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Running out of options

Csimowitz
Posts: 3
Joined: Aug 2014

Hi. Where to begin? My long term boyfriend/ partner was diagnosed with primary CNS lymphoma of the brain 22 months ago. Very rare, awful disease. I have spent the last two years reading abstracts/ protocols/ searching the internet for all info concerning this cognitive robbing disease. He did the rituxin methotrexate leucovorin regimen the first year and the tumor disappeared. Unfortunately a new tumor appeared in April. After two rounds of chemo he was hospitalized with MTX toxicity and lung damage. He now uses oxygen as needed, stability worsened so he walks and stumbles with a cane. Short term memory is about gone. Totally BUT long term is intact! Stem cell transplant was not an option- other psychological issues including bipolar two and depression. Saw a radiologist about WBT talked at length about high risk and side effects and decided on quality of life instead. Tough decision, but we are opting to continue to try to enjoy and value each and every day. Main problem- all I do is cry when he is not present. If I cry in front of him he gets scared- remember virtually no short term memory. I know his wishes from discussions last year when he was still clear. Has anyone else said NO to whole brain radiation? Peter is 60 years old and has had methotrexate in the last few months putting him at High risk for radiation toxicity. I have even emailed two of the researchers in the field. Tremodar anyone? Anyone have experience, it might buy us some time or give him pneumonia. I am at a loss as to what next except praying that I can have the strength to give him a "normal life" for our time left. A miracle would be appreciated. I am trying to focus only on TODAY so I don't fall apart. I am the sole caregiver. Anyone know  of something I have missed? Lymphoma is a cruel aggressive disease.

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