Lymphoma fatigue

Posted by loki525 @loki525, May 19 3:53pm

I'm almost five years out from my diagnosis and treatment of follicular cell non-Hodgkin's lymphoma. I did six months of Rituxan and bendamustine and then two years of bimonthly Rituxan maintenance. My nodes have been clear, CTs negative and CBC and metabolics pretty normal. My issue is increasingly debilitating fatigue to the point where it's really interfering in my life and daily activities. Sometimes my body just feels leaden, I'm out of breath and near collapse. I try to walk, go to the gym, eat a reasonably healthy diet and carry on with life but sometimes I just feel like my batteries are completely dead. Has anyone experienced something similar and found a way to deal with it? I'm 70, carry a few too many extra pounds and also have prostate cancer (perhaps successfully resected) but I really don't want to spend the rest of my life on the couch watching TV or napping. Any helpful dvice or resources would be appreciated.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | May 19 9:13pm

Hi @loki525 Increasing fatigue to this degree is really troublesome and definitely impacting your quality of life. It’s encouraging that your blood work and tests are ok…no sign of relapse.
There are a number of conditons that can cause fatigue so it could take some sleuthing to come up with the culprit. This informational article from Mayo Clinic gives a pretty comprehensive list of some of the offenders.

What types of tests has your doctor recommended? Have you been checked for coronary disease?

kippi1950 | @kippi1950 | May 20 5:37am

Can you post the link ? My wife(same age group) is 3 years Ned after chemotherapy to treat CNS lymphoma. MRI and bloodwort was just repeated and confirmed remission status.

She doesn’t like to walk and cannot explain why. No pain.
We told the MSK oncologist/neurologist last week. No follow up advice other than OT/PT

Lori, Volunteer Mentor | @loribmt | May 20 8:23am

In reply to @kippi1950 "Can you post the link ? My wife(same age group) is 3 years Ned after chemotherapy..." + (show)

Ooops @kippi1950 and @loki525, I forgot to actually post links to the information on causes of fatigue! Sorry about that…guess I’m human after all. LOL
Here’s the link from Mayo and 2 more as a bonus. ☺️

From Mayo Clinic:
https://www.mayoclinic.org/symptoms/fatigue/basics/causes/sym-20050894

From Healthline: https://www.healthline.com/health/fatigue

From verywellhealth: https://www.verywellhealth.com/fatigue-symptoms-causes-diagnosis-and-treatment-4768481

@kippi1950 I’m sorry to hear your wife is still having fatigue issues. I looked back on some previous conversations we had in July 2023. You were concerned about a possible secondary condition such as AML or MDS. So it is encouraging to see with recent bloodwork that she has no evidence of disease. But how frustrating to have this level of fatigue.

Another couple of articles that popped into my head are related to chronic fatigue syndrome. The symptoms seem similar…

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
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https://www.healthline.com/health/chronic-fatigue-syndrome
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https://www.healthline.com/health/fibromyalgia/fibromyalgia-vs-chronic-fatigue-syndrome

@loki525 and @kippi1950 has there been any testing done for viruses such as EBV, CMV, or Lyme disease, lupus, hypothyroidism, fibromyalgia, depression or sleep disorders?

Colleen Young, Connect Director | @colleenyoung | May 26 2:12pm

@kippi1950 and @loki525, you may also appreciate this related discussion in the Cancer: Managing Symptoms support group:
- Fatigue and cancer treatment: How do you cope?
https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

kippi1950 | @kippi1950 | May 27 7:48am

That is all helpful.
Our experience after nearly 3 years in remission is:
Oncologists do not actively participate in the rehabilitation process.
There is little advice on how to manage the side effects of chemotherapy. For example when you experience serious ejection nausea: pls see your local GI specialist.
It is difficult to differentiate the fatigue caused by the cancer(like low hemoglobin levels) and treatment related damage.
There is little knowledge on how physical exercise improves the survival rate.
Even less clinical data are available on how social activities and connections impact the recovery.
There is no knowledge on how long fatigue will last.

What we do:
Get additional motivation by visiting a professional OT/PT specialist weekly. We exercise at home for 1 hr every day.
We visit restaurants and concerts regularly in spite of the disabilities.
Keep family connections and friendships intact as much as possible.

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