What You Need to Know about Non-Hodgkin Lymphoma

Medical oncologist Steven Horwitz discusses advances in the diagnosis and treatment of non-Hodgkin lymphoma.
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“Getting the correct diagnosis, determining what kind of lymphoma you have, and confirming where it is in the body, or staging, are important steps in developing the most effective treatment plan,” says medical oncologist Steven Horwitz, who is one of more than 30 experts who care for people with lymphoma at Memorial Sloan Kettering. “Consultation with an experienced physician who specializes in lymphoma is critical, especially when a rare type of lymphoma is diagnosed.”

Memorial Sloan Kettering and the online cancer community CancerConnect recently partnered to air a live webinar in which Dr. Horwitz offered this and other essential information regarding the diagnosis and treatment of lymphoma — a disease that encompasses nearly 60 related types of cancer that develop in cells of the immune system called lymphocytes.

He described how treatment could be tailored based on the unique molecular, clinical, and prognostic features that characterize each type of lymphoma.

Personalizing Treatment

A variety of laboratory tests are used to determine which specific subtype of Hodgkin lymphoma or non-Hodgkin lymphoma a patient has and whether the disease is indolent (low grade), intermediate, or high grade. Non-Hodgkin lymphoma subtypes are generally indolent, slow growing, and treatable, but are difficult to cure. Intermediate and high-grade lymphomas tend to grow more quickly, and though aggressive, are curable and unlikely to recur.

A biopsy is performed in order for a pathologist to analyze a patient’s cancer cells under a microscope and distinguish lymphomas based on the appearance of the cells, their surface features (called immunochemistry), and their genetic features. Different genes are expressed, or turned on, in different cells, and certain gene patterns are known to be correlated with certain kinds of lymphoma. Experts are increasingly understanding how these features can affect prognoses and treatment choices.

“Teasing out these gene expression signatures, combined with other molecular and clinical details we obtain during the diagnostic workup, helps us determine which treatment will be most effective for a particular patient,” says Dr. Horwitz.

Imaging tests such as CT and PET scans are used to ascertain staging, providing information about where in the body the lymphoma is, how extensively it has spread, and whether or not the lymphoma is in the bone marrow. They can also be used to show how well a treatment is working, monitor someone who is in remission, and observe for signs of disease progression in a person who has chosen to delay therapy.

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Choosing Active Therapy or Watchful Waiting

The majority of lymphomas can be effectively managed with active treatment. Chemotherapy and chemo-immunotherapy are the most common treatments for lymphoma, but optimal treatment may consist of other therapies such as radiation, stem cell transplant, targeted therapies, radio-immunotherapy, or investigational agents. These can be used alone or in combination, and all have the potential to cause side effects.

Consultation with an experienced physician who specializes in lymphoma is critical, especially when a rare type of lymphoma is diagnosed."
Steven Horwitz Medical oncologist

Indolent lymphomas may grow very slowly, remain stable, or even sometimes shrink on their own without treatment. Some people can live with an indolent lymphoma as a chronic problem for a decade or more before requiring therapy. Delaying active treatment, also known as watchful waiting or active surveillance, is a dynamic disease management option in which a patient is regularly monitored for signs or symptoms of disease progression.

“There is no evidence that treating these types of lymphoma sooner improves prognosis,” says Dr. Horwitz. “Active surveillance may be a reasonable approach among patients whose disease is unlikely to be cured with treatment, are medically able to delay therapy, and who would like to avoid the risks and unpleasant side effects associated with many cancer therapies.”

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Considering New Therapies and Clinical Trials

“Understanding standard treatment options and how and when to access novel and innovative therapies is essential in order to achieve the best outcome,” explains Dr. Horwitz. “If standard treatments are not likely to work, thinking about a new treatment being studied in a clinical trial may be recommended.”

Immunomodulatory agents — targeted therapies that help the patient’s own body fight lymphoma by enhancing antitumor activity — are more frequently being used to treat people with non-Hodgkin lymphoma.

Monoclonal antibodies bind to certain proteins on the surface of the cancer cell and recruit healthy cells in the immune system to kill the cancer cell or induce cell death. Other immunomodulatory agents can be used to take the breaks off of normal lymphocytes and unleash a response from the immune system to specifically attack the lymphoma cells.

Some monoclonal antibodies can deliver toxic molecules to cancer cells specifically. Miniscule amounts of chemotherapy or radiation can be attached to these antibodies, which bind to certain proteins on the cancer cell. Like a Trojan horse, they destroy the cell from within when it takes up the antibody along with the treatment.

Another targeted approach involves the use of small molecule inhibitors, which can interfere with abnormal signaling pathways — an internal cascade of events that causes cells to divide and grow uncontrollably and disrupts the cancer cell’s efforts to stay alive.

“Many of these targeted therapies are in the form of a pill and may have fewer side effects than chemotherapy, so people may continue to take them for longer periods of time,” Dr. Horwitz points out. “We may ultimately see targeted therapies added to chemotherapy or potentially even replace it in some cases.”

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Thank you for sharing updates in research. It is good to know progress is being made towards attacking lymphoma from different angles. I also am impressed with the research in identifying the different types of lymphoma and treating them accordingly. Thank you for sharing your research. I look forward to further updates.

In reading articles on NHL one has to read well into the information to realize they are discussing systemic NHL. It would be most helpful if up front the information would indicate it is systemic NHL. Those of who us are patients with PCNSL are mostly ignored. I am aware systemic is the overwhelming majority of cases treated and understand that bias. Please consider identifying
at the front of article that it is systemic. I have found this widespread, not just at MSKCC, but various medical journals . Thank You

Good information. I try to read all the information that I find because being well informed helps the fight.

Since I was diagnosed with nhl in spring 2011 and went into remission after 8 sessions of rchop I worry incessantly about a recurrence. Some days I almost forget about it and others filled with panic. Do other people have these feelings?

This is for Paula. My sister has nhl and has said the exact words you wrote above. She also has asked if it is normal to feel like this. I have told her it is and when anything is wrong fear and apprehension is justified. All the best to you Paula and continued good health.

i was diagnosed with nhl in 2011 and into the third round of treatment of c-chop and r-chop it was found that i am one in ten thousand that cannot have the rituxan it could kill me so i only got a year and a half of remission so now i am wondering would Immunomodulatory agents be a better way to try ?

Carl, unfortunately we are unable to answer specific medical questions such as this on our blog. We suggest you discuss this with your personal physician or oncologist, or if you would like to make an appointment with a Memorial Sloan Kettering physician, please call our Physician Referral Service at 800-525-2225 or go to http://www.mskcc.org/cancer-care/appointment. Thanks for your comment.

wouldn't you think that you would have a forum where people could go to talk about this and be able to get certain information about the disease why wouldn't we allow this type of cross reference to exist so that maybe just maybe someone may have the knowledge to share with someone that may help them in the quest to be cured instead of wasting web space for no information to help patients

Thank you for highlighting marginal zone lymphoma at the top of your NHL clinical trial list. In recent years, MZL and to some extent FL have not received the same clinical trial attention as some of the other B-Cell subtypes, as they are sometimes more treatable and (in the case of MZL) less common.

These trials are a nice change from all the promotion of SCT's that were advertised a few years ago, and for many people, these treatments may be good options. Also, with all the NHL expertise in NYC, it's nice to see healthy competition among centers.

As for the comment above from Carl on July 2nd, there are several resources for survivors to share information and provide mutual support on NHL/CLL. I am probably not at liberty to mention them on your site, but maybe this is a service the hospital could provide? Some of these are sponsored by blood cancer non-profits; others are just good groups that have developed on Yahoo blogs or others--- often with medical experts as participants.

Regarding the recent request for reliable opportunities to learn and network with others about lymphoma, there are several resources that I am aware of:

1. Patients Against Lymphoma:

PAL resources:
•Patients Against Lymphoma (PAL) website:
Non-profit 501 3c
With the help of scientific advisors, PAL provides support and evidence-based information on lymphoma and its treatments – with a focus on advancing the informed and routine consideration of clinical trials
•PAL forum (web-based support venue)
•PAL on yahoogroups (email-based support venue)
PAL forums protect privacy (not searchable on web) and provide active moderation with evidence-based standards.
•PAL mission statement:
•Webmagic – web-based support venue
Searchable on web

2. Lymphoma Reserch Foundation- provides patient education seminars led by doctors who are lymphoma experts and supported by centers such as MSKCC.

3. LLS- Leukemia & Lymphoma Society- provides excellent support groups and co-pay assistance for patients/survivors.

4. CancerCare- provides both general and specific cancer education webinars and conference calls, and also offers one-on-one social worker assistance. The webinars are usually led by doctors who are lymphoma experts.

5. For CLL, there is an active website known as CLL Forum. Other resources include the Yahoo CLL group, led by an expert doctor in New York, as well as Dr. Sharman's CLL/NHL Blog (which also covers NHL to some extent).

There are also resources through general cancer groups such as:
- Cancer Support Community
- Livestrong
- Imerman Angels (provides one-on-one support from another with similar cancer; this organization has worldwide reach).

For those scientifically inclined, ASH (American Society of Hematology) holds an annual conference, and abstracts can be obtained. ASCO (American Society of Clinical Oncology) offers similar; both organizations are excellent resources.

There are sites, such as www.lymphomahub.com, which show many of the new treatment agents in their present state of development.

The Stanford surgical site gives a thorough analysis on differential diagnosis.

www.clinicaltrials.gov is an excellent source of clinical trial information. In addition, many of the organizations listed above can help patients locate clinical trials.

For those interested in Stem Cell Transplants, www.bonemarrow.org is an excellent resource.

The National Cancer Instititute site is www.cancer.gov; a source of detailed information on trials, treatment agents, and others.

I'm sure there are others I'm forgetting.

Thanks and FYI,

You say that "Getting the correct diagnosis, determining what kind of lymphoma you have, and confirming where it is in the body, or staging, are important steps in developing the most effective treatment plan,” - but what happens when tests are unable to show the type of lymphoma a patient has? The only thing I know is that I have Stage 1 B Cell Lymphoma in my neck, but biopsies results have been inconclusive as to which type of B Cell Lymphoma it is or if it is agressive or indolent.

Dear Sue, we sent your inquiry to one of our medical oncologists specializing in the treatment of people with lymphoma, Dr. Steve Horwitz, and he responded:

“Yes, in general there are times when the tools we have are unable to specifically subtype the lymphoma either because the sample is too small to perform all the tests needed or the features are not specific or overlap between several types (the lymphoma hasn’t read the textbook and may lack defining features).

If the sample is too small it is best to try to get more tissue. If the problem is the lymphoma cannot be specifically put into one category, then one can see what are the choices (it may not be able to be placed as just one kind but it wouldn’t look like all kinds) or what is the differential diagnosis. The management of these uncommon situations must be highly individualized, taking into account the patient, location of lymphoma, and possible diagnoses.

If the differential (and the behavior) seems to include aggressive lymphomas (and the patient is able to tolerate such therapy) then one may plan a program to treat for that, i.e. appropriately treat an aggressive lymphoma and risk over-treating an indolent lymphoma. This would also be a good time for a further opinion, including review of the pathology.”

If you would like to make an appointment with one of our specialists for a second opinion, please call our Physician Referral Service at 800-525-2225. Thank you for your question.

My 23 yr old son was diagnosed with extranodal marginal zone Lymphoma. Treatment plan is to watch and wait. There are 2 physical symptoms in addition to immune deficiency problems. No clinical trials seem to fit the situation, and the possibility of IVIG could be introduced. Is it possible that IVIG could suppress the lymphoma?

Patty, we are not able to respond to individual medical questions on our blog. If your son would like to make an appointment for consultation with an MSK doctor, you can call 800-525-2225 during regular business hours or go to http://www.mskcc.org/cancer-care/appointment for more information. Thank you for your comment.

A family member was recently diagnosed with High-Grade B-Cell Lymphoma with the only clinical presentation of obstructive jaundice. Results of scan showed a 8+ cm mass that occupied the central liver that extended outward to other organs. FISH studies showed CD20 +, high Ki-67 and a germinal center phenotype. There is no MYC rearrangement. There are extra copies in/of the region of BCL2. Current treatment is with R-CHOP. They have been hospitalized for neutropenic fever and needed blood transfused. I am trying to find out any information that you may have to assist them and myself. I noticed that there are clinical trials for DLBCL and also trials for people above the age of 65. I have read that the presentation and the location of this lymphoma is a rare occurrence. Any information would be appreciated.

Dear Eli, we are sorry to hear that one of your loved ones has been diagnosed with lymphoma. Unfortunately, we are unable to provide medical advice on our blog. They would need to make an appointment with one of our specialists to see which treatment options, including clinical trials, they may be eligible for. To make an appointment and get more information, please call our Physician Referral Service at 800-525-2225. Thank you for your comment.

Belated response to Patty- MSKCC offers a large number of clinical trials listed under Marginal Zone Lymphoma, as well as stage 1 trials down at the bottom of the list. Since MZL is not very common, its' clinical trials are often included under indolent NHL, B-cell NHL, MALT, follicular NHL, and others. Therefore, the search process can be daunting for the experienced searchers, and even more so for those new to the process. Certain organizations, such as the Lymphoma Research Foundation, Livestrong, Leukemia & Lymphoma Society, can help you locate trials according to sub-type, whether seeking initial treatment vs. pretreated, etc. In addition to seeking potential clinical trials, you should seek expertise at MSKCC or another fine cancer center, as MZL is uncommon, your son is young for this and having autoimmune complications, MZL is generally very treatable.... and especially to get a pathological 2nd opinion of any biopsies that have been done, as well as blood work CT scans, etc.

I've just been diagnosed with lymphoma as part of kidney transplant procedure. The PET/CT scan was clear. Bone marrow biopsy says non hodgkins and think it is Waldenstrom. Second opinion asked for. Is it ever possible to have a kidney transplant with indolent lymphoma? Have I just been handed a death sentence?

I was just wondering if there have been any break through cures or treatments regarding gamma delta t cell lymphoma. My husband passed away from it 3 months ago At the age of 41. I am having a hard time of understanding WHY..

Dena, our deepest condolences for your loss. We are working on trying to understand this disease better, but nothing specific has yet been found as a therapy for testing in people. For questions about research into gamma delta t cell lymphoma, you might also call the National Cancer Institute’s Cancer Information Service at 800-4CANCER (800-422-6237). To learn more about the CIS, including Live Chat help and how to send them an email message, go to http://www.cancer.gov/aboutnci/cis/page3.

Have NHL stage V. Have been on CHOP chemotheraoy and then on maintenance chemo when large b cell lymphoma was diagnosed. Just tried immuno therapy drug on clinical trial. After several months ct scan reveals new cancer growth. What new trials are out there that have been shown to be effective in shrinking my type of tumors and can i schedule a consult with oncologist at MSK on the phone after providing all medical records.