I was diagnosed with primary CNS lymphoma in 2019. I had 6 months of MRT chemo, then autologous stem cell transplant. I am cured! Prayer is what helped me through it. God will be your strength & comfort. Ex 15:26 …I am the Lord, who heals you. Try to eat as much protein as you can (try gelaTEIN- it’s refreshing & tasty), nap when needed. I’m praying for your complete recovery!
@secglc2 thank you for your wishes, i try ti keep faith and hope. Food is something I really need to reconsider. Not fan of protein, but will try better. Grateful.
I am so sorry to hear of your CNS Lymphoma diagnosis after your treatment for Mantle Cell Lymphoma treatment and remission. I can understand your overwhelm and fear with this new diagnosis, for you and your children. My heart goes out to you - I understand too well how frightening it can be to have uncontrolled neurological symptoms and then the diagnosis of brain tumors.
I am sharing my experience with CNS Lymphoma below to hopefully give you some hope that a good outcome is possible.
My Story:
I collapsed at home on Thanksgiving Day 2023 unable to lift my head off of the floor. I was taken by ambulance to the hospital and diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) after many tests. By the time of diagnosis, I had multiple tumors in my body (stomach, lungs, brain). Because of the multiple brain tumors, mine was also classified as CNS lymphoma.
My Treatment:
I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.
My Current Remission:
I had good results with the treatments and am now in month 16 of post treatment remission. I get scans and labs every 3 months to confirm continued remission.
Try to take good care of yourself and allow yourself some peace if possible during this time. Please reach out if you need more information or support as you proceed with your treatment. There are a great group of mentors and members here that can help you get thru this.
Wishing you all the best with your treatments. We are here supporting you.
I was diagnosed with primary CNS lymphoma in 2019. I had 6 months of MRT chemo, then autologous stem cell transplant. I am cured! Prayer is what helped me through it. God will be your strength & comfort. Ex 15:26 …I am the Lord, who heals you. Try to eat as much protein as you can (try gelaTEIN- it’s refreshing & tasty), nap when needed. I’m praying for your complete recovery!
In January 2025 I was diagnosed with Mantle Cell Lymphoma, after 3 months of Nordic Protocol, I went to a complete remission and in May 2025 It was confirmed that I am still in remission, in July 2025 my healthy cells were completed just in case. In September 2025 I fainted, had a couple of seizures and after biopsy in the brain, told that I have a Lymphoma in the brain. That is so rare and unexpected. From Monday I am going to start a Matrix Protocol in hope that I will be in remission again and will be able to go through stem cells transplant if I am lucky. If not, then they will try to buy me time. I have small kids and so scared. I dont know how to live with it, how to find strength and courage. I am simply so afraid.
I am so sorry to hear of your CNS Lymphoma diagnosis after your treatment for Mantle Cell Lymphoma treatment and remission. I can understand your overwhelm and fear with this new diagnosis, for you and your children. My heart goes out to you - I understand too well how frightening it can be to have uncontrolled neurological symptoms and then the diagnosis of brain tumors.
I am sharing my experience with CNS Lymphoma below to hopefully give you some hope that a good outcome is possible.
My Story:
I collapsed at home on Thanksgiving Day 2023 unable to lift my head off of the floor. I was taken by ambulance to the hospital and diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) after many tests. By the time of diagnosis, I had multiple tumors in my body (stomach, lungs, brain). Because of the multiple brain tumors, mine was also classified as CNS lymphoma.
My Treatment:
I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.
My Current Remission:
I had good results with the treatments and am now in month 16 of post treatment remission. I get scans and labs every 3 months to confirm continued remission.
Try to take good care of yourself and allow yourself some peace if possible during this time. Please reach out if you need more information or support as you proceed with your treatment. There are a great group of mentors and members here that can help you get thru this.
Wishing you all the best with your treatments. We are here supporting you.
In January 2025 I was diagnosed with Mantle Cell Lymphoma, after 3 months of Nordic Protocol, I went to a complete remission and in May 2025 It was confirmed that I am still in remission, in July 2025 my healthy cells were completed just in case. In September 2025 I fainted, had a couple of seizures and after biopsy in the brain, told that I have a Lymphoma in the brain. That is so rare and unexpected. From Monday I am going to start a Matrix Protocol in hope that I will be in remission again and will be able to go through stem cells transplant if I am lucky. If not, then they will try to buy me time. I have small kids and so scared. I dont know how to live with it, how to find strength and courage. I am simply so afraid.
Not sure if that’s the group. I have Primary CNS Lymphoma which is a form of brain cancer. I had a tumour that was diluted with high dose methotrexate chemo.
Not sure if that’s the group. I have Primary CNS Lymphoma which is a form of brain cancer. I had a tumour that was diluted with high dose methotrexate chemo.
Yes, vomiting's have subsided. He is still on RT feed as swallowing is still a problem. But we got some good news. We admitted him for 3rd chemo but before that did a MRI on 10/Jan. 3 small tumors have disappeared and main tumor started shrinking.
Protocol followed by Medical Team: Rituximab (600 mg), Methotrexate (3200 mg) and Temozolomide tablets to be taken from 18/Jan
Very happy to hear you are completely cured. No stroke or seizures for my father. His only symptoms were vomiting's, weight loss and loss of appetite in Nov 2024. As of today (after 2 cycles of Chemo) he does not have any vomiting's but he is unable to swallow or stand and his left has become completely unresponsive
I was diagnosed with primary CNS lymphoma in 2019 at age 58. I had 6 rounds of MRT chemo, then stem cell transplant. I had physical therapy on my left side, because when surgeon took biopsy he touched my brain. I had physical therapy for 2-3 months. Did you have a stroke? I am completely healed and cured! I pray the same for you!
Very happy to hear you are completely cured. No stroke or seizures for my father. His only symptoms were vomiting's, weight loss and loss of appetite in Nov 2024. As of today (after 2 cycles of Chemo) he does not have any vomiting's but he is unable to swallow or stand and his left has become completely unresponsive
My father aged 71 diagnosed with Primary CNS Lymphoma in Dec 2024. Symptoms in Nov 2024 included vomiting's, loss of appetite and weight loss.
So far he has undergone 2 sessions of Chemo (MTR - Methotrexate, Rituximab & Temozolomide) in Bangalore, India. We have appointment for 10/1/25 for MRI scan to see how tumor responded to the treatment and any course correction needed.
His left hand is completely unresponsive but his left leg is slightly better. He is on liquid diet (RT Feed) and still has problem with speech and swallow.
Doctor has planned for 6 chemo sessions to start with.
Wanted to check with this group can his left hand and leg be normal again? Are there any other options for treatment prescribed?
I was diagnosed with primary CNS lymphoma in 2019 at age 58. I had 6 rounds of MRT chemo, then stem cell transplant. I had physical therapy on my left side, because when surgeon took biopsy he touched my brain. I had physical therapy for 2-3 months. Did you have a stroke? I am completely healed and cured! I pray the same for you!
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@secglc2 thank you for your wishes, i try ti keep faith and hope. Food is something I really need to reconsider. Not fan of protein, but will try better. Grateful.
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1 ReactionI was diagnosed with primary CNS lymphoma in 2019. I had 6 months of MRT chemo, then autologous stem cell transplant. I am cured! Prayer is what helped me through it. God will be your strength & comfort. Ex 15:26 …I am the Lord, who heals you. Try to eat as much protein as you can (try gelaTEIN- it’s refreshing & tasty), nap when needed. I’m praying for your complete recovery!
Hi @ingridcork11 -
I am so sorry to hear of your CNS Lymphoma diagnosis after your treatment for Mantle Cell Lymphoma treatment and remission. I can understand your overwhelm and fear with this new diagnosis, for you and your children. My heart goes out to you - I understand too well how frightening it can be to have uncontrolled neurological symptoms and then the diagnosis of brain tumors.
I am sharing my experience with CNS Lymphoma below to hopefully give you some hope that a good outcome is possible.
My Story:
I collapsed at home on Thanksgiving Day 2023 unable to lift my head off of the floor. I was taken by ambulance to the hospital and diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) after many tests. By the time of diagnosis, I had multiple tumors in my body (stomach, lungs, brain). Because of the multiple brain tumors, mine was also classified as CNS lymphoma.
My Treatment:
I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.
My Current Remission:
I had good results with the treatments and am now in month 16 of post treatment remission. I get scans and labs every 3 months to confirm continued remission.
Try to take good care of yourself and allow yourself some peace if possible during this time. Please reach out if you need more information or support as you proceed with your treatment. There are a great group of mentors and members here that can help you get thru this.
Wishing you all the best with your treatments. We are here supporting you.
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2 ReactionsIn January 2025 I was diagnosed with Mantle Cell Lymphoma, after 3 months of Nordic Protocol, I went to a complete remission and in May 2025 It was confirmed that I am still in remission, in July 2025 my healthy cells were completed just in case. In September 2025 I fainted, had a couple of seizures and after biopsy in the brain, told that I have a Lymphoma in the brain. That is so rare and unexpected. From Monday I am going to start a Matrix Protocol in hope that I will be in remission again and will be able to go through stem cells transplant if I am lucky. If not, then they will try to buy me time. I have small kids and so scared. I dont know how to live with it, how to find strength and courage. I am simply so afraid.
Hi @pfother, I moved your post to the relevant discussion to help you connect with others who have experience with primary CNS lymphoma: https://connect.mayoclinic.org/discussion/primary-central-nervous-system-lymphoma/
How are you doing?
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1 ReactionNot sure if that’s the group. I have Primary CNS Lymphoma which is a form of brain cancer. I had a tumour that was diluted with high dose methotrexate chemo.
Yes, vomiting's have subsided. He is still on RT feed as swallowing is still a problem. But we got some good news. We admitted him for 3rd chemo but before that did a MRI on 10/Jan. 3 small tumors have disappeared and main tumor started shrinking.
Protocol followed by Medical Team: Rituximab (600 mg), Methotrexate (3200 mg) and Temozolomide tablets to be taken from 18/Jan
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3 Reactions@vamsinrv, how is your father doing? Has is cancer team been able to address his symptoms?
Very happy to hear you are completely cured. No stroke or seizures for my father. His only symptoms were vomiting's, weight loss and loss of appetite in Nov 2024. As of today (after 2 cycles of Chemo) he does not have any vomiting's but he is unable to swallow or stand and his left has become completely unresponsive
I was diagnosed with primary CNS lymphoma in 2019 at age 58. I had 6 rounds of MRT chemo, then stem cell transplant. I had physical therapy on my left side, because when surgeon took biopsy he touched my brain. I had physical therapy for 2-3 months. Did you have a stroke? I am completely healed and cured! I pray the same for you!
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