Our resource pages provide important information to patients and physicians. On this and other resource pages, are details about your initial visit to our cutaneous lymphoma clinic as well as descriptions of some of the treatments that you may be made aware of during your visit.
We look forward to meeting with you in the near future. We hope your visit to our clinic will be a positive experience. With your assistance, we can maximize the benefit of your visit by having you obtain various items prior to coming. Here is a list of items to bring with you and details to keep in mind:
- Complete medical records, including Past Medical History and Family History
- Detailed written list of current medications
- Full details of any history of allergic reactions to medications
- Any prior therapies for your present condition (including name of medication, dose of medication, length of use. If you received therapy other than medications, we are interested in these details as well. For example, if you received radiation therapy, we would like to know the name of the physician, name of the center where you received the therapy, and most importantly, a copy of the treatment summary)
- Name, address, phone number, and FAX of all your physicians
- Copy of your insurance information
- Copy of any laboratory tests, radiology tests, and pathology reports
- If you can obtain an actual copy of the radiology films to bring with you to your visit, this is preferable
- The actual slides of any pathology samples (skin, lymph node, or bone marrow for example) must be brought with you to the initial visit. Skin is most important.
- Having records, tests, slides sent to our institution by FAX or mail is not preferable.
Instructions for the Patient - First Visit cont'd
We also would like for you to be prepared for the expected events of the day. You will be meeting with our entire multidisciplinary team, which includes our faculty, clinical fellows, dermatology residents, nurses, and research assistants. In addition, physicians from important collaborating fields, such as pathology, radiation oncology, and medical oncology will be present. Meeting several individuals at once can be a bit intimidating; however, every person you meet is a key figure in your care. In addition, please be prepared for at least a half day visit if not longer. We like to spend significant time reviewing your history and records (including scans and biopsy slides), speaking with you, performing a proper examination, and allow you to meet all the people important in your care. We hope to confirm or establish a diagnosis on the day of your visit, so we can discuss your condition with you and initiate therapy; however, we may require additional tests or procedures the day of your visit, so we would like for you to be prepared for this.
Feel free to contact us with any questions or concerns prior to your visit.
Handouts & Brochures
- Cutaneous T-Cell Lymphoma Facts - Leukemia and Lymphoma Society - Helpful information about Cutaneous T-cell lymphomas (CTCL).
- Soak and Smear - Instructions for patients - Many dermatologic conditions are manifested by dry, irritated and itchy skin. Soak and Smear is a simple, inexpensive, standard technique that is an effective topical treatment.
- Zolinza: Information for Patients - Zolinza (vorinostat capsules) is a prescription medication used to treat a type of cutaneous lymphoma called mycosis fungoides/Sezary syndrome.
- ISTODAX (Romidepsin) - Patient Information - Istodax is a prescription medicine used to treat people with a type of cancer called cutaneous T-cell lymphoma (CTCL) after at least one other type of medicine by mouth or injection has been tried.
- Photopheresis - Photopheresis (ECP) is a type of medical therapy that can be used in treating patients with problems associated with cutaneous (skin) T-cell lymphoma (CTCL) such as mycosis fungoides (MF) or Sezary syndrome.
- Topical nitrogen mustard - Topical nitrogen mustard (mechlorethamine), also called Mustargen™ or NM, is a commonly used topical chemotherapy agent that is prescribed to patients with mycosis fungoides (MF).
Patient on Targretin®
We have recommended oral Targretin® therapy for your patient. Targretin® (bexarotene) is a retinoid medication that is approved for the treatment of Cutaneous T-cell Lymphoma (CTCL).
Information for the Physician
We have recommended oral Targretin® therapy for your patient. Targretin® (bexarotene) is a retinoid medication that is approved for the treatment of Cutaneous T-cell Lymphoma (CTCL). It is supplied as 75 mg capsules which should be taken with a meal (dinner is usually preferred). The recommended dose is 200-300mg/m 2 /day. At Stanford, we recommend starting at a dose of 150-300mg daily and increasing the dose by 75-150 mg every 1-2 weeks as tolerated until the maximum desired dose of 200-300 mg/m2/day is attained. Of note, the maximum desired dose is dependent on severity of disease and other medical conditions, for example renal insufficiency, hepatic insufficiency, diabetes mellitus, a history of hypertriglyceridemia or pancreatitis , and the concurrent use cytochrome P450 inhibitors or inducers.
Targretin® use is commonly associated with reversible hypertriglyceridemia and centrally-induced hypothyroidism. Thus, baseline fasting lipids and free T4 levels should be obtained prior to initiating therapy with Targretin®. At Stanford, we suggest prophylactically treating patients with an anti- lipemic medication and thyroid hormone replacement starting 7-10 days prior to initiating treatment with Targretin®. The anti- lipemic medications that are most effective for hypertriglycerdemia are atorvastatin ( Lipitor®) and fenofibrate ( Tricor®). Anti- lipemic medication doses should be increased and maximized as needed. Atorvastatin and fenofibrate use may be combined; however, their concurrent use warrants cautious monitoring due to a potential risk of myopathy and rhabdomyolysis with renal failure.
GEMFIBROZIL (LOPID ®) USE IS CONTRAINDICATED WITH TARGRETIN © USE due to elevated Targretin® levels and extremely high triglyceride levels.
Levothyroxine should be started at a dose of 50 mcg daily and the dose adjusted as needed. Of note, free T4, not TSH , should be monitored since the hypothyroidism associated with Targretin® use is centrally-induced.
Less commonly, reversible cytopenias (mostly leukopenia ) and liver function test abnormalities can be seen. Rare cases of acute pancreatitis have also been reported in association with marked elevations of fasting serum triglycerides.
Monitoring and adjusting Targretin® after initiation involves careful monitoring by the prescribing physician. Blood tests including fasting lipids, free T4, LFTs , and CBC should be obtained prior to initiating any therapy. After starting therapy with Targretin® , fasting lipids levels should be checked weekly and LFTs should be checked every 4 weeks. A CBC and free T4 should be checked 4 weeks after starting Targretin® . Once the lab values stabilize and maximum medication doses are achieved, fasting lipid levels should be checked monthly and free T4, LFTs , and CBC should be checked every 1-2 months. If the triglyceride level is above 600 mg/ mL , we recommend suspending the Targretin® for 7 days and maximizing the anti- lipemic medications. After normalization of lipid levels to a reasonable range (varies depending on patient's concurrent medical conditions), restart the Targretin® at half the suspended dose and then increase the dose incrementally as described above. After any change in the Targretin® dose, check the fasting lipids weekly for 4 weeks until they stabilize and then monthly as described above.
The development of new cataracts or the worsening of previous cataracts is rare, but a potential risk associated with the use of Targretin® . We recommend an ophthalmologic evaluation prior to initiating therapy and then periodically during therapy or if the patient develops visual difficulties.
TARGRETIN ® IS CATEGORY X. PREGNANCY IS A CONTRAINDICATION.
The most common symptomatic side effects reported are fatigue/lethargy, headache, asthenia, rash, nausea, abdominal pain, infection, peripheral edema and dry skin.
Please review the package insert for Targretin® capsules.
Feel free to contact us with any questions or concerns.
Information for the Physician
Topical nitrogen mustard (Mustargen, mechlorethamine) can be used either mixed in Aquaphor ointment by a trained pharmacist or compounded in water by patients at home prior to application. The water preparation of Mustargen is unstable and needs to be used immediately, whereas the ointment preparation of Mustargen is stable for a few months. We prefer Mustargen compounded in the ointment base because of the lower incidence of contact dermatitis, stability of the formulation, and additional moisturizing benefit.
Topical nitrogen mustard can be compounded at various strengths. Standard dosing we use at Stanford includes, 10mg%, 20mg%, 30mg%, or 40mg%; however, there are certainly situation where we would use a lower or higher concentration. The amount dispensed will depend on the amount your patient requires. 400 grams is usually our upper limit because a patient can apply Mustargen once a day to the entire body for a month with 400 grams.
Topical Nitrogen mustard is dispensed in mg% concentrations. To give an example of how to write a proper prescription for Mustargen , we have provided the following cases:
Example 1: 50 year old woman with Stage IB Mycosis Fungoides involving approximately 30% of her body surface area returned to our clinic for follow-up. She has been applying 10mg% Mustargen once daily from her neck to her feet with a good clinical response and no side effects to report. At this visit, we recommended increasing the Mustargen to 20mg% to be applied once daily from her neck to her feet. Our prescription would be written as:
Mustargen ointment 20mg%. Please mix 80 mg of Mustargen with 400 grams of Aquaphor ointment. Quantity: 400 grams.
Example 2: 70 year old male with Stage IA Mycosis Fungoides involving the bilateral buttock. The remainder of the skin examination is within normal limits. The patient has not received any therapy yet. We would like to start topical Mustargen at 10mg% to be applied to the bathing trunk area once a day. We estimate he will require 200 grams every 4-6 weeks. Our prescription would be written as:
Mustargen ointment 10mg%. Please mix 20 mg of Mustargen with 200 grams of Aquaphor ointment. Quantity: 200 grams.
We illustrate this point because the mg% dosing may cause confusion, which could lead to sub-therapeutic concentrations or excess concentrations dispensed to the patient.
We recommend to the patient, application of a small amount of Mustargen to a selected test-patch on your skin, once a day, for 7-10 days to rule out the possibility of a contact dermatitis. The test-patch can be a palm-sized patch on your arm, leg, or trunk.
If there is no significant irritation, new rash, or increased redness or itching, we recommend application of the Mustargen to all areas as planned.
We like to emphasis to the patient a very thin film of Mustargen to the skin is sufficient. Application of copious amounts to the skin has no additional benefits.
The Mustargen is maximally absorbed usually within the first hour after application, but we usually ask the patient to leave the medication on for at least four hours.
The use of additional moisturizing lotions, creams, or ointments throughout the day is always recommended. (This is especially important if you are using the water preparation, since the skin will likely be more xerotic.)
Please do not hesitate to call us if you have any questions.
Local pharmacies with compounding services close to Stanford:
Safeway Los Altos Compounding Pharmacy
225 2nd Street
Los Altos, CA 94022
Phone: (650) 948-1212 / (650) 949-8662
Fax: (650) 949-2269
Avella Specialty Pharmacy - Greater Sacramento Area
Phone: (877) 546-5779
Fax: (877) 546-5780