@momh, welcome. It can sometimes be distressing when the recommended treatment is "watch and wait". People may equate this with "doing nothing," which is why I personally prefer the term "active surveillance," which implies careful monitoring.
How is your close relative doing? Do you have any questions about living CLL?
All I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
I have an excellent doctor that I trust also which I think keeps me positive. I am in the Wait and Watch period right now. Sounds like you are doing well now I hope that continues for you. Are you in the US? I am in Canada God Bless
I’ve had it for approximately 3+ years. Had a flare up low hemoglobin (6) 4 infusions of Ribitoux (?) and then things changed for the good. Monthly blood tests went to every three months. My first 2 years I had (2) MRIs checking on lymph node size, except for my flare up, things are looking good at this point in time. My Doctor says I’m doing well BUT she also says it can come back in a not good way. That’s why the word chronic (CLL) is used. So waiting for the next blood test is rather worrisome but all I can do is just deal with it. Having a positive attitude is good for me. No loss of weight, good appetite, not tired but I do have very slight night sweats that my Doctor is not worried about at this point in time.
Hello I'm 75 CLL Four yeas, W&W. I would like to meet anyone that has a Mayo CLL specialist. I live in the twin cities and have not found a specialist near me.
Anything you want to share love to get to know you.
Cindy..
Hello I'm 75 CLL Four yeas, W&W. I would like to meet anyone that has a Mayo CLL specialist. I live in the twin cities and have not found a specialist near me.
Anything you want to share love to get to know you.
Cindy..
@cindyjenco Hi Cindy. A belated welcome to Connect. I see you’ve been a member for a couple of years but this is your first venture out in the ‘halls of Connect’. So happy to have you here!
CLL is often very slow to progress so it’s not uncommon for patients to be in ‘watchful waiting’ or active surveillance for many years instead of jumping into any treatment.
You mentioned living in the twin cities so you’re very close to Rochester. If you’d like to request an appointment with a CLL specialist there, here’s a link to get the process started: http://mayocl.in/1mtmR63
I know when you’re in active surveillance with a medical conditon like CLL, it can feel like waiting for the other shoe to drop. But there are reasons for not rushing into treatments at that point. Are you not comfortable with your current hematologist oncologist or just looking for a 2nd opinion?
Hello I'm 75 CLL Four yeas, W&W. I would like to meet anyone that has a Mayo CLL specialist. I live in the twin cities and have not found a specialist near me.
Anything you want to share love to get to know you.
Cindy..
@cindyjenco I live in Minneapolis. We have a MN area CLL support group that meets monthly on Zoom. Check out CLL Society website. Sign up for our group. Most of us treat or get second opinions at Mayo. Their CLL team is fantastic!
@cindyjenco Hi Cindy. A belated welcome to Connect. I see you’ve been a member for a couple of years but this is your first venture out in the ‘halls of Connect’. So happy to have you here!
CLL is often very slow to progress so it’s not uncommon for patients to be in ‘watchful waiting’ or active surveillance for many years instead of jumping into any treatment.
You mentioned living in the twin cities so you’re very close to Rochester. If you’d like to request an appointment with a CLL specialist there, here’s a link to get the process started: http://mayocl.in/1mtmR63
I know when you’re in active surveillance with a medical conditon like CLL, it can feel like waiting for the other shoe to drop. But there are reasons for not rushing into treatments at that point. Are you not comfortable with your current hematologist oncologist or just looking for a 2nd opinion?
@lorettalou
Hello, I have a appointment with a new Oncologist, I needed to change due to insurance coverage. My plan is to have Mayo available when treatment is needed. I would like information about scheduling a 2nd opinion. With my new insurance Allina Health / Aetna I'm not sure if it is insurance Mayo accepts.
Overall information about the appointment, time frame, tests.
Thanks for reaching out..
@lorettalou
Hello, I have a appointment with a new Oncologist, I needed to change due to insurance coverage. My plan is to have Mayo available when treatment is needed. I would like information about scheduling a 2nd opinion. With my new insurance Allina Health / Aetna I'm not sure if it is insurance Mayo accepts.
Overall information about the appointment, time frame, tests.
Thanks for reaching out..
A physician’s referral isn’t necessary, though I have heard it may be helpful. From my own experience with Mayo-Rochester, the hematology department is outstanding and I highly recommend a visit.
Hello I'm 75 CLL Four yeas, W&W. I would like to meet anyone that has a Mayo CLL specialist. I live in the twin cities and have not found a specialist near me.
Anything you want to share love to get to know you.
Cindy..
@cindyjenco
I have a CLL
specialist at Mayo
I am 77 years
I was on wait and watch for 3 years
Started treatment May 2025 with Brukinsa
Numbers returning to
Near normal
Extremely please with my specialist
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@momh, welcome. It can sometimes be distressing when the recommended treatment is "watch and wait". People may equate this with "doing nothing," which is why I personally prefer the term "active surveillance," which implies careful monitoring.
How is your close relative doing? Do you have any questions about living CLL?
-
Like -
Helpful -
Hug
2 Reactions@bochos
I have an excellent doctor that I trust also which I think keeps me positive. I am in the Wait and Watch period right now. Sounds like you are doing well now I hope that continues for you. Are you in the US? I am in Canada God Bless
-
Like -
Helpful -
Hug
1 ReactionJust diagnosed with CLL. Anyone have advice on diet to increase energy?
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Hug
1 ReactionI’ve had it for approximately 3+ years. Had a flare up low hemoglobin (6) 4 infusions of Ribitoux (?) and then things changed for the good. Monthly blood tests went to every three months. My first 2 years I had (2) MRIs checking on lymph node size, except for my flare up, things are looking good at this point in time. My Doctor says I’m doing well BUT she also says it can come back in a not good way. That’s why the word chronic (CLL) is used. So waiting for the next blood test is rather worrisome but all I can do is just deal with it. Having a positive attitude is good for me. No loss of weight, good appetite, not tired but I do have very slight night sweats that my Doctor is not worried about at this point in time.
-
Like -
Helpful -
Hug
3 ReactionsHello I'm 75 CLL Four yeas, W&W. I would like to meet anyone that has a Mayo CLL specialist. I live in the twin cities and have not found a specialist near me.
Anything you want to share love to get to know you.
Cindy..
@cindyjenco Hi Cindy. A belated welcome to Connect. I see you’ve been a member for a couple of years but this is your first venture out in the ‘halls of Connect’. So happy to have you here!
CLL is often very slow to progress so it’s not uncommon for patients to be in ‘watchful waiting’ or active surveillance for many years instead of jumping into any treatment.
You mentioned living in the twin cities so you’re very close to Rochester. If you’d like to request an appointment with a CLL specialist there, here’s a link to get the process started: http://mayocl.in/1mtmR63
I know when you’re in active surveillance with a medical conditon like CLL, it can feel like waiting for the other shoe to drop. But there are reasons for not rushing into treatments at that point. Are you not comfortable with your current hematologist oncologist or just looking for a 2nd opinion?
-
Like -
Helpful -
Hug
1 Reaction@cindyjenco I live in Minneapolis. We have a MN area CLL support group that meets monthly on Zoom. Check out CLL Society website. Sign up for our group. Most of us treat or get second opinions at Mayo. Their CLL team is fantastic!
-
Like -
Helpful -
Hug
4 Reactions@lorettalou
Hello, I have a appointment with a new Oncologist, I needed to change due to insurance coverage. My plan is to have Mayo available when treatment is needed. I would like information about scheduling a 2nd opinion. With my new insurance Allina Health / Aetna I'm not sure if it is insurance Mayo accepts.
Overall information about the appointment, time frame, tests.
Thanks for reaching out..
@cindyjenco Requesting an appointment with Mayo is easy. Here is a link to get you started: http://mayocl.in/1mtmR63
A physician’s referral isn’t necessary, though I have heard it may be helpful. From my own experience with Mayo-Rochester, the hematology department is outstanding and I highly recommend a visit.
As for insurance coverage, that’s determined solely by your insurance company but there is an extensive list of providers listed on this webpage under Billing and insurance:
https://www.mayoclinic.org/billing-insurance/insurance/accepted-insurance/contracted-health-plans
Have you seen this awesome reply by @minnesotajim?
https://connect.mayoclinic.org/comment/1511104/
@cindyjenco
I have a CLL
specialist at Mayo
I am 77 years
I was on wait and watch for 3 years
Started treatment May 2025 with Brukinsa
Numbers returning to
Near normal
Extremely please with my specialist
-
Like -
Helpful -
Hug
4 Reactions