Why Is Lomustine So Hard to Find? [Explained for 2026]

If you or a loved one has been prescribed lomustine (brand name Gleostine) for a brain tumor or Hodgkin's lymphoma, you may have discovered something alarming: this critical chemotherapy drug can be genuinely difficult to obtain. Pharmacies that stock it are limited, insurance coverage is spotty at best, and the price has risen dramatically over the past decade. This article explains exactly why lomustine is hard to find and what patients can do about it in 2026.

What Is Lomustine and Who Needs It?

Lomustine is an oral chemotherapy drug in the nitrosourea class of alkylating agents. It has been FDA-approved since 1977 and is one of the few chemotherapy drugs that can effectively cross the blood-brain barrier, making it particularly valuable for brain cancer treatment. It is used for primary and metastatic brain tumors (including glioblastoma) and for relapsed or refractory Hodgkin's lymphoma.

Lomustine is taken as a single oral dose once every 6 weeks — a dosing schedule that reflects both its clinical effectiveness and its powerful toxicity profile. Because an overdose can be fatal, pharmacies dispense only one dose at a time. The drug comes in 5 mg, 10 mg, 40 mg, and 100 mg capsules, and a patient's dose may require taking several capsules of different strengths together.

Why Did Lomustine Become a Sole-Source Drug?

The root of the problem goes back to 2013, when Bristol-Myers Squibb discontinued production of CeeNU — the original brand of lomustine it had manufactured for decades. This created an immediate shortage of a drug that brain cancer and lymphoma patients depended on.

NextSource Biotechnology stepped in, acquired the manufacturing rights in partnership with CordenPharma, and relaunched the product in 2014 under the brand name Gleostine. While this resolved the physical shortage, it created a different kind of access problem: NextSource became the sole source of lomustine in the United States, with no generic competition at the time.

The Price Problem: A 1,900% Increase

As the sole U.S. manufacturer, NextSource dramatically increased the price of lomustine. By July 2021, the price of the highest-dose version had risen approximately 1,900% compared to 2013 prices under Bristol-Myers Squibb. A group of U.S. senators demanded answers in 2018, noting a 1,400% price increase in just four years. The drug, which had been an affordable generic-class chemotherapy agent for decades, became one of the most expensive oral chemotherapy drugs on the market.

Today, the brand-name Gleostine retails for approximately $600–$2,950 per dose depending on strength, and only one dose is dispensed at a time every 6 weeks. Even with discount programs, many patients face costs in the hundreds to thousands of dollars per dose.

Why Medicare and Medicaid Don't Cover It

In an unprecedented move at the start of 2021, NextSource Biotechnology withdrew lomustine from the Medicare Part D drug program and the Medicaid rebate program. This was the first time in history that a company with a drug eligible for Medicare Part D coverage voluntarily left the program.

The impact was severe. The median age for patients with glioblastoma — the most common malignant brain tumor — is 65, meaning the decision to leave Medicare directly affected approximately half of all glioblastoma patients. Oncologists at institutions like Dana-Farber Cancer Institute and Duke University publicly stated that patients were going without the drug as a result.

Is There a Generic Version of Lomustine?

The FDA has approved a generic version of lomustine (Gleostine), but FDA approval doesn't automatically mean the generic is available on pharmacy shelves. Lomustine is a specialty chemotherapy drug, meaning it is typically not stocked at every retail pharmacy. Even pharmacies that carry it may only have certain strengths and may need to order specific doses.

With GoodRx coupons, generic lomustine may be available for as low as $672 for certain doses — significantly less than the brand-name price, but still a major cost for a drug taken every 6 weeks throughout a cancer treatment course.

Where Are the Pharmacy Access Challenges?

Because lomustine is a specialty chemotherapy agent — dispensed one dose at a time and requiring careful handling — it is not routinely stocked at most retail pharmacies. Patients often need to:

Call multiple pharmacies to find one that carries it or can order it

Work through specialty pharmacies affiliated with cancer centers

Navigate complex insurance prior authorization requirements

Apply for patient assistance programs that may take weeks to process

For a patient who needs lomustine on a specific treatment schedule — every 6 weeks exactly — delays in finding the drug can mean missed doses and disrupted cancer treatment.

How medfinder Can Help You Find Lomustine

When every dose matters, you can't afford to spend days calling pharmacies. medfinder calls pharmacies near you to check which ones have your medication in stock. You provide your medication name, dosage, and location — medfinder does the calling, and results are texted directly to you. It's a faster, less stressful way to locate a pharmacy that can fill your lomustine prescription.

What About Alternatives to Lomustine?

In some cases, your oncologist may consider alternative therapies such as temozolomide, carmustine, or bevacizumab if lomustine is not accessible. However, these are not interchangeable in all situations — your oncologist needs to make this determination based on your specific cancer type, treatment history, and molecular profile. See our guide to lomustine alternatives for more detail.

Key Takeaways

Lomustine is not in a traditional FDA shortage — but it has serious access barriers due to its sole-source status, high price, and limited pharmacy availability.

Medicare and Medicaid don't cover it since NextSource withdrew in 2021, making it especially hard for older patients.

Generic lomustine exists but is not always available at retail pharmacies — specialty pharmacies may be needed.

Patient assistance programs are available and can help reduce costs significantly for qualifying patients.

For practical tips on locating lomustine at a pharmacy near you, read our full guide: How to Find Lomustine In Stock Near You