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, 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 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.
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 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?
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?
Thank you Lori for reading my story and for your encouraging response - so appreciated! I will say again what a great job you do in your communication with everyone going thru the BMT process and other challenges.
We had a good meeting with the doctor but unfortunately the opinion is my bone marrow will not support an autologous transplant. It has been 4 months since I completed chemotherapy and it has recovered somewhat, but it is not enough for a successful stem cell collection. The hemoglobin numbers and platelets are in the low end of normal range (improved) but white counts are still very low and haven’t improved.
Apparently the bone marrow suppression can happen after the intensive chemotherapy treatments for the CNS lymphoma. I had multiple platelet transfusions after each chemo round as well as a few blood transfusions. The opinion is that my bone marrow will continue to improve but it may take much longer (a year was mentioned). The concern is that there is a high risk (50%) that the CNS lymphoma could recur before I could be ready for an autologous transplant. Doctors have also stated that it would be much harder to treat the recurrence of the CNS lymphoma.
As a result of all of this, they have started the process for a donor search for the transplant as one option. However, the doctor is suggesting that given the uncertainty around the donor transplant timeline and concerns for disease relapse, and GVHD risks that I consider CAR-T therapy. We also asked about cord blood transplant since the timeline and donor scheduling uncertainty is not a factor. He does not feel cord blood is a good option due slow uncertain engraftment and potential long term immunity issues that can occur. Disappointing to hear this but we trust his expertise on this. At this point, he is much more in favor of CAR-T therapy as a solution.
If the donor transplant is a real option with a successful match and commitment for collection, the nurse reviewing the donor transplant process mentioned the possibility of maintenance chemotherapy during this wait time. She is following up with the doctor since he did not discuss this. I would be open to this since I am 4 months out from my last RCHOP chemotherapy and 6 months out from the last Matrix chemotherapy. However, last PET and brain MRI 1 month ago were clear so this may be why maintenance chemotherapy has not been suggested at this point.
With the CAR-T option, this therapy is usually only given for disease relapse after completion of chemotherapy and BMT so insurance may not allow this. If insurance will cover CAR-T therapy without active disease and no BMT, this is what the doctor prefers as best treatment. At this point, we have a lot to consider and more questions about the CAR-T if that is approved by insurance since yesterday was the first time this option was presented.
My concerns are that CAR-T is so new and there is a lot of information and studies of neurological impacts and effectiveness in treating CNS lymphoma. I am not qualified to interpret all of the information out there, but it’s enough to give pause. However if you read about the Matrix and RCHOP chemotherapy treatments and potential side effects and toxicities, there would be unsettling information as well. I was too sick at diagnosis to do that research. And I deliberately did not read any of this later during treatment because this would not help me heal, only add unnecessary stress. Since I had multiple lesions in my brain and other body areas and would not have survived, it was not a hard decision to take the chemotherapy treatments and accept the potential risks. Since I am in remission and feeling good, it is not as easy to commit.
I realize that all of the next options facing me are difficult.
1 - Do nothing since I am in remission and risk a recurrence of the CNS lymphoma and the unknown impacts to my CNS and quality of life.
2 - Wait and hope for a 10 out of 10 donor match and move forward with a donor BMT and all of the challenges that come with this approach. Possibly receiving maintenance chemotherapy during this wait time if the doctors think my bone marrow can support this treatment.
3 - Move forward with the CAR-T therapy if insurance approves and risk the potential neurotoxicity issues and associated treatments. This is where we need more details of risks/treatments to determine quality of life issues. Lots of questions on how these cells work, lifespan of these cells (potential for additional CAR-T treatment), symptoms if lymphoma recurs and these cells are working to kill the cancer cells, and whatever else I can think of if this becomes a valid option. I have not read much at this point so some of my questions may be answered by more research.
I do want to have the best chance of long term remission and a good quality of life with good mental cognition. So I want to understand as much as is possible how my quality of life will be affected with each choice. So a lot to consider and was definitely overwhelmed after yesterday with the reality of what is here. But I am so very thankful that I am in remission at this time, feeling good, and able to process all of this. Appreciating each good day.
Thank you again for allowing me to share my ongoing journey and for all of the support (spoken and unspoken). I know as I read daily posts on Connect that I send unspoken thoughts/prayers and best wishes to so many who are experiencing these challenges. Lori, many thanks again for reaching out. I will continue to share my journey as it continues and hopefully post some more good progress.
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.
He’s had 4 treatments and is doing very well. The tumor has shrunk 75%, cognitively he is so much better and his sense of humor is back. The downside is that his rbc are very low and he has fatigue and shortness of breath. We have 9 more months to go. I’m doing better too. It is a scary diagnosis but I am doing my best to enjoy every single day we have together.
I am Susan and new to this ....
I took my 73 year old husband to the emergency room due to rapidly declining memory loss. The hospital performed a CT scan where they saw a small mass near his pitutary gland . MRI and Lumbar puncture was performed as well. Once they were able to do a biopsy
to cofirm their suspiscion of PCNSL, they immediately started treating him. His body could not take the 2nd cycle of methotrexate, he started going into Kidney and Liver failure. He was discharged from the hospital when his organs were stable.
The next course of treatment was as an outpatient, reeceiving rituximab and cytarabine for four
cycles. He received an Mri at the end of the last cycle which revealed that the tumor was gone.
My husband has not been able to make any medical decison in regards tohid trearment.
Our adult sons and I decided to proceed with ASCT. The journey as my husbands care giver started 8 months ago. He is currently in rehab to build up his strength after the ASCT. The treatment was rough on his body.
He is very weak, does not eat much and is very depressed.
His short term memory as well as some long memory is not there. He will be discharged soon from the hospital
where he will receive in home rehab.
I do question myself, wether we made the right decision with the treatment. My husband was not in the best of health prior to the diagnosis; long time smoker, workalholic never exercised. I never did reach out for a 2nd opinon, which I regret. MD Anderson was only 3 hours away. Sometimes feelng alone and overwhelmed.
I am Susan and new to this ....
I took my 73 year old husband to the emergency room due to rapidly declining memory loss. The hospital performed a CT scan where they saw a small mass near his pitutary gland . MRI and Lumbar puncture was performed as well. Once they were able to do a biopsy
to cofirm their suspiscion of PCNSL, they immediately started treating him. His body could not take the 2nd cycle of methotrexate, he started going into Kidney and Liver failure. He was discharged from the hospital when his organs were stable.
The next course of treatment was as an outpatient, reeceiving rituximab and cytarabine for four
cycles. He received an Mri at the end of the last cycle which revealed that the tumor was gone.
My husband has not been able to make any medical decison in regards tohid trearment.
Our adult sons and I decided to proceed with ASCT. The journey as my husbands care giver started 8 months ago. He is currently in rehab to build up his strength after the ASCT. The treatment was rough on his body.
He is very weak, does not eat much and is very depressed.
His short term memory as well as some long memory is not there. He will be discharged soon from the hospital
where he will receive in home rehab.
I do question myself, wether we made the right decision with the treatment. My husband was not in the best of health prior to the diagnosis; long time smoker, workalholic never exercised. I never did reach out for a 2nd opinon, which I regret. MD Anderson was only 3 hours away. Sometimes feelng alone and overwhelmed.
Welcome to Connect, @smhk If I can ease your mind at all about not having a second opinion, MD Anderson is one of the top hematology/SCT centers in the US. Many patients go there for their second opinions. Considering your husband had a bone marrow transplant there and it’s only 3 hours from home, you made a really prudent choice.
Your husband and you have been through the wringer the past 8+ months with his cancer treatments and his stem cell transplant. You mentioned your husband had a stem cell transplant using his own cells. The recovery time can take several months but he should see a slow and steady improvement. Working with physical therapist will help quite a bit.
As a caregiver, wow, you had the brunt of all of this! I’m glad you did have backup with your adult sons. It helps when making these huge decisions. I had an Allogenic stem cell transplant 5- years ago, after several months battling AML My husband was my full time caregiver. Though he was a brick through all of it and handled things calmly and smoothly, I watched him age over that year!
We have a growing number of SCT members in our
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group: https://connect.mayoclinic.org/group/car-t-cell-therapy/
I promise you won’t be alone here. If you have any questions, need to vent, need a lifeline…I’m here along with a host of others to offer support.
Has your husband been working with a doctor for his memory issues?
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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 @kbaron, how is your family member doing? Have you decided on a treatment path?
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.
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1 ReactionI 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 ReactionsGood 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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Hug
4 ReactionsThank you Lori for reading my story and for your encouraging response - so appreciated! I will say again what a great job you do in your communication with everyone going thru the BMT process and other challenges.
We had a good meeting with the doctor but unfortunately the opinion is my bone marrow will not support an autologous transplant. It has been 4 months since I completed chemotherapy and it has recovered somewhat, but it is not enough for a successful stem cell collection. The hemoglobin numbers and platelets are in the low end of normal range (improved) but white counts are still very low and haven’t improved.
Apparently the bone marrow suppression can happen after the intensive chemotherapy treatments for the CNS lymphoma. I had multiple platelet transfusions after each chemo round as well as a few blood transfusions. The opinion is that my bone marrow will continue to improve but it may take much longer (a year was mentioned). The concern is that there is a high risk (50%) that the CNS lymphoma could recur before I could be ready for an autologous transplant. Doctors have also stated that it would be much harder to treat the recurrence of the CNS lymphoma.
As a result of all of this, they have started the process for a donor search for the transplant as one option. However, the doctor is suggesting that given the uncertainty around the donor transplant timeline and concerns for disease relapse, and GVHD risks that I consider CAR-T therapy. We also asked about cord blood transplant since the timeline and donor scheduling uncertainty is not a factor. He does not feel cord blood is a good option due slow uncertain engraftment and potential long term immunity issues that can occur. Disappointing to hear this but we trust his expertise on this. At this point, he is much more in favor of CAR-T therapy as a solution.
If the donor transplant is a real option with a successful match and commitment for collection, the nurse reviewing the donor transplant process mentioned the possibility of maintenance chemotherapy during this wait time. She is following up with the doctor since he did not discuss this. I would be open to this since I am 4 months out from my last RCHOP chemotherapy and 6 months out from the last Matrix chemotherapy. However, last PET and brain MRI 1 month ago were clear so this may be why maintenance chemotherapy has not been suggested at this point.
With the CAR-T option, this therapy is usually only given for disease relapse after completion of chemotherapy and BMT so insurance may not allow this. If insurance will cover CAR-T therapy without active disease and no BMT, this is what the doctor prefers as best treatment. At this point, we have a lot to consider and more questions about the CAR-T if that is approved by insurance since yesterday was the first time this option was presented.
My concerns are that CAR-T is so new and there is a lot of information and studies of neurological impacts and effectiveness in treating CNS lymphoma. I am not qualified to interpret all of the information out there, but it’s enough to give pause. However if you read about the Matrix and RCHOP chemotherapy treatments and potential side effects and toxicities, there would be unsettling information as well. I was too sick at diagnosis to do that research. And I deliberately did not read any of this later during treatment because this would not help me heal, only add unnecessary stress. Since I had multiple lesions in my brain and other body areas and would not have survived, it was not a hard decision to take the chemotherapy treatments and accept the potential risks. Since I am in remission and feeling good, it is not as easy to commit.
I realize that all of the next options facing me are difficult.
1 - Do nothing since I am in remission and risk a recurrence of the CNS lymphoma and the unknown impacts to my CNS and quality of life.
2 - Wait and hope for a 10 out of 10 donor match and move forward with a donor BMT and all of the challenges that come with this approach. Possibly receiving maintenance chemotherapy during this wait time if the doctors think my bone marrow can support this treatment.
3 - Move forward with the CAR-T therapy if insurance approves and risk the potential neurotoxicity issues and associated treatments. This is where we need more details of risks/treatments to determine quality of life issues. Lots of questions on how these cells work, lifespan of these cells (potential for additional CAR-T treatment), symptoms if lymphoma recurs and these cells are working to kill the cancer cells, and whatever else I can think of if this becomes a valid option. I have not read much at this point so some of my questions may be answered by more research.
I do want to have the best chance of long term remission and a good quality of life with good mental cognition. So I want to understand as much as is possible how my quality of life will be affected with each choice. So a lot to consider and was definitely overwhelmed after yesterday with the reality of what is here. But I am so very thankful that I am in remission at this time, feeling good, and able to process all of this. Appreciating each good day.
Thank you again for allowing me to share my ongoing journey and for all of the support (spoken and unspoken). I know as I read daily posts on Connect that I send unspoken thoughts/prayers and best wishes to so many who are experiencing these challenges. Lori, many thanks again for reaching out. I will continue to share my journey as it continues and hopefully post some more good progress.
Welcome @cottrell. It appears @draettig's has resonated with several members. I'm glad their post came at the right moment for you and your husband.
Cottrell, how is your husband doing on treatment with methotrexate? And how are YOU doing?
He’s had 4 treatments and is doing very well. The tumor has shrunk 75%, cognitively he is so much better and his sense of humor is back. The downside is that his rbc are very low and he has fatigue and shortness of breath. We have 9 more months to go. I’m doing better too. It is a scary diagnosis but I am doing my best to enjoy every single day we have together.
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1 ReactionI am Susan and new to this ....
I took my 73 year old husband to the emergency room due to rapidly declining memory loss. The hospital performed a CT scan where they saw a small mass near his pitutary gland . MRI and Lumbar puncture was performed as well. Once they were able to do a biopsy
to cofirm their suspiscion of PCNSL, they immediately started treating him. His body could not take the 2nd cycle of methotrexate, he started going into Kidney and Liver failure. He was discharged from the hospital when his organs were stable.
The next course of treatment was as an outpatient, reeceiving rituximab and cytarabine for four
cycles. He received an Mri at the end of the last cycle which revealed that the tumor was gone.
My husband has not been able to make any medical decison in regards tohid trearment.
Our adult sons and I decided to proceed with ASCT. The journey as my husbands care giver started 8 months ago. He is currently in rehab to build up his strength after the ASCT. The treatment was rough on his body.
He is very weak, does not eat much and is very depressed.
His short term memory as well as some long memory is not there. He will be discharged soon from the hospital
where he will receive in home rehab.
I do question myself, wether we made the right decision with the treatment. My husband was not in the best of health prior to the diagnosis; long time smoker, workalholic never exercised. I never did reach out for a 2nd opinon, which I regret. MD Anderson was only 3 hours away. Sometimes feelng alone and overwhelmed.
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3 ReactionsWelcome to Connect, @smhk If I can ease your mind at all about not having a second opinion, MD Anderson is one of the top hematology/SCT centers in the US. Many patients go there for their second opinions. Considering your husband had a bone marrow transplant there and it’s only 3 hours from home, you made a really prudent choice.
Your husband and you have been through the wringer the past 8+ months with his cancer treatments and his stem cell transplant. You mentioned your husband had a stem cell transplant using his own cells. The recovery time can take several months but he should see a slow and steady improvement. Working with physical therapist will help quite a bit.
As a caregiver, wow, you had the brunt of all of this! I’m glad you did have backup with your adult sons. It helps when making these huge decisions. I had an Allogenic stem cell transplant 5- years ago, after several months battling AML My husband was my full time caregiver. Though he was a brick through all of it and handled things calmly and smoothly, I watched him age over that year!
We have a growing number of SCT members in our
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group:
https://connect.mayoclinic.org/group/car-t-cell-therapy/
I promise you won’t be alone here. If you have any questions, need to vent, need a lifeline…I’m here along with a host of others to offer support.
Has your husband been working with a doctor for his memory issues?
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