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Primary Central Nervous System Lymphoma

Posts: 2
Joined: Dec 2009

Is she all alone? My sister is looking for some information from a person who is going through this same kind of cancer and knows what she's gone thru already with the high dose chemo/side affects and what she is looking at with whole brain radiation as her "only" other option. Supposed to start WBRT next week. She has two children...doesn't want to lose her hair. She's scared because her NHL in dural meninges is very aggressive...they have already told her since the chemo didn't work, the radiation will stop it, but it will come back in 3-4 months.Then, if she survives radiation...they want to do a Stem Cell transplant. She doesn't know what to do because no path looks good. I want to offer her hope for the years she wants. Her doctors said they would completely understand if she wants to "take a vacation" and not do anything. But if she has a chance at a durable remission or partial remission? How do you weigh those odds when either choice looks bad? Our grandmother died of lung cancer from breast cancer, she had no chemo or radiation after the surgery that I know of....do any caregivers know what is it like to not treat pcnsl and just let nature take it's course? Before her diagnosis she was losing weight and really tired with huge headaches....stayed in bed most of the time. Four months after chemo, it's like she isn't sick, but it's back...now there are sharp millisecond headaches occassionally and night sweats and teary eyes. And an MRI saying it's back and twice as big....(but her symptoms aren't there....no double vision, swollen lymph node, massive headaches) If you didn't know she was sick, you wouldn't think she was....but they say her severe symptoms will return. She slept alot before... If you or yours have or are going thorough the uncertainty of a rare brain cancer diagnosis and would be willing to discuss your experiences that may be beneficial to both me and my sister that would be great. This cancer is normally associated with HIV patients....but she is immunocompetant. I don't think it matters to her just so she can connect and not be alone in this. Thank you.

Posts: 5
Joined: Jan 2011

My 9 year old son has Primary CNS Lymphoma and there is very little information about this he just completed his chemo treatments and we are waiting to do our second MRI so we can see how everything has turned out. If anyone has any information about this we would love to hear from you.

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