Wow, 4 months, you sound like an incredibly strong person! I'm happy that your result was so successful! Thank you so much for all the info, it's really really helpful. I do have my Mayo patient portal account set up and it's incredibly convenient. I really pray I won't require a SCT, but yes, I'll have to wait to cross that bridge. You have been so helpful! Thank you again for all of your kind support.
Good morning, @nhlbob It’s been about 2 months since we connected last and I’ve been wondering how you’re doing? Were you able to get some encouraging news from your trip to the clinic in July? Any news on whether you’ll need a SCT or not?
@nhlbob Well, on behalf of Mayo-Rochester let me welcome you to the Clinic. I spent 4 months there during my SCT and recovery along with return trips. It’s a wonderful city and the Clinic is like no other. I know you’re going to be in great hands! You’ll be pretty impressed with the level of care and concern, and how everything runs so seamlessly!
There are a number of conversations on Connect with other members about visiting Mayo-Rochester for the first time which you might find interesting. Ideas for restaurants, sights to see, etc.
Here is the link to the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Along with that, I’ve posted a link to discussions on how to get off to the best start with a new specialist and a visitor guide for preparing to make the most of your first appointment. https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment
Do you have your patient portal account set up with Mayo? It will be your go-to for all your information about appointments, where they are located, how to prepare for them. It also posts all your lab results, letters and notes from doctors and other providers, health records, etc.
If you have an early lab appointment, I suggest going 1/2 hour early for this if you have other appointments right after the labs. The lab is a super busy place and can get little jammed up early in the morning. But everything runs smoothly and efficiently.
All of the buildings are connected with great signage for directions. There are also tons of volunteers (in Blue Jackets) to give you directions or answer questions. If you stay on the Sub Level, marked S on the elevator, all of the main buildings are contiguously linked and easy to go from Mayo-Gonda-Charlton buildings.
Here’s a map of the Rochester Campus https://mcforms.mayo.edu/mc1600-mc1699/mc1663-55.pdf?_ga=2.128046028.1155008562.1642545706-1992796757.1642545706
You asked if I knew of anyone with MCL that hasn’t needed a transplant…this is out of my area of experience so I can’t really answer. It’s a good question for your hematologist/oncologist. You might also ask if you do need one if it will be an autologous transplant using your own cells or an allogenic transplant using a donor’s cells. But again, this is a bridge to cross at a later date! You may respond well to treatment and not require one ☺️
This next 2 weeks will go by quickly. Anything else I can help you with?
Wow, 4 months, you sound like an incredibly strong person! I'm happy that your result was so successful! Thank you so much for all the info, it's really really helpful. I do have my Mayo patient portal account set up and it's incredibly convenient. I really pray I won't require a SCT, but yes, I'll have to wait to cross that bridge. You have been so helpful! Thank you again for all of your kind support.
@nhlbob Well, on behalf of Mayo-Rochester let me welcome you to the Clinic. I spent 4 months there during my SCT and recovery along with return trips. It’s a wonderful city and the Clinic is like no other. I know you’re going to be in great hands! You’ll be pretty impressed with the level of care and concern, and how everything runs so seamlessly!
There are a number of conversations on Connect with other members about visiting Mayo-Rochester for the first time which you might find interesting. Ideas for restaurants, sights to see, etc.
Here is the link to the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Along with that, I’ve posted a link to discussions on how to get off to the best start with a new specialist and a visitor guide for preparing to make the most of your first appointment. https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment
Do you have your patient portal account set up with Mayo? It will be your go-to for all your information about appointments, where they are located, how to prepare for them. It also posts all your lab results, letters and notes from doctors and other providers, health records, etc.
If you have an early lab appointment, I suggest going 1/2 hour early for this if you have other appointments right after the labs. The lab is a super busy place and can get little jammed up early in the morning. But everything runs smoothly and efficiently.
All of the buildings are connected with great signage for directions. There are also tons of volunteers (in Blue Jackets) to give you directions or answer questions. If you stay on the Sub Level, marked S on the elevator, all of the main buildings are contiguously linked and easy to go from Mayo-Gonda-Charlton buildings.
Here’s a map of the Rochester Campus https://mcforms.mayo.edu/mc1600-mc1699/mc1663-55.pdf?_ga=2.128046028.1155008562.1642545706-1992796757.1642545706
You asked if I knew of anyone with MCL that hasn’t needed a transplant…this is out of my area of experience so I can’t really answer. It’s a good question for your hematologist/oncologist. You might also ask if you do need one if it will be an autologous transplant using your own cells or an allogenic transplant using a donor’s cells. But again, this is a bridge to cross at a later date! You may respond well to treatment and not require one ☺️
This next 2 weeks will go by quickly. Anything else I can help you with?
It’s great to hear you’re feeling a whole lot better and finally getting some sleep. Indecision can sure mess with a person’s head! ☺️
Your oncologist is right, don’t worry about crossing that SCT (stem cell transplant) bridge until you come to it. And yes, I did have a allogenic stem cell transplant using an anonymous donor who matched me, 10/10 bio markers. I owe that young man my life. Without his generous donation to a complete stranger, (me) 3 years ago, I would not be here today. So please, don’t fear the worst. While the SCT is not a walk on the beach it is doable and can give you a second chance at life. If and when you get to that point, I’m happy to be your guide as I got quite an extensive education during my experience. I had my transplant at Mayo-Rochester. That’s why I referred to it as my home away from home…the Mother Ship! It is truly a place of hope! You’ll be in amazing hands there.
I’ve not stayed at the Hyatt House but you’ll be very near the Clinic and an easy walk. There’s no shortage of great restaurants, lovely museums, stores, parks, etc, nearby as well. Pardon me if you’ve mentioned this before, but have you ever been to Rochester previously?
Thank you so much for offering support should I need an SCT, Lori, it's really appreciated. Have you ever heard of anyone not needing one after treatment?
This will be my first time to Rochester. Coming a few days prior to my first appointment to have a little time to learn the lay of the land.
I do feel a whole lot better and have been able to sleep which has been great. The one thing still lingering for me is whether I'll require a stem cell transplant after the BR treatment if that's the route taken. The oncologist said we'll cross that bridge when we get to it and don't need to worry about it at the moment, but my OCD keeps reminding me there's still a potential worry ahead. Survivors I've spoken to have said SCT's are not pleasant which scares me. Did you go through one?
The lodging is set, I'm staying at the Hyatt House hotel. Ever stay there?
It’s great to hear you’re feeling a whole lot better and finally getting some sleep. Indecision can sure mess with a person’s head! ☺️
Your oncologist is right, don’t worry about crossing that SCT (stem cell transplant) bridge until you come to it. And yes, I did have a allogenic stem cell transplant using an anonymous donor who matched me, 10/10 bio markers. I owe that young man my life. Without his generous donation to a complete stranger, (me) 3 years ago, I would not be here today. So please, don’t fear the worst. While the SCT is not a walk on the beach it is doable and can give you a second chance at life. If and when you get to that point, I’m happy to be your guide as I got quite an extensive education during my experience. I had my transplant at Mayo-Rochester. That’s why I referred to it as my home away from home…the Mother Ship! It is truly a place of hope! You’ll be in amazing hands there.
I’ve not stayed at the Hyatt House but you’ll be very near the Clinic and an easy walk. There’s no shortage of great restaurants, lovely museums, stores, parks, etc, nearby as well. Pardon me if you’ve mentioned this before, but have you ever been to Rochester previously?
Oh, what a relief to know you’re heading to Mayo! I know from experience the peace of mind that we feel when we reach the Mother Ship…hope embraces you. ☺️ I can tell you’re feel a lot better about all of this now after all the indecision and second guessing.
Safe travels to Rochester! It’s my home away from home! Please let me know how everything goes for you. All set with lodging?
I do feel a whole lot better and have been able to sleep which has been great. The one thing still lingering for me is whether I'll require a stem cell transplant after the BR treatment if that's the route taken. The oncologist said we'll cross that bridge when we get to it and don't need to worry about it at the moment, but my OCD keeps reminding me there's still a potential worry ahead. Survivors I've spoken to have said SCT's are not pleasant which scares me. Did you go through one?
The lodging is set, I'm staying at the Hyatt House hotel. Ever stay there?
Hi Lori - thank you so much for the contact. Since we last messaged, I've had two tele med appointments with my Mayo oncologist who is absolutely great!!! I can't tell you te level of comfort I feel and the confidence I have in in compared to the doctors inBangkok. I'm flying to Mayo Rochester in two weeks. I've had a neuromuscular issue for a decade that my Mayo oncologist at wanted me to have a workup done with a neurologist there to see if the lymphoma is related or not, as that would dictate treatment. My Mayo oncologist has also requested the pathology sample from the Bangkok hospital because he wants to make sure the disease is actually mantle cell or if it's some other subtype. They'll be running FISH, genetic and next gen sequencing tests which will give a much clearer picture of things. Assuming the diagnosis is still mantle cell after the testing, my Mayo oncologist had indicated if he is certain the neuromuscular symptoms are separate (which he suspects they will be), he indicated I would be a candidate for watch and wait. But he also said that he feels I would go into remission with perhaps only 4 cycles of the BR treatment and might not need the full 6 cycles which is standard. So I'll hopefully know where things stand by August 5th.
Oh, what a relief to know you’re heading to Mayo! I know from experience the peace of mind that we feel when we reach the Mother Ship…hope embraces you. ☺️ I can tell you’re feel a lot better about all of this now after all the indecision and second guessing.
Safe travels to Rochester! It’s my home away from home! Please let me know how everything goes for you. All set with lodging?
Hi @nhlbob, it’s been a while since we’ve chatted and I’ve been wondering where you are on treatment. I know you were struggling with water or not to stay in Bangkok or head to the US. Did you make any decision about that and the treatment options?
Hi Lori - thank you so much for the contact. Since we last messaged, I've had two tele med appointments with my Mayo oncologist who is absolutely great!!! I can't tell you te level of comfort I feel and the confidence I have in in compared to the doctors inBangkok. I'm flying to Mayo Rochester in two weeks. I've had a neuromuscular issue for a decade that my Mayo oncologist at wanted me to have a workup done with a neurologist there to see if the lymphoma is related or not, as that would dictate treatment. My Mayo oncologist has also requested the pathology sample from the Bangkok hospital because he wants to make sure the disease is actually mantle cell or if it's some other subtype. They'll be running FISH, genetic and next gen sequencing tests which will give a much clearer picture of things. Assuming the diagnosis is still mantle cell after the testing, my Mayo oncologist had indicated if he is certain the neuromuscular symptoms are separate (which he suspects they will be), he indicated I would be a candidate for watch and wait. But he also said that he feels I would go into remission with perhaps only 4 cycles of the BR treatment and might not need the full 6 cycles which is standard. So I'll hopefully know where things stand by August 5th.
Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.
Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.
Hi @nhlbob, it’s been a while since we’ve chatted and I’ve been wondering where you are on treatment. I know you were struggling with water or not to stay in Bangkok or head to the US. Did you make any decision about that and the treatment options?
Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.
Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.
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Good morning, @nhlbob It’s been about 2 months since we connected last and I’ve been wondering how you’re doing? Were you able to get some encouraging news from your trip to the clinic in July? Any news on whether you’ll need a SCT or not?
Wow, 4 months, you sound like an incredibly strong person! I'm happy that your result was so successful! Thank you so much for all the info, it's really really helpful. I do have my Mayo patient portal account set up and it's incredibly convenient. I really pray I won't require a SCT, but yes, I'll have to wait to cross that bridge. You have been so helpful! Thank you again for all of your kind support.
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2 Reactions@nhlbob Well, on behalf of Mayo-Rochester let me welcome you to the Clinic. I spent 4 months there during my SCT and recovery along with return trips. It’s a wonderful city and the Clinic is like no other. I know you’re going to be in great hands! You’ll be pretty impressed with the level of care and concern, and how everything runs so seamlessly!
There are a number of conversations on Connect with other members about visiting Mayo-Rochester for the first time which you might find interesting. Ideas for restaurants, sights to see, etc.
Here is the link to the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Along with that, I’ve posted a link to discussions on how to get off to the best start with a new specialist and a visitor guide for preparing to make the most of your first appointment.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment
Do you have your patient portal account set up with Mayo? It will be your go-to for all your information about appointments, where they are located, how to prepare for them. It also posts all your lab results, letters and notes from doctors and other providers, health records, etc.
If you have an early lab appointment, I suggest going 1/2 hour early for this if you have other appointments right after the labs. The lab is a super busy place and can get little jammed up early in the morning. But everything runs smoothly and efficiently.
All of the buildings are connected with great signage for directions. There are also tons of volunteers (in Blue Jackets) to give you directions or answer questions. If you stay on the Sub Level, marked S on the elevator, all of the main buildings are contiguously linked and easy to go from Mayo-Gonda-Charlton buildings.
Here’s a map of the Rochester Campus https://mcforms.mayo.edu/mc1600-mc1699/mc1663-55.pdf?_ga=2.128046028.1155008562.1642545706-1992796757.1642545706
You asked if I knew of anyone with MCL that hasn’t needed a transplant…this is out of my area of experience so I can’t really answer. It’s a good question for your hematologist/oncologist. You might also ask if you do need one if it will be an autologous transplant using your own cells or an allogenic transplant using a donor’s cells. But again, this is a bridge to cross at a later date! You may respond well to treatment and not require one ☺️
This next 2 weeks will go by quickly. Anything else I can help you with?
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2 ReactionsThank you so much for offering support should I need an SCT, Lori, it's really appreciated. Have you ever heard of anyone not needing one after treatment?
This will be my first time to Rochester. Coming a few days prior to my first appointment to have a little time to learn the lay of the land.
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1 ReactionIt’s great to hear you’re feeling a whole lot better and finally getting some sleep. Indecision can sure mess with a person’s head! ☺️
Your oncologist is right, don’t worry about crossing that SCT (stem cell transplant) bridge until you come to it. And yes, I did have a allogenic stem cell transplant using an anonymous donor who matched me, 10/10 bio markers. I owe that young man my life. Without his generous donation to a complete stranger, (me) 3 years ago, I would not be here today. So please, don’t fear the worst. While the SCT is not a walk on the beach it is doable and can give you a second chance at life. If and when you get to that point, I’m happy to be your guide as I got quite an extensive education during my experience. I had my transplant at Mayo-Rochester. That’s why I referred to it as my home away from home…the Mother Ship! It is truly a place of hope! You’ll be in amazing hands there.
I’ve not stayed at the Hyatt House but you’ll be very near the Clinic and an easy walk. There’s no shortage of great restaurants, lovely museums, stores, parks, etc, nearby as well. Pardon me if you’ve mentioned this before, but have you ever been to Rochester previously?
I do feel a whole lot better and have been able to sleep which has been great. The one thing still lingering for me is whether I'll require a stem cell transplant after the BR treatment if that's the route taken. The oncologist said we'll cross that bridge when we get to it and don't need to worry about it at the moment, but my OCD keeps reminding me there's still a potential worry ahead. Survivors I've spoken to have said SCT's are not pleasant which scares me. Did you go through one?
The lodging is set, I'm staying at the Hyatt House hotel. Ever stay there?
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1 ReactionOh, what a relief to know you’re heading to Mayo! I know from experience the peace of mind that we feel when we reach the Mother Ship…hope embraces you. ☺️ I can tell you’re feel a lot better about all of this now after all the indecision and second guessing.
Safe travels to Rochester! It’s my home away from home! Please let me know how everything goes for you. All set with lodging?
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Like -
Helpful -
Hug
2 ReactionsHi Lori - thank you so much for the contact. Since we last messaged, I've had two tele med appointments with my Mayo oncologist who is absolutely great!!! I can't tell you te level of comfort I feel and the confidence I have in in compared to the doctors inBangkok. I'm flying to Mayo Rochester in two weeks. I've had a neuromuscular issue for a decade that my Mayo oncologist at wanted me to have a workup done with a neurologist there to see if the lymphoma is related or not, as that would dictate treatment. My Mayo oncologist has also requested the pathology sample from the Bangkok hospital because he wants to make sure the disease is actually mantle cell or if it's some other subtype. They'll be running FISH, genetic and next gen sequencing tests which will give a much clearer picture of things. Assuming the diagnosis is still mantle cell after the testing, my Mayo oncologist had indicated if he is certain the neuromuscular symptoms are separate (which he suspects they will be), he indicated I would be a candidate for watch and wait. But he also said that he feels I would go into remission with perhaps only 4 cycles of the BR treatment and might not need the full 6 cycles which is standard. So I'll hopefully know where things stand by August 5th.
How are you? I hope well!
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3 ReactionsHi @nhlbob, it’s been a while since we’ve chatted and I’ve been wondering where you are on treatment. I know you were struggling with water or not to stay in Bangkok or head to the US. Did you make any decision about that and the treatment options?
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2 ReactionsI would go with "watch and wait". You could have your blood tested every month for any changes. The disease and the treatments both scare me.
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