Lymphoma Information Network

Site Navigation		After Lymphoma

Battling lymphoma can be the the most difficult thing a person has ever experienced. It was for me, but driving my spirit was a determination to get back to the life I once had, free of cancer. When remission came and during the time that has followed I find I was a touch naive about it all - I'll never quite be the same due to two things - the effect of the experience on me and what the cancer and treatment did to my body. On this page I will focus on the effects lymphoma has on those in remission. These are often collectively called Late Effects.

Quick Jumps: Effects on the Body Effects on the Soul
Coming Soon - Aches, Pains, and Post Treatment Checkups

What to do after remission - lifestyle

A tough topic but I receive questions on this.

A very good site for information is the Facing Forward series by NCI. Another good page for after cancer issues is Cancerbackup in the UK.

Fatigue is one of the other big problems - it is hard to have the same amount of energy post treatment. The best resource I know of for this is Wendy Harpham's book After Cancer (left). More books are in the Coping Books section. In general - take things at your own pace until you have a good feel for your energy levels. I find that the point where I have energy and the point where my energy is mostly gone is very defined now - like I only have a certain size energy reservoir. NCI also has a good data sheet on fatigue.

A good web resource for remission nutrition is by the US National Cancer Institute

Effects of the Body - lymphoma, in it's many forms, can cause little damage to the body before and during treatment or it can take a terrible toll in terms of organ function and stamina. Exactly what lymphoma does to the body varies according to the individual - the effects listed may or may not apply to you.

Chemotherapy Effects

Different chemotherapy drugs can cause different effects. The most common are:

"Chemo Brain" - a term used by cancer survivors to explain memory loss and intermittent recollection.
Peripheral Neuropathy - a numbing of the hand, feet, and other extremities. This often occurs with patients being treated with vinblastine (Hodgkin's) or vincristine (some type of Non-Hodgkin's) chemotherapy. The numbing may go away after treatment although it may take time. My feet are still sensitive to cold over 3 years after treatment.
Fatigue - fighting the cancer and replenishing cells takes a great deal of energy. Again it takes time but much of the energy comes back, albeit slowly.

Radiation Effects

The effects vary according to the field of radiation exposure.

Some long term effects include lung fibrosis, gastrointestinal problems, neurological problems, osteoporosis, and thyroid function problems. With modern treatments, true complications are rare.
Radiation to the mouth area can destroy salivary function.
Radiation can lead to increased risk for developing other types of cancer.

Reference Links

Peripheral Neuropathy - see the PN page for the scoop.

Short to Mid-Term Effects:

Fatigue Causes and Cures from Li's Pages
Fatigue data sheet from NCI
Fatigue in Long-Term Survivors of Hodgkin's Lymphoma - a German study (in English)
Information on Dry Mouth and Saliva Substitutes

Long Term Effects:

Secondary malignancies after treatment for laparotomy staged IA-IIIB Hodgkin's Disease (abstract)
Hodgkin's radiation therapy and Secondary Breast Cancer Risk
A paper on Skin Cancer and NHL
An abstract on late effects in long term high-grade NHL patients
Secondary Cancers after Hodgkin's
Another good abstract on mortality after Hodgkin's.
Fatigue in Long-Term Survivors of Hodgkin's Lymphoma - a German study (in English)

Effects on the Soul - cancer takes it's toll on everyone to various degrees. Coping with life after cancer is tough - you may feel that you are not able to get back to "normal". To quote lymphoma survivor and author Wendy Harpham, you can establish a "new normal", not the same life but a new routine which becomes "normal".

Reference Links:

Wendy Harpham's book After Cancer is highly recommended. Other books can be found in the Coping Books section.
Survivor Tips from the queen of lymphoma visualization Dianna Hinnrichs. She also has a remission visualization.

The Long Term Effects mailing list was the first mailing list on the Internet devoted to talking about cancer after survival. Recommended!

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This page is a work in progress - if you have more complete information, references, or other information please contact the author. The author is not in the medical field and does not warrant the correctness of the material on this page or the sites linked - please take online information and consult with your own medical team to make informed decisions.

After Lymphoma