I was recently diagnosed with CNS DLBCL and am currently being treated at Mayo for this.
It is so encouraging to read about other’s CNS remission after completing treatment. Lori I also very much appreciated reading your BMT story and your encouraging comments in the site for so many people going thru the transplant process as this is part of my prescribed treatment. I am 62 and in good health so your story gives me hope for a successful transplant.
After reading the recent posts about CNS lymphoma, I decided to share my story since CNS lymphoma is not a common diagnosis. Apologies for the length of this but I wanted to include as much detail in case it helps someone else in some way.
I also want to send my best wishes to others dealing with CNS lymphoma and thank those who have shared their story In this site. Sometimes even reading a small part of someone else’s journey can be so encouraging to so many.
My Illness/Symptoms:
I became sick in April 2023 with uncontrollable coughing, daily fevers, night sweats, severe chills, extreme fatigue, slight dizziness, and nausea/loss of appetite. I was tested by my PCP for Covid and many other respiratory illnesses as well as other infections with no diagnosis found.
This illness continued into June and I was concerned that with the daily fevers I would start experiencing cluster headaches which for me can be triggered by fever. My PCP (a doctor I like and respect) let me start 10mg of prednisone daily which is what I use for cluster headache cycles. I noticed within a week that all of the symptoms had resolved and I was able to start working and doing other activities again .
However in early July, I woke up with a sore spot on my scalp and my hair began falling out by the handful. My PCP thought it might be related to the daily prednisone and had already been encouraging me to taper off since this is not a good medicine to be on long term if it is not needed (PCP was not sure that the prednisone was the cause for my improvement since no diagnosis).
I started very slowly tapering off the prednisone over the next months but saw no improvement in the hair loss or sore spot on my scalp. I had a couple of times where I increased the dosage again to alleviate headaches but I eventually finished the prednisone taper in mid October.
Without the daily prednisone, I started noticing increased nausea, fatigue, and some mild dizziness thru October/November but not as severe or disabling as in May/June. I reached out to my PCP the week before Thanksgiving as the symptoms started increasing in intensity. My regular PCP was on holiday so another PCP diagnosed me with an ear infection and prescribed medications for dizziness and the ear infection.
I collapsed the next week on Thanksgiving Day with severe dizziness, nausea and vomiting unable to lift my head off of the ground. My husband called 911 and I was taken to the Mayo emergency department. A CT scan revealed multiple lesions in my brain and I was admitted to Mayo hospital.
Hospitalization after Emergency Care, Diagnosis and Treatment:
After many tests (most of this time I don’t remember), I was diagnosed with DLBCL lymphoma with CNS involvement as I had cancerous lesions in my brain and elsewhere in my body. I received a week of chemotherapy in the hospital with multiple cancer medications (Matrix treatment) and was released 15 days after admission. I went home using a walker because the brain lesions affected my equilibrium and I was prone to occasional loss of balance and falling.
I have since completed 8 rounds of chemotherapy, 4 in hospital Matrix treatments alternated with 4 outpatient RCHOP treatments. All of the lesions in my brain and other areas of my body showed complete resolution on the mid treatment and post chemotherapy brain MRI and PET scans so a great result.
My current status of waiting for a BMT:
I am in a holding pattern waiting for my bone marrow to hopefully recover enough for the autologous stem cell transplant. Both my hematology oncologist and the BMT doctor indicated the high rate of recurrence with the CNS lymphoma and how important the transplant is to complete recovery. They did a great job in explaining this to me and my husband who were initially reluctant to proceed with this very intensive process. So appreciative of my treatment by the great medical teams at Mayo.
My first stem cell collection attempt in June failed as there were not enough stem cells for collection. The BMT doctor had indicated this was a possibility due to low blood counts but wanted to try. It was agreed this was not unexpected with the intensive chemotherapy I had received. I have been given more time to allow continued bone marrow recovery in hopes for a successful stem cell collection.
I will find out later this week if my counts have improved enough to try for collection again so I can hopefully proceed with autologous transplant. I have not had labs since mid August and these did show some improvement so I am hopeful for this week’s counts. If my bone marrow suppression has not improved, we will discuss the possibility of moving forward with the donor transplant process. I know that as intimidating and risky as the donor transplant process would be, it would be far worse if the CNS lymphoma recurred and caused more severe impairment to my quality of life. But still not an easy choice to make.
Many thanks for letting me share my journey so far. Hopefully I will be able to post a happy ending to this story in the future. So much gratitude to the amazing Mayo doctors and their teams for their compassionate care during this challenging time.
Good morning @j0318. I think I was holding my breath throughout my reading your story! You were so fortunate to finally get a diagnosis before it was too late!
As you and I have learned, blood cancers can be a challenge to diagnose but they’re often not subtle. My gosh, I’m so happy for you that you’re now to the point where you can have the bone marrow transplant to help keep you in remission.
Being at Mayo puts you in the very best of hands for your care. I’m a bit biased of course, but I own my life to my transplant doctor and BMT team. They all do incredible work there and want the very best outcome for their patients. After your epic odyessy, you must feel a huge sense of relief being there! There’s an underlying sense of calm assuredness just being at Mayo…I still feel it every time I walk into those buildings. Looking forward to my followup early October!
So from what I’m understanding, you have 2 potential options for the BMT. Either using your own cells if blood numbers rebound enough to harvest or use donor cells.
There are, of course, risks to both procedures. Using your own cells (autologous) the recovery process is a little faster and there’s no risk of cell rejection. I’m not sure of the percentage of risk relapse of your condition if you use your own cells. That’s a good question for your hematologist oncologist.
Using donor cells, you get an entirely new immune system which, at least in my AML, gave me a high percentage that my condition wouldn’t return. I’m 5 years into a successful transplant. I would quite literally not be here without it. It was worth the risk and the lengthy recovery time. I was 65 years at the time. Now I’m 70, energetic, healthy and feel as though nothing has ever happened. I wouldn’t hesitate a nanosecond if I had to do it all over again.
So you do have some decisions to make. What do your doctors feel is the best option?
I was recently diagnosed with CNS DLBCL and am currently being treated at Mayo for this.
It is so encouraging to read about other’s CNS remission after completing treatment. Lori I also very much appreciated reading your BMT story and your encouraging comments in the site for so many people going thru the transplant process as this is part of my prescribed treatment. I am 62 and in good health so your story gives me hope for a successful transplant.
After reading the recent posts about CNS lymphoma, I decided to share my story since CNS lymphoma is not a common diagnosis. Apologies for the length of this but I wanted to include as much detail in case it helps someone else in some way.
I also want to send my best wishes to others dealing with CNS lymphoma and thank those who have shared their story In this site. Sometimes even reading a small part of someone else’s journey can be so encouraging to so many.
My Illness/Symptoms:
I became sick in April 2023 with uncontrollable coughing, daily fevers, night sweats, severe chills, extreme fatigue, slight dizziness, and nausea/loss of appetite. I was tested by my PCP for Covid and many other respiratory illnesses as well as other infections with no diagnosis found.
This illness continued into June and I was concerned that with the daily fevers I would start experiencing cluster headaches which for me can be triggered by fever. My PCP (a doctor I like and respect) let me start 10mg of prednisone daily which is what I use for cluster headache cycles. I noticed within a week that all of the symptoms had resolved and I was able to start working and doing other activities again .
However in early July, I woke up with a sore spot on my scalp and my hair began falling out by the handful. My PCP thought it might be related to the daily prednisone and had already been encouraging me to taper off since this is not a good medicine to be on long term if it is not needed (PCP was not sure that the prednisone was the cause for my improvement since no diagnosis).
I started very slowly tapering off the prednisone over the next months but saw no improvement in the hair loss or sore spot on my scalp. I had a couple of times where I increased the dosage again to alleviate headaches but I eventually finished the prednisone taper in mid October.
Without the daily prednisone, I started noticing increased nausea, fatigue, and some mild dizziness thru October/November but not as severe or disabling as in May/June. I reached out to my PCP the week before Thanksgiving as the symptoms started increasing in intensity. My regular PCP was on holiday so another PCP diagnosed me with an ear infection and prescribed medications for dizziness and the ear infection.
I collapsed the next week on Thanksgiving Day with severe dizziness, nausea and vomiting unable to lift my head off of the ground. My husband called 911 and I was taken to the Mayo emergency department. A CT scan revealed multiple lesions in my brain and I was admitted to Mayo hospital.
Hospitalization after Emergency Care, Diagnosis and Treatment:
After many tests (most of this time I don’t remember), I was diagnosed with DLBCL lymphoma with CNS involvement as I had cancerous lesions in my brain and elsewhere in my body. I received a week of chemotherapy in the hospital with multiple cancer medications (Matrix treatment) and was released 15 days after admission. I went home using a walker because the brain lesions affected my equilibrium and I was prone to occasional loss of balance and falling.
I have since completed 8 rounds of chemotherapy, 4 in hospital Matrix treatments alternated with 4 outpatient RCHOP treatments. All of the lesions in my brain and other areas of my body showed complete resolution on the mid treatment and post chemotherapy brain MRI and PET scans so a great result.
My current status of waiting for a BMT:
I am in a holding pattern waiting for my bone marrow to hopefully recover enough for the autologous stem cell transplant. Both my hematology oncologist and the BMT doctor indicated the high rate of recurrence with the CNS lymphoma and how important the transplant is to complete recovery. They did a great job in explaining this to me and my husband who were initially reluctant to proceed with this very intensive process. So appreciative of my treatment by the great medical teams at Mayo.
My first stem cell collection attempt in June failed as there were not enough stem cells for collection. The BMT doctor had indicated this was a possibility due to low blood counts but wanted to try. It was agreed this was not unexpected with the intensive chemotherapy I had received. I have been given more time to allow continued bone marrow recovery in hopes for a successful stem cell collection.
I will find out later this week if my counts have improved enough to try for collection again so I can hopefully proceed with autologous transplant. I have not had labs since mid August and these did show some improvement so I am hopeful for this week’s counts. If my bone marrow suppression has not improved, we will discuss the possibility of moving forward with the donor transplant process. I know that as intimidating and risky as the donor transplant process would be, it would be far worse if the CNS lymphoma recurred and caused more severe impairment to my quality of life. But still not an easy choice to make.
Many thanks for letting me share my journey so far. Hopefully I will be able to post a happy ending to this story in the future. So much gratitude to the amazing Mayo doctors and their teams for their compassionate care during this challenging time.
I want the thank secglc2 for the comments that were made. Like you I placed my trust in the ‘Man upstairs’ and how He was truly my helped me through this part of my life.
When I was first diagnosed I was placed into ICU. I do not remember any of this part of my hospital experience but what my wife states, I was not in a coma but I was incognito for the first week that I was in the hospital. During my first week I was pulling out IV lines and did not understand anything that was stated to me and I did not make any sense when I tried to talk. I was restrained during this time. Thank God I do not remember any of this time. Fortunately I do not remember any of this.
I have had to relearn how to write and also to use my computer. As we came down the the end, a MRI was done. The Hope was that it would show a negative (or normal) result and it was not normal. Thought at this time, with me being older (77), was not necessarily bad but May mean future issues. Well, in March of 2023, it will be 7 years. since I was diagnosed.
As I mentioned earlier, the ‘Man upstairs’ has been with me all along. The truth is this that was with me during the good times as well as the times when you do not know where He is. He is with you more when you don’t see Him, or when you don’t feel Him. Sometimes those are the times He’s there when it’s the most difficult times of your life.
Thank you for this encouraging post. Just what I needed to hear today. My 77 yr husband was just diagnosed with CNS Lymphoma on 6/20/24 and is scheduled for 14 treatments of methotrexate (3 down so far). The diagnosis is scary but our God is mighty to save and we are praying for many more years together.
Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.
I was diagnosed with primary CNSLymphoma in 2019. I went through 6 rounds of MRT chemo, then stem cell transplant. I have fully recovered. I pray the same for you. Have you seen LLS.org? It is a helpful website with an abundance of resources.
Hi @mepowers, that is kind of you to share with @kbaron by email. It's best to share contact information by using the secure private message function rather than posting emails in the public forum. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.
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.
Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.
Hello! We received a phone call from Mayo. He’s been approved!! Now waiting for Insurance to approve the consultation. Then we will run down to AZ. Very excited to this next step. Thanks for checking in.
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Good morning @j0318. I think I was holding my breath throughout my reading your story! You were so fortunate to finally get a diagnosis before it was too late!
As you and I have learned, blood cancers can be a challenge to diagnose but they’re often not subtle. My gosh, I’m so happy for you that you’re now to the point where you can have the bone marrow transplant to help keep you in remission.
Being at Mayo puts you in the very best of hands for your care. I’m a bit biased of course, but I own my life to my transplant doctor and BMT team. They all do incredible work there and want the very best outcome for their patients. After your epic odyessy, you must feel a huge sense of relief being there! There’s an underlying sense of calm assuredness just being at Mayo…I still feel it every time I walk into those buildings. Looking forward to my followup early October!
So from what I’m understanding, you have 2 potential options for the BMT. Either using your own cells if blood numbers rebound enough to harvest or use donor cells.
There are, of course, risks to both procedures. Using your own cells (autologous) the recovery process is a little faster and there’s no risk of cell rejection. I’m not sure of the percentage of risk relapse of your condition if you use your own cells. That’s a good question for your hematologist oncologist.
Using donor cells, you get an entirely new immune system which, at least in my AML, gave me a high percentage that my condition wouldn’t return. I’m 5 years into a successful transplant. I would quite literally not be here without it. It was worth the risk and the lengthy recovery time. I was 65 years at the time. Now I’m 70, energetic, healthy and feel as though nothing has ever happened. I wouldn’t hesitate a nanosecond if I had to do it all over again.
So you do have some decisions to make. What do your doctors feel is the best option?
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4 ReactionsI was recently diagnosed with CNS DLBCL and am currently being treated at Mayo for this.
It is so encouraging to read about other’s CNS remission after completing treatment. Lori I also very much appreciated reading your BMT story and your encouraging comments in the site for so many people going thru the transplant process as this is part of my prescribed treatment. I am 62 and in good health so your story gives me hope for a successful transplant.
After reading the recent posts about CNS lymphoma, I decided to share my story since CNS lymphoma is not a common diagnosis. Apologies for the length of this but I wanted to include as much detail in case it helps someone else in some way.
I also want to send my best wishes to others dealing with CNS lymphoma and thank those who have shared their story In this site. Sometimes even reading a small part of someone else’s journey can be so encouraging to so many.
My Illness/Symptoms:
I became sick in April 2023 with uncontrollable coughing, daily fevers, night sweats, severe chills, extreme fatigue, slight dizziness, and nausea/loss of appetite. I was tested by my PCP for Covid and many other respiratory illnesses as well as other infections with no diagnosis found.
This illness continued into June and I was concerned that with the daily fevers I would start experiencing cluster headaches which for me can be triggered by fever. My PCP (a doctor I like and respect) let me start 10mg of prednisone daily which is what I use for cluster headache cycles. I noticed within a week that all of the symptoms had resolved and I was able to start working and doing other activities again .
However in early July, I woke up with a sore spot on my scalp and my hair began falling out by the handful. My PCP thought it might be related to the daily prednisone and had already been encouraging me to taper off since this is not a good medicine to be on long term if it is not needed (PCP was not sure that the prednisone was the cause for my improvement since no diagnosis).
I started very slowly tapering off the prednisone over the next months but saw no improvement in the hair loss or sore spot on my scalp. I had a couple of times where I increased the dosage again to alleviate headaches but I eventually finished the prednisone taper in mid October.
Without the daily prednisone, I started noticing increased nausea, fatigue, and some mild dizziness thru October/November but not as severe or disabling as in May/June. I reached out to my PCP the week before Thanksgiving as the symptoms started increasing in intensity. My regular PCP was on holiday so another PCP diagnosed me with an ear infection and prescribed medications for dizziness and the ear infection.
I collapsed the next week on Thanksgiving Day with severe dizziness, nausea and vomiting unable to lift my head off of the ground. My husband called 911 and I was taken to the Mayo emergency department. A CT scan revealed multiple lesions in my brain and I was admitted to Mayo hospital.
Hospitalization after Emergency Care, Diagnosis and Treatment:
After many tests (most of this time I don’t remember), I was diagnosed with DLBCL lymphoma with CNS involvement as I had cancerous lesions in my brain and elsewhere in my body. I received a week of chemotherapy in the hospital with multiple cancer medications (Matrix treatment) and was released 15 days after admission. I went home using a walker because the brain lesions affected my equilibrium and I was prone to occasional loss of balance and falling.
I have since completed 8 rounds of chemotherapy, 4 in hospital Matrix treatments alternated with 4 outpatient RCHOP treatments. All of the lesions in my brain and other areas of my body showed complete resolution on the mid treatment and post chemotherapy brain MRI and PET scans so a great result.
My current status of waiting for a BMT:
I am in a holding pattern waiting for my bone marrow to hopefully recover enough for the autologous stem cell transplant. Both my hematology oncologist and the BMT doctor indicated the high rate of recurrence with the CNS lymphoma and how important the transplant is to complete recovery. They did a great job in explaining this to me and my husband who were initially reluctant to proceed with this very intensive process. So appreciative of my treatment by the great medical teams at Mayo.
My first stem cell collection attempt in June failed as there were not enough stem cells for collection. The BMT doctor had indicated this was a possibility due to low blood counts but wanted to try. It was agreed this was not unexpected with the intensive chemotherapy I had received. I have been given more time to allow continued bone marrow recovery in hopes for a successful stem cell collection.
I will find out later this week if my counts have improved enough to try for collection again so I can hopefully proceed with autologous transplant. I have not had labs since mid August and these did show some improvement so I am hopeful for this week’s counts. If my bone marrow suppression has not improved, we will discuss the possibility of moving forward with the donor transplant process. I know that as intimidating and risky as the donor transplant process would be, it would be far worse if the CNS lymphoma recurred and caused more severe impairment to my quality of life. But still not an easy choice to make.
Many thanks for letting me share my journey so far. Hopefully I will be able to post a happy ending to this story in the future. So much gratitude to the amazing Mayo doctors and their teams for their compassionate care during this challenging time.
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2 ReactionsThank you for this encouraging post. Just what I needed to hear today. My 77 yr husband was just diagnosed with CNS Lymphoma on 6/20/24 and is scheduled for 14 treatments of methotrexate (3 down so far). The diagnosis is scary but our God is mighty to save and we are praying for many more years together.
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1 ReactionHi @kbaron, how is your family member doing? Have you decided on a treatment path?
I was diagnosed with primary CNSLymphoma in 2019. I went through 6 rounds of MRT chemo, then stem cell transplant. I have fully recovered. I pray the same for you. Have you seen LLS.org? It is a helpful website with an abundance of resources.
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1 ReactionHi @mepowers, that is kind of you to share with @kbaron by email. It's best to share contact information by using the secure private message function rather than posting emails in the public forum. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
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2 ReactionsI’d be happy to talk with you or email. You can send me your contact info, or we can correspond over private message.
Regards,
Marci
Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.
Yes it’s scheduled for the first part of September!
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1 ReactionAny update, @shellcat25? Did he have his consult?