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
~~~
https://www.healthline.com/health/chronic-fatigue-syndrome
~~
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.

dla1989 | @dla1989 | Jul 30 11:06am

Hi all,
My mom is 78- dx today with follicular lymphoma- she has been really tired for years and has lymphedema in legs. I am open to any tips on managing this diagnosis. Ty🙏

Lori, Volunteer Mentor | @loribmt | Jul 30 12:17pm

In reply to @dla1989 "Hi all, My mom is 78- dx today with follicular lymphoma- she has been really tired..." + (show)

Hi @dla1989. Follicular lymphoma is a type of blood cancer that starts in the white blood cells. It’s usually a very slowly developing type of disease, taking a long time to progress. Your mom may have had this for several years before her diagnosis.
Unfortunately with any lymphoma, fatigue is part of the makeup of the disease. How are her other blood numbers? Is her red blood count normal or is she experiencing signs of anemia?

Posting a couple of links for you on Follicular Lymphoma.
This from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680

This from Healthline.com
https://www.healthline.com/health/follicular-lymphoma
The type of follicular lymphoma your mom has may determine what type of treatment, if any, her doctor is recommending. Is she on treatment now or in a watchful waiting period?

dla1989 | @dla1989 | Jul 30 12:37pm

In reply to @loribmt "Hi @dla1989. Follicular lymphoma is a type of blood cancer that starts in the white blood..." + (show)

New dx today- she will see oncologist soon- no labs yet.
Thank you!

david09 | @david09 | Jul 30 1:50pm

Newly diagnosed with chronic leukemia, and possible low grade blood cancer. Doctor is doing a bone marrow biopsy. Anyone with similar condition?

Lori, Volunteer Mentor | @loribmt | Jul 30 3:37pm

In reply to @david09 "Newly diagnosed with chronic leukemia, and possible low grade blood cancer. Doctor is doing a bone..." + (show)

Hi @david09 and welcome Mayo Connect. There are quite a few members in the forum who have also been diagnosed with CLL, (Chronic Lymphocytic Leukemia).

I posted a link below that would be a great discussion group for you to join to meet with other members @kegraves @carl50 @rlybolt @sandiegostu @bochos @pinkpocketbooks @normahorn, just to name a few, who also have CLL in various stages.

~CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
CLL is generally a slowly developing type of leukemia and patients can go for years without requiring treatment. If treatment is needed there are often several options available.

Since blood forms in the bone marrow, your doctor has requested a bone marrow biopsy which goes right to the heart of the blood manufacturing site. There are a number of tests that are run from these samples so it can take a few weeks before all of the results have been evaluated.
There are a number of helpful articles from credible sources which will help educate you a little to the new diagnosis.
This from Mayo:
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
From Verywellhealth.com https://www.healthline.com/health/chronic-lymphocytic-leukemia-cll

David, were you having symptoms that led to the discovery or was this through bloodwork from a routine physical?

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