I’m an 8 year Stage 4 Non Hodgkin Lymphoma survivor and in remission after having chemotherapy which almost killed me it was so strong!😩 So far my only symptoms is chronic fatigue which is constantly affecting me, loss of appetite, sometimes I do get depressed 😔 which I am on medication 💊 for this, fuzzy thinking 💭, aphasia, rheumatoid arthritis with painful joints and sweating 🥵 during the day and night if I do any activity. When I’m doing a lot of activities , I must lay down and rest for a full day or two the following day 😴. I’m being treated with Hydroxy chloroquine twice a day for my joint pain and extra strength Tylenol twice a day which helps me to feel better. I take melatonin for sleeping 😴 at night. The chronic pain and fatigue is my main problem. But at least I’m still alive!😊

I went to MSK Cancer Center and they came up with a very aggressive chemo treatment very quickly. Since I eas diagnosed Stage 4 DLBCL they wanted to make sure they covered all the bases so I had intrathecal chemo as well as chemo. I am in remission 6 months now.

Definitely not frustrated but very appreciative of all the treatment options that exist and all the advances in medicine that are occurring with blood cancers. I was first diagnosed with DLBCL is 2011 underwent R-Chop and everything was perfect until 2022 when it came back. It took 2 years but I'm finally in remission after undergoing R-Epoch, Rice, some experimental chemo's, a splenectomy, radiation and Yescarta finally resolved it for now, 120 days in remission. Other than cancer I'm a healthy male with no other issues so it's quite shocking when you have to go through all these treatments but they are well worth it at the end. Keep your heads up.

No. I’m not at all frustrated finding effective treatments for my Non Hodgkin Lymphoma. I am insured through Kaiser Permenente and received excellent care, very quickly. They spared no expense and wasted no time - from lab tests, scans, surgery, pathology, and my initial diagnosis, assigning me to an oncologist who specializes in blood cancers, devising and implementing treatment and doing everything possible to ensure a successful outcome and my survival. I was receiving chemotherapy within 3 weeks of being diagnosed with Diffuse Large B Cell Lymphoma. Kaiser Permenente saved my life. If I had a billion dollars, I would still choose Kaiser as my health care provider.

MaryEllen, My husband has WM as well as DLBCL. WM is basically only treated when symptoms are affecting your life or IgM is so high as to cause viscosity. Have you gotten second opinion from a WM expert? Once you begin taking the oral drugs you continue taking them until they stop working. Also, they are extremely expensive and you will most likely need to find a grant to help with cost. (Your Cancer Center may help with this)That being said Zanu is a drug that works very well and is tolerated very well. Curious why B&R wasn't considered as a front line treatment.?