Husband diagnosed with Primary CNS Lymphoma

missymet31

Hello,

My husband has recently been diagnosed with PCNSL and is undergoing his first chemo treatment in Sloan Kettering as we speak. Is there anyone out there who knows anyone with this disease? His chemo regimin will consist of R-MVP treatments every 10 days for 5-7 cycles and then a low dose of radiation. When that's all done, they will do an MRI and we pray that it worked. He is 48 years old and we have 2 children, 15, and 13. One day my life was fine and the next.....I'm still in a state of shock. He actually had surgery to have it removed from his cerebellum since at first they thought it was an Astrocytoma, but the extended path report came back as this rare lympyhoma. I was hoping for some success stories, but I can't seem to find anyone with this disease. Thanks to all for listening.

Missy from Long Island

brainman

Hi Missy,

Just wanted to let you know that you and your husband are in my prayers and thought. I do not know anything about PCNSL. Have you posted on the Lymphoma forum yet? Maybe someone who reads those posts can be of greater assistance. Sloan Kettering has a well respected reputation and I imagine he is receiving state-of-the-art treatment there. I am so sorry for all that you and your husband are going through. I remember the shock I felt when the doctor said the word "cancer." My life seemed to end at that point. That was over 14 years ago. My cancer WAS an astrocytoma. Keep us informed. Post as often or as rarely as you wish. My best wishes to both of you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

missymet31

Hello Jim,

Thank you for your kind reply.....I have posted on the Lymphoma forum and haven't received a reply, but I will try again. I read your story....you are a kind, supportive man....and you sound very positive even after all you have been through. I read that your tumor came back in 2005, what has happened since then? Do you have good hospitals where you live? My husband doesn't realize how good of a hospital Sloan Kettering is. He didn't even want to go there since we live about 45 minutes away (1 1/2 hours with traffic, which in NY, is most of the time, no matter what time it is). I have read some other stories and I am realizing how lucky we are to live so close to NYC, even though I would love to move somewhere warmer. We had plans to move over the next 4-5 years, but now I'm thinking, how could we ever leave now that we need to be near Sloan. I have to try to remember to take it one day at a time....it's a pretty simple concept, yet one of the hardest things for me to do. I hope to "speak" with you soon. You are also in my thoughts and prayers.....please let me know how you are doing.

Missy

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