Anyone diagnosed with Primary Central Nervous System (CNS) 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.

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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.

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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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My husband Dave has been diagnosed w/ CNS Lymphoma. He went by ambulance to a hospital where a CAT SCAN indicated a brain tumor and then was transferred to a larger hospital where he had an MRI and craniotomy (to take a sample of cancer in his brain). The Pathology report confirmed the diagnosis of CNS Lymphoma. He began chemo in hospital this afternoon (Feb. 26, 2021). His brain cancer is in the left frontal lobe and his executive functions have been completely compromised since I called an ambulance for him the morning of Feb. 8, 2021.

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Hello @ann73 and welcome to Mayo Clinic Connect. I am so sorry to hear of your husband's diagnosis and so glad you found this community of incredible members to help provide support during this time.

I thought it might be helpful for me to share another group you might helpful as a caregiver and to help provide you support as well: https://connect.mayoclinic.org/group/caregivers/

As a caregiver, how are you holding up? How can other members best support you and your husband?

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@ann73

My husband Dave has been diagnosed w/ CNS Lymphoma. He went by ambulance to a hospital where a CAT SCAN indicated a brain tumor and then was transferred to a larger hospital where he had an MRI and craniotomy (to take a sample of cancer in his brain). The Pathology report confirmed the diagnosis of CNS Lymphoma. He began chemo in hospital this afternoon (Feb. 26, 2021). His brain cancer is in the left frontal lobe and his executive functions have been completely compromised since I called an ambulance for him the morning of Feb. 8, 2021.

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Ann, I don’t know if it’s appropriate to hand out your number to someone on this forum or not. This was my exact diagnosis with added I formation…Large B cell CNS Lymphoma, I lost motor skills and cognitive skills. Immediately after my brain biopsy, I couldn’t even hold a sandwich or use utensils. I would love to hear your story and share mine. I will tell you that mine has a happy ending. Two more clean MRIs, and I’ll be considered cured. If his treatment is the same as mine, he’s got a tough year ahead of him. If you would like to talk,I’m very open to it. Let me know, and I can give you my contact information. It’s really an overwhelming time.

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Thank you for your reply. Yes, I would like to have your contact info.

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Hi @mepowers and @ann73. It is more than ok to private message each other in order to exchange information. We just ask that you don't post it publicly for your own safety and privacy.

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Ann, I sent you a PM with my contact info. Marci

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My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.

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@carrieanne2

My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.

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CarrieAnne, welcome. Allow me to introduce you to @mepowers who has been in remission since 2016 and others in this forum central nervous system lymphoma.

CarrieAnne, does your husband normally return for a yearly follow-up but didn't this year?

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