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?
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?
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?
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.
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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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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
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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?
His last scheduled MRI was January of 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?
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.
Ann, I sent you a PM with my contact info. Marci