Relapsed CNS Primary Brain Lymphoma - Linked with Epstein-Barr Virus?

Posted by jesspecoraro @jesspecoraro, May 21, 2018

My father is 71 years old and was diagnosed with CNS Primary Brain Lymphoma in May of 2016. We have exhausted all traditional treatment efforts; chemotherapy and radiation are no longer an option for us. We are looking into holistic healing routes. I realize this is not necessarily the appropriate forum, but I am desperate to find help. My question for anyone who reads this is if you've found any supplements or natural healing remedies that have had an effect on your cancer, whether it be CNS Lymphoma or otherwise?

I have also noticed the link between the Epstein-Barr Virus and Non-Hodgkins Lymphoma, and wondering if anyone had ANY information as far as that connection goes, or if your doctor tested for the presence of EBV or any auto-immune diseases when you were diagnosed with cancer?

Thank you in advance to anyone who may take the time to answer. It is appreciated beyond words.

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

Colleen Young, Connect Director | @colleenyoung | May 21, 2018

Welcome to Connect, @jesspecoraro. It is so hard to hear when cancer returns, and treatment options are limited. There may be complementary therapies that can help ease symptoms, but I would be cautious about expecting cure. You might be interested in reading and taking part in this discussion:

- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Have your father's doctors talked about possible clinical trials? What about palliative care? Do you live with or near your father?

cindylb | @cindylb | May 21, 2018

So sorry to hear about your father. I can only add this.........I am a breast cancer survivor and also possibly have type of skin lymphoma in the early stages, so early they are only watching and waiting. The lymphoma might be linked to the Epstein Barr Virus. My doctors check my levels for EBV every six months and think there may be a connection between the virus and mono I had just before my breast cancer and my elevated levels of EBV, which seems to come and go. Don't know if that might help? Hugs to you as you navigate the next steps.

pokeyspride2002 | @pokeyspride2002 | May 22, 2018

Sending prayers to your family and hope that you find something that will work to help him. I have Chronic Lymphocytic Leukemia and fight with it daily, and I have had skin melanoma, I know it's nothing like what your father is dealing with; I do know the struggles and frustration that comes from living with it and trying to find ways to stay healthy. Huggs to you and may the lord bless you with the answers you are looking for.

lisjeanne | @lisjeanne | Mar 3, 2022

My dad who is 68yr old was just diagnosed with this. I have no idea where to get started..

sassy2b | @sassy2b | Apr 23, 2022

What were the symptoms because I have electric shock to the brain

Colleen Young, Connect Director | @colleenyoung | Apr 24, 2022

In reply to @sassy2b "What were the symptoms because I have electric shock to the brain" + (show)

Hi @sassy2b, it sounds like you have a concerning symptom of feelings of an electric shock to the brain. Have you talked to your doctor about your concern or asked for a referral to a neurologist?

kathypsi | @kathypsi | Mar 31, 2023

My husband was diagnosed with primary cns lymphoma of the brain in June 2021. He complete the Matrix chemo protocol and had an autologous stem cell in October 2021. All his MRI's since are clear and he is doing physically well. In March of 2022 he began to get depressed, agitate and aggressive towards his family am others. In August of 2022 he was placed on anti anxiety medication Escitalopram 10 mg, it seemed to work a bit but still not where he should be. The family doctor increased his dose to 20 mg on March 1, 2023. The medication takes 4 to 6 weeks to get the full effect, but in the mean time he is having sleep issues, still gets anxious. The medication also says his symptoms could get worse before they get better. He is set for another MRI on April 12, 2023. He has also started counselling. I don't know what to do to make him feel better. I don't know if he is on the right medication. He went through all his treatments with a positive attitude and happy and I don't know what happened last March. Thank you.