My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.
My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.
CarrieAnne, welcome. Allow me to introduce you to @mepowers who has been in remission since 2016 and others in this forum central nervous system lymphoma.
CarrieAnne, does your husband normally return for a yearly follow-up but didn't this year?
CarrieAnne, welcome. Allow me to introduce you to @mepowers who has been in remission since 2016 and others in this forum central nervous system lymphoma.
CarrieAnne, does your husband normally return for a yearly follow-up but didn't this year?
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?
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
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!
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!
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!
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! 🥰😇
Connect
Connect
Like
Helpful
Hug
My husband was diagnosed in 2014, at the age of 60, following symptoms which included excessive tiredness, memory lapses and unsteadiness. His treatment began in January with in hospital chemo that lasted 4 months followed by a Phase II chemo regiment. He was releases the end of May and returned the following January with a severe infection from an infection in his port that radiated down into his right shoulder and arm. Following that, he received multiple transfusions and follow up MRI's for the next five years. We have not been back to his onocologist since early 2020. I don't believes we have ever heard the words cured, although my husband feels he is. Would be interested to hear from anyone that has been diagnosed 5+ years. He will be 68 in December.
CarrieAnne, welcome. Allow me to introduce you to @mepowers who has been in remission since 2016 and others in this forum central nervous system lymphoma.
CarrieAnne, does your husband normally return for a yearly follow-up but didn't this year?
His last scheduled MRI was January of this year.
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?
How is your husband doing now?
Yes. He no longer is seeing his oncologist.
-
Like -
Helpful -
Hug
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
-
Like -
Helpful -
Hug
1 ReactionMy 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!
-
Like -
Helpful -
Hug
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?
-
Like -
Helpful -
Hug
2 ReactionsYes, my transplant was using my own cells. What brought me to connect was just curiosity.
-
Like -
Helpful -
Hug
1 ReactionHello. 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! 🥰😇