fungoides curable?

Although the prognosis for HMF is generally good, HMF is a malignant skin tumor and should always be treated as such.
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Where do you itch with lymphoma?

Itching ('pruritus') is much more common with Hodgkin lymphoma than non-Hodgkin lymphoma.
...
Itching caused by lymphoma can affect:
  • areas of skin near lymph nodes that are affected by lymphoma.
  • patches of skin lymphoma.
  • your lower legs.
  • your whole body.
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