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Primary CNS Lymphoma

Posts: 2
Joined: Jun 2011

I am a healthy 32 year old male recently diagnosed with Primary CNS Lymphoma. I have been through 3 cycles of high-dose methotrexate with doses of procarbazine every other treatment and so far my progress has been great. I am writing because - from what I know about CNS Lymphoma of the brain - I am a very unique case. Because of the uniqueness of my situation I am curious if (1) there is anyone else out there that has a similar case; and (2) if anyone knows what long-term prognosis looks like ... I'm sure others of you have been equally frustrated getting a straight answer from your Doctor(s). Thank you for your responses and god bless!

fozzy in canada
Posts: 1
Joined: Jun 2017

In Aug 2014 I was diagnosed with testicular lymphoma and tested and treated for cns lymphoma. . I had six rounds of LyCHOPR and three rounds of methotrexate. Now, (May 18, 2017)I had been suffering from brutal headaches for a couple weeks and checked into emergency where they did a CT scan and found a tumor approx 6cm long. They removed a portion of the tumor May 24th and have me scheduled for further rounds of methotrexate and then Autologous stem cell transplant three months from now.

Posts: 1
Joined: Jan 2018

Hi there,

A family member of mine (age 70's, male) has been diagnosed with PCNSL for about a year and treatment doesn't seem to be working, even though we have tried twice. The tumor seems to be coming back and this is the third time. After reading your posts, it seems like the ASCT has been successful for so many of you and I was wondering how much of a financial burden this was and how you guys went about the treatment. I heard that it is not paid for by Medicare. I would love to pass this info on to my relatives, this is our last hope otherwise we're considering hospice so any information would be so helpful. Please let me know as soon as possible, I'll be checking this often. 

Thank you!

Sten's picture
Posts: 162
Joined: Apr 2013

Hi madisonie,

I returned your private message.


Posts: 1
Joined: Sep 2019

My boyfreind was diagnosed with T Cell Primary CNS in 1/19 he has had  crainotomy to remove the tumor, has completed treatments of Chemo  where it showed his markers were low and cancer was disaapearig, however after chemo treatments were  completed his lasted MRI Showed new lesions and regrowth.  He is now doing WBRT, which scare the crap out of me.  He is miserable cant eat ,  really quiet  and has no strength and sleeps all day.  He is supposed to also have a ASCT done, he has already done the harvesting but was put on hold due to the regrowth and new lesions.   I have been reading about all the wonderful outcomes of the ASCT  I pray that we get there. I am so afraid.  

Posts: 24
Joined: Apr 2012

qnbea76 : I'm very sorry to hear about your boyfriends diagnosis and regrowth of the lesions. I don't check in here often - how are things going now?



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