Primary Central nervous system lymphoma

Posted by clavallee2 @clavallee2, Dec 18, 2019

Any one been diagnosed with Primary Central nervous system lymphoma?

Hi, @clavallee2 – welcome to Mayo Clinic Connect, and thanks for starting a discussion on this type of lymphoma. Here is some information from the National Cancer Institute on primary central nervous system lymphoma that you may find useful https://www.cancer.gov/types/lymphoma/patient/primary-cns-lymphoma-treatment-pdq.

I'd like to introduce you to other Connect members who have mentioned this lymphoma, such as @wldflowur13, who mentioned an aunt who had this disease, and @mepowers who mentioned a similar diagnosis. I'd also like you to meet @IndianaScott

Have you been diagnosed with primary central nervous system lymphoma, clavallee2? If so, what treatment are you undergoing currently?

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Hi @clavallee2, I am in remission but had Large B cell CNS Lymphoma. I had three different treatments. I had Rutiximab which is a biologic for 8 treatments, high dose methotrexate which is an infused Chemo and Temodar which is an oral Chemo. The high dose Methotrexate had to be administered in the hospital which was a four day stay every time it was administered. I’d be happy to answer any questions you have about my experiences. I’m three years in remission this month. Two more years, and they call me cured.

Liked by Lisa Lucier

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I’m sorry for the delay in responding @clavallee2 My aunt has this- she was diagnosed in September of 2018 and she actually just finished her final round of chemo this month. She’ll have an MRI on Wednesday to check the brain tumor, but the last scan showed that it seemed to be gone (or as the specialists said, it’s no longer measurable). She went through 19 rounds of high dose Methotrexate and Rutiximab. As @mepowers mentioned this treatment had to be administered as an inpatient in the hospital. For my aunt it usually required at minimum a 6 day stay and sometimes up to 2 weeks. It just depends on how long your body takes to clear out the Methotrexate chemicals. They keep you until the chemicals get to a low enough level that it’s safe to leave. My aunt’s brain tumor was right on her brain stem so surgery wasn’t an option. It’s been a tough journey for us and we’re still trying to figure out how to live with this new normal. My aunt has a lot of brain impairments caused by the tumor, but hasn’t accepted them and it’s been a bit of a nightmare. But we’re grateful she’s doing so well. If you have any questions- I’d be happy to share our experiences.

Liked by Lisa Lucier

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@wldflowur13

I’m sorry for the delay in responding @clavallee2 My aunt has this- she was diagnosed in September of 2018 and she actually just finished her final round of chemo this month. She’ll have an MRI on Wednesday to check the brain tumor, but the last scan showed that it seemed to be gone (or as the specialists said, it’s no longer measurable). She went through 19 rounds of high dose Methotrexate and Rutiximab. As @mepowers mentioned this treatment had to be administered as an inpatient in the hospital. For my aunt it usually required at minimum a 6 day stay and sometimes up to 2 weeks. It just depends on how long your body takes to clear out the Methotrexate chemicals. They keep you until the chemicals get to a low enough level that it’s safe to leave. My aunt’s brain tumor was right on her brain stem so surgery wasn’t an option. It’s been a tough journey for us and we’re still trying to figure out how to live with this new normal. My aunt has a lot of brain impairments caused by the tumor, but hasn’t accepted them and it’s been a bit of a nightmare. But we’re grateful she’s doing so well. If you have any questions- I’d be happy to share our experiences.

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Wow, @wldflowur13 – seeing your aunt's brain tumor shrink to the point of no longer being measurable is great.

Did your aunt have any side effects from the 19 rounds of high-dose methotrexate and rituximab?

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