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!
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?
The goal is getting your husband’s cancer under control and into remission. The ASCT is a means to accomplishing that. So really, the best thing to do is not dwell on the past or where he had the procedure done. It won’t accomplish anything but cause you unnecessary stress. Honestly, given your circumstances of being caregiver, with your only support system being out of state, I think you made a very reasonable decision to go ahead with the team in Austin. Your husband was already seriously ill and to relocate for an extended stay in another city 3 hours from your home may have compounded things even further for both of you. Please give yourself grace…you’re doing a fabulous job…no second guessing!
No matter where he had the transplant, his body would have gone through the similar challenges with the pre-conditioning chemo and the transplant itself. Being able to use his own cells, reduces the recovery time and some side effects because he won’t have any issues with cell rejection. But there is fatigue and sometimes nausea hanging around for a while. I say this frequently in this group, that stem cell transplant and recovery, whether auto or allo, is a marathon, not a race. Slow and steady gains are normal.
I thought you might like to read through a couple of helpful guides from Mayo for caregivers. The first is for you as a caregiver about how to make sure you’re taken care of too! Not just your husband.
The second link talks about the auto-transplant but also gives more detail as to what to do when your husband comes home in terms of infection control, diet, etc.
It will feel daunting but soon enough you’ll both fall into a rhythm. Look for small accomplishments instead of focusing on the broad picture. That is overwhelming for anyone.
I’m not sure which would be best doctor to contact about your husband’s memory issues. Perhaps talk with his oncology or transplant team to see if they can offer referrals to neurology. The tumor may have caused the lingering memory issues and he may benefit from some type of memory therapist.
It will be nice to have your husband home again. Do you have any questions about how to prepare your home for your husband’s return?
Thank you for the supportive feedback. We wiill have Rehab Without Walls coming to our home once my husband is discharged. They will provide OT, PT and speech for cognitive/memory function, 5 days a week.
I will have help almost daily to stay with my husband while I run errands, go to the gym and meet up with friends.
I will check out the links you posted.
Sorry to mislead you. We did not go to MD Anderson, thought about it, I was too overwhelmed and both our sons live out of state. We live in Austin and worked with TX Oncology and St Davids Tranplant team.
The goal is getting your husband’s cancer under control and into remission. The ASCT is a means to accomplishing that. So really, the best thing to do is not dwell on the past or where he had the procedure done. It won’t accomplish anything but cause you unnecessary stress. Honestly, given your circumstances of being caregiver, with your only support system being out of state, I think you made a very reasonable decision to go ahead with the team in Austin. Your husband was already seriously ill and to relocate for an extended stay in another city 3 hours from your home may have compounded things even further for both of you. Please give yourself grace…you’re doing a fabulous job…no second guessing!
No matter where he had the transplant, his body would have gone through the similar challenges with the pre-conditioning chemo and the transplant itself. Being able to use his own cells, reduces the recovery time and some side effects because he won’t have any issues with cell rejection. But there is fatigue and sometimes nausea hanging around for a while. I say this frequently in this group, that stem cell transplant and recovery, whether auto or allo, is a marathon, not a race. Slow and steady gains are normal.
I thought you might like to read through a couple of helpful guides from Mayo for caregivers. The first is for you as a caregiver about how to make sure you’re taken care of too! Not just your husband.
The second link talks about the auto-transplant but also gives more detail as to what to do when your husband comes home in terms of infection control, diet, etc.
It will feel daunting but soon enough you’ll both fall into a rhythm. Look for small accomplishments instead of focusing on the broad picture. That is overwhelming for anyone.
I’m not sure which would be best doctor to contact about your husband’s memory issues. Perhaps talk with his oncology or transplant team to see if they can offer referrals to neurology. The tumor may have caused the lingering memory issues and he may benefit from some type of memory therapist.
It will be nice to have your husband home again. Do you have any questions about how to prepare your home for your husband’s return?
Sorry to mislead you. We did not go to MD Anderson, thought about it, I was too overwhelmed and both our sons live out of state. We live in Austin and worked with TX Oncology and St Davids Tranplant team.
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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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!
-
Like -
Helpful -
Hug
3 ReactionsMy 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?
Thank you for the supportive feedback. We wiill have Rehab Without Walls coming to our home once my husband is discharged. They will provide OT, PT and speech for cognitive/memory function, 5 days a week.
I will have help almost daily to stay with my husband while I run errands, go to the gym and meet up with friends.
I will check out the links you posted.
-
Like -
Helpful -
Hug
2 ReactionsThe goal is getting your husband’s cancer under control and into remission. The ASCT is a means to accomplishing that. So really, the best thing to do is not dwell on the past or where he had the procedure done. It won’t accomplish anything but cause you unnecessary stress. Honestly, given your circumstances of being caregiver, with your only support system being out of state, I think you made a very reasonable decision to go ahead with the team in Austin. Your husband was already seriously ill and to relocate for an extended stay in another city 3 hours from your home may have compounded things even further for both of you. Please give yourself grace…you’re doing a fabulous job…no second guessing!
No matter where he had the transplant, his body would have gone through the similar challenges with the pre-conditioning chemo and the transplant itself. Being able to use his own cells, reduces the recovery time and some side effects because he won’t have any issues with cell rejection. But there is fatigue and sometimes nausea hanging around for a while. I say this frequently in this group, that stem cell transplant and recovery, whether auto or allo, is a marathon, not a race. Slow and steady gains are normal.
I thought you might like to read through a couple of helpful guides from Mayo for caregivers. The first is for you as a caregiver about how to make sure you’re taken care of too! Not just your husband.
The second link talks about the auto-transplant but also gives more detail as to what to do when your husband comes home in terms of infection control, diet, etc.
It will feel daunting but soon enough you’ll both fall into a rhythm. Look for small accomplishments instead of focusing on the broad picture. That is overwhelming for anyone.
Caregivers for BMT patients:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/support/#ch-tab-navigation
Info on Autologous transplant and after care: https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#Infection_Prevention
I’m not sure which would be best doctor to contact about your husband’s memory issues. Perhaps talk with his oncology or transplant team to see if they can offer referrals to neurology. The tumor may have caused the lingering memory issues and he may benefit from some type of memory therapist.
It will be nice to have your husband home again. Do you have any questions about how to prepare your home for your husband’s return?
-
Like -
Helpful -
Hug
1 ReactionHe has not worked with a doctor for memory issues.
Sorry to mislead you. We did not go to MD Anderson, thought about it, I was too overwhelmed and both our sons live out of state. We live in Austin and worked with TX Oncology and St Davids Tranplant team.
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?
-
Like -
Helpful -
Hug
2 Reactions