I'll keep it short. I was diagnosed with PCNSL in April 2015 and now 11 years later and up to this point (5/3/26) have been progression free. Treatment was the chemo only option of high dose Methotrexate and other drugs. Tumor looks like it just melted away on the MRIs in just a few months in 2015. I am so grateful that I have been progression free this whole time and frankly I don't deserve the good fortune, but I'll take it ! So there is hope !!! Internet says you are never out of the woods with this disease so yearly MRI's essential. For me the whole thing started with blurry/cloudy vision in my right eye. A vitrectomy removed the fluid from right eye with which they found out what kind of tumor I had. I went through several eye doctors before until I was sent to a high-end specialist. He found it when he said lets just do an MRI on your head just to eliminate unlikely possibilities !!! By that time I was having rapid cognitive decline although only 8 weeks earlier I was fine cognitively. Urgency is key here. I have a family history of autoimmune diseases and I got Crohn's disease around 2000 and immunosuppressants did not work and I had my entire colon and rectum removed 2007. I strongly suspect the immunosuppressants I took for the Crohn's disease may have brought on the PCNSL.
@noelnemeth Welcome to Connect! What an encouraging story about your PCNSL ( Primary Central Nervous System Lymphoma or CNS). Messages such as this can give an enormous sense of hope to others with CNS. So thank you for sharing with us.
Did you have to undergo any physical therapy to help reverse any muscle decline you had?
I'll keep it short. I was diagnosed with PCNSL in April 2015 and now 11 years later and up to this point (5/3/26) have been progression free. Treatment was the chemo only option of high dose Methotrexate and other drugs. Tumor looks like it just melted away on the MRIs in just a few months in 2015. I am so grateful that I have been progression free this whole time and frankly I don't deserve the good fortune, but I'll take it ! So there is hope !!! Internet says you are never out of the woods with this disease so yearly MRI's essential. For me the whole thing started with blurry/cloudy vision in my right eye. A vitrectomy removed the fluid from right eye with which they found out what kind of tumor I had. I went through several eye doctors before until I was sent to a high-end specialist. He found it when he said lets just do an MRI on your head just to eliminate unlikely possibilities !!! By that time I was having rapid cognitive decline although only 8 weeks earlier I was fine cognitively. Urgency is key here. I have a family history of autoimmune diseases and I got Crohn's disease around 2000 and immunosuppressants did not work and I had my entire colon and rectum removed 2007. I strongly suspect the immunosuppressants I took for the Crohn's disease may have brought on the PCNSL.
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
Connect
Connect
Like
Helpful
Hug
@noelnemeth Welcome to Connect! What an encouraging story about your PCNSL ( Primary Central Nervous System Lymphoma or CNS). Messages such as this can give an enormous sense of hope to others with CNS. So thank you for sharing with us.
Did you have to undergo any physical therapy to help reverse any muscle decline you had?
I'll keep it short. I was diagnosed with PCNSL in April 2015 and now 11 years later and up to this point (5/3/26) have been progression free. Treatment was the chemo only option of high dose Methotrexate and other drugs. Tumor looks like it just melted away on the MRIs in just a few months in 2015. I am so grateful that I have been progression free this whole time and frankly I don't deserve the good fortune, but I'll take it ! So there is hope !!! Internet says you are never out of the woods with this disease so yearly MRI's essential. For me the whole thing started with blurry/cloudy vision in my right eye. A vitrectomy removed the fluid from right eye with which they found out what kind of tumor I had. I went through several eye doctors before until I was sent to a high-end specialist. He found it when he said lets just do an MRI on your head just to eliminate unlikely possibilities !!! By that time I was having rapid cognitive decline although only 8 weeks earlier I was fine cognitively. Urgency is key here. I have a family history of autoimmune diseases and I got Crohn's disease around 2000 and immunosuppressants did not work and I had my entire colon and rectum removed 2007. I strongly suspect the immunosuppressants I took for the Crohn's disease may have brought on the PCNSL.
-
Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
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?
-
Like -
Helpful -
Hug
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
-
Like -
Helpful -
Hug
3 Reactions@vamsinrv, how is your father doing? Has is cancer team been able to address his symptoms?