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Primary CNS LBC Non -Hodgkins Lymphoma

Mary N.
Posts: 83
Joined: Jun 2013

Hi, I am 73 and was diagnoised with non-hodgkins lymphoma in my brain in Jan of 2010.  I saw a post about primary cns lynphoma and was wondering if the posts would also be aplicable to me?  I have been on high dose MTX anf Rituxan since I was diagnosed.  At first it was every 6 weeks and my tumors shrunk.  After about 9 months the times between the high dose MTX was gradually increased.  One tumor was gone after 4 months and the other bigger one has left some evidence in the brain but according to MRI's has not had any activity since Sept of 2010.  I am back to driving and was back to work as a mental health therapist at a school.  I decided to retire the end of this year. I now get Rituxan every month and every 4 months a MRI and High dose MTX.  I have never met anyone who has PCNS DLBC NHL and was told it was rather rare.  I would like to communicate with those who have what I have.  I am doing well but really have no idea of what to expect.  I guess the fact that i am so old has some implications but somehow I'm still going and seem to get stronger every year.  Thank you.  Mary N.

Sten's picture
Sten
Posts: 45
Joined: Apr 2013

Hi Mary,

I am glad that your disease seems to go the right way to better health.

Your illness is called Primary CNS LBC Non- Hodgkins lymphoma, and you wonder if the posts about PCNS lymphoma would be applicable to you. Well, PCNS is a kind of Non- Hodgkins lymphoma. I am not sure, but I guess that you have PCNS, and that the doctors' term PCNS LBC NHL is just a bit precise.

 

Mary N.
Posts: 83
Joined: Jun 2013

I think you are correct PCNS Lymphoma is another name for what I have because after something I read last night from the ACS it said that they were all non-hodgkins lymphoma so I don't have to be so precise.  I still have not met many who have what I have and I would really like to see other's experiences.  However now that I don't have to be as precise I may find a few more.  Thanks for writing.

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