Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.

I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@rola

So beautifully written, thank you, it reached me today! Just came back from Moffit yesterday and my mind was spinning. My CLL is stagc1 was 0.

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Hello, @rola. We all need a lifeline sometimes, don’t we? It just seems to be in our human nature to ‘think the worst’ with some of the medical diagnoses we get. Been there myself! 😉 It can make all the difference hearing from people who have gone through the same issues to give you some positive information and encouragement. I’m so happy you found the reply I wrote to @dani349 helpful for you as well!
From what I understand, at Stage 1, usually a patient is still considered low risk and no treatment is necessary. What did your hematologist have to say about your change?

REPLY
@loribmt

@dani349. I’m a firm believer that knowledge is power. The article I recommended is a good primer for information from a credible source to let you know a little more about your condition. But not everything mentioned in it will be directed at you…it’s more of an overall educational article.

You don’t have to worry that you’re not staged. I’d look at it as a good thing…it hasn’t progressed to the point of even being staged or needing any treatment. From what I’m reading with your posts, you have a great doctor who is concerned and not dismissive. You have labs at reasonable intervals to keep an eye out for any possible changes. CLL/SLL develop very slowly and some patients never have to be treated. By checking your labs your doctor will look for trends in the results. Seldom does one test determine a diagnosis. I know it can be unnerving waiting to see blood results and you’ll most likely be antsy each time. I’ve had literally hundreds of blood tests over the past 5 years. Each one is a mystery trip! But if there’s something skewed, then I talk to my doctor and we work it out together. I fear nothing anymore except…heights. Still not a fan of being on the edge of a cliff. ☺️

There are so many amazing treatment options of CLL. I’ve shared this story before with other members. There’s a young neighbor next door who developed CLL sometime in his 20s. He found that out after he and his wife were married. It was 10 years before he needed to begin a daily pill form medication and of course he was scared! He’s been on that about 5 years now and doing fabulous! He and his wife have 4 little kids! He’s out there daily, jogging, riding bikes, playing football…nothing slows this man down! It’s that way for most people who have SLL or CLL. They get treatment and recover. You really don’t need to live in fear of this disease. Yes, it’s a ‘cancer’ word but it is one of the most highly treatable forms of this disease. ‘’Stuff’ happens and we learn to face it head on…deal with things as they come but don’t let the fear of the unknown destroy the amazing life you have right now! Fear just robs us of our precious time!

I want to share a bit of my life with you. I want to infuse you with hope!
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

I hope today is filled with positive energy for you!

Jump to this post

So beautifully written, thank you, it reached me today! Just came back from Moffit yesterday and my mind was spinning. My CLL is stagc1 was 0.

REPLY
@traceyt

Hi Colleen,
Thank you for the welcome!
Yes. Sorry for my shorthand. FL stands for Follicular Lymphoma, which normally does not require treatment for years.
My recommended chemo drugs are Bendamustine and Rituximab for 6 cycles.
I’m curious if any other patients in this group have bony lesions but otherwise asymptomatic.
Many thanks!

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@traceyt, I believe fellow member @jeremy17 was diagnosed with follicular lymphoma with bone lesions.

You might also be interested in these 2 related discussions:

- Follicular Lymphoma: looking to connect with others
https://connect.mayoclinic.org/discussion/follicular-lymphoma-at-age-44/

- Starting Bendamustine and Rituxin for Follicular Lymphoma
https://connect.mayoclinic.org/discussion/starting-bendamustine-and-rituxin-for-follicular-lymphoma/

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@colleenyoung

Welcome @traceyt. Great to hear that your labs are all good. To help me connect you with others, can you confirm - does FL stand for follicular lymphoma? What chemo regimen is being recommended for you?

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Hi Colleen,
Thank you for the welcome!
Yes. Sorry for my shorthand. FL stands for Follicular Lymphoma, which normally does not require treatment for years.
My recommended chemo drugs are Bendamustine and Rituximab for 6 cycles.
I’m curious if any other patients in this group have bony lesions but otherwise asymptomatic.
Many thanks!

REPLY
@traceyt

Hello,
I am new to this group and so appreciate what others have shared. I am in a quandary. I was diagnosed with FL 3 months ago due to one enlarged lymph node below my left jaw, otherwise, I am completely asymptomatic. Two needle biopsies confirmed lymphoma cells and the node excision confirmed FL.
My oncologist suggested Wait and Watch until my PET scan, follow-up bone scans and MRIs show multiple bony lesions in my spine, hips and pelvis. Again, I have no pain anywhere! However, due to the lesions chemo is recommended to hopefully put me in remission. Like other comments above, my team describes this as a chronic condition that will always need watching and is not terminal.
I am curious if any others have bony lesions with FL who decided to continue to Wait and Watch?
BTW, my labs are all good, including calcium and creatine, but they started giving me calcium injections last month to reduce fracture risk.
Thank you, Everyone!

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Welcome @traceyt. Great to hear that your labs are all good. To help me connect you with others, can you confirm - does FL stand for follicular lymphoma? What chemo regimen is being recommended for you?

REPLY

Hello,
I am new to this group and so appreciate what others have shared. I am in a quandary. I was diagnosed with FL 3 months ago due to one enlarged lymph node below my left jaw, otherwise, I am completely asymptomatic. Two needle biopsies confirmed lymphoma cells and the node excision confirmed FL.
My oncologist suggested Wait and Watch until my PET scan, follow-up bone scans and MRIs show multiple bony lesions in my spine, hips and pelvis. Again, I have no pain anywhere! However, due to the lesions chemo is recommended to hopefully put me in remission. Like other comments above, my team describes this as a chronic condition that will always need watching and is not terminal.
I am curious if any others have bony lesions with FL who decided to continue to Wait and Watch?
BTW, my labs are all good, including calcium and creatine, but they started giving me calcium injections last month to reduce fracture risk.
Thank you, Everyone!

REPLY
@loribmt

@dani349. I’m a firm believer that knowledge is power. The article I recommended is a good primer for information from a credible source to let you know a little more about your condition. But not everything mentioned in it will be directed at you…it’s more of an overall educational article.

You don’t have to worry that you’re not staged. I’d look at it as a good thing…it hasn’t progressed to the point of even being staged or needing any treatment. From what I’m reading with your posts, you have a great doctor who is concerned and not dismissive. You have labs at reasonable intervals to keep an eye out for any possible changes. CLL/SLL develop very slowly and some patients never have to be treated. By checking your labs your doctor will look for trends in the results. Seldom does one test determine a diagnosis. I know it can be unnerving waiting to see blood results and you’ll most likely be antsy each time. I’ve had literally hundreds of blood tests over the past 5 years. Each one is a mystery trip! But if there’s something skewed, then I talk to my doctor and we work it out together. I fear nothing anymore except…heights. Still not a fan of being on the edge of a cliff. ☺️

There are so many amazing treatment options of CLL. I’ve shared this story before with other members. There’s a young neighbor next door who developed CLL sometime in his 20s. He found that out after he and his wife were married. It was 10 years before he needed to begin a daily pill form medication and of course he was scared! He’s been on that about 5 years now and doing fabulous! He and his wife have 4 little kids! He’s out there daily, jogging, riding bikes, playing football…nothing slows this man down! It’s that way for most people who have SLL or CLL. They get treatment and recover. You really don’t need to live in fear of this disease. Yes, it’s a ‘cancer’ word but it is one of the most highly treatable forms of this disease. ‘’Stuff’ happens and we learn to face it head on…deal with things as they come but don’t let the fear of the unknown destroy the amazing life you have right now! Fear just robs us of our precious time!

I want to share a bit of my life with you. I want to infuse you with hope!
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

I hope today is filled with positive energy for you!

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@loribmt thank you thank you ! This makes me feel sooo much better !!🧡🤎🤗

REPLY
@dani349

@loribmt I should not have read that healthline article . It kind of made me worry because I haven't been given a stage . So I that a good or bad thing?

Jump to this post

@dani349. I’m a firm believer that knowledge is power. The article I recommended is a good primer for information from a credible source to let you know a little more about your condition. But not everything mentioned in it will be directed at you…it’s more of an overall educational article.

You don’t have to worry that you’re not staged. I’d look at it as a good thing…it hasn’t progressed to the point of even being staged or needing any treatment. From what I’m reading with your posts, you have a great doctor who is concerned and not dismissive. You have labs at reasonable intervals to keep an eye out for any possible changes. CLL/SLL develop very slowly and some patients never have to be treated. By checking your labs your doctor will look for trends in the results. Seldom does one test determine a diagnosis. I know it can be unnerving waiting to see blood results and you’ll most likely be antsy each time. I’ve had literally hundreds of blood tests over the past 5 years. Each one is a mystery trip! But if there’s something skewed, then I talk to my doctor and we work it out together. I fear nothing anymore except…heights. Still not a fan of being on the edge of a cliff. ☺️

There are so many amazing treatment options of CLL. I’ve shared this story before with other members. There’s a young neighbor next door who developed CLL sometime in his 20s. He found that out after he and his wife were married. It was 10 years before he needed to begin a daily pill form medication and of course he was scared! He’s been on that about 5 years now and doing fabulous! He and his wife have 4 little kids! He’s out there daily, jogging, riding bikes, playing football…nothing slows this man down! It’s that way for most people who have SLL or CLL. They get treatment and recover. You really don’t need to live in fear of this disease. Yes, it’s a ‘cancer’ word but it is one of the most highly treatable forms of this disease. ‘’Stuff’ happens and we learn to face it head on…deal with things as they come but don’t let the fear of the unknown destroy the amazing life you have right now! Fear just robs us of our precious time!

I want to share a bit of my life with you. I want to infuse you with hope!
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

I hope today is filled with positive energy for you!

REPLY
@loribmt

Hi @Dani359, I hope I can offer you some information and reassurance about your diagnosis of CLL/SLL. Both are a common form of non-Hodgkin’s lymphoma…a slow growing cancer in the immune system of the body. CLL occurs when the cancer cells are found in the blood, while SLL occurs when they are found in the lymph nodes. CLL can progress to SLL as cancer cells grow and spread.

I know that sounds frightening as heck! But this is very slow to develop. Doctors tend not to treat in the early stages because it has been shown not to add any benefit. And treatments for both are the same. None of this means the end of the world though. The watch and wait period, or active surveillance is a good thing. It means nothing is changing rapidly. Even having a 3 month period between labs is a good indication that things aren’t changing rapidly.
This is a good informational article to read about your condition:
https://www.healthline.com/health/sll/symptoms-treatment-sll

I’d also like you to read through this thread (posted below) in another discussion with, @joeeduffy and myself, about her husband’s early diagnosis of CLL. She was also very frightened about the unknown. Keep reading through several of the comments because they’re filled with great information about CLL and that you don’t have to fear this condition. As others in the forum have said, “This is something you’ll die with, not from.”
~https://connect.mayoclinic.org/comment/1007608/
~https://connect.mayoclinic.org/comment/1007740/

It’s important to fill your mind with forward thinking and positivity and to live each day to the fullest. Please try not to think of negative ‘what if’ thoughts…bad energy there! 😉I know, I sound like the good fairy but I’ve lived through a very aggressive and difficult form of leukemia…that was 5 years ago. Now I’m healthy and cancer free…no meds! So let’s get you in a good place with this, ok?

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@loribmt I should not have read that healthline article . It kind of made me worry because I haven't been given a stage . So I that a good or bad thing?

REPLY
@loribmt

Hi @Dani359, I hope I can offer you some information and reassurance about your diagnosis of CLL/SLL. Both are a common form of non-Hodgkin’s lymphoma…a slow growing cancer in the immune system of the body. CLL occurs when the cancer cells are found in the blood, while SLL occurs when they are found in the lymph nodes. CLL can progress to SLL as cancer cells grow and spread.

I know that sounds frightening as heck! But this is very slow to develop. Doctors tend not to treat in the early stages because it has been shown not to add any benefit. And treatments for both are the same. None of this means the end of the world though. The watch and wait period, or active surveillance is a good thing. It means nothing is changing rapidly. Even having a 3 month period between labs is a good indication that things aren’t changing rapidly.
This is a good informational article to read about your condition:
https://www.healthline.com/health/sll/symptoms-treatment-sll

I’d also like you to read through this thread (posted below) in another discussion with, @joeeduffy and myself, about her husband’s early diagnosis of CLL. She was also very frightened about the unknown. Keep reading through several of the comments because they’re filled with great information about CLL and that you don’t have to fear this condition. As others in the forum have said, “This is something you’ll die with, not from.”
~https://connect.mayoclinic.org/comment/1007608/
~https://connect.mayoclinic.org/comment/1007740/

It’s important to fill your mind with forward thinking and positivity and to live each day to the fullest. Please try not to think of negative ‘what if’ thoughts…bad energy there! 😉I know, I sound like the good fairy but I’ve lived through a very aggressive and difficult form of leukemia…that was 5 years ago. Now I’m healthy and cancer free…no meds! So let’s get you in a good place with this, ok?

Jump to this post

@loribmt thank you so much for the information. So I didn't update my status, but my lab work that came back indicated that I was in the intermediate risk group which means I would need treatment between 1-5 years.

REPLY
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