1. < Blood Cancers & Disorders

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.

Shahrokh | @shahroch13 | Jul 19, 2022

My name is Shahrokh, I/m 72 years old and was diagnosed with MZL October 2021, and have been on Watch & Wait ever since.
My white blood count was higher than normal and has been increasing ever since. I have been symptom free.
Anyone else with MZL?

REPLY
Bob, Alumni Mentor | @grandpabob | Dec 28, 2020
In reply to @susanlim "Hi —there seem to be no responses to the Transformed Lymphoma group I tried to start...." + (show)
@susanlim

Hi —there seem to be no responses to the Transformed Lymphoma group I tried to start. Thank you also Colleen and Bob. As it turned out the transformed DLBCL was eradicated by the R-CHOP with only a marginal amount of the Follicular Lymphoma remaining. This underscores the importance of a biopsy as the only reliable means of diagnosis. So now I am on maintenance Rituxumab (4x per year) the coming 2 years. And a return to watch and wait with the FL. So a much better outcome than it seemed!

Jump to this post

@susanlim - so clad the R-Chop worked for you. It is so good the hear the success stories.
I encourage you to keep in touch on connect as there are a lot of good people who scan the posts and may be able to offer some support.

Take care.

Bob

REPLY
susanlim | @susanlim | Dec 28, 2020
In reply to @grandpabob "@susanlim Hello Susan, I can certainly relate to your feeling terrified and devastated. Fortunately, it seems..." + (show)
@grandpabob

@susanlim Hello Susan,

I can certainly relate to your feeling terrified and devastated. Fortunately, it seems there is still a treatment plan for you. Your path seems to be similar to what I encountered, though mine was much shorter, it all transpired in a few months. (My case was not a Transformed case).

I was diagnosed with large B cell Lymphoma, which i was told had a high rate of treatment success with some of the conventional treatments. Unfortunately for me, that was simply not the case.

After several types of chemo, which were not successful nor was a stem cell transplant an option due to the aggressive malignancy, Car T was the last possible treatment for me.

I had the Car T infusion Aug 1 2018, and am happy to say that the Cancer is in remission at this point in time.

I hope this bit of information will relieve some stress and confirm there still may be treatment options available.

I am not familiar if there is a discussion thread specific to “Transformed Lymphoma” on the site.

I encourage you to keep in touch on Mayo Connect (If you are comfortable doing so) and invite you to check out the Car T group on Mayo Clinic Connect which may be an added source of information for you.

I am hoping you receive the best of news on Thursday.

Jump to this post

Hi —there seem to be no responses to the Transformed Lymphoma group I tried to start. Thank you also Colleen and Bob. As it turned out the transformed DLBCL was eradicated by the R-CHOP with only a marginal amount of the Follicular Lymphoma remaining. This underscores the importance of a biopsy as the only reliable means of diagnosis. So now I am on maintenance Rituxumab (4x per year) the coming 2 years. And a return to watch and wait with the FL. So a much better outcome than it seemed!

REPLY
1 reply
rip | @rip | Dec 28, 2020

I worry more and sleep less. Hug my dog more

REPLY
Amanda Burnett | @amandaa | Dec 28, 2020
In reply to @rip "I feel good these days. New oncologist says I need nothing now, will see him again..." + (show)
@rip

I feel good these days. New oncologist says I need nothing now, will see him again in April 2021.

Jump to this post

@rip That is wonderful news. I hope that nothing else occurs. Has any part of your daily regimen changed since getting the diagnosis and now on the watch and wait?

REPLY
rip | @rip | Dec 28, 2020
In reply to @gingerw "@rip Good morning, and welcome to Mayo Connect. May I ask what treatment you had received..." + (show)
@gingerw

@rip Good morning, and welcome to Mayo Connect. May I ask what treatment you had received that made you ill? It must have been quite the experience to do a few treatments, then stop. How do you feel these days?
Ginger

Jump to this post

I feel good these days. New oncologist says I need nothing now, will see him again in April 2021.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 26, 2020
In reply to @rip "I had two treatments, they made me so sick I quit. New doctor now, on watch..." + (show)
@rip

I had two treatments, they made me so sick I quit. New doctor now, on watch and wait since April 2020

Jump to this post

@rip Good morning, and welcome to Mayo Connect. May I ask what treatment you had received that made you ill? It must have been quite the experience to do a few treatments, then stop. How do you feel these days?
Ginger

REPLY
1 reply
rip | @rip | Dec 26, 2020

I had two treatments, they made me so sick I quit. New doctor now, on watch and wait since April 2020

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 13, 2020
In reply to @garciard1 "@travelgirl - Any changes in your watch and wait approach? I was just diagnosed with Small..." + (show)
@garciard1

@travelgirl - Any changes in your watch and wait approach? I was just diagnosed with Small Lymphocytic Lymphoma and my doc has suggested the same approach.

Jump to this post

@garciard1 Welcome to Mayo Connect! We are not medical professionals here, but we are fellow patients, caregivers, or family members. We share our experiences and strength, to help others on their journeys in health.

Like you, I was recently diagnosed with a blood cancer called Multiple Myeloma, which affects the plasma cells of my blood. And like you, I am a "watch and wait" approach, getting tested every three months. My oncologist is a well-trained guy, and very matter of fact. There are specific components he is watching, and does not want to start until we have to, because of other health issues I have. It is like waiting for the other shoe to drop.

Here is an awesome article from the leukemia society in Australia, that talks about your small cell lymphoma. You will see that it is often grouped with chronic lymphocytic lymphoma. https://www.leukaemia.org.au/blood-cancer-information/types-of-blood-cancer/lymphoma/non-hodgkin-lymphoma/small-lymphocytic-lymphoma/

Also, @1nan may have some input to offer you.
Ginger

REPLY
RDG | @garciard1 | Nov 13, 2020

@travelgirl - Any changes in your watch and wait approach? I was just diagnosed with Small Lymphocytic Lymphoma and my doc has suggested the same approach.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.