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. 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,
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! 🥰😇
Good morning, @secglc2 Let me officially welcome you to Mayo Connect. It’s great having you here. As you’ve probably discovered by now we’re a community based forum where members come together to share their experiences and life journeys to help each other find answers and offer encouragement.
Was your SCT done using your own cells or did your have a non-related donor? If you had an allogenic transplant have you experienced any GvHD issues?
I also started another group discussion for people with Chronic GvHD symptoms and again, would really encourage you to post in this group as well if you’re experiencing any Chronic graft vs Host disease. https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
With the number of people receiving stem cell transplants there are very few forums where we can openly talk about our experiences so I’m trying to grow our presence on Connect. It’s such an amazing chance for a second life but it’s not an easy journey. Any information we give can really be helpful and encouraging to countless people who might be facing our same challenges and see a positive outcome!
My local hospital couldn't find a diagnosis. I was medi-flighted to Mayo in Rochester, who after just 5 days diagnosed me. I went through 6 rounds of MRT chemo and then a stem cell transplant. It's been 2 years, I think I'm cured!
Good morning, @secglc2 Let me officially welcome you to Mayo Connect. It’s great having you here. As you’ve probably discovered by now we’re a community based forum where members come together to share their experiences and life journeys to help each other find answers and offer encouragement.
Was your SCT done using your own cells or did your have a non-related donor? If you had an allogenic transplant have you experienced any GvHD issues?
I also started another group discussion for people with Chronic GvHD symptoms and again, would really encourage you to post in this group as well if you’re experiencing any Chronic graft vs Host disease. https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
With the number of people receiving stem cell transplants there are very few forums where we can openly talk about our experiences so I’m trying to grow our presence on Connect. It’s such an amazing chance for a second life but it’s not an easy journey. Any information we give can really be helpful and encouraging to countless people who might be facing our same challenges and see a positive outcome!
My local hospital couldn't find a diagnosis. I was medi-flighted to Mayo in Rochester, who after just 5 days diagnosed me. I went through 6 rounds of MRT chemo and then a stem cell transplant. It's been 2 years, I think I'm cured!
Carrie Anne,
I have a MRI in September which I believe will be my last semi annual MRI. When I was first diagnosed with CNS Lymphomas in December of 2016, Mayo set up a protocol for my treatment and follow up for my return to my hometown. In my first 3 years after my treatments, I had MRIs four times per year. The following two years have been twice a year. Mayo recommended getting an annual MRI for the rest of my life. I will see what my local oncologist says in September. I too have been called unremarkable. I’ve never been so thrilled to be unremarkable. ;). I’m not sure if age is an issue, but I’ll be 61 in a few weeks. Feel free to follow up with any questions. Marci
Right. And because there was nothing remarkable (that's a good thing), you didn't have to have an appointment with the oncologist. Did I get that right?
Right. And because there was nothing remarkable (that's a good thing), you didn't have to have an appointment with the oncologist. Did I get that right?
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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!
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,
Who’s in the photo with your mom?
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1 ReactionI 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 ReactionsHello. 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! 🥰😇
Yes, my transplant was using my own cells. What brought me to connect was just curiosity.
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1 ReactionGood morning, @secglc2 Let me officially welcome you to Mayo Connect. It’s great having you here. As you’ve probably discovered by now we’re a community based forum where members come together to share their experiences and life journeys to help each other find answers and offer encouragement.
Congratulations for your 2 year success story! After reading your comment above, I realized you’ve been a member for almost a year but this is your first time joining in a conversation. I’d love to encourage you to share your cancer and transplant journey in this group: https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Was your SCT done using your own cells or did your have a non-related donor? If you had an allogenic transplant have you experienced any GvHD issues?
I also started another group discussion for people with Chronic GvHD symptoms and again, would really encourage you to post in this group as well if you’re experiencing any Chronic graft vs Host disease. https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
With the number of people receiving stem cell transplants there are very few forums where we can openly talk about our experiences so I’m trying to grow our presence on Connect. It’s such an amazing chance for a second life but it’s not an easy journey. Any information we give can really be helpful and encouraging to countless people who might be facing our same challenges and see a positive outcome!
What first brought you to Connect last October?
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2 ReactionsMy local hospital couldn't find a diagnosis. I was medi-flighted to Mayo in Rochester, who after just 5 days diagnosed me. I went through 6 rounds of MRT chemo and then a stem cell transplant. It's been 2 years, I think I'm cured!
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1 ReactionCarrie Anne,
I have a MRI in September which I believe will be my last semi annual MRI. When I was first diagnosed with CNS Lymphomas in December of 2016, Mayo set up a protocol for my treatment and follow up for my return to my hometown. In my first 3 years after my treatments, I had MRIs four times per year. The following two years have been twice a year. Mayo recommended getting an annual MRI for the rest of my life. I will see what my local oncologist says in September. I too have been called unremarkable. I’ve never been so thrilled to be unremarkable. ;). I’m not sure if age is an issue, but I’ll be 61 in a few weeks. Feel free to follow up with any questions. Marci
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1 ReactionYes. He no longer is seeing his oncologist.
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1 ReactionRight. And because there was nothing remarkable (that's a good thing), you didn't have to have an appointment with the oncologist. Did I get that right?
How is your husband doing now?