CNS Lymphoma longterm issues

Hi, I’m new to this forum and online support systems like this but I am so happy I found this group. I am 26 years old and my father,63 years old, was diagnosed with PCNSL almost a year ago. Before being diagnosed with CNS, he was being treated for ocular Lymphoma( receiving localized injections of chemo in his eyes) for almost year and a half. Although the drs thought that his cancer was contained to his eyes, it turned out that the CNS had exposed itself in his eyes which lead to his brain. He went through two rounds of hospitalized high dose methotrexate, but his kidneys could not handle any more chemo after the second round. While being in the hospital for treatment, he developed swelling in the brain which led the doctors to put him on high dose steroids to reduce the swelling. The steroids did a number on his body, leading him to tear his rotator cuff, hamstring and nasty staph infection of the blood, all while receiving whole brain radiation and localized radiation of the eyes. His body is finally healthy but the doctors can not confirm if his tumor is active or inactive at this time. He is not experiencing all of the same symptoms he had when he was originally diagnosed with CNS, so that is a good sign. His next MRI is in September and we are hoping for no change in growth of the tumor. Although his heath has improved immensely(thank goodness) his personality and mental health just don’t seem the same. He is forgetful, has mood swings and gets agitated by the smallest things now. We used to have very in-depth conversations, laugh a ton together and be two pees in a pod, and although he is still my best friend and I love him endlessly, he just isn’t the same. I am having a hard time coping with this. Coping with watching him have to fight this terrible disease. I am just wondering if anyone has any suggestions or maybe a similar situation to ours. I feel very lonely going through this. I have an incredible large family that is always there to listen, but sometimes hearing an outsiders perspective is helpful. Thank you for listening.

Hi HereForHope401,

I had PCNSL in 2012 at the age of 68. I got the toughest treatment including high dose chemo and autologous stem cell transplant. I am now cancer free since 5 1/2 years and quite fit physically and mentally.

I hope that your father will get better. If you have any questions to me you are welcome.

Good luck!

Sten

My husband developed an aquired brain injury, probably from radiation scarring. The scarring restricts the blood supply to some areas. After about two tears his emotions went haywire. Extreme agitation, persecution complex, rages and would cry very easily at anything. His haematologist said his filtering system was impaired. Our automatic fitering system asseses our response against societal norms and expectations. Ian's only kicked in after his initial overblown response. He is now permanently on an antipsychotics 250mg quietapine. It took 6 montns to get the medication in and sett6ked but he is actually better than his former self. Retirement helped too. My husnand only had 13 rounds of half strength radiation to avoid early dementia of heavier doses and duration. No one warned us of the scarring. However we have a happy ending here. 3.5 years in remission now.

Hi,

I'm sorry to hear about your father's troubles. I was diagnosed with CNS lymphoma in 2011 and successfully treated, and I've been healthy since. This illness and its treatment can cause a lot of cognitive and personality changes. High doses of steroids (dexamethasone in my case) are intensely difficult - I can't begin to explain how physically and mentally destructive they are. The good news is that they eventually, slowly, wear off if one can stop taking them. 

I had issues with vision (nearly blind for a time), memory, understanding, and interpreting information. When I first entered treatment I was actively hallucinating. I was also depressed, anxious and angry. I lost almost all my muscle mass and gained 40 pounds of fat. I lost all my hair. I lost all interest in sex. I lost my balance and coordination and frequently fell down. I couldn't concentrate enough to read a book or watch a TV show sometimes. I lost my job, had to quit almost all the activities I enjoyed, and was stuck at home all day. I couldn't drive because I kept getting lost.

What I'm getting at is that this disease is so disruptive to your life that it's hard to be the same person you were before. 

Things that helped me were visits from friends and family (even if I didn't seem to appreciate them at the time.) I took an antidepressant drug that helped tremendously. I was glad for any opportunity to get outside or go somewhere different. I also really liked ice cream.

Don't feel bad that your father seems different. He is different. You've got to to your best to be there anyway. Good luck.

Chris