Hello. My Mom was diagnosed with PCNSL in 2009. She had 2 large tumours. One was pressing on her ocular nerve. They removed it. They radiated the other heavily for 6 months. She was left with severe seizures for many years. She was in her late 60’s. She was in and out of hospital. They finally got her seizures under control. She was… different. Her personality. She liked Mark Walberg. lol She swore a little. Her muscles slowly atrophied. She fell a few times. She had trouble walking. We put her in a nursing home. She has been slowly going down hill. Her metal and emotional health are great. She just is fading away. I am very thankful to all the medical staff over the years that have taken care of her. They have been amazing! I couldn’t have asked for better more caring people to help my Mom. My Mom was a nurse for close to 40 years. I warms my heart yo see her being treated the same way she treated others! It’s been 13 great years and I am so glad my Mom had the strength to get through them! I love her to pieces! 🥰😇
Aw, what a lovely photo of your dear mum. She looks like such a sweet lady and it warms my heart to know she’s being so well taken care of in the nursing home. As a nurse, she certainly gave much love and care to others so I’m happy she’s receiving the same TLC she provided for so many years.
I’m sorry for what she’s had to endure all these years but wow, what a testimony to her inner strength to still be positive and have a great mental attitude in spite of her body failing her. You obviously love her very much and that has also kept her going, no doubt. I hope you both have many more years gather. This was a lovely message right before the holidays,
My dad was just diagnosed with Primary CNS non-Hodgkins lymphoma in the brain. The tumor is over his right ventricle in his parietal lobe. Does anyone have any experience with this type? I'm looking for any info/help/success stories/ or anything to help. Thank you!
My dad was just diagnosed with Primary CNS non-Hodgkins lymphoma in the brain. The tumor is over his right ventricle in his parietal lobe. Does anyone have any experience with this type? I'm looking for any info/help/success stories/ or anything to help. Thank you!
Hello @lisjeanne and welcome to Mayo Clinic Connect. I am so sorry to hear of your father's diagnosis. This must be a challenging time for you, him and your family. It is so helpful to reach out and connect with others who may be able to share their experiences and/or provide you with some support for what you can potentially expect.
There happened to be an existing discussion on this very topic so you will see that I have moved your post so that you can go back and read all of those posts if you click into the discussion. This also may help to more quickly connect you to members such as @secglc2@mepowers and @sheighway12 who have shared previously about their personal and/or family member experience.
Do you know what has been recommended for next steps for your dad?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of chemo, then stem cell transplant. I’m celebrating 2 1/2 years of being cancer free!
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of chemo, then stem cell transplant. I’m celebrating 2 1/2 years of being cancer free!
@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway. https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?
@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway. https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?
My 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of MRT chemo, then stem cell transplant. I remain clear of the disease. I had a stroke when brain biopsy was done. I lost feeling on my left side, but physical therapy helped me. I pray that your wife will regain control of her movements.
My 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
Hi @kippi1950, I wanted to add my welcome to @secglc2's.
I'm so glad to hear that there is no indication of recurrence. What a relief.
Frozen shoulder can take such a long time to rehabilitate. It took me about 13 months to get 80% of my range of motion back. Now 2 years later, I believe I have full use of my arm and strength. It took persistence, patience and dedication to keeping with the daily routine. I found it tedious and hard.
In my case, the cause of frozen shoulder was unknown. Your wife and @secglc2 had more to overcome.
@secglc2, I'm glad that physical therapy helped you. Would you mind sharing how long it took?
Kippi, how long has your wife been doing therapy? Is it a challenge to do the rehab exercises and stick to them?
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I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of MRT chemo, then a stem cell transplant. I am assured that I’m cured!
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2 ReactionsAw, what a lovely photo of your dear mum. She looks like such a sweet lady and it warms my heart to know she’s being so well taken care of in the nursing home. As a nurse, she certainly gave much love and care to others so I’m happy she’s receiving the same TLC she provided for so many years.
I’m sorry for what she’s had to endure all these years but wow, what a testimony to her inner strength to still be positive and have a great mental attitude in spite of her body failing her. You obviously love her very much and that has also kept her going, no doubt. I hope you both have many more years gather. This was a lovely message right before the holidays,
Who’s in the photo with your mom?
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1 ReactionMy dad was just diagnosed with Primary CNS non-Hodgkins lymphoma in the brain. The tumor is over his right ventricle in his parietal lobe. Does anyone have any experience with this type? I'm looking for any info/help/success stories/ or anything to help. Thank you!
Hello @lisjeanne and welcome to Mayo Clinic Connect. I am so sorry to hear of your father's diagnosis. This must be a challenging time for you, him and your family. It is so helpful to reach out and connect with others who may be able to share their experiences and/or provide you with some support for what you can potentially expect.
There happened to be an existing discussion on this very topic so you will see that I have moved your post so that you can go back and read all of those posts if you click into the discussion. This also may help to more quickly connect you to members such as @secglc2 @mepowers and @sheighway12 who have shared previously about their personal and/or family member experience.
Do you know what has been recommended for next steps for your dad?
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Like -
Helpful -
Hug
1 ReactionI was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of chemo, then stem cell transplant. I’m celebrating 2 1/2 years of being cancer free!
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Like -
Helpful -
Hug
3 Reactions@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway.
https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?
I walk every day & eat healthy!
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Hug
1 ReactionMy 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of MRT chemo, then stem cell transplant. I remain clear of the disease. I had a stroke when brain biopsy was done. I lost feeling on my left side, but physical therapy helped me. I pray that your wife will regain control of her movements.
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Like -
Helpful -
Hug
2 ReactionsHi @kippi1950, I wanted to add my welcome to @secglc2's.
I'm so glad to hear that there is no indication of recurrence. What a relief.
Frozen shoulder can take such a long time to rehabilitate. It took me about 13 months to get 80% of my range of motion back. Now 2 years later, I believe I have full use of my arm and strength. It took persistence, patience and dedication to keeping with the daily routine. I found it tedious and hard.
In my case, the cause of frozen shoulder was unknown. Your wife and @secglc2 had more to overcome.
@secglc2, I'm glad that physical therapy helped you. Would you mind sharing how long it took?
Kippi, how long has your wife been doing therapy? Is it a challenge to do the rehab exercises and stick to them?